Well we made it down there and back with no problems, didn't see a single snowflake until about an hour after we got home! We left real early, went to a few stores, had some lunch then headed to the hospital pretty early for my 2:45 appointment. We get there and I go to register and they thought I was a new patient. She pulled up my old file but still had me fill out a new patient questionnaire as it would be easier to get the new information that way. Dad asks me if I want him to come back into the exam room with him and I very quickly said yes! I did not want to go through that appointment by myself and want his opinion on things as well.
We get called back and I get to see Dr. K first, he is a fellow working there (it's a teaching hospital). One of the first things he says is that my doctor has horrible handwriting lol. He goes all I can read is 'syndrome' and I tell him that it is Ehlers Danlos Syndrome and he says that is what he thought it said. He didn't even flinch when he read it! He goes over my history then asks what the problem I was having. The only thing that bothered me is that he kept referring to when I subluxed my knee, instead of dislocated my knee as the as the 'injury'. He did a very thourough physical exam even though he was unable to do a few of the tests as I just couldn't relax my knee enough for him to manipulate it. It is something I do subconsiously to keep the joints in place, I tried my best to relax and was getting so frustrated that my dad even spoke up and told me not to worry and to just relax it as much as I could. He examined me for a good 10 minutes then had me sit up and asked my to put my arms out which I couldn't figure out. He then takes my arm and I think 'ah-ha', he was checking the hypermobility in my elbow! He then asked about the thumb to wrist thing and both dad and I do it no problem. He just shakes his head and I said you should see what I can do with my knee, he got this confused look so I showed him the hyperextension of my good knee, then laugh and say the right knee isn't that mobile right now.
He then starts in on how I have a very unstable knee which is hard to treat. He states that there are three things to do 1) Physiotherapy, 2) Bracing and then 3) Surgery. We go through how physio always seems to make issues worse and that I had seen a PTist last year who told me that all my joints were as strong as needed if not stronger in some. Bracing was an issue as I tend to dislocate more frequently in certain braces but that I was willing to try another type. He tried to bring up the xrays I had done at home but the disc wouldn't work so he was going to go try it on another computer and to talk with Dr. F. They come back in not to long after and Dr. F says she is only going to do one test on me. She had me sit on the edge of the bed and have my legs hang down. She put one finger on each side of my knee cap and had me go from sitting (90 degress) to straight out (180 degrees) and immediatly looked up at the fellow and asked if he saw that. Apparently my knee tracks diagonally and not vertically. She started talking about how she would like to get a 'special test' done to see the inside of my knee while I moved my leg. She tells me that one doctor there used to do them but she would have to talk to him to find out. She then tells me that since the xrays I brought didn't work, she wanted to re-do them and get some extra views (they have an zray center right in the building). We get those done and then go back to the exam room.
Dr. K and Dr. F both came back in and looked at the xrays and said that it didn't look like too much bone damage, it shows osteoarthritis but not as bad as they figured it would be. She then tells me that there is no easy fix and the extent of damage coupled with the EDS makes it even worse. She did mention that there is a surgery that they rarely do but might be able to help stabalize the joint. I think she is talking about a Tibial Tuberosity Transfer. She said that there are two different braces that might help it but that for my issues I would need to wear it 24/7 and that is a recipe for disaster for an EDSer. She goes on to tell me that she wants to order a dynamic CT scan of my knee. Apparently it can get images of the knee in motion so they can see how the 'internal' tracking looks like. She also is now sending me to a Dr. L who is, I believe, the top knee guy at the clinic. I will get a phone call about a date for the CT scan, a letter in the mail about my appointment with Dr. L and they gave me a perscription for a knee brace for me to try (they have a store right there as well where you can go in and try them on). She told me that I could try physio and bracing until the appointment but it didn't really sound as if she thought they would make that much difference.
On our way out we stopped at the store that is right there and I tried on two different braces. The first had a Y butress that just felt horrible when I put it on. It was a pull up type of brace that I could already feel slipping when I stood up and felt like it was putting my knee and the worst place it could be. I tried the second one on and it felt better. It has an open back as well which is a plus (I used to get cuts in the crease behind my knee from braces) and very adjustable which is good for swelling issues and such. She even let me go out of the store and try it on a flight of stairs (well I did two stairs lol). I could feel more stability on the stairs and I will get used to the feeling of it while walking soon. So we got that one and will have to see about insurance coverage later.
Well that is what all happened. I will post with my feelings and my parents reaction tomorrow (or in a few days, not sure what this horrid storm is going to bring). Definitly ready for another dose of pain killers and an ice pack before crawling in bed!!! My knee is killing me!
Dr's Exam + Massive Storm = Absolute Agony!
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