Headache

[Tracysiller]

I had chiari surgery 9/11 and repaired 2/12. My head is still hurting!  I'm hoping someone has a suggestion. The pain is on the back of the right side of my head and above my right eye for three days then it will move to the other side for one day. The right side hurts much worse. I'm nauseated with the right side.
Anyone have any ideas? These headaches are debilitating!!

[selmaS]

One of the most common pains, similar to the headache seen in the Chiari malformation, is occipital neuralgia. The occipital nerves originate from cervical nerves in the upper neck and run in the scalp in the back of the head. The nerves can become compressed or injured and cause a number of symptoms.

Symptoms
Persons with occipital neuralgia often note a prolonged ache or feeling of tightness in the back of the head. The pain is often a throbbing or electric-shock-like pain that starts in the upper neck and back of head and radiates behind the ears, temples, forehead and behind the eyes. The shape of the pain radiation has been described as a ram’s horn. Occipital neuralgia is usually present on one side (unilateral), but can be on both sides at the back of the head (bilateral). The scalp may be tender to the touch. The eyes may be sensitive to light.

source-http://chiaricare.com/Related-Disorders/Other-Related-Conditions.aspx

[Tracysiller]

I saw a new NL and she said I have occipital neuralgia. She wants to try Botox injections.
Is this related to chiari?

[selmaS]

  Gabapentin did nothing for me either except exacerbate my IBS...yuck....

Have u looked at the Beighton scale to see where u fall on it...that will give u some idea...

[Tracysiller]

Gabapentin is not doing anything for me.
They have not done any testing for EDS. They just say no......

[selmaS]

  Have they tested either of u for EDS b4 saying no?

I do not understand the reason a Dr would just say no, especially when u have 2 in one family with this condition, y not attempt to see what all is involved?

I understand y u do not take the Topamax....how is the Gabapnetin working for u?

[Tracysiller]

Danielle, looks like our surgery dates were close to each other. :) praying for you.
Selma, I've been on lyrica and had a nerve block. Neither helped. I'm currently on gabapentin. I don't think it's doing anything for me either. I haven't tried Topomax because I've had kidney stones. I will say I think I'm having some high pressure HA's also but these are minor. I just sit up and they go away.
I have seen my NS for follow up and he said everything looks good.
I had a MRI a few weeks ago and they didn't see a leak. These HA's are different.
I've asked about other conditions like EDS but drs say I'm fine. (Even though I think it's odd that my dd has chiari also.  I even asked her NS about EDS and he said no.)

[DanielleElean]

I had my surgery 10/18/2011. I have not been headache free a single day since. Some days the headaches are better than others but they are never gone. I go to physical therapy once every other week. This helps with preventing the really bad headaches. I am just tired of being in pain. I take ultram, robaxin, xanaflex, and butterbur. I have two injections to help with the pain. These have never helped. Although once it did take away my dizziness. I have three little ones under the age of 8. I am a part time nurse and my family depends on my income. I go on everyday like nothing is wrong. But it is wrong I am in pain, I am tired, I am just not the person I used to be. It really *****. I just wish I could go back to the time when I wasn't sick. Sorry I guess I needed to vent. I did want you to see that you are not alone. I try to have hope. My neurologist says he has been able to solve these headaches post decompression surgery in about a dozen pts. Only one time was he not able to help a pt. I have hope but it is hard. It is lonely. Thanks for listening.

[selmaS]

  Have u been checked for related conditions?

And so u still have the leak?

There can be many reasons for ur HA's and daily activities can play a role while u r healing....

U may need PM and try something like TOPAMAX.

But u may need to see a Diff Dr to find out what is going on,.....

[Tracysiller]

I had pseudo because 1st dr. used a clip on the dura and it came off. The repair was not done by the same dr. I have been back for a follow up and the said everything looks great. However, I don't feel great.  I just want these headaches to go away.

[selmaS]

  Hi Tracy, u haven't been on in a while....so sorry u r still having issues....can u explain the repair? Was it the same NS that did the orig surgery? What was the repair for a leak?

Since u had the repair have u been back for a post op visit?