Please read and reply if you can. I am in bad shape: Symptoms after decompression surgery

Hi all,

I had decompression surgery July 29. Saw the surgeon in september and was told the surgery was a complete success. I was still having almost all of the symptoms as i had before surgery and he told me that i had occipital neuralgia and that a steroid injection in my neck would ease the pain and cure the symptoms.

So i go to see a specialist for the injection, and after 2 minutes he flat out says "i dont think that you needed to get surgery" and then tells me i have migraine headaches (but, he says that he cannot explain the numbing, tingling, trouble swallowing, trouble speaking) He then puts me on 8 different meds to control my headaches.......when the headaches are not the major issue.

So i call up my surgeon and they said that they have no idea what is causing this and to wait until my november 21 appointment to discuss it further.

I was on hydrocodon after surgery (which i guess was just masking the pain?) I was able to go for long walks, felt really good and everything.

They cut off the hydrocodon (i have a 7 pills left) and without the medicine i can barely function.

Has anyone else had the surgery and then felt great while on meds and then 3 months after the surgery it appears that the symptoms have come back and are worse than prior to surgery?

I literally have had times when I cannot lift my arms or move my legs, and lots of trouble slurring my words lately and trouble walking and these doctors have no clue why.

What are some possible causes if anyone knows please reply? Are there any things like HGH, or steroids, or stem cells, or anything?? that might help ease this pain.

I am sorry for the long post........but I am hoping someone out there might have some answers that can help me?

Thank you all so much for taking the time to read and respond


Hey Beeba :)

Thank you so much for your words and thoughts and feedback. It is truly seems this condition can really mess with your mental state as well and take you to some dark places of sadness. It is unreal how many symptoms you described that are exactly the same as mine and the doctors failing us in exactly the same ways too.

I am not looking forward to my hydrocodon "detox" I have enough left to get me through next i am thinking that since you said it is going to be a rough few days without it, that I will just stay home in bed on sat/sun/mon and hope to ride it out.

On a positive note, I am seeking out an appointment with a Pain Management Specialist in Connecticut and I am super pumped that he might have some answers as to what the hell is going on? The amount of different body areas he specializes in gives me hope that he can offer some possible cures or a maintenance program. Who knows?? perhaps he will have some answers.......and then I can give other people on this site some glimmer of hope?

Again, thank you so much for taking the time to write to me :) it really helped lift my spirits to see a fellow sufferer who REFUSES to give up and quit!! I needed that motivational kick in the butt big time!!!

Thank you again and I hope you are doing better


Shane, First so sorry you are still having these symptoms- so hard to have all the Chiari sumptoms PLUS now recovering. I agree about looking into dysautonomia. A few other things to look into as for the cause of your symptoms… Did you get a duraplasty? For some people just a boney decompression isn’t enough. Also, I’m going to attach a long list I keep as a file- so some of this doesn’t apply and may sound disjointed- but most concerned about CCI.

There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.

Vitamin d deficiency

Magnesium deficiency

Vitamin Bs deficiencies

Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.

Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.


Tethered cord syndrome

Sleep apnea

I am glad you found us,