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Chiari Malformation Community
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Avatar universal

Intolerable Nerve pain post Chiari surgery

Has anyone had chronic nerve pain post chiari surgery. I had type II? My surgery was 5 months ago and my pain is concentrated on my right side, back of head, neck, shoulder and travels down arm. Is this common. My doctors seem to think they have done everything for me except a nerve block. I had occipital nerve block 2 days ago and the pain is still there. Us this common?
13 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi,...it is possible to have perm nerve damage depending on several things...ur Dr should let u know if there is ne residual damage  post op.

May I ask, did u also have a syrinx? Or ne other Chiari related conditions?
Avatar universal
@ hscurry: So sorry to hear your still in pain. Did you try any medication before the nerve blocks? What is your NS saying now that the nerve block did not work?
@SelmaS: whatt is residual damage and how can one tell? Is it a muscle damage?
620923 tn?1452919248
COMMUNITY LEADER

  Depending on how long a nerve is impinged it is possible to be left with perm nerve damage....ur Dr should be able to tell and should inform u if that is the case....

Not muscle damage this is nerve damage and usually associated in those with a syrinx, this is y those that do not have one have surgery to help prevent one from forming....
Avatar universal
My Dr has not explained any longterm damage. He told me that my surgery was a success and he does not know what else to do for me other than refer me to pain management. I explained all of my symptoms to the new Dr and showed him where the majority of my pain is. I went for my nerve block on Friday and he was going to do a nerve block for c456 on left side. I would not let him do that because that is not where my pain is. I'm thinking of finding a new set of Dr and these r the best in SC. I feel like they r not telling me everything. I did have a syrinx my CSF had a lot of blockage and they could see pockets of cysts in CSF. I had a lot of symptoms.
620923 tn?1452919248
COMMUNITY LEADER

Try sending ur info to a Chiari specialist for a review or consult with ur Drs....mayb they just need another set of eyes experienced with these issues?

But looking outside ur current Drs may be ur best nest step.
620923 tn?1452919248
COMMUNITY LEADER

  That should be next...not nest....lol...
Avatar universal
I have been on medication but nothing touches it. I also done 6 weeks of physical therapy, heat massage and aquatic exercises that I could not tolerate   without severe pain. I just want to feel better.
Avatar universal
Thank you for ur help!
2063048 tn?1390828211
Hello! I'm sorry to hear that you're still struggling with these issues. I know it can be (and is) very frustrating! I also have severe nerve pain and, unfortunately, nothing has helped. For the general pain and mild to moderate nerve pain, rest and alternating ice/heat helps a little. Selma has a good suggestion to send it to a Chiari specialist for a fresh review. I wish you all he best!

Annie
Avatar universal
Does anyone know a specialist near SC?
Avatar universal
The pain is common with chiari (after surgery) because of the length of time the herniation in your head/neck caused the CSF fluid pressure to be high. It causes the nerves to be compressed(for all the years you had it without being treated) which can cause permanent symptoms.  I have them constantly & the only thing I can do is treat the symptoms.  Fortunately I went to a chiari institute (in NY) & they discovered I had a wrong decompression in my home state & that I needed the correct one & I also needed a shunt to drain fluid constantly.  Having these things corrected helped me a lot.  I go there for everything now.  I also go to pain management every month (for the last 11 years).  It gave me my life back.  I can't work anymore, but I am not in bed  in pain constantly anymore.  I use a heating pad daily on my neck, shoulder & back.  My husband works out my neck weekly (some massage therapists caused me migraines) & it actually can take my migraines away with just that!  As long as you do not have medical issues like ruptured disks in your neck & back that need addressed or the other associated conditions (Ehlers Danlos & Tethered Cord Syndrome), you have to just treat the symptoms.  This is a way of life post decompression for most people, surgery is not a cure in most cases.  I tried it all: PT, nerve blocks, ablation, massage, every medication know to man for pain/migraines & these are the only things that have helped me.  Once I did research, I found out that many of those procedures can actually make chiari worse.  Good luck & blessings to you.
4816750 tn?1368808270
I am sorry still in pain with the nerves.  I had pain cause of nerves.  Mine was cause of syrnix was so big and nerves trying to re-generate.  They would pulse so hard at times it felt like someone was beating with a hammer.  My doctor perscribed me gabapetin for mine, i took 100mg three times a day.  I took mine for a year, cause it quit hurting.  I still have some of the pulsing but it doesn't hurt.  I am not a doctor, but if you had a syrnix it could be the nerves trying to heal.  I would discuss it with your doctor and see if that is a option.
620923 tn?1452919248
COMMUNITY LEADER

  Here is a link to the Health Pages, where we have compiled the names of Drs the members here have been to and liked, this list is not a referral nor an endorsement, but a means to help u locate a Dr and research them.
http://www.medhelp.org/health_pages/list?cid=186

We encourage all members to add to the list.
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