Does everyone benefit from surgery or gamma knife?

General General TN & GPN (Old Site)
21

Well, I have suffered with this for 11 years now and it does get you down. I have considered suicide and was seeing a psychologist. I live in the UK. which means life is a lot easier for health care and so I have had surgery. I had a decompression surgery, which had this been the problem, would have been a help. You probably know that tn. can often be caused by a vein damaging the insulation on the nerve. If this is the problem, which in my case it wasn't, they use Teflon, I believe, to repair the damage. Then a couple of years later, I had what I believe is called a tic injection. This can last from 3 months upward but is reckoned to last at least 3 years. At present I have a period that has recently started, (in my case it usually comes on about Christmas and goes on for 3 months! and I am back to relying on drugs again :-( HOWEVER. I saw a specialist in the middle of last year who has put me on Oxcarbazapine. I'd tried Tegretol and carbanazapine which seemed to be totally ineffective, (although how bad it would have been without it I never bothered to find out,) but now I am pretty well pain free. I cannot promise that it will be totally effective, it is only 2 weeks since this period started, but I can feel that sensation in my gums that tells you if you cough, yawn, talk or any of the other things, it will flare up and---so far--- No pain. I am taking 600mgs twice a day which I can double over time if the pain breaks through.

I don't know how it works in the USA and what imput you can have, but oxcarbazapine is not a new drug, so cost shouldn't be a problem

I wish you all the very best of luck. Roger

22

Hi Domelover,

just a couple of things to bear in mind. You don't say how long you have had TN or what type you have. I've been told by my neurologist that I can't have surgery because I have atypical TN, both sides of my face and in all three branches of the nerve. Apparently surgery won't work for me. Also, I understand that if you have had TN for more than 7 years, the chances of surgery being successful are much lower. I don't know how true this is, but worth researching.

Do you need your doctor to refer you to a neurologist, or can you just book to see one yourself? Because it's really important that you do see one, as a neuro will be better placed that a doctor to help you.

Also, can you get into a pain management clinic? And ask your doctor if he can change your meds. There's lots out there... gabapentin, baclofen etc.

Good luck, and I hope you get some relief as soon as.

23

Domelover, hi there. I want to share my experience with gk. In May of 2012 I opted to go with gamma knife. I had been on everything from tegrettol, elavil, gabapentin, you name it. The injections as mentioned were insanely painful to put on the dome. I made it thru, after all TN can be even more so right? I felt pretty good, eveen went camping memorial day weekend. After about 3 or 4 months my atypical neuralgia spread something fierce and I felt like I had fire ants crawling all over the right side of my face. I called the neurosurgeon and he was stymied as well because the gk works for a large percent of the population. After 6 months I had worn the skin off my face from rubbing it, was on 6 mg xanax (combats the tingles,) 1200 lyrica and had no eyelashes or an eyebrow and they decided to do an mvd (best decision ever). Short story long, the scar tissue had been building up and made a bad problem worse. The tissue was completely strangling the aleady narled nerve. It is NOT common that it happens but there is a risk. I didn’t have health insurance either and spent 5000 just for that procedure alone. The mvd was way more than that and we did

24

(Sorry on new phone) we ended up in a tight spot but I wanted to give you a heads up. This a great forum and wonderful for good and bad experiences. I wish you all the luck in the world, and peace from whatever you decide to do. Didn’t want to give a horror story but how there is a very slim chance something could go awry.

25

Ugh i can so relate to your pain and i prayed for you to find relief soon.

do you know if you have atypical or classic tn? periods of remission go along with classic and no breaks with atypcial. and mvd is not a normal choice for atypcial unless they can see something that is causing it on mri's or mra's. mvd is surgery to correct something that is wrong. so super important to know what type you have. i hit my 10th year this Jan of when pain hit.although looking back i have had bouts of this as early as five years of age. was treated for migraines but the medication never worked.

when i go back and read my journal i cannot believe how far i have come and the darkest days are behind me. Thank the Lord!..

some people say acupuncture really helps. chiropractic helped some but i felt it helped more after i got the facial pain under control. it helped my muscles etc get more relaxed after sitting and lying around all scrunched up in pain the first two years.

supplements are a must too. your body needs lots of support when dealing with this...more on that later.

botox! if i would of known about this earlier i would of tried it then. i have been on these injections for a year and it has calmed more of my pain. simple procedure by my pain dr. i have atypical its like the chornic day in and day out version. so i work on it day in and day out. but once i got some of the major treatments out of the way i am doing really well managing what comes a long compared to earlier days.

they shoot a strain of botox near the nerve. it has helped with these horrific spasms i

get under my right ear due to nerve damage from ramsey hunt syndrome i have two neuro conditions in my face opposite sides.

then he shoots my tn left side of face and it really knocks down the pain.

my eye is my worse pain on the tn side i wear sunglasses A LOT to keep from

squinting, and stay out of the cold etc are you only on tegretol. most need a "coctail" of medicine to get relief..i am on neurotin, a narcotic for pain and had motor cortex stimulator implanted seven yrs ago on right side of dura under skull for left sided atypcial tn. my blood pressure meds a beta blocker and some of my drs think this is also helpful.

so the mcs is a device that interrupts pain signal to the brain. it can me removed or i can stop using it and no damage done. this surgery saved me from what you are explaining. i also take vitamin d, b stress vitamins that help your immune system to try and avoid colds etc which as you know flares the pain up and slow mag for supplements. after lots of research i choose a treatment that didn't damage the nerve any further so i could try other things later if need be and they would still work. MY issue with gamma knife and similar treatments is once they blast that nerve you cannot go back and some people get the anesthesia dolorosa. but with that being said it helps some people and others have had to have it repeated....you are your own best advocate! dont' let anyone tell you you should feel better only you know when you feel better.

.have you read striking back? its a very helpful book about this condition. amazon.com or barnes and noble have it. this is not an easy thing to get under control and everyone has a different thing that helps. keep working on finding the right thing.

i would disagree with your family dr. i went to a large teaching hospital in chicago after seeing four different neurologists here. and none of them could agree! although my condition isnt a classic anything these four drs couldnt agree on meds or what i had etc. so frustrating! i go to northwestern memorial hospital in chicago. dr joshua rosenow is my dr there. he is a neuro surg.pain spec and studied under the pioneer of some of the top treatments for tn dr. brown. he is in new york area. i found the best treatments there. they offered treatments that no one else has even heard of in the city i live in. so a spec in a tricky illness is the best!

blessings for pain free days for you. keep us posted how you are doing there are so many kind and caring people here!

26

Hi Domelover,
As you can see from the varied replies it’s different for everyone…

In answer to your questions,
No, not everyone benefits, but many have…
No, surgery isn’t the only answer…
Unfortunately there is no “one” procedure that is guaranteed to work for everyone, not yet anyway…

My best advice to you, is to read and research all you can about trigeminal neuralgia and know all the options concerning treatments and procedures .
Find a supportive knowledgable doctor or neurologist who can help guide you in your treatment options.
Get a few opinions from qualified neurosurgeons who specialize in TN. They can best recommend what they think would help you based on your individual course with TN.
You definitely would benefit from having a neurologist, I disagree with your doctor.

Knowledge is power, and the more you know, the better you will be able to make decisions for your own care. Always trust your own instincts…
Lots of great info available here at LwTN along with personal stories.
Hope you start feeling better soon, (( hugs )) Mimi

27

Domelover, there is a wealth of information under our Face Pain Info tab on the site menu, and in its sub-tabs. The main tab ties you into a cluster of over 24 articles on various aspects of diagnosis and treatment for face pain, including a couple on surgery.

One specific FYI: the best choice surgery for type I TN pain is microvascular decompression, both in terms of initial success and persistence of positive effect. Type 2 TN outcomes aren't as good, but Dr Peter Janetta who popularized the procedure didn't hesitate to recommend it to anyone who had ever had the electric-shock stabs of pain that characterize Type 1 -- whether or not the more achy burning pain of Type 2 is also present or even dominates your pain pattern.

Likewise, be aware that the practice standards of the International Radio Surgery Association indicate that half of all Gamma Knife patients who have TN will have a recurrence of pain within three years. GK does have a role to play, but generally it is most appropriate for people whose health may not permit an MVD due to a history of stroke or high blood pressure. Some surgeons also suggest that GK may cause scarring that makes any second procedure more complex and less likely of a successful outcome.

I hope this is helpful in your concerns.

Regards and best

Red Lawhern, Ph.D.

Resident Research Analyst,LWTN

28

I think you are a candidate for MVD. I am not, as I am atypical, ATN type 2 constant 24/7. I saw a neurosurgeon recommended from this site where I live, Tampa, USF teaching hospital because my neuro thought I might benefit from RF. This neurosurgeon asked me point blank if my pain was stabbing or electric-like shock and I had to admit no, only a few times when I started to get ATN with atypical GN. In his opinion he told me he would not operate on me or do RF or any of the other treatments like gamma knife. He looked directly at me and said, "I don't want to make you worse." He will do true TN and he prefers MVD. This is what he does all the time.

Someone gave you a great doctor Ken Casey and I would search on this site for a neurosurgeon in your area. Oh how I wish a surgery would fix it for me. A few have commented on great lasting results and some have had the pain return. If you do find a good neurosurgeon make sure he or she explains the benefits and risks.

You can also do what many have said, adjust your meds, change or add a combination of meds. I do not tolerate tegretol and lyrica, nor would my neuro prescribe some of the others as I would most likely fail with adverse side effects. I am on a combination of gabapentin 600 mg. 3x, baclofen 10 mg. 4x and recently added amitrypiline 50 mg. at bedtime and my flare ups are better controlled, my atypical GN has backed off some.

I also bought a device Ben recommended to try acupressure, it stings a lot, may try to return it. Have not been using it because I am post-op tmj from '86 and I got some reaction with eye and temporal pain in spasms but not electric like. I am open to alternative treatments. One of them is PNS, peripheral nerve stimulation, and is being discussed on another page. I am researching this option. Many failed MVD sufferers are also seeking this treatment.

If a nerve is being compressed no matter where it is, the cranial nerves or the spine, you will get jolting electric like pain. As in the lumbar area I have had surgery to correct a deformity but also herniated multiple discs I got the electric like jolting spasms of pain in my back and down my legs. This neurosurgeon I saw agreed with me the same is true for true TN. I have a negative MRI but TN is in my experience a clinical dx, this neurosurgeon I saw does MVD based on a clinical dx of your symptoms. If MRI does show a compression then that is helpful for the surgeon but if not, they sometimes find it when they go in.

I hope you find a good neuro and get referred to a great neurosurgeon but in the meantime find a pain management doctor to help you if you need a narcotic. I am on a low dose of percocet. Some pain management doctors do this PNS but also neurosurgeons. I read all your responses from all of us in this support group. I come to this site and read and read the stories of all of us that suffer from face pain and find so much helpful information. I wish you a brighter future and better days ahead without this pain. Sharon

29

Thank you all for your input. I saw another neurologist/neurosurgeon yesterday. I'll be going in for a more specific MRI on Monday, with an appt with the doctor following. Hopefully I'll find out some things that my other neurologist failed to tell me, because the Tegretol was working then. I just hope that I'm making the right choice, by having this particular surgeon do it. I don't want to end up with more probelms than I started with. There are so many stories on this site.

30

Just go with your own instinct and faith in your doctor.If you don't have that.Find one you can put some trust in.There are the worst stories here,it's true.But there are way more successes.Most of which we hear nothing about.Good luck and let us know!

31

Dome, when I had my GK 14 yrs ago I did just as Don 58 said. I trusted the surgeon. I was pretty dumb about the matter, but he was confident. Getting ready to do the GK is not fun. Good news it does not last long. The GK itself is a breeze. Years later I after I knew more I asked my neuro if there was compression shown on the MRI, to which he said No. The surgeon told me about the MVD but he said sometimes they go in and find compression that didn't show up and sometimes ...he shook his "just nothing". So, in my case he preferred the GK. Works on some, not on others. It worked for me quite well. For 9 yrs anyway. Then it returned big time. To this day I've not been given a reason for it. So, after it returned they gave me the new Cyberknife. It stopped some of it, then left me with numbness, and still some pain and in addition neuropathy (nerve damage). So, I'm now on Trileptal 600mg, Lyrica for neuropathy 225mg and Amitriptylene 25mg. Even so......I am so much better off, with the meds, than I was the day it returned. I do have a good life now. Not everyone can say that. I have changed neuros and I asked her about whats causing this if there is nothing on MRI. She honestly said "we don't know". She was honest with me. I appreciated that. Neuros are not the same. My first neuro told me once when we were talking about MVD that since it too often does not work it will leave you worse than before. I know people personally that have had a super good result with MVD, and one who had horrible results. Go figure. Don's right in my opinion. Go with a surgeon you trust. Take your time. Look around.

32

My husband had the MVD surgery December of 2008 and the Rizotomy June of 2009. He had his third surgery, the balloon therapy October of 2011 and has been pain free since. He also suffers from MS as well, so our main concern is the MS at this time.

I am his primary care-giver and check this site on occasion and I'm surprised I haven't read anyone having this surgery. Or, I totally missed it. He got his last surgery at the Cleveland Clinic in Ohio, and although we have insurance, they did not cover it all but they were totally willing to work with us on payments.

We currently live in Alabama. I don't know if there are any support groups here but if anyone knows of any and need someone to talk to, we are willing. It is an ugly beast that affects the whole family and I know people need support.

Sincerely,

Charles and Angie Benson

33

Charles, I also live in Alabama, 25 miles north of Birmingham. I had the GK and the CK done. Is this the rhizotomy you had? I'm curious about the balloon therapy. Did that leave more numbness than the MVD and rhizotomy?



ClBenson said:

My husband had the MVD surgery December of 2008 and the Rizotomy June of 2009. He had his third surgery, the balloon therapy October of 2011 and has been pain free since. He also suffers from MS as well, so our main concern is the MS at this time.

I am his primary care-giver and check this site on occasion and I'm surprised I haven't read anyone having this surgery. Or, I totally missed it. He got his last surgery at the Cleveland Clinic in Ohio, and although we have insurance, they did not cover it all but they were totally willing to work with us on payments.

We currently live in Alabama. I don't know if there are any support groups here but if anyone knows of any and need someone to talk to, we are willing. It is an ugly beast that affects the whole family and I know people need support.

Sincerely,

Charles and Angie Benson

34

In TN, the term "balloon" normally only comes up as a "balloon rhizotomy". Such a procedure introduces a lesion on the trigeminal nerve by compressing it with an inflatable balloon inserted into the area of the nerve by a hollow needle (Canula) through the cheek and skull cavities. From the stats I've seen, balloon rhizotomy isn't as consistently successful and doesn't last as long as either RF Rhizotomy or MVD.

Also be aware that in the practice manual of the International Association for Radio Surgery, Gamma Knife is noted to have a 50% re-occurrence rate for facial pain within the first three years. Cyber Knife isn't documented as well, but is known to deliver about twice the radiation levels to regions of the brain stem within a few millimeters of the target site.

Regards and best,

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Regards and best.

35

Good information Red. Its sobering to know that statistics seem to indicate TN pain will come back at some point -- but there is no guarantee that it will or won't. That's sobering. But, I am thankful to God for any relief and for every day we can cope with this thing.

A guy I talked to once said he had a similar procedure (through the cheek, but with an electric wire to heat up the nerve -- I think). His description of the horror he went through is something I'll never forget. The man is a mild-mannered Christian, but he said if they had not had him strapped down he would have gotten up and choked that dr. till he was dead. I think that was something quite different from the balloon procedure in subject here. I don't know what it was called.

I was one of the fortunate ones who got 10 yrs relief with GK, with no side affects, numbness, etc. Pain did come back with a vengeance after 10 yrs. I'm on my 4th year after CK, and maintain a normal life with trileptal, Lyrica, and Elevil. I'm thankful for being able to maintain a normal life even though I take these drugs daily and deal with the resulting neuropathy and occasional mild pain..



Richard A. "Red" Lawhern said:

In TN, the term "balloon" normally only comes up as a "balloon rhizotomy". Such a procedure introduces a lesion on the trigeminal nerve by compressing it with an inflatable balloon inserted into the area of the nerve by a hollow needle (Canula) through the cheek and skull cavities. From the stats I've seen, balloon rhizotomy isn't as consistently successful and doesn't last as long as either RF Rhizotomy or MVD.

Also be aware that in the practice manual of the International Association for Radio Surgery, Gamma Knife is noted to have a 50% re-occurrence rate for facial pain within the first three years. Cyber Knife isn't documented as well, but is known to deliver about twice the radiation levels to regions of the brain stem within a few millimeters of the target site.

Regards and best,

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Regards and best.

36

The procedure with the electric wire was almost certainly Radio Frequency Rhizotomy, sometimes called RF Ablation. Your friend's experience during surgery was highly uncommon. Like other peripheral destructive procedures, however, RF does have a record of side effects in a minority of people which include extensive and persistent numbness of the face, and in a few cases, a form of deafferentiation pain called Anesthesia Delourosa. AD is characterized by a strange combination of underlying burning and throbbing pain, with surface insensitivity or numbness to tactile sensation and touch. The Stats I've seen indicate fewer than 5% of RF patients experience AD. But for those few, the experience can be pretty horrifying.

Regards and best,

Red

37

You know Red, one thing I don't understand is why some NS lean to the GK or CK as their preferred method and others lean to MVD as their preferred treatment. I can't quite get a handle on why the different opinions among professionals. I wonder if its an actual difference of opinion, or is it because of a difference between patients.

Richard A. "Red" Lawhern said:

The procedure with the electric wire was almost certainly Radio Frequency Rhizotomy, sometimes called RF Ablation. Your friend's experience during surgery was highly uncommon. Like other peripheral destructive procedures, however, RF does have a record of side effects in a minority of people which include extensive and persistent numbness of the face, and in a few cases, a form of deafferentiation pain called Anesthesia Delourosa. AD is characterized by a strange combination of underlying burning and throbbing pain, with surface insensitivity or numbness to tactile sensation and touch. The Stats I've seen indicate fewer than 5% of RF patients experience AD. But for those few, the experience can be pretty horrifying.

Regards and best,

Red

38

There are some differences between patients, Jimmy. Not all are candidates for MVD because of a medical history of stroke, aneurism, high blood pressure, cardiac issues or previous operations for brain tumor. However, when a surgeon "leans toward" GK or CK, my own intuition is that his or her preference might have more to do with the multi-million dollar cost of a radio surgery center that their hospital has built and needs to recover in patient fees, than it does with the long-term welfare of the patient.

Gamma Knife does have legitimate purposes, particularly with otherwise inoperable AVM or tumor patients. But for TN, I've had at least two MVD surgeons tell me that they personally considered Gamma Knife to be a "barbaric" procedure that is badly mis-advertised as "non-invasive". Although no opening is made in the skull bone for Gamma Knife, a region of the brain is still exposed to a blast of 60 Grays of radiation or more. In some cases, re-operation by more invasive means will find that the target zone of such an exposure will display significant scarring and adhesions of nerves to surrounding tissue.

This is not to defame the good will or good intentions of neurosurgeons as a specialty. But it should be noted that all neurosurgical procedures for TN have tradeoffs between risk and outcome success. And from what I've read online and over the years, I would have to agree that practitioners of Gamma Knife too frequently fail to volunteer the pain recurrence and side effects statistics of their own professional association, to prospective patients.

Go in Peace and Power

Red

39

Well, my friends. With all of your help and experiences - I decided to schedule my MVD. March 4th. I want something that hopefully will be long term. I'm scared to death, but I cannot continue suffering and drugged up when I don't need to be. My surgeon is very confident in himself and his work which helped me with my decision. Please keep the discussion going, there are new, unfortunate people coming on board every day that need our help.

40

PLS - What type of surgery did you have?

PLS said:

I can't speak of everyone but I had surgery 11 years ago this May and I've had no relapses. I thought I was having one a few weeks ago but was just being paranoid. There are all kinds of side affects from the surgery but every single one of them was worth. Even when I get a really bad migraine (one rare side affect of the surgery I got), it isn't a drop in the bucket to how much pain I was in before the surgery. I hope you get relief soon!