Cutting the nerves to relieve pain

General General TN & GPN (Old Site)
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Hi....I have been asked to write this blog in the hope that I can help someone not to make the mistake I did....I had suffered with Type 1 and 2 TN for 5 years... I dealt with it quite well....taking the meds....which to be fair I didn't really have any adverse reactions to...ok...I forgot things...was a little slower...sleepier than usual....but a small price to pay for keeping this dreaded affliction at bay....I had bad days and good day..and could go 2 or 3 weeks without the mindbending pain....TN1 was always there...loitering in the background...but frankly...I got used to it....

It was the TN2 that was a killer...that paralysed me with pain....got me scrabbling around in the dark...searching for the pain relief intravenous drugs that I just put in water and drank....My partner became great at finding these meds and guiding me back to bed...After 10/15 minutes they kicked in and I would drift back to sleep...

No one...not even my closest friends knew I had this....I kept it hidden from everyone except my partner....and to be brutally honest I'm not sure he even understood....

I run my own business from home...supplying banks and institutions and hedge funds with buy and sell signals for 22 financial markets across the globe...and I also trade these markets as well...so I have a pretty stressful job with a 5am start....10pm finish.....5 days a week....but I got through and largely kept going....

I have a brilliant Dr in Spain where I live...and he helped me a great deal....

Last year I had Shingles on the face...Now this is normally a painful condition but I didn't feel a thing...but what I did notice was that since then the breakthrough pain was coming thicker and faster....Again...I dealt with it....what choice do you have....what doesn't kill you makes you stronger....This went on till the December and then the pain just came back with a vengeance and whatever meds I took....nothing worked...I was distraught.....As luck would have it...I do not work over the Christmas period...so I was not having to get up at 5am....now whether this was a good think or not..who knows...but this mindbending torture would not let up....and after 72 hours I phoned my friend and asked her to take me to the local hospital...I was back in France then to spend the winter....It took another 48 hrs before this pain eased.....and that was only after morphine was administered. This was Limoges University Teaching hospital...One of the best France has to offer.... The Neurologist there was fantastic...spoke perfect English and told me about this wonderful Neurosurgeon they had...who was world renowned....and how he had discovered a new way of operating to cure TN....Now I had just come out of the worst 120hrs I had known....and was grasping at straws....The pain was still there..but had been kept at bay by drugs drugs and more drugs..then morphine... who wouldn't be a little excited at the prospect of living pain and drug free... I'm guessing anyone who visits this site would yearn for a cure..It was like a answer to a prayer.....first I had to have MRI scan...which showed arteries and veins looped together....Aha....the reason for my 5 years of hell....Proff Jacky Videl.....a godlike being...Director of Surgery......head of Neurosurgery...how lucky was I to have stumbled across him in the bowels of deepest France....

Appointment made....I go home....anticipating with glee not having to be drug dependant for the rest of my life....

The day arrives....I see the godlike one....and he isn't really what I expected...but hey....I don't care...He is going to cure me and give me my life back...He looks at MRI....looks at me...looks at MRI...back at me.... I'm not feeling that great at that exact moment....he puffs out his chest...and starts talking in French... luckily I have the translator with me....It is ordained I should have MVD... absolutely no idea what that was but it was a cure for all...I asked him what was this other procedure was...the one he had perfected deep in the French countryside....He looked puzzled that anyone would even ask him...but you know the French....they can be snotty....So I left there ..none the wiser....and deciding I would be able to put up with it till I returned back home to Spain....I couldn't....the pain was back....so in desperation I agreed to the surgeon to operate on Feb 21st...sadly I had no idea what he was going to do...but hey...he was a top surgeon in a world class hospital...what did I know. !!!

If only I had had a crystal ball...If only.. if only.. but thats not the way it goes is it....

There was so many times I could have said no....even when I was admitted the night before...even the next morning.....even as I was wheeled into theatre...I don't know how many of you have looked inside a theatre...I never had...every operation Iv had Im out cold before being wheeled in...sadly not this time...I had my arms.secured in a leather strap..my legs pulled apart and secured by a leather strap...my head dropped onto a table and secured with leather strap...as they put this thing in my mouth and started to open my mouth I really believed that they were going to do whatever and not put me out....luckily I don't remember no more and woke up 3 hrs later in ICU....

I knew something was wrong almost immediately..I felt nothing from the top of my head to my chin....it was numb...and hurt like hell.....not the TN1 or 2 pain...but just hurt....

I was let out 2 days later...still dribbling and drooling and still in pain...After a week I had enough and my partner packed us all up and we headed home to Spain...I saw my Dr the following week...and he had booked his friend A Dr Benjamin Lopez who has specialised in TN for 2 decades....This lovely man explained to me that I was sadly in this 1% who get Anesthesia Dolorosa and that there is no cure...I was devastated...and more devastated when he again explained that this Prof Videl had cut the nerve and that it was something that only France did....The general concencous in the medical profession was that this was a dangerous thing to do and they did not cut nerves in Spain or UK....I couldn't believe this....what made it so much harder to bear is that I had misgivings...but was so desperate to pain free I had gone against my own gut feeling...and was now lumbered with this for life. To add to my despair....he said that the TN will come back within 6 to 8 months....

what do you say.....

If I had not been taking 150mg of Amiltryptaline....I would have been seriously depressed....I was down enough on the drugs..god knows if I hadnt been on them....so where are we now....Im on 20ml of Triliptal...250mgs Lyrica 150 Amiltriptaline.....18mgs Lexatin....and nothing is going to change ......

So for a few months I sat in...dribbled...drank through a straw... didn't go out... didn't want to see anyone....hated the world....then I thought...this is not going to beat me..... I'm not giving in....Now I dont know if any of you have heard of AD...well the only way I can describe it is this....you sit on your leg for 4 hours..then get up...the pins and needles are horrible for a few minutes the it goes away...well AD is like that....but 100 times worse....and it burns...and its like pins and needles...and it is constant...It doesn't go away..... Although the side of my face is numb it is not a nice numb...its is this god awful 24/7 pain.....Now I was new to this site when I got the terrible breakthrough pain.....and I ever knew anyone....and I felt so alone...and more importantly I beleived that the surgeon could make me better..he didnt .....hes made me worse....at least with ATN I had long periods of time when I felt normal...now I dont...It has changed me forever....I am not the same person...although on my """ good days"" I see flashes of the old me....I still work from 5am to 10pm...every day.....I am a strong willed cow....I shudder to think if this happened to anyone not as strong as me...and its nearly broke me....nearly but not quite...

If this story makes just one of you ...just one....to say to any surgeon who wants to cut your nerve....NO !!!.. then I am happy....

It is something that should never be done...I now know this...but for me it is too late...it isn't for you..I cannot stress enough.....Do not have this procedure....My surgeon down here says that it isnt 1% that goes wrong...it is more than 25% and that is too high in my mind....I would not wish this on my worst enemy.....

That is my story..and I really hope it gives someone the courage to say NO if this is offered....xxxx

1 Like
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Thanks for posting it on here Carol I am sure it will be of value to many xx

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Thank you so much for that. I was seriously concidering a nerve cutting procedure… so much so that I brought the idea up to my neuro surgeon, who quickly advised against it and explained to me all the down sides ( which there were many ) and gave me the option of gamma knife and assured me that there were still other options should gamma knife fail that were far less radical than cutting the nerve.

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I hope so Elstep....I really do....Id hate anyone to have to go through this......and ochie booboo..I am so glad you had a surgeon who knew what he was doing and advised against this barbaric procedure... Believe me..he knew what he was doing.....sadly I have most of the downsides to this surgery......and its for life....no cure...I could seriously throttle him...and then throttle me for being so stupid as to let a surgeon near me.....when we didnt speak the same language.....and I never knew what he was going to do....I mean that is seriously stupid on my part....oh well...its done now......no point whinging on about it.....I just hope many read my story and dont have this done TN and ATN is better than this...and I never thought I would ever say that.....take care xxxx

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Carol you were not stupid you were trusting. These people are educated surgeons so of course were going to trust that they know what they are doing. Do not blame yourself.

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Your story really gives me something to think about. I am in constant burning pain in my lower right side of my face, chin, mouth, tongue, gums and teeth due to having a tooth surgically removed. I was having thoughts of some type of hopeful surgery to make it better as I am not getting any relief from my meds. I am currently on 3600 mg of Gabapetin and lidoderm 5% patchs. I have asked my neuro for something to add to it to help but she says "there's nothing else". REALLY tired of hearing that. I am depressed and just want to scream at people... PLEASE LISTEN TO ME. I believe there is some type of med out there that would help me to manage my pain more. I am taking your story to heart. Thank you for posting and God bless you. I will keep you in my prayers. Bonnie

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One small correction, please: neurectomy involves cutting the nerve, but Rhizotomy and Balloon Compression merely introduce a controlled lesion or scar, leaving most of the nerve pathway in place and unblocked. Particularly with Type II (Atypical) TN, a large number of neurosurgeons have strong reservations about any of these "destructive" procedures, unless there is evidence in imagery of some discrete nerve compression by a vein or artery. Neurectomy is particularly problematic because it introduces a significant risk of deafferentiation pain -- which is even tougher to treat than the usual garden variety TN or trigeminal neuropathic pain.

Regards,

Red

Cleo said:

rhizotomy- balloon decompression- neurectomy are known as nerve cutting procedures.

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I am so, so sorry.
Thank you for sharing your story.


This has been explained as a "last resort" to me. I have had the MVD, and Gamma Knife, and both were complete failures.

So I know that I am in the "stubborn" category of people to treat.

My NS said that "severing" the nerve is an option.

But I am scared to death, and after reading your story, I know it's not an option.

So, thank you. I appreciate it.

I wish you healing, peace, and blessings.

Mary Ann

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Carol, do not blame yourself . Most of us trust the doctor and believe that he or she will do what is right . When we are helpless and desperate , we will grap anything offered to us. The pain is too much for us to bear and when it goes beyond certain threshold, we lose our mind. If I were you, I might do the same thing. Your posting here reminds us to stay clear from all these problematic surgery. I have to thank you for sharing your bad experience. I hope that this will not haunt you. You are always strong and resilience, keep it that way. I admire your courage.

Best regards.

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Bonnie, i don’t respond well to gabapentin. However , Lyrica and Clonazepam work well with me. What I am saying is that there are so many kind of medicines out there and if one kind doesn’t help, the others may help.



Bonnie said:

Your story really gives me something to think about. I am in constant burning pain in my lower right side of my face, chin, mouth, tongue, gums and teeth due to having a tooth surgically removed. I was having thoughts of some type of hopeful surgery to make it better as I am not getting any relief from my meds. I am currently on 3600 mg of Gabapetin and lidoderm 5% patchs. I have asked my neuro for something to add to it to help but she says “there’s nothing else”. REALLY tired of hearing that. I am depressed and just want to scream at people… PLEASE LISTEN TO ME. I believe there is some type of med out there that would help me to manage my pain more. I am taking your story to heart. Thank you for posting and God bless you. I will keep you in my prayers. Bonnie

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Thank you so much for posting the effects cutting the nerve can cause. I am also at that point and that was suggested. I have also read horrible side effects of this procedure. You put it so clear it was eye opening. I now know I will never have the nerve cut. My face is also numb from surgeries so I know what you are going through with numb pain.

You are amazing! I can't believe you are able to work. I know you have to put your mind in another place to be able to do things that are easy for normal people, but extremely hard for TN people. Bless you and wish you the best. Thank you so much for your post!!!!

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Thank you for posting this Carol. I too, at one point asked my neurosurgeon if he would cut the nerve. He said if that is what I wanted I would have to find another.. he would NOT do that. I am glad I had a good neurosurgeon. My pain is now controlled with meds... I am glad you posted this. Thank you. Min

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Wow....I didnt realise the response would be so positive....I am so glad none of you are now considering cutting any nerves....Just leave the nerves alone I say....God ....If I have helped one person not to have this procedure done...then thats more than I could have hoped for.....you are all such brave people......love Carol xxx

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I wish I had read these words of wisdom before I went in the hospital for the same brain surgery, unfortunately, the neurosurgeon cut the wrong nerve, so then one month he tried to cut the appropriate nerve, so cut all the nerves attached to the right trigeminal nerve. Now I have a totally numb right side of me face and the top of my head and major problems with my right eye. In addition, still have the suicidal pain of TN. Ugh wilball

Now trying to find out if the gamma knife is a reasonable option. Has anyone 'out there' had the gamma knife process done at Tufts in Boston? Please respond. I have had TN over 25 years and the intractible pain is present every day even with tons of pain medicine. HELP

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What are the other options should Gamma knife fail?

I am getting closer to the point of having to do something other than meds,

trying to get my ducks in a row so to speak.

xxOxx

ouchie-booboo said:

Thank you so much for that. I was seriously concidering a nerve cutting procedure... so much so that I brought the idea up to my neuro surgeon, who quickly advised against it and explained to me all the down sides ( which there were many ) and gave me the option of gamma knife and assured me that there were still other options should gamma knife fail that were far less radical than cutting the nerve.
16

My other thought on this subject is about which "branch" of the tri. nerve is affected.

My NS told me that people who have the top branch affected generally are less bothered by the numbness than people who have the bottom, maxillary branch affected. The maxillary branch numbness can lead to issues with chewing, swallowing, and even the tongue?
I don't know if that's necessarily true, but my NS is at the Mayo and does hundreds of procedures every year.

So I am very afraid to pursue those "destructive" procedures.
(I have had both MVD and Gamma Knife...neither worked for me.)

Loving the discussion, and hearing peoples' experiences.

Thanks!

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Please excuse me if this is a stupid question, but that is what these drugs do, make it hard to think rationally.

Did you have the tooth surgically removed and that is what started all this? "OR"

Did you already have TN and had the tooth surgically removed which caused you the constant burning?

Hang in there,

xxOxx

Bonnie said:

Your story really gives me something to think about. I am in constant burning pain in my lower right side of my face, chin, mouth, tongue, gums and teeth due to having a tooth surgically removed. I was having thoughts of some type of hopeful surgery to make it better as I am not getting any relief from my meds. I am currently on 3600 mg of Gabapetin and lidoderm 5% patchs. I have asked my neuro for something to add to it to help but she says "there's nothing else". REALLY tired of hearing that. I am depressed and just want to scream at people... PLEASE LISTEN TO ME. I believe there is some type of med out there that would help me to manage my pain more. I am taking your story to heart. Thank you for posting and God bless you. I will keep you in my prayers. Bonnie

18

Cleo, there are tens of thousands of people who have had successful rhizotomy procedures which reduce pain by disrupting the outer layer of the trigeminal nerve with a controlled lesion (they do not cut the nerve). So on this one I must suggest that your generalization is over-broad, and is NOT in the interests of many TN patients.

Regards, Red

Cleo said:

Any lesion on the nerve will result in the most wicked pain known. compression without actual destruction is most likely the better type to live with. the key to success is when the nerve is not scathed in the wreckage of the vein or whatever is in its path along the tn branch.

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Maddy...I had a tooth removed...6 years ago....and in a space of 8 months has a further 2 removed...by the same dentist....and when the last of my upper back teeth was removed and the pain was worse than before...I knew something was wrong...I thought I was going mad...but it was a year on before I was finally diagnosed with TN1 and 2....so I believe.....strongly....that it was having that first tooth removed that started this chain reaction...To make matters worse...I didnt even have a toothache....it was a routine 6 month checkup....

Bedrestmom.... I think I could actually cope with the numbness....when I have had a few hours (normally when Iv got thats it...have another pill) of pain free moments...the numbness is there...but you can cope with that....BUT..then the pain comes back quite quickly...and you are thrown once more into this 24/7 relentless pain...releived only by swallowing copious amounts of medication combined with Xanex to sleep....Tonight has been bad..4 hrs sleep...then it wakes you up..and thats with the amount of meds I take !!!!! I am lucky tho...I just come to my office and work....and thats how I cope with the pain...I work through it.....

Cleo....my NS down here who has spent many hour with me in tears since having my nerve cut....has said...categorically ..that any interference with the nerve..be it cutting it..compressing it...or whatever...can cause...not always....but too high a % for him ever to inflict that on another human being....such savage pain... permanently ...for life...for ever..till you die ...pain...that he would never contemplate doing these procedures....and after being a NS for 25 years.specialising in TN...I go along with him...Imagine...if you have TN1 and 2...can you honestly...in your heart...imagine a pain worse than that....well enter the nerve cutting surgeons....If someone had told me a year ago that there was a worse pain than what I already had...I would have laughed at them....well...this is worse....and for that reason...I would scream...rant and rave...at any one who was contemplating having this done...NO NO NO NO...dont do it....even if 1% of procedures ended up with chronic AD...its too many....and why would any reputable NS refuse to do it....because of the problems it can cause...which leave you worse off...Listen...we are all here on this site for one reason and one reason only...Its a support group for those with this disease....I found this site too late....a series of errors led me to where I am now...Its too late for me...but its not too late for any of you that were possibly thinking that cutting the nerve would solve your problem...It dosnt....and if any of my fellow TN sufferers can believe this.....it can actually make your prior TN pain pale into insignificance....and I for one wouldnt not wish that on my worst enemy.....

Thank you for all your well wishes..love and support....xxx

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Cleo -- how is either of the links you sent along pertinent to the benefits and risks of RF Rhizotomy? The first is a general treatise on how nerves degenerate and regenerate. The second is the first section in a multi-part tutorial on RF Rhizotomy that is sold for a license fee. If you have links to other sections of that tutorial, I'd like to read them.

Regards, Red