I won't tell my entire story right now but just had a question about Multiple Scleroris and TN. I have both and was recently told that there's not much that can be done when you have both conditions. That really scares me because I can't imagine a future with this type of pain along with my MS symptoms. I'm hoping there's some type of procedure or surgery if the TN gets progressively worse down the road. Right now my pain is being managed by a high dose of Neurontin but at it's peak last Summer, even the Morphine I was given in the hospital didn't help.
Can MVD surgery or other procedures help people with MS and TN?
Hi, Vickie. I wish I could be the bearer of better news for you, but honesty compels me to tell you truth: the mechanism by which MS does its horrid work is small plaques which attach to nerves and interrupt normal function by destroying myelin in "patches". Thus there might be nothing for an MVD to separate. Plaques are too integrated with the surface layer of the nerve to remove safely without creating even further damage. If your pain is traceable to a plaque on the nerve, then you may be restricted to medication solutions rather than surgery.
That being said, if you have a positive finding of discrete nerve compressions in MRI imagery, then there are a few neurosurgeons who might consider an MVD as a step toward reducing TN pain. The deciding factor may be a determination of whether MS plaques have also attached to the trigeminal nerve, and whether you are willing to settle for partial pain relief in view of the normal risks of side effects in surgery. About 10 to 15% of all MVD patients have ongoing problems with facial numbness, CSF leaks, or Anesthesia Delorousa. A few lose the tearing reflex of the eye and have a risk of ulcers on the eyeball. Rarely, surgical error may cause hearing compromise or loss. These are not trivial side effects. The possibility of such effects has to be balanced against the potential for benefits.
You'll need to talk with an experienced neurosurgeon about this trade-off. Preferably someone who has done a few MVDs on patients who also have MS. You may want to talk with the National office of the TN association, to see if they have records of any physician known to be willing to tackle such high risk procedures.
Hi Red, Thanks so much for taking the time to write and to fill me in on my options. Ugh...doesn't sound too promising. I'm just hoping the TN goes into permanent remission one of these days!
Do you have TN yourself? Do you happent to know if there many on this site that have MS and TN?
My spouse of 32 years is the TN patient in our family, since 1996. She has been successful in managing TN pain on a monotherapy of Neurontin. The statistics quoted by the US TN Association on MS and TN indicate that something on the order of 5% of TN patients may have MS. Among this group, some have TN as a "symptom" of nerve plaques, and some have TN separately from MS as such. Figuring out who is who (or which you are) is important to developing a course of treatment or management for pain.
Hi Vicki. I too have TN and MS. I have been thru the different types of treatment for both conditions. As Red said the MVD is not usually an option for MS patients due to the nature of how MS effects the mylin. I did have the Gamma Knife procedure last February. The jury is still out on the successfulness of that procedure, but it can be repeated if we choose to go that way.
There are a lot of meds out there to try to control the TN as well as your MS meds. What are you taking for your MS currently? Please feel free to contact me if you ever need to talk. There are not a lot of us out there who have both TN and MS. Remember that faith and hope are good things, maybe the best things.
Thank you for your message....so good to know I'm not alone, although I'm really sorry you have to go through the challenges of MS and TN.
Is it the Gamma Knife surgery that can cause permanent numbness? Although that doesn't sound nice I think I might choose that over the pain. It's a little discouraging to know that not much can be done for MS patients with TN. :(
For my MS I'm on Copoxone but I'm thinking of switching to another DMD. I'm on a pretty high dose of Neurontin and Baclofen for the Trigeminal Neuralgia and it's working really well thankfully.
How are you feeling? Which medicines are you taking for your MS/TN?
Thanks for the encouragement to have faith and hope. These are the two things I cling to. :0)
Vicki, I would caution you that Gamma Knife has a very mixed record of outcomes and the related variant Cyber Knife even more so. Especially with an MS patient, though to some extent with any other facial neuropathy pain patient, I would mention that at least two surgeons have informed me that when they have attempted MVD surgery following GK, the have found significant areas of generalized nerve damage, adhesions and scarring from the GK. The procedure also does not provide pain relief as often or as long, in patients for whom either GK or MVD are considered appropriate. It may be that it isn't appropriate at all in MS patients, due to the existence of plaques on the nerve.
I was just diagnosed with MS last month, but I have lupus that attacked the myelin coating on my TN nerve, and then on other nerves, causing MS. I'm glad Red saw your question and had an answer. He is a master at face pain research and was part of the Trigeminal Neuralgia association's staff.
I am glad to read that your TN pain uis under control right now. If that ever changes, don't give up hope. Most people I've talked to here go through periods of remission that last for years. Me included. There are also SOOO many different combinations of meds that you can try. If you are not doing well with what you are on, get your meds changed or the dosage changed or add another. Hopefully you will have a Dr. willing to be patient during that process, because this is the toughest pain issue a person can have I think. Any of the neuralgias of the head and neck are horrid. Again, just don't give up hope. Each person is different, and different meds work for them.
In fairness to TNA, I should offer a minor correction. I was their volunteer webmaster and a member of their Board of Directors for three years, but I was never on paid staff. I re-hosted the domain, re-built and greatly expanded their home page during 1998-2001. In the year before I left the Board, the site got an Aesculapius Award of Excellence in web-based health communications, from the Health Improvement Institute. The five organizations recognized that year were
You must have a natural talent for these things along with all your training. I didn't even know TNA had paid staff, but I would still think that being their webmaster and being on the board of directors = employee. That meant a LOT of hours on their site.
I also went to your personal website, and I was quite shocked at how many of your spiritual beliefs matched mine, when I thought my beliefs were quite unique!
Sheila, I really appreciate your kind compassionate words. I'm sorry that you suffer with both MS and Lupus. I can't even imagine. Hang in there and write any time, ok?
Thanks Vicki! Just had the most strange coincidence. I have not heard your last name before, and just now I turned to the Classic movie channel, with all the oldies, and the whole day is dedicated to an actress named Ann Dvorak!!! Never heard of hear either, but I'll watch the movies to see her.
Hi Doc, nice to meet you, I'm Julie and a newbie. I have SLE and was dx'd w trigeminal neuralgia yesterday by my neurologist of 8 yrs (I've had peripheral neuropathy about 16 yrs, Bells Palsy twice, shingles and now THIS nightmare of TN )along with others...
Doc, I found it very interesting what Sheila said about MS from lupus (inflammatory process) attacking the myelin sheath on her TN nerve. My question to you is this: What is the correlation between CNS Lupus, Vasculitis and TN?
Thank you and thank you for all your input on this board...I've been reading and reading for hours and caring and inquisitive physicians like you are FEW and FAR BETWEEN.
Thanks in advance; hope this post finds you well. Julie
Sheila said: I was just diagnosed with MS last month, but I have lupus that attacked the myelin coating on my TN nerve, and then on other nerves, causing MS.
Richard A. "Red" Lawhern said:
Sheila and Vicki,
In fairness to TNA, I should offer a minor correction. I was their volunteer webmaster and a member of their Board of Directors for three years, but I was never on paid staff. I re-hosted the domain, re-built and greatly expanded their home page during 1998-2001. In the year before I left the Board, the site got an Aesculapius Award of Excellence in web-based health communications, from the Health Improvement Institute. The five organizations recognized that year were
Small correction, JuJuBee: I'm not a medical doctor. My doctorate is in systems engineering. I do patient advocacy, research and technical writing for pain patients. My wife is a TN patient, presently under successful med management of bi-lateral ATN and TN. I know what I know from 16 years of reading and talking with over 3,000 patients. See our "Face Pain Info" tab on the menu bar above, for further information on these disorders.
Lupus doesn't cause MS that I know of -- though that auto-immune disorder seems to cause any number of inflammatory responses generally, and can do so by attacking multiple major organs. Vasculitis is also (probably) not a disease entity so much as it is an inflammatory response to some other and underlying disease entity (of which Lupus might possibly be one of several). The record of outcomes in TN pain from treatments by anti-inflammatory drugs has been very spotty, so far as I've probed the issue in medical literature.
Antonin Dvorak was a brilliant classical composer. Song to the Moon is one of my all time favorite pieces.
vesper
Sheila said:
Thanks Vicki! Just had the most strange coincidence. I have not heard your last name before, and just now I turned to the Classic movie channel, with all the oldies, and the whole day is dedicated to an actress named Ann Dvorak!!! Never heard of hear either, but I'll watch the movies to see her.
I agree. Red is a plethera of knowledge and very helpful with all his information. It is wonderful to know someone who is so well informed.
Sheila said:
Hi Vicki;
I was just diagnosed with MS last month, but I have lupus that attacked the myelin coating on my TN nerve, and then on other nerves, causing MS. I'm glad Red saw your question and had an answer. He is a master at face pain research and was part of the Trigeminal Neuralgia association's staff.
I am glad to read that your TN pain uis under control right now. If that ever changes, don't give up hope. Most people I've talked to here go through periods of remission that last for years. Me included. There are also SOOO many different combinations of meds that you can try. If you are not doing well with what you are on, get your meds changed or the dosage changed or add another. Hopefully you will have a Dr. willing to be patient during that process, because this is the toughest pain issue a person can have I think. Any of the neuralgias of the head and neck are horrid. Again, just don't give up hope. Each person is different, and different meds work for them.
