Hi, I am a 45 year old female who 5 months ago developed first TN1 in the right ear but then after two months it had turned into atypical and then a month later it spread to the jaw and then to the left ear. I have been on several different drugs, which I could not tolerate and did not help, some ven made the pain worse. I have been on tegratol but the side effects are severe for me. causing severe stomach pain and joint pain that has left me unable to hold my own weight up and I ahve lost 30lbs. (which I could not afford to lose) however, there are no other drugs left to try and it is the only one that takes away about 60% of my pain. I am scheduled to see a neurosurgeon out of Northwestern University this Wednesday. We are to talk about MVD surgery as well as a partial rhizomety, which is where they just cut the root of the trigmenal nerve. Even though it is in both ears it is the right ear that is severe the left one I could get by with no meds if necesssary, so I am hoping they will do the rhizotomy surgery to the right ear. I do not care that it will leave me deaf in that ear or with permanent numbness on that side of my face, I will take that over the pain any day. However, from what I have been reading on these sites, is that most of these procedures are worthless for this type of problem so that is scaring. I cannot function with this pain and need help so bad. Have any of you seen a neurosurgeon out of Northwestern? Have any of you had procedures done and if so how did it turn out? How do you live and spleep with this?
Hi jolie,
I too have bilateral Atypical Type II TN. I was bounced around for quite a while before being referred to both University of Chicago and Loyola University Medical Center.
I was sent to University of Chicago by ambulance from Edward Hospital in Naperville for an emergency MVD. I was given a work up and because they couldn't see any compression on an MRI that was seen two weeks previously, they decided that I didn't have TN of any kind and sent home. Unfortunately, neither the neurosurgeons at University of Chicago or my primary care thought it was important to tell me that I'd been undiagnosed, so it was another year of being sent back to work and fighting with doctors to listen to me.
When I was referred to Loyola University Medical Center, I had the good fortune to see Dr. Douglas Anderson, a neurosurgeon who understood Atypical Type II and knew that it could be bilateral. Also, fortunately, he was one of the few neurosurgeons who followed his patients post-op and saw an alarming trend with his Atypical Type II patients. He told me he no longer does any procedures on his Atypical Type II patients because he found that the procedures could:
A. work for a short time and the pain came back
B. not work at all
C. make the pain worse
Additionally, he felt that the complications of any of these procedures outweighed the need to give it a try.
I don't have any experience with Northwestern, other than hearing it's a wonderful hospital with amazing doctors. However, no matter how good your doctor is, it doesn't eliminate the possibility that everything could go very, very wrong. We have a moderator here, who was the perfect candidate for MVD - Type I, early 20's, healthy, in good physical condition. She had the MVD last May and had every complication known to brain surgery. Cerebral Spinal Fluid leak, meningitis, infection in the brain, had part of her skull permanently removed because of infection, seizures, and finally coma. She had countless brain surgeries to try to control the complications. We still don't know how it will end and it's been almost a year. Ironically, the original MVD did cure the Type I pain (up until now at least) but at the cost of her health, her emotional well-being and also that of her family.
There have been a lot of discussions here about rhizotomy, you may want to research. One of the comments that sticks out in my mind was one member telling another member who was enthusiastic about having the nerve cut, was words to the effect "if you don't mind having one side of your face drooping and constant drooling, by all means, go ahead and have a rhizotomy!" Rhizotomy may or may not work and it can also cause another facial pain condition, Anesthesia Dolorosa, on top of the ATN that will make things twice as bad as before.
There are so many things that we're not told by the doctors performing these procedures. They have us sign a surgical waiver, stating that we understand the risks involved and we do not hold the doctor liable for any complications. But we aren't told everything, because if we were the surgeons would be out of work for the most part.
Our pain drives us to a desperation that makes us want to throw ourselves under the nearest bus or jump off the highest skyscraper in downtown Chicago. It makes us want to take the chances of trying a procedure because we can't stand the thought of being in pain for a second longer. I understand all that because I've been there. However, through a long three year process I'm at a point where my pain is relatively controlled. I'm seen by my primary care, a neurologist who understands Type II exists and is knowledgeable about it, and by a pain management doctor who thought Type II was a psychosomatic condition, but accidentally tried a pain medicine patch that actually works. I'd been on so much Hydrocodone for about six years that I had developed Acetaminaphine toxicity. Unfortunately, up until that time it was the only thing that worked. Fortunately, I was tried on Butrans patch 20 micrograms, which keeps a constant flow of pain medication into your system, without the side effects of most of the other narcotics. I can't say enough good things about Butrans because it saved my sanity. I was also previously tried on Suboxone (similar to Methadone) but it made me high as a kite and didn't touch the pain at all. Also currently on 3,000 mg of Neurontin/Gabapentin, which was the only anticonvulsant that I didn't have a bad reaction to.
If you are interested, I'm seeing Jennifer Ahmadian, neurologist and Abdel Fahmy, pain management, (who now understands much more about Type II than before he met me), both are in Naperville, but also practice in other areas and other hospitals.
I wish you luck in finding the right doctor and making the right decision for your future health and well being. We bilateral Atypical Type II patients have the challenge of not having the same success rates as Type I's for any of the recommended procedures. We're living in constant pain and frustration. The compression on the Trigeminal nerve may or may not show up on an MRI. At any moment we could go into remission or we could deal with this for the rest of our lives. We don't know and the doctors and experts don't know. It's a difficult way to live.
Hi Jolie; I live in Chicagoland and met with the people at Northwestern. Northwestern is a terrific facility and have a quality staff. I met with Dr Rosenow. IMO, he is super intelligent, but a little arrogant. They have good people down there. I had an operation May 17th @Advocate Lutheran General by Dr George Bovis. I had an tumor that was the cause of my TN and it was operatable, your situation is entirely different.
Gloria's comment was outstanding, maybe the best insight you can get regarding your situation and Chicago medical people..
God Bless.
Thank you both so much for your input. I did not know about the anesthesia dolorosa, god that scares me. but here is my biggest problem, I am allergic to all opiods and I have tried neurontin, elavil, and lyrica and everyone of them either caused other problems or actually made the pain worse. So, the only thing i have been left with is tegratol and this causes me serious liver problems and stomach issues, so I cannot stay on it for any length of time. So, I do not know where to go from here for pain control neither do my docs, which by the way are out of Loyola, but they have been pretty useless as far as I am concerned, which is why I am now going to Northwestern. Although I am glad that they have worked for you Gloria. Jerry I too am seeing Dr. rosenow, I am hoping he can help, but from what I ahve been reading on here scares me about doing any kind of surgery. so any of you know of any other treatments or pain meds besides opiods and the ones I have mentioned here? How about tense packs? Have any of you tried them? Oh and Gloria thank you for the pain doc suggestion but I have been to three different pain med centers including the one at Loyola and they all have said that there is nothing they can do for me because of my serious allergy to opiods and because I have already used up all the rest of the drugs usually prescribed to treat trigeminal neuralgia, so they just send me on my way. anyway, if you know of any other types of drugs or treatments I would be very interested, thank you both.
Jolie,
I don’t have any experience with Northwestern since I’m outside of Indianapolis. But I want to wish you the very best and wisdom for your doctors.
I have both Type I & Type II. The Atypical Type II is the most prominent and much harder to live with. I did extensive research on all the procedures available and decided not to have any of them, against my doctor’s advice. It’s a challenge and a struggle most of the time, but I feel confident I made the right decision for me.
Please keep us informed on your progress and know you can count on us for support. I highly encourage you to contact Red Lawhern, one of the Administrators here. He’s the research guru, and if anyone can give you the best information and advice - he can.
I ran into a woman who has had TN for 20 yrs. We met in the
E.R. She said she had stopped taking all meds because they all stopped working. She also said that she refused surgeries. She spoke of holistic dieting and something called oil washing I think. I honestly have to look further into these things but here is a link I came across after reading about your allergies. I’m sorry, I can’t imagine living without pain killers to pacify my attacks. Try putting a heating pad ,atop your pillow, in your pillow case and resting your face on it. This link speaks of peppermint oil n vitamin B12 http://www.earthclinic.com/CURES/trigeminal_neuralgia.html
I read about "oil pulling" from another member comment. I simply can't imagine swishing oil around in my mouth for 30 minutes at a time...that would stir up a lot of pain!
I also can't imagine how it could actually affect the trigeminal nerve at all. It doesn't make any sense! I also wonder if she went into a spontanious remission, but mistakenly gave credit to the oil pulling? There's no proof at all that ANY holistic treatments help or cure Trigeminal Neuralgia.
There are a lot of holistic claims of cures that have no medical basis. My suggestion is to be skepital until you see actual medical studies proving such a procedure works.
MsChief said:
I ran into a woman who has had TN for 20 yrs. We met in the
E.R. She said she had stopped taking all meds because they all stopped working. She also said that she refused surgeries. She spoke of holistic dieting and something called oil washing I think. I honestly have to look further into these things but here is a link I came across after reading about your allergies. I'm sorry, I can't imagine living without pain killers to pacify my attacks. Try putting a heating pad ,atop your pillow, in your pillow case and resting your face on it. This link speaks of peppermint oil n vitamin B12 http://www.earthclinic.com/CURES/trigeminal_neuralgia.html