Post Decompression Challenges

General
1

Hi everyone,

This is my first time posting here. I had the decompression surgery almost a year ago, and although my headaches have gotten somewhat better I am not having other bizarre symptoms. For example, my eyes will shake for no reason at all, making everything blurry. My neurologist does not seem to be worried about this, but I am! I am at Kaiser and when my first brain MRI was done my malformation was missed! The only reason was diagnosed was because my uncle is a doctor and he had his best friend ( who is a neuro-radiologist) look at my images. I also have thoracic syringomyelia which is 3mm wide ( my spinal cord if very narrow, so it almost takes up the whole thing) They also told me that thoracic syringomyelia is rather rare in Chiari patients, and that my Chiari was "borderline". After I got out of the hospital the first time I got a strange ( and still undiagnosed) viral infection that made me have to back to the hospital for 10 days. Anyways, I digress, and I wanted to see if anyone else has had the following symptoms

Anyways, now I am having a ton of GI symptoms, I had them before my surgery, but they went away for awhile. About 7 weeks ago I started havng bowel incontinence, and massive GI bloating with diarheaa ( sorry if this is gross!) They tried me on Lialda and then Pentaza but I had an allergic reaction to them both. Apparently my GI doctor thought I may have had Ulceritive Colits or Chrons but never said anything to me, and all of the steroids I have been on for the past year ( as well as pain killers) either masked the symptoms or put me into remission. Now I have been on steroids for the past 7 weeks and I am retaining a ton of water even though I am eating well.

I know this may seem like a diatribe, but I simply don't know what else to do. Has anyone else here been in the same situation? Is there a link that I am unaware of between Chiari and IBDs?

Also, does anyone know if there is a link between Ashkenazi Jews( which I am) and Chiari/IBDS? Sorry this is long and rambling, I am intelligent, I promise, it is just very early where I am.

All the best, ( and thank you in advance for any help!)

Rhian

2

Rhian, I’m sorry you are still dealing with problems post decompression. There is a connection with IBS and Chiari. There is also a link between tethered cord and Chiari, your mention of bowel incontinence made me think if this. If you are having urinary or bowel incontinence it could be a sign of continued spinal cord compression. So the tethered cord could do this, but also patients with ELhers Danlos (another common chiari affliction)can sometimes have continued cord compression by way of weakened neck ligaments that don’t hold your head or vertebrae in the correct position. I’m surprised your doctor doesn’t seem concerned about yor symptoms, including the eye shaking. Now if you had these symptoms pre decompression I would just think it might be residual, but because its new I think you should get to the bottom it. Maybe see a different NS or go back to your old surgeon. I’m glad you mentioned the T- spine syrinx. One of the first NS I saw told me that if I didn’t have one in my c-spine than I wouldn’t have one anywhere else. Another LIE!!! Lol. Also, did you have a post op MRI to make sure your brain is ok?

Jenn

3

Rhian,

Please give me a day or so to do some research for you. I do know a lady that is also an Ashkenazi Jew and has IBS. Her daughter also had genetic disorders unrelated to IBS but very serious. I will get back with you.