How I survived, researched, and overcame Trigeminal Neuralgia

I have discovered a change of events of my TN, without any surgery and without any doctor's help, I have managed to give up all the medication all on my own.  I still have slight pain of the TN, but it is far less than it ever was.  I am now able to control it and I am leading a normal life without the pain.  My doctor doesn't know yet.  I thought I might take all my pills back to my doctor at my next appointment for HRT.  I feel so thankful that most of the pain has subided and I'm now able to have my meals and clean my teeth without all the pain.  I do still have slight stabs of pain which are not that often now, but I am able to cope with it.  The slight stabs of pain are very weak, so they don't matter.

My daughter was diagnosed with TM in February while attending school in Madison Wisconsin.  She looked up her symptoms on the internet and asked the ER doctor if it could possibly be TM.  He said it was, gave her prescription for Tegretol and told her to find a primary care physician and a neurologist.  I am a retired nurse so I got busy here in the Boston area looking for a specialist and reading as much of the research as I could.  The neurologist in WI had only treated 2 patients with TM during the course of her career, and had seen a few diagnosed in the ER during her residency.  Usually, an MRI is ordered to rule out other conditions such as a brain tumor or Multiple Sclerosis.  MS symptoms can be similar because the sheath, a fatty covering on the neurons- (the cells that transmit nerve impulses), is attacked.  In some cases of TM blood vessels are compressing on, wearing away or irritating the neuron.  A general brain MRI can, in most cases, help rule these other diagnosis out.  After my daughter saw the neurologist she suggested a high resolution/multi-cut MRI on both sides with and without contrast.  It could be done in WI but because of the density of hospitals in Boston there would be more and newer machines with this capability so it was suggested we get it done here.  We got that before we saw the neurosurgeon, because without that what he or she could  tell us would be very limited.  While this was all happening my daughter was having side effects from the Tegretol/carbamazapine- needing to sleep 14 hours per day- hard on a 20 year old.  I spoke with an expert on medication and double checked with  pharmacist who said the second generation drug Trileptal/oxycarbazapine has a lower side effect profile and told her to tell the doctor to change the perscription.  After the switch she had fewer side effects and good relief most of the time.  Stress also was a big factor in having pain attacks so we found a practioner who help her with relaxation and self-hypnosis to keep the anxiety from the pain breakthroughts from getting the best of her.

My criteria for looking for a surgeon were the following- experience with all the surgical options (for there was a saying; if all you have is a hammer everything looks like a nail).  I was looking for someone who has done a large number of these surgeries and was involved in research and had a record of good outcomes.  I found a physician at the Mass General in Boston who met this criteria.  She would not be seen until she was seen by a neurologist and had an MRI and all the relevant information was sent over.  The high resolution MRI needed to be prescribed by a doctor so I called the neurosurgeon's office and asked them to call the MRI company out here to get her an appointment before we met with the neurosurgeon.  They were happy to help us out.

At this point let me say that it would probably be in the best interest of the UK patients to get together and try to advocate for a centralized a place to have this condition treated; even if you have to travel it is worth going to an experienced physician since this is a fairly rare condition, the more patients being seen and followed up a practice the better off things will be.  It is cost efficient too, better to have fewer beta/gamma knifes and high resolution MRI's in the hands of experienced surgeons and surgical teams who are familiar with the treatments and techniques.  

So we had the MRI done on a Monday and the appointment in Boston on the following Wednesday.  The surgeon, after taking a history with focus on the pain symptons, briefly explained the medical treatments involving drugs and then the surgical treatments available.  He recommended the microvasuclar decompression, putting a teflon pillow between the nerve and the blood vessel.  He was very specific about why he came to this reccomendation - my daughter had classic symptoms, a classic response to the medication and when we reviewed the MRI even we could see the distinct difference between the left and right trigeminal nerves- the compression was very clear.  What I am saying is each case is different depending on the symptoms and anatomy and for this reason, what works for one person may not work for another.  Because of her age I was nervous about needing the surgery done again after a few years as I had seen with the rhizotomy.  I could not find any information about it being done more than twice, and for someone in their 60's that might be o.k. but for someone in their 20's it was more concerning.  The surgeon said that the MVD had a better and more durable outcome and gave us a high probability that the surgery would be successful.  He also explained that sometimes with the surgery there is hearing loss and that they would use an ear bud and an electrode to moniter hearing during the surgery which has significantly reduced hearing loss as a side effect of surgery.  When asked if she was interested in having the surgery my daughter agreed it would be a good for her; she did not want to take medication her whole life.  He treats many patients, some who fly internationally for this surgery and it turns out there was no use in getting a second opinion as he's done around 1,000 MVDs and andother 1,000 rhyiotomies.  I didn't feel it would be easy for me to find anyone with as much experience.   He opened his schedule and said there was availablity on Saturday- that threw her off guard.  We tlod him we would be in contact with the office.  As we were leaving we met his nurse practitioner.  I asked how long she has been working with this doctor- 'eleven years' was the response.  This is usually a good sign.  My daughter needed some time to wrap her mind around the idea of surgery right away but as far as I was concerned if she wanted it why wait?  

Yes, she needed to have her head shaved a bit behind the ear and there is a scar.  It is invasive but do not fool yourself, radiation or rhizotomies may be less or non-invasive but that does not mean they are benign.  The staff at the Mass General is world class.  After surgery she was in a Neuro ICU because as a standard she needed to have neuro checks every 2 hours and be on moniters through the night.  She basicallly had her own nurse until morning.  She spent the following day in the hospital and was discharged on Monday and walked across the street with me to go out to lunch.  She was off heavy pain medication after a week and taking valium at bed time for another few days following to help with neck spasms. She drove with me 9 days later to NY to see a show (because when your daughter who is going into brain surgery says she'd like to see a show you do it if it's possible). Fifteen days after surgery she flew back to Wisconsin to begin work part time.  She started tapering off the medication 13 days after surgery and appears to be doing well.  We realize are truly fortunate to be well insured (we do pay a hefty monthy bill and have a high deductable) and have access to some of the world's best medical care.   All this may change under this administration as our surgeon's research funding comes from the NIH- (government funded) and with the current proposed cuts to both research and drastic reductions in health care spending things may get tight as hospitals vie for significantly fewer dollars.  We hope all of you struggling to figure this out are able to get the support that you need.   Check with the facial pain association and read their news letters.  There is a lot of helpful infomation out there.  You are in our prayers.   

Thank you so, so much for this!!! I realize the post was several years ago... Can you say how you are doing now and if the "tightness" in your jaw still occurs... or any other things to be aware of?

I am seriously considering having the cyberknife treatment and I'd love to know your insights as a champion of the situation..

Many, many thanks!

Maureen

Hi!

My dad have done all the three surgerys and no one of them helped.

The gamma knife, they entered behind the ear trying to look for something wrong, and the laser..

I don't know the exact names in English.

I just wonder if someone of you tried with cannabis?? To smoke or with oil and a few drops? Do you have any experience of having pain and trying with that??

It helps alot when people have MS and other kind of problems.

Please respond me if you know something!!

Thank you

And god bless you