Twitching symptom

[cindyOH]

Does anyone know if random twitching/spasms could be related to chiari or syringomyelia?  It's mostly in my legs when at rest.  It seems to have switched from mini random pains to twitching.  I have an EMG in 3 weeks.  Dr. doesn't think it's related.

[lynnbrook177]

I had restless leg syndrome before being diagnosed with sleep apnea (which I believe 60% of Chiarians may have). It is barely there now, after using a cpap machine

[Franklin25]

I have a very, very narrow syrinx that runs from T2 to T11.  It has never changed since.  Every neurosurgeon that I have ever seen, and I've seen some very good ones, has indicating that it's not causing my problems (i.e., muscle loss in legs, fasciculations/twitching in calves, muscle jumping).  That said, I've read that fasciculations are a symptom of syringomyelia.    

[selmaS]

Hi...it is possible to go to very well respected Drs, but it is also possible they may  not have the experience with Chiari and Syringomyelia to be able to help. Make sure they are a true Chiari/Syringomyelia specialist. There is a Conference going on now with ASAP.....check out the lectures for more information.

[Kimberlyann1189]

I was diagnosed with Chiari Malformation 1 after years of having issues, but one of the major symptoms I have are tremors in my hands and neck, the worst is my neck. I have a neurologist now (as I was diagnosed finally in July of 2021) who started giving me botox in my neck (cerebellum down to my shoulders), right side of my neck, and face (twitches), and it really really eliminated the majority of the tremor/twitches I get. It's hard because doctors don't fully understand Chiari, but the spasms definitely stem from the Chiari. I want to find a hospital near that specializes in Chiari, as most doctors don't really have all the answers, you may want to find one who specializes in or is experienced with Chiari Malformation. Chiari also causes me dizziness, confusion, (newer that I notice) higher blood pressure, and blurred vision at times (when it's triggered/herniating). This is just based on my personal experience so far and things the neuro went over with me.

[selmaS]

Hi cindyOH,
It is possible it is related to Chiari or Syringomyelia....as either of them can affect different nerve endings which could cause the twitching. I had  restless legs for a while around the time I was DX...but I only have it on rare occasions now....Is your Dr a Chiari specialist?

[cindyOH]

I had syringomyelia but was gone with a follow-up MRI.  It's been a while since I've had an MRI.  Should those be  done a regular basis?  My Dr. is not a specialist and I'm ready to move on.

[selmaS]

So your syrinx, shrank on it's own, or did you have decompression surgery?

[cindyOH]

No surgery.  My symptoms weren't severe so I had a follow-up MRI done 6 months later.  There were no more syrinx noted on the report.  I previously had 3 micro syrinx.

[selmaS]

WOW, well congratulations on have a syrinx shrink, I know it happens but I think it may be rare. It also happens more when the Chiari is acquired due to an injury. Do you know if your Chiari is congenital or acquired? Are you still dealing with the restless legs?

[cindyOH]

Never told specifically.   I think they were assuming it was from birth.  I did fall playing tennis about 3 months before symptoms.  My symptoms began when I had a virus and coughed and had stabbing rear head pain.  I'm still having twitching in legs but also other parts of body as well.  My legs don't feel restless.  Do you know the Chiari Specialists in Ohio?  Also is an EMG a useful/valuable test for Chiari or Syringomyelia?  Thanks!

[selmaS]

Hi Cindy,

The EMG is to see what is causing your leg twitching...I had it done, it looks to see if the issue is muscular or neurological.

I have a list of Drs for Ohio-- KEEP in mind this is not a referral nor an endorsement, members here add to the list Drs they have been to, treated by and liked,,,,so do research on the Drs to see if they  are Chiari specialists.

OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
[phone]

[DSH519]

Dr. William Bingaman. Cleveland Clinic. Did my decompression surgery in 2001. Expert in Chiari and syrinx decompression. I was herniated to the level of C2. Very few residual effects

[cindyOH]

Thanks for the Cleveland Clinic Dr!  I am looking into going there.  I also called about Dr. Tew that is mentioned above but he is no longer employed at that number (Mayfield brain and spine).  Thanks so much for your help and concern Selma and DSH519!  I didn't really know how to find a true specialist so it's much appreciated!        <3 Cindy

[selmaS]

you are very welcome...please let us know how it all works out for you....

[cindyOH]

When I took a look at Dr. Bingaman, it didn't list Chiari at all.  He seems to be more of a specialist with Epilepsy.  
I'm having more imaging tomorrow.  MRIs of brain, neck and upper spine.  I think it would  be more informative if it was the whole spine and cine.  Frustrating...but...hopefully, they get enough imaging low enough to see if the syrinx is back.  

[selmaS]

AS I mentioned the list of Drs is not a referral nor endorsement, just a list to start with....The Dr you mentioned may have treated someone while not being a Chiari specialist....and the person liked them. It is possible that the person developed epilepsy as some have post op had this happen.....
I agree getting the entire spine done is more helpful....and all you can do is hope to see if the syrinx is back....what area was it in before, are they at least looking there?