So, I have severe nerve damage on the left side of my face from a craniotomy a few years ago. I have had nerve blocks, surgery to sever the nerves and neurostimulator implanted. I have been to several pain management doctors, including a two week hospital stay to try and find medications that will help. The constant crushing pain I use to have is controlled with my neurostimulator. BUT the stabbing, burning, electrical pain is not. I have tried every medication you can think of. I'm so frustrated and confused. Do I give up? Is there anything out there that will help? Do I need to just live with this horrible pain? Has anyone tried a pain pump? I'm curious if meds given in smaller doses over the whole day would keep some of the pains at bay. No one in my area can help me. I've got calls into my neurosurgeon at the Cleveland Clinic. Waiting/praying for some good news of help. I am going to a chronic pain psychologist next week to help with my mood, guilt, depression etc.. Any help or suggestions would be greatly appreciated.
I'm not well versed enough in the medical options to give any advice there...but i can offer a hug. *HUG*
And please don't give up. I've been there and know how tempting it is to just lay down and die, but... As the saying goes, its the squeaky wheel that gets the grease...keep making noise until someone finds the right kind of grease for you.
Wishing you some peace,
~Mistee
It sounds like you are continuing to push for answers and while dealing with a high level of pain and that is absolutely wonderful! I am one of the people who get at least some relief from pain meds. A doctor once told me that controlling severe pain with pain meds is accomplished best with a steady flow of the meds, in other words, even if the pain didn't seem all that bad after 4 hours, I needed to take the meds anyway. For me this has proven to be true, but obviously, each person is different. I found out the hard way when I decided I didn't feel too much pain after 4 hours so I would skip a dose. Two hours later I was beyond a 10 pain level and vomiting so I couldn't even take more meds. I ended up on suppositories (NOT fun) to get the nausea/vomiting under control and then back to pain meds. Needless to say, I didn't miss doses after that and as the pain level subsided I weaned myself down slowly and cautiously from the pain meds.
All this to say that perhaps a pump, with a steady does may be helpful. Wishing you the very best!
Are you on ANY anticonvulsant drugs? If not, you may need some. ((((((((((((hugs)))))))))))))
Thank you Misty. I appreciate the Hugs!
Donna, I am on tegretol and neurotin right now. Thank you for the hugs as well! :-)
Lila, I try to be positive and a fighter. This has taken over my life. I'm trying to stay strong and not let it win!!!
sounds like you are taking control of a situation that would send anyone reeling. dont't give up, you fight so well be proud of your efforts and the pain clinic psych might help some also, our mental strength does make such a difference to how we deal with constant pain and it sounds like some emotional support is in order as you are searching your hardest for medicinal balance at the same time. stay strong hun xxxxxxxxxxxx sorry couldnt offer some advice
I can understand no one in your area thing i live in the country and have had to travel a hr or two to get to some people that actually know something about facepain I would even drive further If I could find someone more equipped to help. We are all in this together do not give up hope have someone go with you to the doctor that knows your situaiton to help explain being in pain we can't think of all the question we could possibly ask I have made the mistake of going by myself everytime I feel if my mother was there with me she would have been more objective i believe thats the right word i'm looking for. to help me get some right answers. My last neuro told me at least i didn't have a brain tumor and that neuropathy and neuragia were the same thing. And if i wanted surgery he doesn't do that he just prescribed meds. What a jerk hes fired im on to find someone else who cares i believe that is key.
Hi jstagrl, good for you for firing that jerk. I just talked with my doctors at the Cleveland clinic. They are about 3hrs away from me. But they are going to refer me to a pain doc that deals with chronic neuropathic facial pain. I'm keeping my fingers crossed. I hope that you find someone also to help you. Hugs
Have you tried anti seizure meds? They are working well for me. I don’t have as bad pain . They are in several articles i read as treatment for nerve pain.
One of the most radical things I've seen on here was Ketamine Infusion -- do a search on here or google
2 people talked about it on here
Extreme - but on the lists of what you would think you might not ever do till this pain reminds you that you will do anything!
Hi sorry you are going through so much. This past year I have had about 9surgeries to try and get some relief for my TN. Right now I’m going trough a trial for occipital nerve stimulator. Is is not working but it is the last step before signing the consented for the next surgery call deep brain stimulation. Not sure if you would consider this surgery but ou might want to look into it to see if its an option ??? Good luck and don’t give up
Has gamma knife been an option for anyone?
I'm way past Gamma knife surgery and yes I'm on antiseizure meds Janice.
Andrea I hope they find something that will work for you. All the surgeries are so scary but if one will help I will do what needs to be done.
I am sorry you are suffering too. My Neuro doc did tell me a few more meds to try, then a med that is time released throughout the day. ? She did not tell me name yet or if it might be a patch. Do you notice weather and barometric pressure affect yours? Keep trying, don’t give up! There is Hope! Prayers for you. Daryla
I am looking into radio stereoscopic surgery now. It seems like a good option for me. The neurosurgeon thought i was a good candidate. Not much seems to help anymore.
Kim, have you looked into this option? I never even knew about until a month ago. It's not gamma knife, similar but not the same. If you look into it and need a referral I am sure the neurosurgeon I talked to would give you one. For the first time I talked to someone that completely understood. It was like he had the affliction.
I swear by my Butrans patch. It does not relieve all of my pain, but mixed with my carbo it helps.
The bonus is it is released constantly. It does leave an area on my skin that is covered in little itchy pimple like spots, but I can live with that.
I wont give up my patch. I tried to, and that was a huge mistake.
Best of luck, something will help. You just havent found it yet.
Smash
If you ramp up slowly (start at 5mcg/hr) its not bad. Im at 20mcg/hr and barely notice it. However if I put this on to begin with I bet it would make me cloudy.