Avatar universal

Post surgery numbness in legs, etc

Hi. My name is Amber. I was diagnosed with CM1, syringomyelia (C1-C10), and syringobulbia in March of 2015 after having MRI to check for MS because I was having muscle weakness in my legs, ankles, and hands. I was also having severe exertional headaches.  I had surgery on June 10. Craniectomy,  C1 laminectomy, and duraplasty using my own tissue. I woke from surgery with numbness:  both feet and legs, butt, back, genitals, belly, right arm and hand. I also had bladder and bowel issues and very bad balance.  I initially couldn't walk, but was able to get around with help or a walker after a few days.  I stayed in the hospital for 10 days as the Dr was trying to figure out what was going on to cause the numbness.  He had never had this happen to a patient before.  A month later I developed a pseudomeningocele and had surgery to repair the patch on July 29. A bovine synthetic patch was placed over the original, I believe. I am now able walk, but still have the numb/tingly feeling - my legs, feet and right arm and hand are the most bothersome.  The other areas have gotten better but not totally normal.  Still have some balance issues but nothing major.  I have been denied disability.  Just wondering if anyone would have some insight on what this might be, if I can expect to get my feeling all the way back, and if I should pursue the disability. I have recently had another MRI and my syrinx is unchanged.  It did say I have a large Craniectomy,  more so on the right. I cannot raise my head suddenly or turn it go the side quickly as it feels line I am squishing my brain and it gives me an instant headache. I am a school bus driver and have not gone back to work yet as I can't really feel the bottoms of my feet and feel this would hinder me from being able to be a safe driver.  Any input will be greatly appreciated.  

Ps:  My doctor was not a Chiari specialist.  We do not have any in south Mississippi that I know of.

4 Responses
Avatar universal
Sorry, C1-T10
620923 tn?1452915648

  Hi....I am so sorry you are having post op issues.....

These issues can be due to a number of different reasons....a nerve may have been pinched during surgery or it may be damage to the nerve due to the syrinx...you said it has not changed....

What other conditions were ruled out?
Avatar universal
No other conditions have been considered except MS.  I asked about ED, but the surgeon just kinda laughed.  He's not a chiari specialist so I assume he doesn't know much about the other issues that can go along with it.  He sent me to a neurologist who didn't even know what chiari was.  He said he had very little info of it at school and that he would research it.  They have both been very good drs and I really like them.  They just aren't experts...
620923 tn?1452915648

  Chiari tends to not come alone and many of us have related conditions and it is important to know if we have any as they (the conditions) can affect the outcome and recovery process.

Maybe you can get them to contact a Chiari specialist for a consult??

No matter how nice you need a specialist to help you thru this....
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease