I see so many posts on different types of really strong medicines people are taking. This may be a stupid question, but can someone tell me why we take so many mind numbing meds, when there is a decompression surgery that can cure it for good? I recently met someone who had this surgery. He was laid up for three weeks, is now pain free, and back to work in construction. The only reminder is the scar behind his ear. He is drug free. These surgeries are being performed more and more and the technology is so advanced and perfected. Why doesn’t a person just get diagnosed, operated on and cured? Am I missing something?
NHM~~~
I can only tell you of my experience and let you choose for yourself. I strongly suggest you really do your research on whatever way you choose to go. I know this is long but if you have any questions message me.
My experience:
I have had ATN and TN since 07/06/06 at 6 am. I was officially diagnosed on 07/18/06 and was in so much pain from this monster pain I was desperate for a cure, an answer, anything that would help. The neurologist I first when to tried me on all the usual meds and med after med I had allergic reactions to. I was getting depressed and thought that I would never have a pain free life again. I got online and found a local Neurosurgeon that does hundreds of this procedure called a MVD. I read the risks and knew that the procedure would keep me pain free for months to years. I signed up right away and my surgery was scheduled for 08/28/06, I figured like you did the same thing why aren’t people signing up for this potential cure? Well, my surgery was supposed to be 4 hours long and I was to stay a few hours in ICU and 3 days in recovery. My surgery was 5 hours and I almost lost my life on that table. I was told later that my main artery wrapped several times around that 5th cranial nerve. He had to “make” a tool to get back to the end of the artery. I lost a lot of blood and was in ICU 36 hours and stayed in the hospital 7 days. When I woke up from surgery I had a numbing feeling, but still felt the pain on my left side of my face, gums and lounge. It was weird like I went to the dentist and the Lidocaine was wearing off kind of feeling. The surgeon told me that it was normal to feel that but to give it two weeks before going away, after two months he said give it 6 months and I will tell you to this day I have that and know now what it is called Anesthesia Dolorosa.
After all that I still had to go through lots of different meds and ended up on taking: Nortriptyline, Dilantin and a small dose of OxyContin (10mg). I am still not pain free but I am at a level of pain I can deal with. I believe that if you can keep your mind busy then it will bet better in the long run. I find that at my work I am so busy in a day that I tend to not notice the pain until I get off work, am bored or trying to go to sleep. You definitely need good support and lots of optimism as this is a long road ahead.
I think people who research may not go the MVD route because of the risks of surgery, the recovery and the fact that the surgery is not a guarantee as the surgeons will tell you for ATN it is 50% and TN 85%. This is a brain surgery and that alone is scary. I could have died on that table leaving my husband and three kids ages 7 years, 4 years and 8 months. That scares me just thinking of how close it was.
If asked if I would do it again? I would have, knowing how much pain I was in. However, knowing the outcome of the surgery, I would not have. I hope that through my experience that I can help just one person and they can help someone else. Remember we are together and not alone.
Very sad to say that yes you are missing something here. My husband
did have the decompression surgery ~ MVD ~ microvascular
decompression surgery. It worked for him for less than a year and
then the pain came screaming back. Some say that perhaps he should
just do it again, but he also has some “souvenirs” from the
surgery… feels like bugs crawling on his face and also numbness not
to mention that the scar occasionally hurts like the dickens ~ likely
it is very mild anesthesia dolorosa (AD). Anytime AD is present
surgery is not recommended as the AD can be made worse and there is
very little that can be done for AD (even less than for TN). Too
many times I have heard first hand accounts of nightmare MVD’s where
the person comes out of surgery worse than when they went in. Plus
any time you go under sedation you are risking your life. Another
thing is that it is very expensive and not everyone has access to an
excellent surgeon let alone insurance that will cover the procedure.
My husband had one of the very best neurosurgeons do his MVD ~Dr. Kim
Burchiel ~ He is compassionate and very talented. When my husband
came out of surgery with good results, I too was wondering why
everyone didn’t have this miracle procedure done. Now, sadly, I
know. Each person needs to look at every option available to them
and make their own choice. All I beg is that each person know the
pros and cons of every choice and make an informed decision where
they know all the risks.
Many people don’t even know that they can loose their eyesight or
hearing with the surgery. Also, if the doctor does not see a
compression, they will often sever the nerve without prior discussing
this with the patient… which leads to AD (think phantom leg pain on
an amputee). Strangely, my husbands eyesight changed and he never
wore glasses again after his MVD surgery… so that was kind of a
good thing. However, he still says that he will NEVER do it again.
Hope that helps…
Denise
On Apr 28, 2008, at 6:48 PM, NHM wrote:
Well said Denise. I too have heard of some bad effects of this surgery. I would have to be at the end of my rope before I’d let anyone go near my brain. I have had two GammaKnifes and still suffer. One of the side effects were that I too had the “buggy” feeling in my left cheek as well as a numbness and still do five years later.
When I read the above post I started to get very mad! I’m glad that the
following posts summed up what was in my mind, in a much nicer way. Remember
it is “BRAIN” surgery! I would rather take more non invasive therapys ,
unless I had tried everything under the sun! If you were the one suffering ,
you would get it. It is so easy for people to give advice, but until it is
YOU who has to face the music, it is best not to judge what others are
doing! I wish your husband well. This condition is one of the worst things
that could happen to someone. It is a daily battle to survive the pain. I
have ATN. I am always in pain ( aching, burning,throbbing, tightness) in my
mouth. It feels like the worst tooth ache ever. I have had 4 teeth pulled
after numerous dental procedures. I know that I’m stuck with this pain for
life. I will do pretty much anything I can do for it. I have already tried
many therapies, but they didn’t touch the pain. I am still very far a way
from making the decision to try surgery. I know it really doesn’t help ATN .
I think that my Trigeminal nerve is damaged. Not much they can do for that.
I am going to NYC to Colombia Pain Center. I am going to try Low Level Laser
treatments. They have made some breakthroughs using Lasers for pain. It is
noninvasive, and there are no cons to it. I may also go on Methadone. I have
heard that it works very well for nerve pain. I’ll post my results, so
others can see if either of these treatments work. 
BEW
On Tue, Apr 29, 2008 at 10:15 AM, bez52 <
trigeminal-neuralgia-cpt8852@lists.careplace.com> wrote:
BEW, I do have TN. I am not looking at this from the outside. I, like everyone, am searching for answers. Never get mad at a post. WE are all in this together. Remember that writing can be read with the wrong tone. I was looking for answers, not questioning anyone else’s choices.
OregonDenise, Thanks! I think meeting this one person who went through the surgery so well, made me frustrated with the whole medication process. I have had TN for only two years now and so far have not taken any meds. But, the pain is bad enough that I have an appt with my Neuro to find out what to do next. I was wishing this surgery was the answer. MRI’s that I have had show nothing. Did your husband have an MRI before the surgery? Did the Surgeon see the nerve problem on the MRI? Yikes! I am so confused.
My apologies, I didn’t mean to hurt anyones feelings. I must have read your
post wrong. I hope you find some relief. I know it is rough. Bew
On Tue, Apr 29, 2008 at 12:33 PM, NHM <
trigeminal-neuralgia-cpt8852@lists.careplace.com> wrote:
Ah, just starting the journey? You must have many questions! I
highly recommend you get the book “Striking Back:The Trigeminal
Neuralgia and Face Pain Handbook” You can find it at the TNA
(trigeminal neuralgia association) website https://www.tna-
support.org/storefront/products.asp .
Also, I do recommend trying Frank Sherwoods low saturated fat diet
approach. I do think it helps!
If you see a neurologist, the first thing they will probably do is
put you on an anti seizure medication that works very well for TN
like Tegretol or its generic… which really should be treated like
two different medicines… many people will have success with one and
not the other. Some people (like my husband, Chris, are allergic to
these medications and break out in a rash. Anti depressants also
work well for nerve pain so don’t be offended if they offer you
one … they aren’t trying to say that you are mental ( that was my
first reaction).
As for MRI’s. Yes, Chris did have several done. The first is a
standard MRI where the doctors are looking for an elephant in the
closet… like do you have a cyst or tumor that is causing the pain.
MRI’s that detect compressions require a special sequence MRI called
"thin cut" that I believe Dr. Burchiel’s team at OHSU developed. Dr.
Burchiel did see Chris’s compression in the thin cut MRI and the
before surgery and after Chris was nothing short of miraculous.
However, Chris is LIVID that the neurologist he had before surgery
denied him any pain killers and told him (inaccurately!) that they
did not work on nerve pain. Chris feels that had he known that
medications like methadone work as well as they do that he would have
never had the MVD surgery.
You have many options available to you, each with good and bad
consequences… even the simplest like Tegretol has consequences
(very bad for your liver) and every surgery or procedure can and does
have both very horrible results and life changing wonderful results.
Some are better for young people and some are best reserved for older
people. TN and ATN varies from person to person and the best choice
for one person can be very different from the next.
Denise
On Apr 29, 2008, at 9:33 AM, NHM wrote:
My TN went from 0-100 in less than 2 years. Neurotin worked for awhile. Lyrica worked for awhile. Tegretol (yuck) worked longer but eventually I had to go on toxic doses to stop the pain…and then even that wouldn’t control the agony. I had gamma knife surgery performed on Feb. 27. Fingers crossed and knocking on everything wooden I can find, I’m feeling very optimistic about the outcome. I only have VERY MINOR numbness around my mouth and I only have about 2 more weeks to go before finishing titrating off all meds. This procedure is non-invasive and can be repeated. I know there isn’t a single answer for every person suffering from our wondrous condition, but I do recommend everyone consider this option.
I am a patient advocate with the Trigeminal Neuralgia Association. For 10
years I have researched a new diet therapy that stops TN pain by limiting
saturated fat. Not all fats. Just the excessive saturated fat in the American
diet. I made a presentation on the history and effectiveness of this diet at
TNA’s 2004 National Conference at the Disney World Resort. To try this diet, email your mailing address to frank@sokolitz.com or call 248-642-7235 for an eight-page report with diet instructions, the diet’s history, testimonials, and the amount of saturated fat in 140 foods.
If you have typical TN and are currently in pain, or would be in pain if you
stopped medication, I would like you to consider enrolling in a study I am conducting to establish the efficacy of this diet.
A patient’s success story: Mrs. Churukian is a Michigan patient
with a thirty-year history of TN. having taken Dilantin, Neurontin, Tegretol, Baclofen and two glycerol injections and three radiofrequency rhizotomies. All were temporarily successful. But ultimately the neurosurgeon at the University of Michigan said nothing more could be done to stop her pain. For health reasons MVD was not an option. She was now experiencing daily attacks of excruciating pain even while sleeping. The diet stopped her pain in less than a week and at 86 she has been pain free for 10 years. She no longer requires medication and there was also improvement
in blood pressure, cholesterol, weight loss and other health issues.
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