First I want to say thanks to everyone who takes the time to write their stories and try to help others with similar problems.
I too have severe nerve pain in my face. Atypical Trigeminal Neuropathy is what they call it. I have had this since July 2007 after a dental procedure. It took a while to figure out what was wrong with me and to try to navigate through all the heaps of info on the web about this condition. I have a numb mouth, with pain, burning and tingling as a result of it. I have a locked jaw and a numb tongue that feels like it is on fire. I have pain on the maxillary, mandibular and the eye branch on my right side. On my left side only the maxillary.
I have gone to MANY doctors who I first had to 'convince' that I indeed have severe pain to. I suppose on good days, it is hard to tell that I suffer immensely at times.
I have had numerous injections and nerve blocks. I've been on Oxycotin and Morphine - Lyrica and Gabapentin. The only medication that has ever done me a whole lot of good is Tegretol - and then only to realize that I am allergic to that medication. Go figure!
Two years ago I found a doctor in a different state who also in the beginning was a bit reserved and not sure if I indeed have all the pain I said I did. He did a nerve conduction test and that is when I finally had it on paper - black on white - damage to all three branches of the Trigeminal Nerve. Like one person was saying - it is rather lonely, cause most people don't get it. They do not understand how debilitating it actually is. And it is not like it is just you. If you have a family like I do, then they suffer a lot as well. There are many things I cannot do out of fear for triggering more pain or just simply being too tired.
Right now though, my doc is saying that I may be a candidate for an operation. They would operate in "spaghetti' long strands along side the trigeminal nerve, connect those to a low frequency box that would send out signals to the nerves to calm them down. From what I understand it is the same as the ones that are operated in to spinal cords for people with back pain. My doc has performed 5 of these with ok results.
Is there anybody out there who has had an operation like this one? I'd be grateful for any info
This is called a peripheral nerve stimulator, and it had one implanted in August 2013 for ATN. My surgeon , Dr. Jeffrey Brown in New York,is one of the few doctors who use this device for trigeminal neuralgia pain. I am very happy with how it controls my pain, and I no longer take any medication.
Pleas ask me any questions you might have, I am happy to share my experience.
Christine
I've been suffering for 14 years of ATN. Nothing seems to help. It simply just takes my breath away.
My Neuro came up with the stimulator and I'm scared to death.
What if it would make the pain worse?
I can not deal with more pain, my life is not worth living anyways right now.
Don't get me wrong.
Thank you for any replies.
Susan
Christine said:
This is called a peripheral nerve stimulator, and it had one implanted in August 2013 for ATN. My surgeon , Dr. Jeffrey Brown in New York,is one of the few doctors who use this device for trigeminal neuralgia pain. I am very happy with how it controls my pain, and I no longer take any medication. Pleas ask me any questions you might have, I am happy to share my experience. Christine
Susan, I can understand your fears, but I honestly don’t think it is possible for the stimulator to make your pain worse. Essentially the stimulator delivers electric stimulus to the nerve that " turns off" the pain stimulus. While it is not a cure, it is a fantastic pain management device. It is rare that I feel pain anymore, and if I do, I adjust the settings on the stim until the pain is under control.
The procedure itself is not very invasive, as the leads, and battery, are placed just under the skin. Both my trial and permanent were outpatient. The recovery is not difficult, but you will not be able to lift anything heavier than five pounds for about six weeks.
I encourage you to really explore this option, as it has worked so well for me. Again, I am happy to answer any questions, so ask away!
Christine
I am going in to my doctor tomorrow to start the process of getting a PNS. Christine, your positive words give me SOOOO much hope. I hope that I can post my success story sometime this summer.
The neurologist I was seeing never even heard of peripheral stimulation, same with the UW pain clinic I was at they didn't know anything about it either. Make sure you find a place that actually does them.
I just switched to the surgeon that did TL's PNS and am still finding out whether I qualify for one.
Even if you don't get a PNS, it seems the surgeons that can do them are more educated or specialized than the typical neurosurgeon (who did my MVD) and will know more about what to do in any case.
Susan, how did it go? I too have a PNS and it really helps! Don't be afraid of the procedure, it is quick and relatively painless.
I have an appointment today but it looks like I can not afford the procedure before next year. My flexible spending account is already maxed out :( had to stop physical therapies as well due to the co-pay . But thanks for asking, I'll let you know how it goes .
