Its been awhile since I've signed in. A lot has gone on in the last year for me. My syrinx has grown, as well as many other health problems (hypertension, scoliosis, rheumatoid arthritis, tb, to name a few!) and I can't seem to find any doctors that know what to do about the syrinx besides do yearly mri's to watch for growth. Well it's growing and now what? I've seen neurologists, neurosurgeons and spine drs. Nobody has any answers as far as what to do. Are we expected to sit and wait while this thing expands and elongates destroying nerves and our lives in the process?! Anyone gone to mayo for this?

I haven't been to Mayo Clinic but I am a patient at NIH and a part of a clinical trial for SM. I have idiopathic thoracic SM. I have seen some of the worlds best doctors at NIH (National Institutes of Health). Maybe you should consider and see if you qualify for a clinical trial. Go to clinicaltrials.gov. You can also visit nih.gov for more information and to see what NIH is all about.

What kind of information/answers or treatment have you gotten from NIH? I never thought to check on that but I'm going to now, thanks for the tip! Do you have any info or anything you've learned about your idiopathic sm? Mine is idiopathic also.

I just looked it up and I wanted to ask you a few questions. I found a study/clinical trial that matches but how does that work? Location says they are in Maryland, do you have to go to Maryland? Do you have to pay for anything? Can you elaborate on how it works? Thanks so much!

I haven't learned much more except it has a wide range of symptoms. The other types are more specific with their symptoms. This last visit to NIH I went through a bunch a audiological testing to see if my system was intact because of the constant dizziness I feel. My vestibular system is intact and working well, there are a few iffy things but they are not due to inner ear problems.They would like for me to to vestibular rehabilitation therapy. I have't started yet. In the meantime I have been trying hatha yoga. It's tough but I feel pretty good after doing a session.

You have to apply to the trial and be accepted, which can take a few months. Depending on how the trial is set up they can provide the transportation and reimbursement for lodging. I'm not sure if each trial does that. They would let you know as soon as you are accepted. For mine, the travel expenses are paid for. All of the medical treatments done at NIH are at no cost because they are a research institute. If you accept the trial you have to agree to the terms of releasing your medical information to participate and also allowing them to publish your results once the trial has been completed. If they recommend anything outside of their facility you would have to pay for that. So my vestibular rehab therapy is not paid for.