Occiptal Neuralgia ,, Nerve cutting

[MacHugh]

My husband sufferred a sub aracnoid hemorrhage in Feb 08 ..........He continued to have severe pain in his head and a 24/7 headache for over 8 months. Prior to this he never had headaches.   An Embolization of the area was done and on a follow up angiogram they discovered a Dural AV Fistula...surgery to remove DAVF was done a few weeks later in November.      For the first time in nine months he felt human and the headache was gone.
He was sent to Physical therapy to help get more movement in his neck which was working!!     He felt good!!!

One day after PT he said he felt like something was going on in his occipital /neck region   ,,,, as in pain.   Within a few days he had full blown pain which has now been diagnosed as Occipital Neuralgia.  His ON is very severe he once again has  24/7 pain ,,,sharp shooting pain that comes from the back of the neck on the right side and goes over and behind the ear ,,,etc,,etc.    

He is a patient of the Veterans system.... we are convinced that the diagnosis is correct .

He is told by his surgeon  (outside of VA )    that all conservative measures have been tried and he feels that cutting the nerve would be the next solution. We trust his surgeon .

A neurologist from the VA has  said that the good news is that there are Many medications to try.  
My husband does not want another surgery but does not know how much more pain he can continue to take on a daily basis.

  From my perspective ...I saw my husband become a shell of his former self while going through the previous DAVF pain until it was finally discovered to be the issue ,,,,he was on Fentanyl patches to help him cope.    I guess for me the surgery seems a viable option,,,,,,however,,, and now the reason for this long story,,,, I would appreciate any input as to whether this nerve cutting works and can both sides be done,,,,is there any down side?  Anyone had this done??? How are you now???   Thanks so much for having forums such as this for people to share their questions and experiences. B

[tracinodaros]

OMG!  I have occipital neuralgia on the left side!  I had a Metronic stimulator installed in my neck and back in May 2016 and it stopped working, but it really was not helpful.  I am to the point now where I am looking for someone that has had the occipital nerve cut too because that is my next step.  I can't live like this anymore.  I have no life - I go to work, come home go to bed.  the pain is so bad!  If anyone has had this surgery, please reply.  I am hoping to get this done so if I get it done, I will let you know  Traci

[cz29t8]

I am going to a consultation for getting the nerve cut. I can not live like this any longer. I want to talk to somebody that has had it done. Please somebody talk to me. Thanks so much. I am scared and close to suicidal.

[MacHugh]

Thanks so much for the site and the info.  We have had two different opinions and last night after seeing his doc again it has been decided he needs to have both left and right side done,,,however due to previous surgery there and an embolization the surgeon feels that finding the exact nerve easily is a long shot  (scar tissue and all )  .     He will be suggesting that he go in through the spinal cord area ( I hope I am saying this correctly) and search the exact nerves there and cut the nerves at that point.    It is a larger surgery but the chances of it solving this issue are also much higher.  Not sure when or if this will happen.  Thanks again B

[nancy99n]

Please visit this site
http://www.fpa-support.org/
It is a support group for facial pain.

There has been much discussion about NOT cutting the nerve.  It is a drastic step.  There are many procedures available and if I were your husband I would research them all and get a second opinion before taking that step.

Best wishes