Chiari, Tethered Cord, Next Steps?

[Fourdots]

I was recently diagnosed with Chiari Malformation 5mm (no significant CSF flow blockage or crowding) and tethered cord.  I've had constant neck/back of head pain for 6 months which is making it difficult to work, sleep, and be a good mom.  Two weeks ago, I woke up very dizzy (head/neck feel heavy) and numb on my cheek and tongue.  I'm also walking like Frankenstein when I'm up and moving around a lot.  It hasn't gone away.  Neurosurgeon #1 discussed tethered cord release surgery with me but set me up with a second opinion with a non-practicing neurosurgeon who does consultations.  Neurosurgeon #2 said I don't have Chiari and the tethered cord is not causing my symptoms or else I would have had them my entire life.  Not sure if it makes sense to see a Chari specialist or accept the symptoms and a new normal.

[selmaS]

  Hi...Not sure what u mean by they just changed their name.....?? I had my surgery there in '09 and it was called that then....TCI was established in 2001...so that may be when it was a change in name but I can not locate nething on the Center....

  It was the Drs at TCI that told me I had EDS and TC...and a few other issues....

[Sionnan]

At the Chiari center in great neck new york, the surgery was so helpful in terms of pain, I am so glad I did it, but of course everyone is different, a lot of it has to do with the doctor too. The Chiai Center has recently changed it's name, but typing in Chiari institute great neck new york will most likely give you the same place, since it's just a change in name. After going to L.A, Boston, Chicago and my home state of Connecticut they were the only ones who actually helped me

[selmaS]

  Hi and welcome to the Chiari forum.

Thank u for sharing ur journey with tethered cord...I too am on hold for the release surgery and my DH is going nuts with all the pillows I have in bed at night trying to get comfy.....

May we ask where u went for ur surgery?

[Fourdots]

Wow.  Hearing others stories definitely puts my situation in perspective.  I can relate to the pillow situation.  I have purchased no less than ten different pillows and multiple different ice/ gel packs in the last six months in an attempt to be able to sleep more than 3 hours at a time.  I'm going to take your advice and continue to research.  Good to hear a story where the TC release surgery was helpful.

[Sionnan]

I was 11 when I found out I had Chiari, before that I was a competitive swimmer and diver, athlete and dancer with no pain, then headaches came and the diagnoses. That was 14 years ago and I've since had 11 brain surgeries. I had a tethered cord and was in horrible pain, post opp I have had a dramatic decrease in the back and neck pain I had once had, obviously after 11 brain surgeries, slit ventricle syndrome, a cerebellar slump and EDS I have a great deal of pain but it is not what it was before the tethered cord surgery. Pre tethered cord surgery I had a half dozen pillows under my back and head to sleep. I'd recommend doing more research so you feel comfortable with your decision but for me the tethered cord release was extremely helpful. Good luck and best wishes!

[selmaS]

  No worries...if there is ne way I can ne way I can help u let me know  : )

[Fourdots]

Yes.  Thank you.

[selmaS]

  Is it ok to have it deleted so we do not have 2 threads going then?

No worries...just ask for help, that is y we r here : )

[Fourdots]

LOL. Obviously, I don't know what I'm doing.  I've never posted anything to a forum before.  I thought I posted the second topic to the "ask a doctor" forum.  Between my FT job and being a mom of 4, I usually don't have time for personal internet time. :)

[selmaS]

  Yes there is it is a fusion...unfortunately it removes some ROM and can give us a very stiff appearance.

I see u started another thread on this topic...and yes adults do have surgery for TC....I was scheduled and then my Drs felt that the PFD would give me more benefits...and I have put off the release surgery...but it is one I have in my future....

That Dr was a member here on MH....he may still be....u may want to look.

[Fourdots]

I think I'm going to try to see a Chiari specialist and mention the other condition(s) you mentioned.  I'm curious, is there a treatment for EDS/ cervio cranial instability?  I live in Columbus, OH and am looking at Dr. Prevedello at OSU.

[selmaS]

  EDS can cause cervio cranial instability and cause the issues u mentioned and some Drs do not seem to know to look for it, ......symptoms with Chiari also can cycle and flare so I really do not understand most Drs reasons on y they do not feel our symptoms could not possibly be from something they have not researched  like some of the specialists have.....

[Fourdots]

oh yea, I do have bladder issues and a bulging disc at C5 (doctor said it was mild).

[Fourdots]

I have not had a thoratic MRI but did have a cervical MRI that the Neurosurgeons haven't looked at yet.  My orthopedic doctor saw it and didn't mention a syrinx.  I'll ask about the other items you mentioned.  I've been off of work the last two weeks but am going to try to push through the dizziness and neck pain next week.

[selmaS]

  Hi and welcome to the Chiari forum.

I suspect with doing the lumbar MRI they also did one of ur thoracic spine as well and ruled out a syrinx?

How about Ehlers-Danlos?

I beg to differ with the Dr that seems to think that we do not notice or develop symptoms as we age due to the aging process....I mean as a child , we may be told our pain is "growing pains" then issues like TC may have been stretched so we do not really notice too much, but have more or less adapted to the symptoms accepting them as just how we feel and things r.....

But as we age, things tighten up and this may cause more pulling on the  cord....JMHO....

  SO u had a CINE MRI already and no CSF obstruction....or crowding....

Look into EDS and other related conditions, syrinx, disk issues, ICP, POTS, as they may be causing some of the symptoms if ur chiari is not....not all with chiari need surgery, and just routine monitoring is needed.

DO u have bowel and bladder issues?