I hadn't posted this yet as it was really bothering me and I just wanted to forget about it. But enough timw has passed now that I can finally see it as just another horrible doctors appointment. This appointment was made a few months ago by my GP because I had asked about what to do with my shoulder since my old Rhemy used to give me cortisone injections but my GP was set on me having no more cortisone shots because of my osteoporosis. I even had new xrays (right shoulder and hip and both knees) ahead of the appointment so we wouldn't waste any time for me having to get them done and have a follow-up appointment. Well it really didn't matter. We show up at the appointment and find a small waiting room, probably 10 chairs that were all full and there were about 4 people standing with no room left anywhere! That was the first hint that this might not go well.
After a very very long wait I was finally called to go back to a room, after another long wait the doctor (Dr. M) finally showed up. He comes in and introduces himself and then asks what I was there for. I told him for my shoulder and he asked me where it hurt. I showed him the general area and then he asked about my medical history. I tell him about the EDS and the osteoporosis and that I have many dislocations because of the EDS. He asks me what joints dislocate and this occurs:
Me - Well my shoulder has dislocated a few times
Dr. M - Documented?
Me - No, I can get it back by myself. I also dislocate my wrists quite frequently
Dr. M - Documented?
Me - No, I was taught how to put it back in
Dr. M - Anything else?
Me - I have dislocated my knee before but had surgery that helped it until I dislocated it last year
Dr. M - Documented?
Me - No, I have never had to go to the ER to get it put back in
Dr. M - Well, I will tell you now that you have never dislocated your wrist. Dislocating your wrist is a major trauma and you would have ended up in the ER becasue of it. You probably have not dislocated your knee either because you wouldn't be able to put it back in by yourself. Things like fingers can dislocate and go back in easy (as he points to his finger to make sure I know what a finger is?)
Me - I know my knee has dislocated, I have had 2 surgeons tell me that they could dislocate my knee cap with just their pinkie fingers
Dr. M - Well that is not a knee dislocation, that is just your kneecap moving out of place
At that point I figured that we would just forget about the dislocation aspect and try to go and get on to what was going on with my shoulder. He asks me where the shoulder hurts and I tell him (basically as if I had a bowl over my shoulder, that is where it hurts). He then says, well the MRI you had done shows that you have Rotator Cuff Tendonitis. It took me a minute to figure out what MRI he was talking about and then I realize that I had an MRI of my shoulder done at least 2 years ago when my neck and back were bothering me and they wanted to see if the shoulder played a part in this or not. I tried to explain this to Dr. M but he wouldn't listen. I told him that that MRI was done BEFORE I had the shoulder problems but he still said the tendonitis is what is causing my problems. I asked what about the dislocations, the new pain, the weakness to the point that it feels like my shoulder is going to just fall out of the joint, all of that he says is the tendonitis.
Around this point we got into a discussion about cortisone injections and he basically bashed my rheumy big time for ever giving me one! He went on and on about how they were not needed and the only time that they should be done is when one is in a lot of pain and the give them a cortisone shot to dull the pain so that the person can do physiotherapy. It was then that I mentioned that physio does not work for me and makes things very worse. I then mentioned that fact that I have had physiotherapist (PTists) that have refused to treat me because I become worse instead of better. He kinda almost laughed at that and said that obviously they didn't know what they were doing and asked where this had happened. I told him that I had about 4 PTists in three different cities all working on different joints that said this. He then goes in that the only thing that can be done about my shoulder is physio. I asked what the other options where and he tells me there is nothing and that I need to strengthen the other tendons and muscles in my shoulder to make them compensate for the bad tendon. I tell him that it is a very fine line in EDSers that you dont want to make your joints too strong because that can cause as many problems. He completely shut down that idea and told me that EDS does not affect the muscles (it was around this time that mom 'checked out' and knew that this appt wasnt going to end well). I disagreed with him and told him about the different talks at the confrence about muscles and physiotherapy and how these work (or dont work) in EDSers. Get this he then tells me................... "Maybe you should go to Baltimore and see a doctor there". I literally laughed and said if I had the money I would be on the first flight there.
We then get into this circular discussion about physio. I tell him that I had a full assesment at the hospital physiotherapy department and was found that all my joints and muscles were at the strengths that they should be and any more muscle building could be detremental. He than kinda smiled to himself again and basically insinuated that the hospital physiotherapy (the only one covered by OHIP) was worthless and meant nothing. He told me he wanted me to get into a private PT if I wanted to get good care (oh and of course he had the perfect PTists in mind - made me think he got a kick back for referals). I then tell him that the private PTist I have seen for years is actually the head of the hospital physio department. He said that I needed a good private PTists that could work on strength building exercises and resistance exercises (which are the no-no types for EDSers). Finally, to humour him, I said okay if I try the physio how long do I have to try it. He then says you can not put an end time to physio and it completely depended on progress. I said that that was not acceptable to me (and told him about my old OS and the knee physio debacle) and that I would try it only if it was for me to re-evaluate in 3 or 6 months. All I got was 'It doesnt work that way". I then said okay, if I try the physio and it doesnt work, then what is the next step. Then he switches his mind and says that there is no point me trying it because I have already concluded that it wasn't going to work. I said that I would do it all as long as I knew that if (when) it messed up the shoulder even more, that there was an option to go from there.
He then starts to tell me about this famous baseball player who was before my time (had to laugh at that as this doctor is only about 5 years older than I am) and his joint issues etc and goes on and on. At the end all I said was "Yes, but he didn't have EDS". I then flat out asked him how many EDSers he has treated and he tells me that he has treated 5!! I looked at mom and laughed (he has only been out of med school for about a year and has only been in practice for about 9 months). I asked him again if I do physio I wanted an 'end limit', either a time frame or a physio goal that once I hit and if it didn't work that there would be something to fall back on. Again he said there was no point in it. This is when I started to cry. I then asked that shouldnt we at least get a current MRI and see if the tendonitis is still even there or if it has 'gone away' or progressed and for the first time he finally agreed with me!! Mom then asked if there was a chance to get a cortisone shot for the pain and he said he refuses because I should have never had the ones I had to begin with! He said that I was already at a higher risk for osteoarthritis in the joint because of the 4 shots and I laughed and said I already had osteoarthritis in most joints. He then tells me that I do not have it in my shoulder (sorry I am going to beleive my rheumy who told me I absolutly had it) and he would prefer to wait for me to get it when I was old instead of in my 30s. I was so frustrated at this point that I could barely talk.
This is when he switched to being a psychiatrist! Asking me if I was seeing anyone for consuling and that I had a chronic condition and I should be talking about it to someone and it obviously upset me and asked if I got this upset often, to which I replied "Only when talking with some doctors" and here comes the gem........... "Well, maybe you should stop going to doctors"!!!!!!!!!!!!! Then he said he would order a new MRI and told us that we could decide what we wanted to do and he left. I am not sure what he meant by deciding what to do as the only option that he offered (physio) he completely took back and told me it was worthless! At that point I got mad and looked to mom and asked her if she noticed anything strange about the appointment. She said no and I asked "Shouldn't someone doing an evaluation on shoulder issues actually, you know, touch the shoulder???". After a minute we looked out and he was long gone so we left. (Note - It has been a few weeks now and we have come to the conclusion that he never even ordered the MRI!!)
But here is one of the more frustrating parts. On the way home my mom admits that this is the doctor that my brother saw last month to do surgery. I was pissed!!! I had asked her constantly for the name of the doctor that he saw and she kept saying she didn't know. I told her that I wanted to know because I didn't want to waste my time on a doctor that would treat a person so quickly with surgery for a problem that was completely and entirely self inflicted (long long story!). And if I had of known that this was the doctor, I would have never agreed to getting a referal to him! Then I got even madder at her telling her that she just wasted a few months of my time that could have been spent waiting for a doctor that was actually good. It still pisses me off. There is more to this little story but this entry has gone way too long already. Sorry for the heavy text but there was a lot of disrespect in this appointment that I wanted to post.
hey stacey, oh i feel your anger. you wait all that time for an appointment, then bang wasted. why dont these drs listen to what we are saying. i hope you can reapply for another appt with a good dr. grrrrrrrr. take care of yourself. xxx
ReplyDeleteI just could not believe I had waited months and the doctor never even touched me! And all he went by was an MRI I had done a few years ago for a completely different matter! Will defintly be complaining to my GP and honestly thinking about writing something up. Plus I am still mad at my mom becasue all of this could have been averted if she had just told the truth!
ReplyDeleteMan what an a-hole. He didn't listen to anything you were saying at all.
ReplyDeleteYeah it was so crappy and has left me completely lost as to what to do now as I don't even know what is wrong with it! If it is still the rotator cuff tendonitis obviously it's not healing on his own with time and rest (cause let's be honest, it's been 'resting' for two years now becasue of the pain) so where do I go now? Just so frustrating.
ReplyDeleteThanks for the comment ;)