[pono]

recent DX-occipital neuralgia for constant & often debilitating Head/neck pains which began after accident w/ TBI & other injuries. After trying many things, my neuro feels BOTOX would be best. I also have flares of TN.

nerve blocks (Sarapin/Lidocane) help but duration of relief varied--from few days to weeks. DR feel Botox will provide better & longer lasting relief.

I'm willing to try but the issue now is $$$ cost. After agreeeing to try botox I awaited "approval" from Insurance Co. Drs offices said ok'd but w/ high copay--$200 or so. THen waited several more weeks/months for Dr's office to get BOTOX. I was recently informed it was now in & scheduled appt. [for next week]

BUt recent conversation w/ my Medicare Pt. providor-Humana-- was told
BOTOX would NOT be covered, since it's a "specialty" drug and if I had these treatmts would have to pay in full. a financial hardship but IF this treatment could/would provide relief .....what price to put on pain relief???
There is no guarantee it will help me but sounds promising. BUT I've had so many experiences w/ other "promising" treatmts that didn't work...

would appreciate hearing from others-- experiences w/ BOTOX for these condtions??? effectiveness, duration of relief, treatments [how many??} and if/how /who paid for BOTOX???
does any insurance cover BOTOX??

could it possibly be "subsidizied" as other drugs are --for low income patients???


OR are there other Options-- treatments/interventions that may be more viable-- money or other wise???
I"ve tried craniosacral therapy in past w/ some success, but no practioners in area I live.

The pain is constant & often severe, turning into what feels like migraines (which I've had since a teen) or ice pick or even cluster headache symtptoms. some have been so bad I did go to ER.... and was given shots of Toradol or other pain meds.

I've been to many DRs, specialists, pain mgt ..... w/ little success or relief.
My head/neck hurt so badly I can't sleep at nite or find comfortable position. I have other problems w/ other chronic pain & neuro disorders but these have become unbearable, esp. since another recent head injury from a fall .

Perhaps I should be posting this elsewhere (Headache or other FORUM)??

IF someone could help w/ this --on any level--including rePOSTing in other forums that may be more appropriate , would appreciate. as welll as suggestions, insights, experiences others may care to share.

THANKS...

[Silverlady]

The subject pretty well says it all. You might get more opinions/answers by posting it all on headache forum and the spinal disorder forum. They all deal with pain.

Billye

[Diandra]

Hi Pono,
I did botox injections twice for headaches, trigeminal neuralgia and neuropathic pain in my head/neck/shoulder...all on the right side that was unrelenting. The first time I did, it worked beautifully, about 75-80% pain relief and lasted about 3 months. I was very happy I did it. The odd thing is, I did it again about 5 months later and it did nothing at all. The pain mgmt doctor said that is just the way it goes sometimes. He had no explanation.

I did have to pay for it myself but, a friend advised me to go directly to the pharmacy provider(Medco) and get it from them. It was shipped to me and I brought it to my doctor rather than having the doctor get it, it saved me a bit of money. It was several years ago but, I think I paid something like $400 and that amount gave me a series of injections that were done in my neck/shoulder and they were not too painful.

I have also done cranial sacral work and like that as well but, it is hard to find someone who does it well.

I would say, since you are in such pain, it would be worth trying and do price shop for the botox.

Have you ever tried steroid injections in the affected area or toradol along with lidocaine? Sometimes the toradol with lidocaine brings down the pain and spasms enough to give relief for awhile.

I just started taking an anti-inflammatory, Voltaren, along with my regular Norco and Soma and it helped a bit.

You have my sympathy Pono. I know exactly what you mean about having head and neck pain so badly you can never find a comfortable position to lie down or even sit in a recliner and you just want to cry.

I wish you the best,
Diandra

[bhaag]

It sounds like we have alot in common! I joined today and you sound like me! I had an injection of lidacaine in the back of my head two months ago I will never do that again after the numbness wore off i felt like frieght train hit me in my head!
I cant even find relief from the meds I am currently taking I am gonna stop this Lyrica as it has some crazy side effects I dont like.
I also take imitrex, relpax vicodine's and fiorcets nothing can get me pain free. If when bad I have to go to the ER which I have multipule times!
WEll i wish you luck in the botox but I am curious about that myself~
THey still dont have any anwsers for me as to why I have been getting these headaches. I have been getting them for over a year now and dont have any clue WHY!
My appt is tomorrow and I have learned so much on this website in one day that I am bringing to my headache specialist! CAnt wait to see her reaction!

[razzle51]

they cost about $2000 A SHOT HERE