Chiari symptoms and cough-headaches back 2 months post-surgery

[Lynnlee03]

Hello, I’m hoping to get some advice/help here. I just had decompression surgery for Chiari on October 27th (pfd, with C1 laminectimony, and duraplasty w/ my own scalp).  My symptoms before surgery were headaches, weakness, numbness, and difficulty swallowing.

Since surgery I’ve had quite a rough go with chemical meningitis- which has resolved, a pseudomeningocele- which the last MRI showed has gotten smaller, a CSF leak from a lumbar puncture, and symptoms of vertigo, tinnitus, extremity weakness (which came had gotten better and came back 1 month ago) facial numbness, burning pain in left arm, decreased fine motor control in left hand, hyperacousis, and although my Chiari cough-type headaches initially seemed to have gotten better, within the past month they have returned much worse than before-All of these symptoms are still persisting.

I’ve noticed that moving my head, especially up, causes a stabbing-type headache, lightheadedness, and instant nausea- and wonder if I may have some issues with cranial-cervical instability and possibly EDS. Also, I hear a kind of grinding sound when turning my head side to side.

Also, I’m concerned because my last MRI (an upright one) said my tonsils were herniated 9 mm whereas before surgery they were 6 mm (on a standard lying down MRI) .

Although my NS has a lot of experience with Chiari for my area (AZ), after doing a lot of my own research, I don’t think he’s a true Chiari specialist- and think I may need to find someone with more knowledge of co-morbid conditions.

Does anyone have any info or similar experiences they can offer? I feel worse now then before surgery and don’t really want to have to get used to all of this.

[selmaS]

Hi and welcome to the Chiari forum.

First I want to welcome you to the Zipperhead club....and next ask what all you are doing post op...daily activities etc....also do you have neck exercises to do?

It is not uncommon to have symptoms return during the healing process....since many of the nerves were compromised as they "come back to life" they over react to stimuli causing all the weird symptoms and sensations....so it is typical to have some of this post op.

But daily activities can also trigger some of this too....so look to what you are doing on a daily basis.....if you have EDS you will tend to heal slower then most so it is early in your recovery.

Hang in there.

[Lynnlee03]

Hello, and thanks so much! As far adaily activities, I try to do as much as I can without overdoing it. I have children to take care of and they have been very patient with my recent limitations. I’m also a musician, so the loss of fine motor control and pain in my left hand/arm is very concerning to me. I find that the more I do with this hand/arm the worse the pain and weakness gets.

I was told to stretch my neck muscles, but wasn’t given any specific exercises to do.

[selmaS]

When you do the stretches you should use heat before and after to help the muscles relax....I do have  pic in my profile page of the stretches I was told to do...you must read the pics to see which ones as there are some pictured I was told not to do......

[selmaS]

http://www.medhelp.org/user_photos/show/171420?photo_collection_id=1369

Please read my comments to see which ones I did.