August 7, 2007

Here are the latest and greatest updates from the medical world of Sadie:

Children’s ran the Lymes labs (through a company I can’t find any information on in regards to “reputable” Lymes labs). The overall test came back negative, but the bands that appear under the testing had several “see notes” comments, but I have been told by them that they don’t’ have notes and that it’s negative. This is the end of story with them. So, after a week or two of going back and forth on what to do and how to get the rheumatologist and the Lymes doc on board together I have come to the conclusion that I can’t. I am going to have to trust what I see as current truth and go with it. As of July 22nd I put Sadie back on the antibiotics and will have her re-tested again later this month in addition to having some additional tests to get further confirmation.

In the mean time, I have gone in and been tested for Lymes also and have an appointment to review tests on the 8th (tomorrow). I am not going to do any updating on me on this site, so if you are interested in results send me an email and I will let you know.
As far as Sadie and the antibiotic treatment for the last 2+ weeks I haven’t seen much to report on in regards to any reaction from the treatment. She has had an upset stomach a few times, but nothing totally out of the normal.

Yesterday we saw the surgeon again. He is pretty amazed at what her ankle actually looks like. When you look at her ankle you defiantly know something isn’t right. We have even had people at our public pool approach us with the assumption she has club foot… the deformity is pretty obvious. He did quite an extensive exam of her ankle and talked to her quite a bit (he is amazing and I can see why he is a children’s doc, he has a gift!). One thing that really surprised him was the fact that her outer ankle and the back of her ankle show so much swelling while the inside of her ankle lacks any swelling at all. He said “the ankle is a circular joint – therefore what you see on one side you would expect to see on the other”. He suspects that either some of the bone is blocking the fluid movement and/or the calcium build up (which is a result of the RA) and/or the scar tissue (from the previous joint injections) has built up a wall that isn’t allowing the fluid to flow.

The options are… to keep things they way they are. Continue to use pain medications when needed and hope that the increased swelling doesn’t cause too much more cartilage damage (which some is present, but the cartilage is surprisingly thick, which is good). Or we can opt to do a Synovectomy. Synovectomy is an operation that would remove the “inflammatory tissue” from the joint. This procedure can be done several ways, one of which is arthroscopy, but that is not an option for Sadie. One reason is that the success rate with arthroscopy is not as great (it is harder to get all the inflammatory tissue and for some reason it seems to have a high rate of reoccurring swelling) and the other is that she does have so much swelling… so, they would make two small incisions one on the outside of her ankle and the second on the back of her ankle. They would move away any tendons and ligaments (just push them to the side) and then remove as much of the inflamed tissue as possible. They have advised they will not get it all – they never do, but they can get a majority of it. They can not guarantee that it won’t come back, but most patients experience at least 18 months of decreased swelling and pain. The other positive is that it will hopefully allow the medications to work more effectively. It appears that the Remicade is successful in other areas, but can’t win the battle against the ankle and hopefully by taking some of the tissue (reducing the army of swelling) the medication can actually start being effective there.

Recover is a little unclear; she will need to stay in the hospital for at least one night and then will be in a cast for two weeks; the cast will allow the incisions to heal and for the joint to be completely immobilized. She will then go to a boot; the doctor said she may not be able to put any weight on it at that point, but at least she could take the boot off and start physical therapy. From what I can tell it appears to be about a six to ten week recovery.
We are now trying to figure out timing (as if there is every a “good time”), but with school and a pending huge vacation in October… it is hard to know when the right time is to get this done. There are pros to doing it right now and there are cons if the recovery takes a long time. There are pros if we wait, we have more down time later in the year, but the con being she will have to deal with her current pain level until November.

All and all we have to wait until we hear from the scheduler to talk this out and figure out what is best for everyone. We will keep you all posted.