[wsodell]

Please help. My wife has now gone for almost two years with very bad head pain (not a headache) in just the left side of her head. It all started we think just after she had left shoulder surgery to repair a torn labram. The pain started as a twinge in the base of her head about 3 months after the surgery. It slowly went up the left side of her head to the crown of her head and has now gone all the way over to just above her left eye. The pain is very very server....she has had kidney stones in the past and she says this pain is much worse. The pain is constant, and does not let up.

The first doctor trip, the pain was diagnosed as Occipital neuralgia and multiple rounds of shots were given over a few weeks time....no help at all. Meds were given...no help at all. After the pain moved over the top of her head the diagnosis changed to trigyminal neuralgia even though she still had pain in the top and back of her head.

The trigeminal pain was attacked using cyberknife treatments...3...still nothing.

We have tried ever med out there...some she just could not handle because of the side effects, but none of the ones she has taken have done anything for the pain except for a patch she was given by a pain doc called butrins (bad spelling I know). This patched did "take the edge off" for a time, but now not even it is working. She started off with a 5mil patch. The doc up'ed it to 10mil, but still no help anymore.

We were told by another shoulder doc that indeed fixing her shoulder the first time may have caused this and he went in and clipped a tendon to try and relax the shoulder muscles to help with the pulling on any nerve. We want know if this will help for a few months. The doc said it "could" help, but gave no promises. We just had that done last week.

We are now waiting on an appointment with a doc at Emery in Atlanta to see if he can do Peripheral Nerve Stimulation implants in her head.

There is a lot more to this story that I have left out because of time and space. My wife has lost almost 20 lbs and is now down below 100lbs. She is bed ridden and her life is just gone. We need some help and the medical profession seems helpless. Has anyone ever gone through anything like this?

[Burntmarshmallow]

http://www.painclinician.com/video/id/88
I have a PNS and know of others who have t.n., o.n. a.d. ect and have has PNS .
I cant really help with the question of if clipping the tendon to relax the should will help. I have Trigem Neuralgia . Have had my stim since 2002. Do NOT rush into this make sure you have a good doc and rep. the rep is important . travel to a good neuro if at all possible .not just the best you can find local.
sending low pain .
PEACE
BMW

[pumpkin]

Originally Posted by wsodell

Please help. My wife has now gone for almost two years with very bad head pain (not a headache) in just the left side of her head. It all started we think just after she had left shoulder surgery to repair a torn labram. The pain started as a twinge in the base of her head about 3 months after the surgery. It slowly went up the left side of her head to the crown of her head and has now gone all the way over to just above her left eye. The pain is very very server....she has had kidney stones in the past and she says this pain is much worse. The pain is constant, and does not let up.

The first doctor trip, the pain was diagnosed as Occipital neuralgia and multiple rounds of shots were given over a few weeks time....no help at all. Meds were given...no help at all. After the pain moved over the top of her head the diagnosis changed to trigyminal neuralgia even though she still had pain in the top and back of her head.

The trigeminal pain was attacked using cyberknife treatments...3...still nothing.

We have tried ever med out there...some she just could not handle because of the side effects, but none of the ones she has taken have done anything for the pain except for a patch she was given by a pain doc called butrins (bad spelling I know). This patched did "take the edge off" for a time, but now not even it is working. She started off with a 5mil patch. The doc up'ed it to 10mil, but still no help anymore.

We were told by another shoulder doc that indeed fixing her shoulder the first time may have caused this and he went in and clipped a tendon to try and relax the shoulder muscles to help with the pulling on any nerve. We want know if this will help for a few months. The doc said it "could" help, but gave no promises. We just had that done last week.

We are now waiting on an appointment with a doc at Emery in Atlanta to see if he can do Peripheral Nerve Stimulation implants in her head.

There is a lot more to this story that I have left out because of time and space. My wife has lost almost 20 lbs and is now down below 100lbs. She is bed ridden and her life is just gone. We need some help and the medical profession seems helpless. Has anyone ever gone through anything like this?

I have "occipital neuralgia" from all of my brain surgeries and I understand the burning pain. You are right. It is like no other pain I have felt before. I think ice and compression help but some people think it makes things worse. I wrap a soft ice pack with an ace bandage to my head. In order for me to work I spend all day with this funny wrap on my head. Every minute that I am not at work I am curled up in bed with the pain. I passed the first test to hopefullly qualify for a nerve stimulator but my insurance will not pay for it. They say it is still experimental for occipital neuralgia. This is the second time I have tried to get it approved by my insurance. Good luck and I hope things go well with this surgery. I would do anything to improve this pain.

[peteremond]

I just joined NeuroTalk and saw your post. How are you doing now? My friend has Occipital Neuralgia (ON) and is about to go see Dr. Hae-Dong Jho in Pittsburgh for a consult and see if he is a candidate for his nerve decompression surgery for ON. Have you looked into this procedure? Or do you know of anyone who has gone to see Dr. Jho?

I look forward to hearing from you.

Peter

[pleo]

I too have been suffering from constant head pain which is so severe that it is disabling. It started as a pressure feeling like my head was about to explode. Then a strange tingling sensation on the top left side of my head/ forehead. It has now progressed to a constant severe burning pain which has forced me to stop work - it is ruining my life. I have been on antidepressants for a couple of years and i do have some nose/sinus issues that my ent has told me are not causing this pain. My vision has deteriorated quite badly and am now experiencing eye pain. I have double vision which i am told is due to a nerve palsy, blurred vision, ghosting, halos, starbursts and am short sighted.

I did have a brain tumor removed may years ago but did not experience any nerve pain or neuralgia in the years following. It want until i started antidepressants that the problems started. pain medications and anticonvulsants are not doing anything, just bringing unwanted side effects. I am in desperate need for some help so if anyone has any suggestions would be greatly appreciated.

Could it be neck/posture related? My neck and shoulder muscles are tight and sore all the time, massage and chiro does not help.

[Murfisto]

Originally Posted by pleo

I too have been suffering from constant head pain which is so severe that it is disabling. It started as a pressure feeling like my head was about to explode. Then a strange tingling sensation on the top left side of my head/ forehead. It has now progressed to a constant severe burning pain which has forced me to stop work - it is ruining my life. I have been on antidepressants for a couple of years and i do have some nose/sinus issues that my ent has told me are not causing this pain. My vision has deteriorated quite badly and am now experiencing eye pain. I have double vision which i am told is due to a nerve palsy, blurred vision, ghosting, halos, starbursts and am short sighted.

I did have a brain tumor removed may years ago but did not experience any nerve pain or neuralgia in the years following. It want until i started antidepressants that the problems started. pain medications and anticonvulsants are not doing anything, just bringing unwanted side effects. I am in desperate need for some help so if anyone has any suggestions would be greatly appreciated.

Could it be neck/posture related? My neck and shoulder muscles are tight and sore all the time, massage and chiro does not help.

I, too, have been suffering from ON for more than 5 years and my pain manager has tried everything including RFA(radio frequency ablation) of my occipital nerves. the RFA worked, the first time, for about 3 months but succeeding treatments helped for shorter and shorter periods until they didn
't work at all. Finally, about 2 months ago, he recommended i see a neurologist who specializes in the use of Botox. I followed up and had my initial round of injections (the neurologist used just a tiny bit the first time and if tolerated well, used full doses the next time. My next time comes up in a couple of weeks and we will see if i do get upper extremity muscle and joint pain relief. I wish you good luck.