Last week I had my first appt with Neurologist. I waited 2 months because they said he specialized in Facial pain. He added Tegretal to my 2400 Mg of Neurontin but offered no alternatives. Is this common?
I was anticipating info on new and upcoming treatments such as Radiation, Laser treatment, etc. I left feeling no more informed or hopeful then before I went.
Is this all there is? I live on mind fogging meds and hope they continue to work?? I use heating pads for breakthrough relief and fear going to my grandson's football game because the cold may bring on a breakthrough episode? I feel blessed the meds are working fairly well as i read they don't work for others. I guess I just expected options to be thrown out at my appt. I don't even see any reason to go back to the Neuro as my GP prescibed the Neurontin already.
I had a similar experience with the neurologist whe treated me before my MVD. He didn't seem interested in getting to the cause of the pain, only offered more and more mind numbing medication. I am in my mid-40's and still raising my children. I have to be able to function and be there for them. So, I was persistent in my research and found a surgeon who was able to cure my TN through MVD. Had the surgery in June and have been pain free since then. It was well worth the recovery time to get my life back. Two compressions were found on the third branch of my nerve, neither of which was highly visible on the MRI. No amount of medication would have treated the compressions on the nerve from these vessels so I am glad I was persistent in my search for cure not just symptom relief. I was to the point that talking and eating were unbearable due to the pain. What I learned through my 4 year experience with TN is that you must be your own advocate. I saw over 9 doctors during that 4 year period. Some were more empathetic than others and interested in helping me. Some had no idea what to do and no experience with TN. Do not give up until you find one that will listen to you and give you options...there is reason to hope and it is possible to be cured of this horrible pain.
I am right up here in Carmel IN. You might think about coming up to Indianapolis for your neurologist although I don't think many are great. We do need to be our own advocates!
There is a laser treatment facility up in Myrtle Beach that you could look into. They don't take insurance and the treatment is about $7000.00. How have you been lately?
If you are thinking about looking into this place in Myrtle Beach, contact Red about it first. I recently was researching this place, and Red was able to give me some very interesting and important info about this treatment. I have been feeling horrible lately and feeling desperate for relief. The info I read on their website sounded too good to be true. Unfortunately, the saying holds true: if it sounds too good to be true , it is.
Christine said:
There is a laser treatment facility up in Myrtle Beach that you could look into. They don't take insurance and the treatment is about $7000.00. How have you been lately?
It pays to be cautious naturally. I have a friend who's father had the treatment and it has been successful for over a year. Can you share the information from Red somehow?
It may be that they don't take insurance because insurance will not fund this treatment. I then ask myself the question why..............................
Christine said:
There is a laser treatment facility up in Myrtle Beach that you could look into. They don't take insurance and the treatment is about $7000.00. How have you been lately?
Good Point Jackie. According to my friend it is still experimental and they have not shot hoops through the fda and other spots to get it covered. I don't know..............I do know that he was in constant pain and this was his final alternative.
The manufacturers have to fund the testing of their devices to gain approval. Some manufacturers choose not to proceed with that testing in the full knowledge it would not gain a certificate to support efficacy.
Use the search box and search myrtle beach and you will see past posts, it’s unfortunate so many have paid the outrageous cost with no relief. Please do your research, like my friend Jackie said if it sounds so good it probably is and past posts have proven that. Just my two cents
Hello Yvonne, i was recently diagnosed with ATN. I've had it for years but never had a name for it. My Neuro has me on oxcarbezapine instead of Tegretol due to less side effects. Also put me on Cymbalta which helps with firing of nerves. That is helping intensity of pain and is suppose to get better. I think weather really effects mine. Also being on an airplane. ? Hang in there. There is much hope from what I am learning. This is a Great site! Daryl
Ok...so meds or MVD seem to be our only options from what I am hearing. My husband mentioned the surgery a couple of times during the appt but the Neuro kept saying let's try meds first! I am confused by that. Is the MVD NOT that successful? Do the Neuros not realize how mind fogging these drugs are?Even with the meds I am still in moderate constant pain all of the time. Throbbing in my left jaw and teeth and pain like a sore gland under my chin. He added tegertol but it is making me have "buzz head" and feel unbalanced. I think i am going to stop it and just stay with Neurontin! UGH
My pain was very similar to yours. All teeth related. Although, my pain was "electric shock" in nature (Type 1), by the time I had surgery it had progressed to the point that 90% of the time if I was moving my mouth I was getting shocked. I also had pain in my jaw, some swelling from time to time on my TN side, and just generally was miserable. Doctors will also tell you TN doesn't cause swelling. Yes, it can. I had a hard time tolerating the meds. Trileptal worked for a while, but Tegretol made me feel "buzzed" as you said. When I mentioned surgery to my neurologist, he said that would be a last resort and you could live on the drugs for many years and do fine. I disagree with that. Having lived with the pain on meds and now having had the surgery- I am an advocate for surgery IF you find a qualified and highly experienced neurosurgeon with much experience treating TN. I was fortunate enough to find one and have not regretted for one second having surgery. It was very scary to think about someone going into my head. But it really was worth it and not as bad of a recovery as I had feared. I had read many scary things about failed MVD's. I really feel so bad for people who have had this happen. I am blessed to be one of the many that MVD has cured of TN pain. I still have some slight numbness, but that is a small price to pay for getting rid of the pain! Please do not give up your search for treatment. Remember that doctors work for you! If you are not happy with what one tells you don't be afraid to get another opinion, and another and another if needed! There is a list on this website of specialists across the country that specialize in TN. Utilize it if you can. This website, and others, was invaluable to me in my search to rid myself of this awful pain. I found that anyone who has lived with this pain is usually willing to help others if they can. It is very hard for people who have not experienced it to understand. That includes most doctors! Best of luck to you! I hope the meds will give you some relief soon.
blder1 did you ever experience type 2 after the type one and did the pain ever move to your upper jaw area..my mri also came back showing nothing so the dr says
blder1 said:
My pain was very similar to yours. All teeth related. Although, my pain was "electric shock" in nature (Type 1), by the time I had surgery it had progressed to the point that 90% of the time if I was moving my mouth I was getting shocked. I also had pain in my jaw, some swelling from time to time on my TN side, and just generally was miserable. Doctors will also tell you TN doesn't cause swelling. Yes, it can. I had a hard time tolerating the meds. Trileptal worked for a while, but Tegretol made me feel "buzzed" as you said. When I mentioned surgery to my neurologist, he said that would be a last resort and you could live on the drugs for many years and do fine. I disagree with that. Having lived with the pain on meds and now having had the surgery- I am an advocate for surgery IF you find a qualified and highly experienced neurosurgeon with much experience treating TN. I was fortunate enough to find one and have not regretted for one second having surgery. It was very scary to think about someone going into my head. But it really was worth it and not as bad of a recovery as I had feared. I had read many scary things about failed MVD's. I really feel so bad for people who have had this happen. I am blessed to be one of the many that MVD has cured of TN pain. I still have some slight numbness, but that is a small price to pay for getting rid of the pain! Please do not give up your search for treatment. Remember that doctors work for you! If you are not happy with what one tells you don't be afraid to get another opinion, and another and another if needed! There is a list on this website of specialists across the country that specialize in TN. Utilize it if you can. This website, and others, was invaluable to me in my search to rid myself of this awful pain. I found that anyone who has lived with this pain is usually willing to help others if they can. It is very hard for people who have not experienced it to understand. That includes most doctors! Best of luck to you! I hope the meds will give you some relief soon.
ayre, my pain was concentrated under my bottom right teeth. It was probably 90% shocking/stabbing in nature, but it was so severe at times that it felt continual. It did not spread to my upper teeth. The neurologist I saw said my MRI looked normal. The first neurosurgeon I consulted said he thought he could see some compression but was hesitent to operate. The neurosurgeon who did my surgery said MRI's are not at all accurate at diagnosing TN. I'm not sure how much attention he even gave to my MRI. He diagnosed and operated based on my symptoms and history. He listened, said he thought he could help me and then did. He said the two compressions he found fully explained why I was hurting where I was. I woke up from anesthesia without the elecric shock nerve pain and have not had it since.
Interesting that you said that blder1, one place in Pittsburgh that I called said that they cannot properly see blood vessels or veins sitting on the nerve until they get in there.
Christine, do your friend has a card here in LwTN? will be nice to talk with the source...
Yvonne, this is the route doctors lead, medications first, after all it's a surgery in the head and most of the people are senior, and when that stop working surgery come up...With that said, also i know that it better to do it in the first 10 years if not less becase statistically more success, and of course when it's come to MVD more success showen with TN 1, but i am not saying it cant help to TN 2. The meds oh boy I am only 28 and it cause me dizziness, sleepy and unbalance
So offerd later, because like every surgery it has his risks, but better do it sooner statistically, talk about a paradox, make a wise decision as much as you can READ AND ASK
My Neuro did a 15 minute exam, said he agreed with the findings on the MRI, (although it turned out that he had not yet received them because they were done at a different hospital), raised the dosage of Tegretol my PCP had prescribed up to 1100 mg, and told me that T.N. was called the “Suicide Disease” for a reason-- because the pain is so horrible. No other meds were suggested even when I requested alternatives. I found a new Neurologist.
