My body isn't cooperating!

[oops1990]

Hello all,

I was diagnosed with CM1 and syringomyelia in November of 2012. Had a decompression in December 2012, another with separation of cerebellar tonsils in June 2013, and yet another in August of 2013, when a shunt was placed in my thoracic spinal cord. Through all of this my syrinx just doesn't seem to be responding. The last surgery left me extremely weak, and the syrinx caused bilateral foot drop. I also developed blood clots in my right lung and leg as a result from not being able to move well. I used a walker for 4 months, then 2 canes for about 2 months and am just now able to walk short distances with no assistance - but must wear an AFO on both ankles and use canes when going up or down stairs. I've had about 3.5 months of physical therapy total since August, and just when I start to get stronger I get bad news from my NS. The syrinx is now headed towards my brain stem, so my NS wants to do another surgery ASAP to remove tissue around the brain stem, so my breathing and swallowing don't become affected.

Has anyone else had this much trouble, or does my body just hate me? My surgeon seems to be following all of the correct procedures to get this syrinx to shrink down, but nothing is working. I'm so reluctant to have yet another surgery, but don't want to take any chances with my breathing and swallowing. I'm seeing a hematologist next month to see if I'm still at risk for blood clots, and as soon as they say it's clear, I'll be scheduled for surgery. If anyone has had a similar experience, I would love to hear about it.

Thanks!

[selmaS]

  Not that I hope u have EDS, but I hope in looking u may get answers...

Keep us posted.

[oops1990]

The next time I see my NS I'll bring it up and see what he thinks. I'm definitely getting frustrated because the syrinx isn't responding, so any answers I can get are a big help.

[selmaS]

  I half expected u to be on DIAMOX or TOPAMAX.....to help reduce the CSF...

I also wondered about EDS bcuz it seems those with it that have shunts places continue to produce more CSF and I also wonder if it is a rejection of the shunt that causes it and if a drain would be a better way to go....I am in no way a medical professional, just have seen this so many times and it seems EDS is somewhere in the mix most times.

With EDS there are several types and u do not have to have all the symptoms to have it, I looked at the symptoms and said I do not fit that, but I was DX';d with it so I always feel we all should make sure and rule it out.

[oops1990]

The only meds I'm on are Tramadol for pain and Eliquis to make sure I don't develop any more blood clots. I've never considered asking about Ehlers-Danlos because I don't really have any of the symptoms that I have found online. I've done a good bit of research, and I'm just not sure what else I could have - my surgeon hasn't mentioned any other related conditions that I could have either.

[selmaS]

  Hi and welcome to the Chiari forum.

I am curious if u had ehlers-danlos ruled out as a related condition?

What meds are u on?....

I am so sorry u r having to deal with so many surgeries....and I know some it seems may be a result of having other related yet undx'd conditions....once u figure them out it may help with ur syrinx.