Chiari Malformation I

[ahedden]

I had Chiari I Malformation surgery in 1993 and had immediate relief.  Throughout the years, I have experienced some pressure headaches just like before having surgery.  This year, I began to have muscle spasms in my left arm, right side of my neck, legs and back.  Could this be from Chiari I Malformation?  I have been doing physical therapy for severe bursitis and have had to stop until I find out why my muscles are having spasms.  The physical therapist can feel the spasms and has asked me to see my regular doctor.  I wonder if I need to go back to my Nuerosurgean (Dr. Michale Bucci).  He is one amazing doctor and I would trust him with my life.  

[selmaS]

  If u had a fusion of C5 and C6 it is most likely bcuz of cranial instability which comes with EDS....

Do u know if u had a dura patch placed during ur surgery and if so what type?

Since ur surgery was so  long ago already....it is possible that u have scar tissue causing the neck issues.....

When was ur last MRI to check on it?

     "selma"

[ahedden]

I have the occasional neck ache from the surgery site, but nothing like before.  However, I do get extremely tired everyday.  I go home and sleep for an hour everyday and have done this since my surgery.  I work two jobs and have to make myself get up to go to work.  I have 94 days of leave time to take, but feel so very guilty to use the days.....guess I'm saving them in case I have another surgery.  Sometimes when my neck hurts, it seems to throw off the muscles in my upper back to the point of wanting to cry.  I assume everyones muscles compensate in one way or another just from the surgery itself.  Part of my problem is I had the surgery for Chiari I and then I had my C5 and C6 fused together.  I don't remember having any other test to see if I have Syrinx, tethered cord or ehlers-danlos.  I haven't done any research on that yet.  Maybe I should.  

[selmaS]

  Hi and welcome to the Chiari forum.

To address ur first query.....muscles spasms....this could be ur chiari flaring back up or a related condition....were u tested for related  conditions like a syrinx, tethered cord, ehlers-danlos?

I have had the muscle spasms and was under the impression it was from my EDS....but, who knows when u have more then just one thing going on it is not easy to know which one is affecting u.


TO address ur 2nd query....being considered disabled....it has nothing to do with chiari or the surgery, but the person or individual them self...we r all diff and may have multiple conditions going on...or our body's may react to surgery and the meds diff so it all depends on the outcome.


What is ur pain like, where is it and did ur Dr address this?

  "selma"

[ahedden]

Do most people that have Chiari I surgery become disabled?  It seems the few ladies I met had no choice but to become disabled after surgery.  I'm curious how everyone else handles the day to day pain.  

[toomuchbrain]

I haven't had the surgery, so I can't really speak from experience. But if you trust your doctor that much, I would at least call the NS office to see what they suggest.
I asked my NS if the mild spasm/cramping in my calf would go away post-op. They said no guarantees that it's Chiari-related or that it would go away.

[sandy629]

  i had my surgery back in 07 i am now experiancing  spasms, spine pain  etc, etc. i made an appointment with a doctor in boston  he is a chiari specialist.

[jenshead]

I'll let someone else answer to the post-surgery symptoms part of this, but I have to say - if you trust your NS that much, I would at least call his office and ask if they think its a good idea for you to come in.  And if your insurance will cover it (and therefore money isn't a problem), it can't hurt anything to go.  

Really, if you ask any of your other drs who are not so familiar with CM...they will probably tell you 'oh, no I don't think this has anything to do with Chiari' and they could end up being entirely wrong!