1 - Tomorrow is the long awaited (at least it has seemed long) appointment to see a knee surgeon
2 - Tomorrow is supposed to be the biggest snow storm this area has seen in years
3 - Tomorrow we have to drive 1.5 hours to get to the appointment
Sense the problem? Of course dad is taking me and dad doesnt cancel things for silly reasons like snow, you just go where you have to go and get back to where you should be. We have been on roads that were closed directly behind us, driven in showstorms where you can only go like 10km/h so this is no big deal either. So instead of just being insanely nervous about this appointment tomorrow and how it is going to go, I also have to prepare just in case for the snow. I have an 'emergency' kit packed (PJ's, extra underwear and socks, granola bars and will take extra meds) and ready to go but dad figures we will just drive through it :S
Wish us luck! Hopefully I can update tomorrow with how the appointment went.
Monday, January 31, 2011
Tuesday, January 25, 2011
Knee Saga - Part Three
This all happened in the span of about a month, a really really bad month - November 2004. This will be in point form as I am getting the details off of my old blog instead of going into all the crap again.
Oct 22nd - Find out Dr. F will not be doing the surgery, it will be Dr. G, decide to make an appointment to see Dr. G before he operates on me.
Nov 9th - Appointment with Dr. G, decides that he doesnt think the surgery is needed and that my issues are the tendon and not the bursa. Tells me he will get me in within the week for an emergent MRI and that I might have surgery in 3 - 4 weeks to repair the tendon.
Nov 13th - Find out Dr. G didn't write a referal for an urgent MRI, just to have one within 3 - 4 weeks, even though he told me surgery would be in 3 - 4 weeks. Had to call around to the receptionist and MRI place to get anything figured out as I was going away for the weekend and wanted things figured out. Told me to call first thing on the monday as they had openings next week.
Nov 15th - Find out that Dr. G has to call MRI place to get an urgent MRI as he had not marked the request as a pre-surgical MRI. Get a lot of attitude from Dr. G's secretary
Nov 16th - Scheudled surgery date.
Nov 18th - MRI date scheduled - decided that I do not go to major doctor appointments alone anymore as they do not take me seriously.
Nov 19th - Went to get painkillers from my GP to take during the MRI, got tylenol based pills which because of my allergy, the pharmacy could not fill.
Nov 21st - MRI done
Nov 22nd - Told I have an appointment in a week to see Dr. G, get mad at that as he wanted an urgent MRI but wants me to wait a week for an appointment. Receptionist tells me that they got me in within a week for the MRI so I shouldn't complain and then another secretary tells me 'This is why Dr. G likes to see new patients before operating on them' to which I told them that I was the one who wanted the appointment.
Nov 31st - Follow-up appointment with Dr. G. Says I harrassed his secretary (I called twice), told the MRI department he was a liar (he basically was), refused to let me speak and when I did get a chance to talk and state that I trust Dr. F so why was he saying that Dr. F was wrong and he accused me of manipulating him, that I should be lucky the surgery just wasn't cancelled instead of getting transfered to a new OS, he told me surgery was not needed and walked out of the room. My dad was able to ask two questions. 1) What is the visible lump on my knee (yup it's bursitis) and 2) What treatment we should be seeking (he would send us a list of alternate OS's).
It took my GP months to get a copy of the actual MRI report that stated that I had bursitis and a tear in my patellar tendon. This was just a very bad time as I had planned on going back to school for a fifth year (I graduated in April of '04, was going back for a second degree but ended up having to stop because of health issues), had put off looking for a job, had moved back home to have it done and just put my life on hold to have this surgery done. Then I got an arrogant jackass of an OS who made my life hell for a month!
That is about all I want to write about this part of my saga. It was a very bad time and I got very depressed becasue of it.
Oct 22nd - Find out Dr. F will not be doing the surgery, it will be Dr. G, decide to make an appointment to see Dr. G before he operates on me.
Nov 9th - Appointment with Dr. G, decides that he doesnt think the surgery is needed and that my issues are the tendon and not the bursa. Tells me he will get me in within the week for an emergent MRI and that I might have surgery in 3 - 4 weeks to repair the tendon.
Nov 13th - Find out Dr. G didn't write a referal for an urgent MRI, just to have one within 3 - 4 weeks, even though he told me surgery would be in 3 - 4 weeks. Had to call around to the receptionist and MRI place to get anything figured out as I was going away for the weekend and wanted things figured out. Told me to call first thing on the monday as they had openings next week.
Nov 15th - Find out that Dr. G has to call MRI place to get an urgent MRI as he had not marked the request as a pre-surgical MRI. Get a lot of attitude from Dr. G's secretary
Nov 16th - Scheudled surgery date.
Nov 18th - MRI date scheduled - decided that I do not go to major doctor appointments alone anymore as they do not take me seriously.
Nov 19th - Went to get painkillers from my GP to take during the MRI, got tylenol based pills which because of my allergy, the pharmacy could not fill.
Nov 21st - MRI done
Nov 22nd - Told I have an appointment in a week to see Dr. G, get mad at that as he wanted an urgent MRI but wants me to wait a week for an appointment. Receptionist tells me that they got me in within a week for the MRI so I shouldn't complain and then another secretary tells me 'This is why Dr. G likes to see new patients before operating on them' to which I told them that I was the one who wanted the appointment.
Nov 31st - Follow-up appointment with Dr. G. Says I harrassed his secretary (I called twice), told the MRI department he was a liar (he basically was), refused to let me speak and when I did get a chance to talk and state that I trust Dr. F so why was he saying that Dr. F was wrong and he accused me of manipulating him, that I should be lucky the surgery just wasn't cancelled instead of getting transfered to a new OS, he told me surgery was not needed and walked out of the room. My dad was able to ask two questions. 1) What is the visible lump on my knee (yup it's bursitis) and 2) What treatment we should be seeking (he would send us a list of alternate OS's).
It took my GP months to get a copy of the actual MRI report that stated that I had bursitis and a tear in my patellar tendon. This was just a very bad time as I had planned on going back to school for a fifth year (I graduated in April of '04, was going back for a second degree but ended up having to stop because of health issues), had put off looking for a job, had moved back home to have it done and just put my life on hold to have this surgery done. Then I got an arrogant jackass of an OS who made my life hell for a month!
That is about all I want to write about this part of my saga. It was a very bad time and I got very depressed becasue of it.
Monday, January 24, 2011
That makes sense!
Well in going through and posting my knee saga, I just did the write up about my last two knee surgeries. I was going through and remembering details and remembered how I would get severe muscle cramps in my calf's after my second surgery. We went out and bought heat patches and had to be very careful as I couldn't use a heating pad and had to watch what medications I took. Well it now all makes sense! It is the same reaction I had after having my wisdom teeth out! When I had my wisdom teeth out I had such severe muscle cramps in my calves that we actually ended up in the Emergency Room getting tests done and getting an injection of pain medications. I am now very curious to find out if they gave me a local anesthetic during my last surgery. It would make sense as they knew we had a long (a little over an hour) drive to get home and were giving me medications so I would make it home comfortably. I bet a shot of a local was done as well to keep it numb for a few hours. At that time we didn't know about the EDS and we also had no clue about the reactions I have to local anesthetics! I can't believe it took so long to figure that out. Now I know that if I have to have surgery again in the big city we will have to make sure that no locals are used!
Knee Saga - Part Two
These were the 'good' years *sigh* This will be from summer of 2001 until the fall of 2004.
This continues basically exactly where part one left off. I was doing physio during the summer and mentioning how frustrated I was getting and one of the physiotherapists suggested I contact this clinic that was in the teaching hospital about an hour away from here (from here on out it will be mentioned as the 3FK). This place will see you even without a doctor's referal. It is a teaching hospital so generaly you go and see the bottom run of doctors, they asses you and then determine if you area a surgical cause or if things can be done and sent to the next level of doctors. Finally, you get to the orthapedic surgeon (OS) to discuss your problems. This first time through I saw the first level doctor and got sent straight up to the leading surgeon of 3FK (the place is named by him, he brought the scope to Canada), instead of having going through the second phase, I just went straight to the head surgeon.
I believe it wasn't until around November that I saw Dr F for the first time. He did a very in depth physical and kept pointing things out to the student in the room. I was wearing a sweatshirt from the University I attended and it just so happened that the clinic was on the campus of our rival University. He was always making jokes about that, like that I seemed so smart, why did I go to 'my university'. He would always have to check my chart to see my history but could always remember the school I went to. During the first visit we even found out that the doctor who did my dad's neck fusions actually trained under Dr. F so that really put us all at ease. He did the physical, ordered xrays (they have an xray clinic right there to do them) and declared that a Lateral Release was the absolute worse thing that could have been done as it made my knee more unstable both medially and laterally instead of just laterally like it was before surgery. He definitly wanted to do surgery but he wasn't sure what he would be doing until he got in and saw the knee so he booked surgery for the spring and we would have a consultation shortly after that.
I had the first surgery on March 22nd, 2002. Dr Fowler was great, and the hospital was much nicer and more compassionate than our local one. My parents were allowed to stay with me up until 30 minutes before the operation. They let us stay just outside the pre-op room until I had to be taken in and prepared for it. I will always remember that for this operation I had to go to the bathroom constantly! The nurses were even joking about it with me. Everything went according to plan and we found out later that just a basic scope with some debridment was done. When I was coming round I was shocked as they allowed family into the post-op area to be there while you were waking up. As it was just a basic surgery there wasn't much to do post-op as I already had crutches, was shown proper crutch use pre-op (they had physiotherapy students come to patients pre-op to discuss the use of crutches) and was not wearing any type of brace, just had a few steri-strips covering the 2 small holes that were made. There was to be no discharge instructions as the gave me a few painkillers in case I needed them ( I didn't after the first night) and I didn't have to go to physiotherapy for anything. I was drugged up really well and sent on my way 'home'. I was living at my aunt's house while going to University so my mom and dad came for the weekend and then dad had to go home to work but mom stayed with me for the following week to get me too and from school and just help me out as my aunt was away on vacation that week.
We had the follow-up appointment that was very short and simple. He could dislocate my right knee both laterally and medially with just his pinkie applying minimal pressure. What surprised him was that he could also dislocate my LEFT knee medially and laterally with just slightly more pressure. I told him that Dr. S wanted to do both knees at once and he just gave me a look and told me it was good that I didn't and that he had never heard of an OS doing fairly major surgery on both knees at the same time unless absolutly necessary! He told us that another surgery was necessary and although it would help, it would only get my back to the place I was before all the operations were done. At that point that sounded great to me. So we scheduled another operation. I gave him some 'suggestions' as to when it would be best to be done (IE after the first of may and with enough time left of summer that I could recover) so I wouldn't hvae to miss out on any school which he was more than fine with and agreed. We got a call shortly after stating that my surgery date would be June 13th.
We get there on the 13th pretty confident as we already knew all the procedures with this hospital. One thing that I remember the most is that we were done in a room in the basement waiting for staff to show up (they did mine first in the morning as they knew we were traveling) and the phone rang so dad picked it up and gave the person on the other end instructions on how to get there!! Mom and I were just mortified! Just after he hung up a nurse came in and all three of us just started laughing. Anyways, they get me set up in the pre-op area, had the pysiotherapist come down to go over crutches and the braces I would have. The nurses recognized me from last time and one came over to apologize! Apparently the last time I had to go to the bathroom so much was becasue they had the IV full open instead of dripping! They realized it after everything had been disconnected. Again nothing big happened, my parents were allowed to stay in the pre-op room then I was taken in. I find out later that my parents had gone down to the cafeteria to get some coffee (they didn't drink anything in front of me because it didn't seem fair) and ran in to Dr. F getting some breakfast! Dad and Dr. F got along really well so they exchanged a few jokes then dad told him to get going so we could go home soon lol.
I woke up in the post-op area and Dr. F was there talking to another patient. He came over to me and asked how I was doing and I said that it hurt. I will never forget this! His reply? "It will stop hurting when the pain goes away". Said all seriously and I took it seriously and thought it made sense, until the drugs left my system lol. This surgery was a lot different than the last and we had a lot more to discuss in the post-op area before we could go home. I found out that he performed a Lateral Repair, which basically just undid the Lateral Release that was done previously. I was in an immobolizer (that looked something like that picture) completely with blood stains on it as it is put on right after surgery, still in the operating room. I was given a perscription for pain medications, follow-up appointment dates and they talked a lot to my parents. I was in a great deal of pain so they loaded me up with pain killers and let us go home. It was an hour drive home and I honestly don't even remember how we got home. I know we took the van so I could stretch out but I was basically gone. We got home and my parents had rearranged things so that our pull-out couch was brought upstairs for me to sleep on (I have a waterbed and was in the basemenet, my parents wanted me closer) so I crawled into the bed and fell asleep.
The next day was pure hell!! My parents were giving me pain killers every 4 hours, took turns sleeping on the recliner in the living room with me and kept ice on it. About a week later I was getting really itchy and just 'yucky' with the immoblizer and was supposed to go back to the city (an hour away) just to get the stitches cut! My dad called and talked with the receptionist first and asked if he could do the stitches himself. She didn't know about that so had Dr. F call dad back later. Dad explained that he had taken many first aid and first responder courses through his job and that he felt confident just snipping the stitches and that I was okay with letting him do so. Dr. F agreed that it was silly to drive an hour to have something so simple done and gave dad the go ahead to take the immobolizer off, clean the skin and do the stitches. Dad took me in the back in the sun (I hadn't been outside since the surgery) and very carefully cut the stiches so they could work their way out, cleaned all the iodine off my skin (the reason it was done outside is that he cleaned it with rubbing alcohol, the pure stuff, not the stuff in drugstores!) and just let my leg get some air.
We went back to the clinic to get it looked at and I was then allowed to move into my post-op brace. I was to keep it at around 30 degrees for 4 weeks and then move to 90 degrees for 4 weeks then I could be out of it. Well ROM was never a problem. As soon as I got the brace allowing for 30 degrees, I was bending my leg 30 degress, same with the 90. I was given the option at the end of an extra two weeks in the brace without crutches, or two weeks without the brace with crutches. I took the crutches!! The brace was very uncomfortable and kept slipping down my leg making it even worse. Eventually everthing healed up pretty good and we were all very happy with the results. I was back at school in September with no crutches and could get around as well as everyone else. I did have to stay in physio for a good long time but it wasn't too bad.
Well my knee didn't like being 'good'. Around the fall of 2003 I developed both Tendonitis and Bursitits in my right knee. I did physio, wore a knee strap and tried everything. Went back to Dr. F and he did a cortisone shot in the tendon and that helped a bit but I did have a small reaction to it. Eventually it was decided that I would need a fourth operation, a bursectomy. It was a very uncommon procedure, there was no guarantee that it would work but it was something he thought might help which was all I needed to hear. However, life got in the way...
This continues basically exactly where part one left off. I was doing physio during the summer and mentioning how frustrated I was getting and one of the physiotherapists suggested I contact this clinic that was in the teaching hospital about an hour away from here (from here on out it will be mentioned as the 3FK). This place will see you even without a doctor's referal. It is a teaching hospital so generaly you go and see the bottom run of doctors, they asses you and then determine if you area a surgical cause or if things can be done and sent to the next level of doctors. Finally, you get to the orthapedic surgeon (OS) to discuss your problems. This first time through I saw the first level doctor and got sent straight up to the leading surgeon of 3FK (the place is named by him, he brought the scope to Canada), instead of having going through the second phase, I just went straight to the head surgeon.
I believe it wasn't until around November that I saw Dr F for the first time. He did a very in depth physical and kept pointing things out to the student in the room. I was wearing a sweatshirt from the University I attended and it just so happened that the clinic was on the campus of our rival University. He was always making jokes about that, like that I seemed so smart, why did I go to 'my university'. He would always have to check my chart to see my history but could always remember the school I went to. During the first visit we even found out that the doctor who did my dad's neck fusions actually trained under Dr. F so that really put us all at ease. He did the physical, ordered xrays (they have an xray clinic right there to do them) and declared that a Lateral Release was the absolute worse thing that could have been done as it made my knee more unstable both medially and laterally instead of just laterally like it was before surgery. He definitly wanted to do surgery but he wasn't sure what he would be doing until he got in and saw the knee so he booked surgery for the spring and we would have a consultation shortly after that.
I had the first surgery on March 22nd, 2002. Dr Fowler was great, and the hospital was much nicer and more compassionate than our local one. My parents were allowed to stay with me up until 30 minutes before the operation. They let us stay just outside the pre-op room until I had to be taken in and prepared for it. I will always remember that for this operation I had to go to the bathroom constantly! The nurses were even joking about it with me. Everything went according to plan and we found out later that just a basic scope with some debridment was done. When I was coming round I was shocked as they allowed family into the post-op area to be there while you were waking up. As it was just a basic surgery there wasn't much to do post-op as I already had crutches, was shown proper crutch use pre-op (they had physiotherapy students come to patients pre-op to discuss the use of crutches) and was not wearing any type of brace, just had a few steri-strips covering the 2 small holes that were made. There was to be no discharge instructions as the gave me a few painkillers in case I needed them ( I didn't after the first night) and I didn't have to go to physiotherapy for anything. I was drugged up really well and sent on my way 'home'. I was living at my aunt's house while going to University so my mom and dad came for the weekend and then dad had to go home to work but mom stayed with me for the following week to get me too and from school and just help me out as my aunt was away on vacation that week.
We had the follow-up appointment that was very short and simple. He could dislocate my right knee both laterally and medially with just his pinkie applying minimal pressure. What surprised him was that he could also dislocate my LEFT knee medially and laterally with just slightly more pressure. I told him that Dr. S wanted to do both knees at once and he just gave me a look and told me it was good that I didn't and that he had never heard of an OS doing fairly major surgery on both knees at the same time unless absolutly necessary! He told us that another surgery was necessary and although it would help, it would only get my back to the place I was before all the operations were done. At that point that sounded great to me. So we scheduled another operation. I gave him some 'suggestions' as to when it would be best to be done (IE after the first of may and with enough time left of summer that I could recover) so I wouldn't hvae to miss out on any school which he was more than fine with and agreed. We got a call shortly after stating that my surgery date would be June 13th.
We get there on the 13th pretty confident as we already knew all the procedures with this hospital. One thing that I remember the most is that we were done in a room in the basement waiting for staff to show up (they did mine first in the morning as they knew we were traveling) and the phone rang so dad picked it up and gave the person on the other end instructions on how to get there!! Mom and I were just mortified! Just after he hung up a nurse came in and all three of us just started laughing. Anyways, they get me set up in the pre-op area, had the pysiotherapist come down to go over crutches and the braces I would have. The nurses recognized me from last time and one came over to apologize! Apparently the last time I had to go to the bathroom so much was becasue they had the IV full open instead of dripping! They realized it after everything had been disconnected. Again nothing big happened, my parents were allowed to stay in the pre-op room then I was taken in. I find out later that my parents had gone down to the cafeteria to get some coffee (they didn't drink anything in front of me because it didn't seem fair) and ran in to Dr. F getting some breakfast! Dad and Dr. F got along really well so they exchanged a few jokes then dad told him to get going so we could go home soon lol.
I woke up in the post-op area and Dr. F was there talking to another patient. He came over to me and asked how I was doing and I said that it hurt. I will never forget this! His reply? "It will stop hurting when the pain goes away". Said all seriously and I took it seriously and thought it made sense, until the drugs left my system lol. This surgery was a lot different than the last and we had a lot more to discuss in the post-op area before we could go home. I found out that he performed a Lateral Repair, which basically just undid the Lateral Release that was done previously. I was in an immobolizer (that looked something like that picture) completely with blood stains on it as it is put on right after surgery, still in the operating room. I was given a perscription for pain medications, follow-up appointment dates and they talked a lot to my parents. I was in a great deal of pain so they loaded me up with pain killers and let us go home. It was an hour drive home and I honestly don't even remember how we got home. I know we took the van so I could stretch out but I was basically gone. We got home and my parents had rearranged things so that our pull-out couch was brought upstairs for me to sleep on (I have a waterbed and was in the basemenet, my parents wanted me closer) so I crawled into the bed and fell asleep.
The next day was pure hell!! My parents were giving me pain killers every 4 hours, took turns sleeping on the recliner in the living room with me and kept ice on it. About a week later I was getting really itchy and just 'yucky' with the immoblizer and was supposed to go back to the city (an hour away) just to get the stitches cut! My dad called and talked with the receptionist first and asked if he could do the stitches himself. She didn't know about that so had Dr. F call dad back later. Dad explained that he had taken many first aid and first responder courses through his job and that he felt confident just snipping the stitches and that I was okay with letting him do so. Dr. F agreed that it was silly to drive an hour to have something so simple done and gave dad the go ahead to take the immobolizer off, clean the skin and do the stitches. Dad took me in the back in the sun (I hadn't been outside since the surgery) and very carefully cut the stiches so they could work their way out, cleaned all the iodine off my skin (the reason it was done outside is that he cleaned it with rubbing alcohol, the pure stuff, not the stuff in drugstores!) and just let my leg get some air.
We went back to the clinic to get it looked at and I was then allowed to move into my post-op brace. I was to keep it at around 30 degrees for 4 weeks and then move to 90 degrees for 4 weeks then I could be out of it. Well ROM was never a problem. As soon as I got the brace allowing for 30 degrees, I was bending my leg 30 degress, same with the 90. I was given the option at the end of an extra two weeks in the brace without crutches, or two weeks without the brace with crutches. I took the crutches!! The brace was very uncomfortable and kept slipping down my leg making it even worse. Eventually everthing healed up pretty good and we were all very happy with the results. I was back at school in September with no crutches and could get around as well as everyone else. I did have to stay in physio for a good long time but it wasn't too bad.
Well my knee didn't like being 'good'. Around the fall of 2003 I developed both Tendonitis and Bursitits in my right knee. I did physio, wore a knee strap and tried everything. Went back to Dr. F and he did a cortisone shot in the tendon and that helped a bit but I did have a small reaction to it. Eventually it was decided that I would need a fourth operation, a bursectomy. It was a very uncommon procedure, there was no guarantee that it would work but it was something he thought might help which was all I needed to hear. However, life got in the way...
Thursday, January 20, 2011
Knee Saga - Part One
I will start this where the official treatment and such starts. I was in grade 9 (fall 1995) when I first went to my family doctor about my knee hurting. It felt unstable, weak and significant pain while doing gym. He sent me to my first orthopedic surgeon (more on him later) Dr. S. He looked at it, played around with it and diagnosed me with 'chondromalacia patella'. He decided that as a treatment I should be going to physiotherapy for the issue and that is what would help the knee. I also got a note to get out of gym class for the rest of the semester as the sports we were doing would be too hard on my knee. I went to physiotherapy for around three months. After this time it seemed to be better so I was discharged with positive reports from the physiotherapist and the orthopedic surgeon.
Fast forward 4 years later (spring 2000) to the next stop on our knee journey. I was having the same issues as before so my GP sent me to physio and wrote me a letter for school so I would get an elevator key so I did not have to use the stairs (the school was 3 stories and I had my locker on the second floor, lunchroom on the first and most classes on the first or third floor). At the end of the year we asked my GP to send me back to Dr. S to look at my knee. This was probably one of the biggest mistakes of my life! Also, what dad and I remember about the story is nowhere near the same as Dr. S's reports back to my family doctor.
What really happened:
Dad and I went to see Dr. S in July. He did a physical exam, asked about my symptoms and we talked about the physiotherapy. He stated that my knees were not tracking (Patellofemoral Syndrome) properly and surgery would probably be likely to get the knee cap to become aligned again in the groove. He wanted to start me on medications (NSAIDS) for a month and see where we were at. Well I was heading to my first year of university around the beginning of september so that wasn't really going to work. Dad asked if there was something else we could try first and then try the medication route if needed in the future. He agreed to that and went about setting me up for a surgery date for him to perform a lateral release as he felt that would be our only option. At first he wanted to do both knees simultaniously but with my starting school shortly dad and I felt that that would not be a good idea so we picked my worst knee (the right) to do first and then once it was healed up we would proced with the other knee the following summer.
Surgery was done the first week of August and seemed to go well. Dr. S mentioned that my knees were very unstable (he could dislocate the knee easily) but that everything went perfectly and I should have no problems. After about three weeks of physiotherapy I was off to university and ready to go. However my knee wasn't so happy. I had to take a few friday's off first semester to go home and get Dr. S to look at my knee. He kept telling me "Once you can life 'x' pounds in a straight leg raise you will be great". Well 'x' kept getting bigger with each appointment and I was getting pretty frustrated. I had to apply at the special needs office at my school to get a parking permit (not handicap yet, just so that I would be able to park on campus and not on the roads surronding it). Around the end of second semester I went to see him and he decided that he was going to do a cortisone injection in it. As exams were coming up I asked that we do it at a later date. I had a week off between exams so I made a special trip home to get the shot. When I get there however, he decides that he does not want to do a cortisone shot in someone so young (19 at the time) and thinks I should go back into physiotherapy and that we would re-evaluate my knee at the end of the summer. Well, it's kind of hard to go the summer doing something you know won't help only to be told just before going back to school, that another operation may be needed. That was the last appointment that I ever had with that surgeon about my knee.
What we found out after:
For some reason, it was not until I went to see another orthopedic surgeon, did I even think to look at the reports that Dr. S had wrote up for my GP. Here are a list of the things that we found out:
(Coming soon)
Fast forward 4 years later (spring 2000) to the next stop on our knee journey. I was having the same issues as before so my GP sent me to physio and wrote me a letter for school so I would get an elevator key so I did not have to use the stairs (the school was 3 stories and I had my locker on the second floor, lunchroom on the first and most classes on the first or third floor). At the end of the year we asked my GP to send me back to Dr. S to look at my knee. This was probably one of the biggest mistakes of my life! Also, what dad and I remember about the story is nowhere near the same as Dr. S's reports back to my family doctor.
What really happened:
Dad and I went to see Dr. S in July. He did a physical exam, asked about my symptoms and we talked about the physiotherapy. He stated that my knees were not tracking (Patellofemoral Syndrome) properly and surgery would probably be likely to get the knee cap to become aligned again in the groove. He wanted to start me on medications (NSAIDS) for a month and see where we were at. Well I was heading to my first year of university around the beginning of september so that wasn't really going to work. Dad asked if there was something else we could try first and then try the medication route if needed in the future. He agreed to that and went about setting me up for a surgery date for him to perform a lateral release as he felt that would be our only option. At first he wanted to do both knees simultaniously but with my starting school shortly dad and I felt that that would not be a good idea so we picked my worst knee (the right) to do first and then once it was healed up we would proced with the other knee the following summer.
Surgery was done the first week of August and seemed to go well. Dr. S mentioned that my knees were very unstable (he could dislocate the knee easily) but that everything went perfectly and I should have no problems. After about three weeks of physiotherapy I was off to university and ready to go. However my knee wasn't so happy. I had to take a few friday's off first semester to go home and get Dr. S to look at my knee. He kept telling me "Once you can life 'x' pounds in a straight leg raise you will be great". Well 'x' kept getting bigger with each appointment and I was getting pretty frustrated. I had to apply at the special needs office at my school to get a parking permit (not handicap yet, just so that I would be able to park on campus and not on the roads surronding it). Around the end of second semester I went to see him and he decided that he was going to do a cortisone injection in it. As exams were coming up I asked that we do it at a later date. I had a week off between exams so I made a special trip home to get the shot. When I get there however, he decides that he does not want to do a cortisone shot in someone so young (19 at the time) and thinks I should go back into physiotherapy and that we would re-evaluate my knee at the end of the summer. Well, it's kind of hard to go the summer doing something you know won't help only to be told just before going back to school, that another operation may be needed. That was the last appointment that I ever had with that surgeon about my knee.
What we found out after:
For some reason, it was not until I went to see another orthopedic surgeon, did I even think to look at the reports that Dr. S had wrote up for my GP. Here are a list of the things that we found out:
- Dad and I 'forced' him into doing surgery before trying conservative therapy
- During surgery they found bone fragments that had to be sent to pathology
- The surgery report stated that another, more involved, tracking surgery would most likely be needed
- After every office visit to him he states that he discharged me from his practice
- Each report stated basically that I was back 'again' complaining about my knee
- I tried to pressure him into giving me a cortisone injection, which he refused based on age
- That I was not following his physiotherapy plan
(Coming soon)
Tuesday, January 18, 2011
February 1st!
Wow... I was getting concerned as to how I was going to deal with this knee issue while waiting to get into a good hospital setting in the largest city near us (a little over an hour drive to get there). It sucks to be in this much pain constantly after having a few years when my pain levels are tolerable without having to rely on breakthrough meds that often. However, since I injured my knee my pain levels are considerably higher. Thankfully Dr. W (Rheumy) realizes this and did not even hesitate to order up an extra fill on my breakthrough meds (including instructions to have them call him if they have any concerns about filling it more frequently than usual). I am getting sick of the not being able to do much but that's not to annoying because I generally don't even feel like doing much.
What I am tired of is the just not knowing what's going on. Did I mess up the old surgeries? Did I injure the other side of the knee? The ACL? Meniscuc? Tendon? Will I require more surgery? or even more daunting is the Will I be told that there is nothing to do for it and it will just take time to 'heal'. This isnt a normal injury, I know that but will I be able to get a new doctor who isn't familiar with my knee history or medical history to listen to me?
Anyways, dad woke me up around noonish telling me that I got a call and I am going to see Dr. F (Orthopedic Surgeon) at the clinic I used to go to, what date, at what time, to show up 30 minutes early, what to bring etc. I had to ask again what the date was as I was sure I heard it wrong! I go on the first of februaury! I see Dr. F, not Dr. M who my rheumy had sent the referal to, have to get copies of my recent x-rays and take shorts and a t-shirt. Will have to get in touch with the local hospital nearer the end of the week so I can get a digital copy of my x-rays with the radiologists report (not sure if it would be done yet so waiting a few days).
I realize that I have a very large knee history. I have decided that I will start posting my knee saga. It will be in many parts as it is pretty long (many dr's, 3 operations, a cancelled operation etc). I will try to start at the beginning and move on until up to the latest injury.
What I am tired of is the just not knowing what's going on. Did I mess up the old surgeries? Did I injure the other side of the knee? The ACL? Meniscuc? Tendon? Will I require more surgery? or even more daunting is the Will I be told that there is nothing to do for it and it will just take time to 'heal'. This isnt a normal injury, I know that but will I be able to get a new doctor who isn't familiar with my knee history or medical history to listen to me?
Anyways, dad woke me up around noonish telling me that I got a call and I am going to see Dr. F (Orthopedic Surgeon) at the clinic I used to go to, what date, at what time, to show up 30 minutes early, what to bring etc. I had to ask again what the date was as I was sure I heard it wrong! I go on the first of februaury! I see Dr. F, not Dr. M who my rheumy had sent the referal to, have to get copies of my recent x-rays and take shorts and a t-shirt. Will have to get in touch with the local hospital nearer the end of the week so I can get a digital copy of my x-rays with the radiologists report (not sure if it would be done yet so waiting a few days).
I realize that I have a very large knee history. I have decided that I will start posting my knee saga. It will be in many parts as it is pretty long (many dr's, 3 operations, a cancelled operation etc). I will try to start at the beginning and move on until up to the latest injury.
Monday, January 17, 2011
Some good news and knee update
Still haven't heard anything about my knee which is really starting to bother me. I have looked through all of my old braces and the majority are tracking braces which do me no good. They are ones that my old old OS and PTists ordered that have the hole cut out for the patella and different support structures. However my last OS told me that I should not wear those as when I would wear them, my knee would be a lot worse and the braces would start slipping down my leg and actually pull my knee out while it was going down. I do have my large post-op hinged brace but it is so big that I really don't want to wear it. It was bad enough wearing it for 8 weeks after the last surgery. I did break down and went in to the larger drugstore in town today to look at braces but the only one I could see that wouldn't case more damage was just a compression slip on type of wrap. I got it as it has to be easier than trying to keep my knee wrapped in an ace bandage while making sure none of the 'rubber' on the edges of the ace bandage touches my skin. I don't need anymore scars on this knee!
Mom wants me to call Dr. W's office (check out the 'Doctor's' tab at the top to see each doctor's specialty) to ask what I should do next. Well what is that going to do? All they could really tell me is if something showed up on the xrays or not and I would hope that if something did show up, then they would call me to let me know. He is a rheumy so he doesnt deal with structural issues in joints, just rheumatic issues. So I just keep sitting and waiting. Going out today I couldn't even use my crutch because my left wrist is acting up again and I already know my knee is shot, I don't want my wrist to get worse becasue I am protecting my knee (I refuse joint sacrifices!). I just wish it wouldn't be such a long wait to get into the OS I am going to see, but as he is in a big teaching hospital I will just have to wait to know I will get someone good (Since I have been told that no OS in my hometown will even touch me so staying here is not an option!).
Okay, good news - The one and only medication that I was having to pay out of pocket for monthly is now covered under my disability coverage :) That means all my medications are covered at a very very low cost which definitly helps with the money issues. I also just got off the phone with Dr. B and got an appointment scheduled within 10 days of my surgery (dental) date. I also see Dr. W that week so will have to get a note from him about the best way to position my body during surgery so my knee isn't put in a position that will agrevate it even more than it already is! Just waiting on finding out when the pre-admin appointment is and then we will be ready to go. Just have to figure out which doctor is the one that perscribes the antibiotic pre-op and how I discretly ask the nurse to give me an ativan the day of the surgery (had it given to me once so I could 'calm down', dad nor I thought I was agitated so not sure why I got it, but for the first surgery ever the IV was easy to place and didn't hurt near as much as it normally does)
Mom wants me to call Dr. W's office (check out the 'Doctor's' tab at the top to see each doctor's specialty) to ask what I should do next. Well what is that going to do? All they could really tell me is if something showed up on the xrays or not and I would hope that if something did show up, then they would call me to let me know. He is a rheumy so he doesnt deal with structural issues in joints, just rheumatic issues. So I just keep sitting and waiting. Going out today I couldn't even use my crutch because my left wrist is acting up again and I already know my knee is shot, I don't want my wrist to get worse becasue I am protecting my knee (I refuse joint sacrifices!). I just wish it wouldn't be such a long wait to get into the OS I am going to see, but as he is in a big teaching hospital I will just have to wait to know I will get someone good (Since I have been told that no OS in my hometown will even touch me so staying here is not an option!).
Okay, good news - The one and only medication that I was having to pay out of pocket for monthly is now covered under my disability coverage :) That means all my medications are covered at a very very low cost which definitly helps with the money issues. I also just got off the phone with Dr. B and got an appointment scheduled within 10 days of my surgery (dental) date. I also see Dr. W that week so will have to get a note from him about the best way to position my body during surgery so my knee isn't put in a position that will agrevate it even more than it already is! Just waiting on finding out when the pre-admin appointment is and then we will be ready to go. Just have to figure out which doctor is the one that perscribes the antibiotic pre-op and how I discretly ask the nurse to give me an ativan the day of the surgery (had it given to me once so I could 'calm down', dad nor I thought I was agitated so not sure why I got it, but for the first surgery ever the IV was easy to place and didn't hurt near as much as it normally does)
Monday, January 10, 2011
Dental Surgery Date
Well I just got a call from my dentist office with my date for my anesthetic consult. Because of the issues I have (asthma, heart, neck, TMJ etc) I always have to do an anesthetic consult to go over everything with them and discuss the issues I have. I have to tell them that not a single local anesthetic can be used for any reason (horrible reaction to them and they don't even do any freezing!), how to position my joints properly so I don't end up in a lot of pain (not sure what we are going to do about the knee this time through....) and how I am hard to get an IV in and that I bruise really really easily so they have to be gentle.
Anyways that appointment is made for February 18th and surprisingly she had the surgery date all lined up as well for March 9th! Never thought I would get in that quickly. She doesnt have a time but as Dr. M has me write down that I have a latex 'allergy' (sensativity but they never seem to get that so he tells them it's an allergy) that I get done first thing in the morning. But they will tell me when my time slot is when they call to schedule the pre-op appointment. Just have to make an appointment with my family doctor and everything is all set up. Oh and I have to figure out who I go to to perscribe my pre-dental surgery antibiotic, then everything will be done!
Now hopefully news about my OS referal will come just as quickly!!
Anyways that appointment is made for February 18th and surprisingly she had the surgery date all lined up as well for March 9th! Never thought I would get in that quickly. She doesnt have a time but as Dr. M has me write down that I have a latex 'allergy' (sensativity but they never seem to get that so he tells them it's an allergy) that I get done first thing in the morning. But they will tell me when my time slot is when they call to schedule the pre-op appointment. Just have to make an appointment with my family doctor and everything is all set up. Oh and I have to figure out who I go to to perscribe my pre-dental surgery antibiotic, then everything will be done!
Now hopefully news about my OS referal will come just as quickly!!
Sunday, January 9, 2011
Getting Grumpy and Step Two
Well, Shoppers was having a point deal on today so mom and I decided to go in to town to check out a specific store. With my knee not healing and feeling so unstable it was finaly decdied that I need a shower seat. Shoppers did not have one so we headed over to Walmart where I bit the bullet and bought the things I will probably need while waiting for an appointment with the new rothopedic surgeon: a shower seat, traction bath mat, ice pack's with holders and a pair of jogging pants as the only pants I have that I can comfortable wear are yoga pants and it is way too cold out for yoga pants!! We did a bit more running around and I made sure to use my crutch. Not just using it for balance, but actually putting weight through it and my knee didn't hurt near as much as it did last time I went out. So going to rely more on the crutch when out and see if that helps.
Got home and dad built the seat and got it all positioned in place. Then we checked out the studs in the bathroom to look at putting a shelf on the side that I can reach while on the seat and possibly another grab bar at the front of the shower to help me get up safely. It kinda sucks as I am only 29 years old and the only other person I know of that has a shower seat is my grandma!
I forgot to add something!! My mom gets it. She really really is starting to get it and looking at things that will help me. I went and picked up some sugar-free hard candies to keep in my purse for when I get dry-mouth (what is causing a lot of the dental issues). I wanted sugar-free for obvious reasons. Mom than says 'I don't know why you want sugar-free, haven't we already proven that you need sugar fixes to get you through the day?' Well that got my really really thinking. As I was walking (well hobbling with my crutch) back to get the normal versions of the candy I got thinking that she made a very valid point. I get dry mouth it seems almost the same time I get the autonomic issues. Got to wondering if I get dry mouth because with the autonomic issues, my body gets dehydrated (is the dry mouth autonomic or medication based?) and all level's go haywire (mainly sugar levels) and something sugary generally helps. So mom made a very good connection that when I have dry-mouth issues might be at times when I actually need the sugar in my system. Kinda blew me away that she thought of this and I didn't!
Got home and dad built the seat and got it all positioned in place. Then we checked out the studs in the bathroom to look at putting a shelf on the side that I can reach while on the seat and possibly another grab bar at the front of the shower to help me get up safely. It kinda sucks as I am only 29 years old and the only other person I know of that has a shower seat is my grandma!
I forgot to add something!! My mom gets it. She really really is starting to get it and looking at things that will help me. I went and picked up some sugar-free hard candies to keep in my purse for when I get dry-mouth (what is causing a lot of the dental issues). I wanted sugar-free for obvious reasons. Mom than says 'I don't know why you want sugar-free, haven't we already proven that you need sugar fixes to get you through the day?' Well that got my really really thinking. As I was walking (well hobbling with my crutch) back to get the normal versions of the candy I got thinking that she made a very valid point. I get dry mouth it seems almost the same time I get the autonomic issues. Got to wondering if I get dry mouth because with the autonomic issues, my body gets dehydrated (is the dry mouth autonomic or medication based?) and all level's go haywire (mainly sugar levels) and something sugary generally helps. So mom made a very good connection that when I have dry-mouth issues might be at times when I actually need the sugar in my system. Kinda blew me away that she thought of this and I didn't!
Thursday, January 6, 2011
Rheumatologist Visit
Well I had my 'emergency' appointment with my rheumatologist today. I apologized for having to make one but he said that yes, I needed to come in and see him for sure. As soon as he heard that I have not dislocated that knee since I had surgery on it years ago, he started asking about the surgeries. I told him that Dr. S did the first one and that I would refuse to deal with him again and that Dr. F did the last two. He then asked if Dr. F was still practicing and I told him that no, he no longer was in practice (as an aside I joked with mom about how why would he ask if Dr. F still practiced. Obviously if he was still practicing I would have been seeing him and not the rheumy). He then said 'Dr. M is very good, have you seen him before?' I said I hadn't so he started going about writing up a referal to him. Mom quickly interjected and asked if this was a [local town] doctor or a [close-ish larger town with teaching hospital] doctor (I honestly don't feel comfortable having any ortho type surgery in my home town any more) and he assured us that he was at the teaching hospital as that is where he think I would get the best care.
He wrote up the referal while I was sitting right there and had my input into the letter. He wrote the history down, gave the EDS diagnosis and asked him to 'evaluate and treat as he saw needed'. I then asked what I should be doing in the mean time as I know that to get in to a doctor there takes a while (which I am more than willing to wait as I know I will get much better care there!). I told him that I can put weight through my knee but I don't know if I should be or not. He asked when I last had x-rays and I told him that I hadn't had any done since I injured it. He didn't look happy :( and I felt guilty as it looked as if he thought I should have gone to the ER with it (more about that later). So he quickly wrote up a referal to get x-rays and then had me get up on the table and lie down. He asked where the pain was and asked if he could examine it (he knows that his examinations hurt me later so always asks first, which with him, I would let him play with my joints any time as I know he is doing it to help me and not to just see the 'circus tricks'). He said he thinks there is something going on underneath my knee cap but that he believes it is okay for me to weight bear on it (I am using one crutch outside the house and just 'limping' inside the house as everything is pretty close). However he wants me to restrict my walking as much as possible. This little old man of a doctor, who has had both hips replaced and obviously has some arthritis then gives me his hands to help me to sit up and get off the table.
Then was the part I didn't really know how to bring up. He always gives me 'X' pills that last 3 months until my next appointment. I have never run out of them and usually have a few left over at the end of the 3 months (I see him every 3 months). Well there was no way that the X pills would last me this 3 months with the frequency I have needed them with the knee dislocation. And being the great doctor that he is, he grabs his perscription pad and asks me what I want. Then we get to quantity and he tells me he will just do as normal and give me X pills. He then says that the pharmasist may have to call him to 'over-ride' this but thats no problem because he knows I don't abuse them and that my pharmacy knows I don't abuse them so it would just be red tape that has to be jumped through but not to worry about it. And that was the appointment in a nut shell. I am really fortunate to have this guy as my doctor, he is great to me and has done more for me in the time I have seen him than most all of my other doctors put together!
Oh, funny thing is that when we first got in the room he asked if he could tell us a story. Seems he had this lady come in and he was doing an exam and she put her hands on the table and a light went off above his head and that she has EDS! He has diagnosed two other people with EDS since me and credits me for those diagnosises as if I wasn't a patient and had given him so much literature he would have never picked up on it. Definitly made me feel good :)
As for the ER. Mom and I have decided that at my next appointment we should broach the subject of ER visits. Becasue of the EDS and the Osteoporosis, I have to be very careful and today was the second time that I have gone to him with a recent injury that he wanted x-rays done ASAP. I have decided that I want to get a letter from him stating the following: a) that I have EDS and Osteoporosis b) that x-rays may be necessary to rule out urgent issues c) the medications I am on and have been on since ____ (so I'm not a drug seeker) d) that I do actually dislocate and then reduce my own dislocations (most wouldn't believe that I really did dislocate my knee because it went back in) and e) that reductions in me can not be handled the same was as reductions in normal people. We also want to talk to him about what my actions should be in different situations. Should I go to the ER and get it checked, should I wait and get into see him or is there something different he would want me to do. I hate calling up asking to get in asap becasue of an injury when I know the office is booked. They have been great to me and have told me both times that I have needed an urgent appointment that it was a needed appointment. I would just like to have a plan of attack so there is no extra worrying on my end (stress does me in big time). And seeing today that it seemed that he thought I should have already had x-rays made me wonder where I draw that line about going to the ER.
Anways, we went right to the hospital after the visit so I could get x-rays done. I am going to glow in the dark! I have had 5 x-rays done in 24 hours lol (dentist and knee). Unfortuantly with these x-rays they had to bend and situate the knee to get the picture they needed and it was very uncomfortable and painful. However, the lady doing the x-rays asked about EDS and wondered if that is what her daughter has as she has been told she is hypermobile and has to be careful. So she wrote down the name to take home and look up. How cool is that! After the x-rays we came straight home. We were going to go to Shoppers Home Health to look for a shower seat but after Dr. W playing with my knee and having the x-rays done, I was done. I was in a lot of pain to the point that I was feeling nauseated from it all.
Come home to find that K is having a rough day too. He broke down in the middle of a test he was doing and told his teacher that he really missed our old dog and didn't like our new one. Not sure where that came from as Toby has been dead for 2.5 years and we have had Tazzy for 1.5 years. We think it's just him upset about the situation with his friends (long story short he finally found a local friend to play with, as well as his younger brother but the kids were removed from their house for a pretty flimsy and stupid reason so they are in foster care temporarily. K got to see them over the holidays but not to say good-bye to them.) Then at Karate he got really upset because Sensei told them they were going to be sparring which he was so happy about so he went to put on his cup and realized he forgot to put underwear on (????) but that was fixed but when he went to put his mouthguard in it didn't fit and he was gagging on it. Dad was so worried about getting the fit for the teeth and having K not play with it that K never had it in long enough to realize that the sides go so far back that it is activating his gag reflex. Because of the rules his Sensei could not let him spar without a mouth guard (and he felt bad about it too) and poor K sat with us and crying and sobbing through the entire thing. I suggested we go home which mom got mad about but I just didn't want the kids to make fun of him and she thought I was getting mad at him which was not the case. He calmed down near the end and his Sensei called him over and gave him a little talk and he was happier. He did get to play the end game which was his choice as he was 'birthday boy' (they get to wear the birthday belt the week of their birthday. As there were no classes on his birthday he got to wear the belt this week). So he went in and took his cup off (apparently not very comfortable to wear if you aren't wearing underwear then came out and the played a game of crab soccer. After the class when we were gathering things up Mr. R came over to talk to us and told K that he had the exact same problem with his mouth guard and it always made him gag so he cut the sides down on it as it only really has to protect your front teeth and that he knew that it was a hard thing to get used to but that he eventually would. Mr R is an amazing teacher who we think has a very large soft spot for K and is so encouraging to him. So K felt better about that, then Sensei came over and apologized and said he had to follow the rules to which mom said she knew and that she wouldn't have let him go out without a mouth guard anyways with all the issues we have had with his teeth. So it ended okay. Went and got him a milk shake and headed home.
We stopped at Shoppers so I could run in the perscription and told the pharmasist (who knows me quite well) that I didn't need the script filled but if she could put it on hold, that I know I have a lot of the other ones but with the dislocated knee my doctor gave me another perscription and she completed the sentance 'in case I ran out' and I told her that if she needed to he understands she might have to call (didn't sound like she would have to though). Got a few things, came home, watched "Wipeout" with K for a bit and then watched a few episodes of "The Big Bang Theory" with mom. And that completely rounds up my day.
He wrote up the referal while I was sitting right there and had my input into the letter. He wrote the history down, gave the EDS diagnosis and asked him to 'evaluate and treat as he saw needed'. I then asked what I should be doing in the mean time as I know that to get in to a doctor there takes a while (which I am more than willing to wait as I know I will get much better care there!). I told him that I can put weight through my knee but I don't know if I should be or not. He asked when I last had x-rays and I told him that I hadn't had any done since I injured it. He didn't look happy :( and I felt guilty as it looked as if he thought I should have gone to the ER with it (more about that later). So he quickly wrote up a referal to get x-rays and then had me get up on the table and lie down. He asked where the pain was and asked if he could examine it (he knows that his examinations hurt me later so always asks first, which with him, I would let him play with my joints any time as I know he is doing it to help me and not to just see the 'circus tricks'). He said he thinks there is something going on underneath my knee cap but that he believes it is okay for me to weight bear on it (I am using one crutch outside the house and just 'limping' inside the house as everything is pretty close). However he wants me to restrict my walking as much as possible. This little old man of a doctor, who has had both hips replaced and obviously has some arthritis then gives me his hands to help me to sit up and get off the table.
Then was the part I didn't really know how to bring up. He always gives me 'X' pills that last 3 months until my next appointment. I have never run out of them and usually have a few left over at the end of the 3 months (I see him every 3 months). Well there was no way that the X pills would last me this 3 months with the frequency I have needed them with the knee dislocation. And being the great doctor that he is, he grabs his perscription pad and asks me what I want. Then we get to quantity and he tells me he will just do as normal and give me X pills. He then says that the pharmasist may have to call him to 'over-ride' this but thats no problem because he knows I don't abuse them and that my pharmacy knows I don't abuse them so it would just be red tape that has to be jumped through but not to worry about it. And that was the appointment in a nut shell. I am really fortunate to have this guy as my doctor, he is great to me and has done more for me in the time I have seen him than most all of my other doctors put together!
Oh, funny thing is that when we first got in the room he asked if he could tell us a story. Seems he had this lady come in and he was doing an exam and she put her hands on the table and a light went off above his head and that she has EDS! He has diagnosed two other people with EDS since me and credits me for those diagnosises as if I wasn't a patient and had given him so much literature he would have never picked up on it. Definitly made me feel good :)
As for the ER. Mom and I have decided that at my next appointment we should broach the subject of ER visits. Becasue of the EDS and the Osteoporosis, I have to be very careful and today was the second time that I have gone to him with a recent injury that he wanted x-rays done ASAP. I have decided that I want to get a letter from him stating the following: a) that I have EDS and Osteoporosis b) that x-rays may be necessary to rule out urgent issues c) the medications I am on and have been on since ____ (so I'm not a drug seeker) d) that I do actually dislocate and then reduce my own dislocations (most wouldn't believe that I really did dislocate my knee because it went back in) and e) that reductions in me can not be handled the same was as reductions in normal people. We also want to talk to him about what my actions should be in different situations. Should I go to the ER and get it checked, should I wait and get into see him or is there something different he would want me to do. I hate calling up asking to get in asap becasue of an injury when I know the office is booked. They have been great to me and have told me both times that I have needed an urgent appointment that it was a needed appointment. I would just like to have a plan of attack so there is no extra worrying on my end (stress does me in big time). And seeing today that it seemed that he thought I should have already had x-rays made me wonder where I draw that line about going to the ER.
Anways, we went right to the hospital after the visit so I could get x-rays done. I am going to glow in the dark! I have had 5 x-rays done in 24 hours lol (dentist and knee). Unfortuantly with these x-rays they had to bend and situate the knee to get the picture they needed and it was very uncomfortable and painful. However, the lady doing the x-rays asked about EDS and wondered if that is what her daughter has as she has been told she is hypermobile and has to be careful. So she wrote down the name to take home and look up. How cool is that! After the x-rays we came straight home. We were going to go to Shoppers Home Health to look for a shower seat but after Dr. W playing with my knee and having the x-rays done, I was done. I was in a lot of pain to the point that I was feeling nauseated from it all.
Come home to find that K is having a rough day too. He broke down in the middle of a test he was doing and told his teacher that he really missed our old dog and didn't like our new one. Not sure where that came from as Toby has been dead for 2.5 years and we have had Tazzy for 1.5 years. We think it's just him upset about the situation with his friends (long story short he finally found a local friend to play with, as well as his younger brother but the kids were removed from their house for a pretty flimsy and stupid reason so they are in foster care temporarily. K got to see them over the holidays but not to say good-bye to them.) Then at Karate he got really upset because Sensei told them they were going to be sparring which he was so happy about so he went to put on his cup and realized he forgot to put underwear on (????) but that was fixed but when he went to put his mouthguard in it didn't fit and he was gagging on it. Dad was so worried about getting the fit for the teeth and having K not play with it that K never had it in long enough to realize that the sides go so far back that it is activating his gag reflex. Because of the rules his Sensei could not let him spar without a mouth guard (and he felt bad about it too) and poor K sat with us and crying and sobbing through the entire thing. I suggested we go home which mom got mad about but I just didn't want the kids to make fun of him and she thought I was getting mad at him which was not the case. He calmed down near the end and his Sensei called him over and gave him a little talk and he was happier. He did get to play the end game which was his choice as he was 'birthday boy' (they get to wear the birthday belt the week of their birthday. As there were no classes on his birthday he got to wear the belt this week). So he went in and took his cup off (apparently not very comfortable to wear if you aren't wearing underwear then came out and the played a game of crab soccer. After the class when we were gathering things up Mr. R came over to talk to us and told K that he had the exact same problem with his mouth guard and it always made him gag so he cut the sides down on it as it only really has to protect your front teeth and that he knew that it was a hard thing to get used to but that he eventually would. Mr R is an amazing teacher who we think has a very large soft spot for K and is so encouraging to him. So K felt better about that, then Sensei came over and apologized and said he had to follow the rules to which mom said she knew and that she wouldn't have let him go out without a mouth guard anyways with all the issues we have had with his teeth. So it ended okay. Went and got him a milk shake and headed home.
We stopped at Shoppers so I could run in the perscription and told the pharmasist (who knows me quite well) that I didn't need the script filled but if she could put it on hold, that I know I have a lot of the other ones but with the dislocated knee my doctor gave me another perscription and she completed the sentance 'in case I ran out' and I told her that if she needed to he understands she might have to call (didn't sound like she would have to though). Got a few things, came home, watched "Wipeout" with K for a bit and then watched a few episodes of "The Big Bang Theory" with mom. And that completely rounds up my day.
Wednesday, January 5, 2011
Dentist Visit and Breif Knee Update
Well I was concerned (but almost slightly hopefull) that surgery was going to be in the future. I had even mentioned to friends that if a Dr said that we could try surgery x on joint a then I would jump on it just so something could be tried. I am even nervous right now about my emergency appointment with my Rheumatologist tomorrow as I don't know how that is going to go surgery wise (Did I mess up the old ones? Will a new one have to be done? Could a new one actually help? Will I even find someone who would perform one?). Wasn't expecting to be signed up for my 7th surgery in 10 years today. Today was the visit with my dentist.
The hygenist called me in, asked what I did to my knee (I use a crutch outside of the house) and got me in the chair and comfortable for my knee. I was due for x-rays so two were done. She came in and used a water pick to clean the teeth then went in for the cleaning. She was really nice, took lots of breaks so I could readjust my jaw (I had taken two Robax before I went and it definitly helped!) and we talked about the EDS and I asked her about the little bump on my upper left gum that I was wondering if it was a stitch. Then the Dentist came in. I hate dentists, lets get that out first off but I do love MY dentist. He is so good. He looked at my x-rays and said that I needed a 'tune up' and my heart just dropped. He must have seen so as he quickly came around and clarified that it was not my fault, that we were 'fighting a losing battle' and that the problems are not because of any lack of dental care, it's the medications. Mainly the ones that cause me to have a dry mouth as that is one of the main issues as to why they issues are happening. My upper right back two teeth have small minimal cavities in them (or pre-cavities) and one of my bottom front teeth has a few small chips that could easily turn into cavities. He again stated that it was not my fault and that he knew that and that we will probably be doing dental surgery every 1 - 2 years because of the EDS issues and medication issues. He stated that he knew I was doing good with my dental hygeine because if I was lacking in any way there would be a whole lot more issues going on. The places that are causing issues right now are right at the gumline which makes it even harder to clean. By the time I left the room I was not upset about it as he made sure that I knew that I was doing well and that this was to be expected.
So in the next month or two I will be going in for surgery. This will be my 7th in 10 years (knee in '00, '02, '02; teeth in '04, '08, '09) which does suck but I would rather have this proactive dentist who realizes I am doing all that I can and that he expects the issues I have and wants to get things fixed the second they come about so things dont get worse. I got my pamphlet of pre-op papers but have to wait until I get a date before I fill them out and make all the appointments (pre-op, family dr and anesthetic) that need to be done before the surgery date. Well there is not much more to say really about the teeth stuff.
My knee is still doing pretty badly but I go tomorrow to get it looked at. I never went to the ER after I dislocated it as I figured there was no reason. X-rays weren't really needed as I knew the knee was back in place, I had better pain meds than they would have given me and I already had crutches and knew the whole RICE thing. I figured that between Christmas and New Years that my Rheumy would be out of the office so I called in on Tuesday.
I talked to Mary first and introduced myself and gave the small spiel of what had happened and asked if I should come in. As soon as I mentioned that I hadn't dislocated the knee since the surgeries and that it was still pretty painful and I just didn't know if I should be weight bearing or what I should be doing. She told me that I definitly should come in and she would transfer me so I could make an appointment. I get to talk to May next and she had a cancellation just come up for next monday so put me in there. I thanked her and said I basically wanted to know if I should stay off it (like all the medical literature says) or if I should do the partial weight bearing (limping) that I had been doing. I then had to go through the story with her again and she then tells me that I definitly needed to come in and that she was flagging me so that the first cancelled appointment slot would go to me. She called today and they have and opening for tomorrow so I go in tomorrow morning to see my Rheumy and find out what is going on.
I don't know what else to say about it. It hurts and I am afraid of what is going to happen. If he says that it's fine.... well then what am I supposed to do with it and how are we going to prevent it happening again. If it's not fine and something needs to be done...... who? I have already seen the two OS's he deals with and really don't want to go with either of them. The first one is a total ass that I refuse to deal with (He did my first knee surgery which has led to all of the problems I have had) the second one has told me right out that no surgeon in my home town will even touch me after three operations and the fact that a very high up OS did my last two surgeries. I honestly don't know which outcome I am hoping for?
The hygenist called me in, asked what I did to my knee (I use a crutch outside of the house) and got me in the chair and comfortable for my knee. I was due for x-rays so two were done. She came in and used a water pick to clean the teeth then went in for the cleaning. She was really nice, took lots of breaks so I could readjust my jaw (I had taken two Robax before I went and it definitly helped!) and we talked about the EDS and I asked her about the little bump on my upper left gum that I was wondering if it was a stitch. Then the Dentist came in. I hate dentists, lets get that out first off but I do love MY dentist. He is so good. He looked at my x-rays and said that I needed a 'tune up' and my heart just dropped. He must have seen so as he quickly came around and clarified that it was not my fault, that we were 'fighting a losing battle' and that the problems are not because of any lack of dental care, it's the medications. Mainly the ones that cause me to have a dry mouth as that is one of the main issues as to why they issues are happening. My upper right back two teeth have small minimal cavities in them (or pre-cavities) and one of my bottom front teeth has a few small chips that could easily turn into cavities. He again stated that it was not my fault and that he knew that and that we will probably be doing dental surgery every 1 - 2 years because of the EDS issues and medication issues. He stated that he knew I was doing good with my dental hygeine because if I was lacking in any way there would be a whole lot more issues going on. The places that are causing issues right now are right at the gumline which makes it even harder to clean. By the time I left the room I was not upset about it as he made sure that I knew that I was doing well and that this was to be expected.
So in the next month or two I will be going in for surgery. This will be my 7th in 10 years (knee in '00, '02, '02; teeth in '04, '08, '09) which does suck but I would rather have this proactive dentist who realizes I am doing all that I can and that he expects the issues I have and wants to get things fixed the second they come about so things dont get worse. I got my pamphlet of pre-op papers but have to wait until I get a date before I fill them out and make all the appointments (pre-op, family dr and anesthetic) that need to be done before the surgery date. Well there is not much more to say really about the teeth stuff.
My knee is still doing pretty badly but I go tomorrow to get it looked at. I never went to the ER after I dislocated it as I figured there was no reason. X-rays weren't really needed as I knew the knee was back in place, I had better pain meds than they would have given me and I already had crutches and knew the whole RICE thing. I figured that between Christmas and New Years that my Rheumy would be out of the office so I called in on Tuesday.
I talked to Mary first and introduced myself and gave the small spiel of what had happened and asked if I should come in. As soon as I mentioned that I hadn't dislocated the knee since the surgeries and that it was still pretty painful and I just didn't know if I should be weight bearing or what I should be doing. She told me that I definitly should come in and she would transfer me so I could make an appointment. I get to talk to May next and she had a cancellation just come up for next monday so put me in there. I thanked her and said I basically wanted to know if I should stay off it (like all the medical literature says) or if I should do the partial weight bearing (limping) that I had been doing. I then had to go through the story with her again and she then tells me that I definitly needed to come in and that she was flagging me so that the first cancelled appointment slot would go to me. She called today and they have and opening for tomorrow so I go in tomorrow morning to see my Rheumy and find out what is going on.
I don't know what else to say about it. It hurts and I am afraid of what is going to happen. If he says that it's fine.... well then what am I supposed to do with it and how are we going to prevent it happening again. If it's not fine and something needs to be done...... who? I have already seen the two OS's he deals with and really don't want to go with either of them. The first one is a total ass that I refuse to deal with (He did my first knee surgery which has led to all of the problems I have had) the second one has told me right out that no surgeon in my home town will even touch me after three operations and the fact that a very high up OS did my last two surgeries. I honestly don't know which outcome I am hoping for?
Tuesday, January 4, 2011
2010 in Review (Medically at least)
I saw someone else's blog where they broke down the appointments and tests that they had done last year. I got the calendar out and decided to go through it. Here are my dates:
January 28th - Internist Visit - Starting on the journey to figure out the sweating issues
February 5th - Full Pulmonary Function Test (Results showed normal values)
February 12th - Part One of full blood work done (Results showed normal values)
February 14th - First 24 hour Urine Collection (Results showed normal values)
February 15th - Second 24 hour Urine Collection (Results showed normal values)
February 16th - Part Two of full blood work done (Results showed normal values)
February 18th - Rheumatologist visit - Cortisone Injection Done
February 26th - Internist visit - Reviewed current tests, more tests scheduled
March 8th - Bone Scan done (Results showed changes in wrists and shoulder)
March 15th - 24 hour Holter Monitor Done (Results showed minor issues, not associated with sweats)
March 16th - Family Doctor Visit - Antibiotics perscribed
March 29th - MRI of right shoulder done
April 9th - Rheumatologist visit - Review of MRI, referal to Orthopedic Surgeon
June 2nd - Bloodwork done for Cardiologist appointment
June 16th - Cardiologist visit (reduce beta blockers, very upset by treatment, orders more bloodwork)
July 2nd - Rheumatologist visit (talk about conference, get meds ready for summer)
July 15th - 18th - EDNF Conference in Baltimore
Jully 16th - Consult with another Internist - Autonomic Dysfunction confirmed, meds suggested
August 5th - Rheumatologist Visit - Talk about Conference, orders DEXA, perrscribes nerve pain med
August 12th - Orthopedic Surgeon Visit - Decides it's a neck problem, not shoulder
August 24th - Internist Visit - Agrees with info from Conference, agrees to be cardio, orders MRI
September 2nd - DEXA Scan (Results show Osteoporosis)
September 7th - Optomitrist Visit - Persscription glasses changed, slight pressure elevation
September 14th - Family Doctor Visit - Confirms Osteoporosis, orders med for Dysautonomia
September 16th - Rheumatologist Visist - Medication renewal
September 19th - Head and Neck MRI
September 21st - Spine and Neck X-rays
September 26th - First dose of osteopososis medication
October 21st - Emergency Visit to Rheumatologist - Bad wrist dislocation, possible fracture
October 21st - XRays of Left Wrist (Results show no fracture)
November 9th - Neurologist Visit - Autonomic Issues Confirmed, Herniation not surgical, med suggested
December 2nd - Rheumatologist Visit - Pain meds changed, Ring Splints Rxed, Suggested Study Participant
December 16th - Family Doctor Visit - Perscribed antibiotics (lung, ear, throat, sinus infection)
18 Doctor Appointments
13 Different Tests Done
I was diagnosed with Osteoporosis, Autonomic Dysfunction, POTS, Bursitis in my Right Shoulder, Tendonitis in my Right Shoulder, and Nerve pain in my Right Shoulder.
I was started on three new medications for the Osteoporosis, Autonomic Issues and Nerve Pain. I also had medication levels altered on the heart medication and had my pain medications rotated.
January 28th - Internist Visit - Starting on the journey to figure out the sweating issues
February 5th - Full Pulmonary Function Test (Results showed normal values)
February 12th - Part One of full blood work done (Results showed normal values)
February 14th - First 24 hour Urine Collection (Results showed normal values)
February 15th - Second 24 hour Urine Collection (Results showed normal values)
February 16th - Part Two of full blood work done (Results showed normal values)
February 18th - Rheumatologist visit - Cortisone Injection Done
February 26th - Internist visit - Reviewed current tests, more tests scheduled
March 8th - Bone Scan done (Results showed changes in wrists and shoulder)
March 15th - 24 hour Holter Monitor Done (Results showed minor issues, not associated with sweats)
March 16th - Family Doctor Visit - Antibiotics perscribed
March 29th - MRI of right shoulder done
April 9th - Rheumatologist visit - Review of MRI, referal to Orthopedic Surgeon
June 2nd - Bloodwork done for Cardiologist appointment
June 16th - Cardiologist visit (reduce beta blockers, very upset by treatment, orders more bloodwork)
July 2nd - Rheumatologist visit (talk about conference, get meds ready for summer)
July 15th - 18th - EDNF Conference in Baltimore
Jully 16th - Consult with another Internist - Autonomic Dysfunction confirmed, meds suggested
August 5th - Rheumatologist Visit - Talk about Conference, orders DEXA, perrscribes nerve pain med
August 12th - Orthopedic Surgeon Visit - Decides it's a neck problem, not shoulder
August 24th - Internist Visit - Agrees with info from Conference, agrees to be cardio, orders MRI
September 2nd - DEXA Scan (Results show Osteoporosis)
September 7th - Optomitrist Visit - Persscription glasses changed, slight pressure elevation
September 14th - Family Doctor Visit - Confirms Osteoporosis, orders med for Dysautonomia
September 16th - Rheumatologist Visist - Medication renewal
September 19th - Head and Neck MRI
September 21st - Spine and Neck X-rays
September 26th - First dose of osteopososis medication
October 21st - Emergency Visit to Rheumatologist - Bad wrist dislocation, possible fracture
October 21st - XRays of Left Wrist (Results show no fracture)
November 9th - Neurologist Visit - Autonomic Issues Confirmed, Herniation not surgical, med suggested
December 2nd - Rheumatologist Visit - Pain meds changed, Ring Splints Rxed, Suggested Study Participant
December 16th - Family Doctor Visit - Perscribed antibiotics (lung, ear, throat, sinus infection)
18 Doctor Appointments
13 Different Tests Done
I was diagnosed with Osteoporosis, Autonomic Dysfunction, POTS, Bursitis in my Right Shoulder, Tendonitis in my Right Shoulder, and Nerve pain in my Right Shoulder.
I was started on three new medications for the Osteoporosis, Autonomic Issues and Nerve Pain. I also had medication levels altered on the heart medication and had my pain medications rotated.
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