OMG...going through this site has been such an eye opener...I have ATN...have had it for 4 years due to a bad dentist injecting the trigeminal nerve area ...he did this three times...injecting 3 times per tooth he extraced.......Drugs controlled it perfectly...and luckily I have had no side effects whatsoever...and if I have..I havent noticed them...Then lat year in January I got Shingles...Or Herpes Zoster as its officially known...on my face....on both sides...One after the other...It didnt hurt because obviously I was already taking nerve damage pills.. However..since then I have had far more attacks than in the previous three years...I seriously never made the connection....didn't even give it a second thought....Now I am booked in for MVD surgery....and I am wondering if it is going to be worth it....If I do have Posherpetic Nuralgia, as well as ATN...seriously...is this operation going to be worth the hassle and problems associated with it...If the nerves are badly damaged anyway...by the dentist...and then by Herpes Zoster....The MRI scan does show the nerve entangled with 3 veins and a main artery leading into the brain stem....I am just so stupid not to have looked for a support group before last Thursday.....but I have just carrried on with my life regardless.....taken the meds...taken the pain meds as well...and thought nothing could be done...I havent even mentioned Herpes Zoster to my surgeon....I never made the connection.....Please could someone answer me before I go completely crazy...many thanks...
Well, first of all, breathe deep hun!
Remember that often times, people come to this site because nothing helps and they seriously need support. Red, our research analyst, has stated many times, that the reported rates of failure around here are HIGHER because we as a group need help and support.
That said, MVD is a majorly invasive procedure. My neurologist told me that with ATN, the surgery does not always work. However, you have 3 veins entangled. That is not the typical MVD scenario. Usually nothing shows on that MRI and everything is a mystery.
I have been adamant that if nothing shows on my upcoming MRI, that I would never have the surgery. I have even said that if something shows, I would not have the surgery.... but reading your story, if I had 3 veins, I think I would go for it! I would want the chance of living drug free and without pain again. I would do anything for that right now as I want my darn life back.
We don't know what the latest success rates are because the last time anyone did a study that I saw was 1998. But then, 98% saw either full or partial relief of symptoms. To me, that ain't bad.
Have you thoroughly talked to your doctor to see what his/her success rates are?
Dear Carol,
Since I'm not a doctor I can't advise you in any way. However, if a doctor in another country saw me for five minutes and scheduled me for an MVD, I would run, not walk, to the nearest exit. That's so unacceptable I hardly know where to begin! When I was given an MVD surgical evaluation by a very prominent neurosurgeon in my area, he refused to do an MVD on me ((( even though blood vessel compression WAS found on the Trigeminal Nerve))), because he said that after following his patients post-operative, that MVD on Atypicals can either not work, work for a short while or make the pain worse. Many neurosurgeons who are educated in the latest information on TN, refuse to do MVD or other procedures on Atypical patients. The success rate is much lower than for Type I patients and I personally believe it is even lower than reported due to many patients who never receive a follow-up from their neurosurgeon. I'm so greatful that I didn't fall into the hands of a doctor that may have pressured me into having an MVD. I'm perfectly happy now (after doing my research on this subject) to spend the rest of my life of medication.
You have every right to cancel the surgery!!! Many Atypicals are able to manage on medications. Sometimes the medication doseage needs to be adjusted and other medications added to provide relief. Many of our Atypical members here have written about having surgery, but now their pain has returned and in some cases, worse that it was before the surgery. There are many surgical complications that some patients aren't aware of or advised of, like cerebral spinal fluid leak, menengitis, brain infections, paralysis, etc. One of our own moderators here was Type I, in her early 20's and very healthy. In theory she was the perfect surgical candidate. In reality she has suffered almost all the complications I mentioned above, has been in and out of the hospital in intensive care since the MVD surgery last May and had to receive countless additional brain surgeries to try to fix the complications. As of last week she was scheduled for more surgery and even lost part of her skull to an infection. It's tragic. Her entire world and that of her family has been turned upside down. Her TN pain is gone, but at a very high price. Her entire future is unknown and her poor body has been put thru unimaginable suffering.
If I were you, I would find another doctor in France who is more knowledgeable of TN and especially Atypical TN and ask them to adjust your medications, and wait to see my doctor back home and discuss the situation with them.
Please talk to other Atypical members here and ask Red Lawhern for his opinion. Please don't allow a doctor to rush or presure you into having MVD. It's a very serious brain surgery. I believe that we all should receive the same kind of care and concern that any doctor would expect of another doctor that was treating their spouse or children. Nothing less!
Hugs.
Sorry Gloria...I have yet to find my way around this site....
I know....I agree...but when I saw my Dr this week he said that the Nurosurgeon was the best in SW France...not by any means in the country...but up there with the top 5....My Dr also said that he was not a gentleman..but a brilliant technical surgeon..who did not operate lightly...After the surgeon saw the MRI results...he just said surgery was the only option....Obviously he said this in French to my friend who is fluent and came with me...he did say it would take about the sharp bolts in the head, eye, nose and upper jaw...but I would be left with the dull thobbing pain in my upper jaw and teeth....Well I hate this...but can deal with it.....but but but but but....If its nerve damage from Shingles I had last year...and to be fair the pain has got worse..a lot worse and more frequent since shingles I just wonder..is it going to work...even with a brilliant technical surgeon...Mr Dr has told me that even tho he is rude and arrongant and wont be questioned....He is one of the best in his field of ATN TN and or anything to do with the brain.....Im not sure about the surgeons in Spain.....they can speak english....but its such a rigmorale to go through the health insurence depts.....everything there just takes so long to get complete.... and I want answers now.....not in 5 months time.....
Thank you for taking the time to reply to me...
hugs back
.
Hi Lisa....Yes it was quite evident on the MRI....but still....its a major step to take..I cant discuss it with the surgeon...he does not speak English...He is French...Obviously in such a major teaching hospital as Limoges especially in the Nuro part. The Neurologist who saw me in A&E a few weeks back was fluent english..and Im sure I can get hold of him when I go for this operation ( if I gather up the courage to do it)
I dont mind...but dont want to put my body through all this..and come out as bad as before if not worse....To be fair...I am panicking a bit about it all..and have started...as you suggested ..to take deep breaths....or a large brandy ...kidding.....
Hi Carol,
I'm so sorry you're having such a difficult time. I have both Type I and Type II on both sides of my face. Compression was found on an MRI. My doctor and I both did extensive research on the subject of MRI and I decided not to have the surgery - ever! I have three beautiful, very active children and a very supportive husband. The thought of having the surgery, the recovery time and especially possible complications is not something I ever want to deal with. I am able to manage my pain effectively on Neurontin/Gabapentin and pain medications.
I hope you will seriously consider calling off the surgery. It sounds like your inner voice has already told you it's not a good idea to be rushed into anything as important as this.
Carol,
I understand what you mean about the French neurosurgeon. My neurosurgeon was very abrupt and emotionally detached - but never rude or arrogant. It was understandable because I'd been warned before I saw him by another patient of his who is a neighbor of mine. She explained he's brilliant, but has absolutely no bedside manner, because he's focused on all aspects of the possible surgery and isn't there to hold anyone's hand and console them.
If you were in unmanageable pain and ready to throw yourself in the Seine, I could understand the possibility of scheduling the surgery right away, but as you said you're able to handle it on medications at this time. I would also be very concerned about having MVD in France, away from your support system - family and friends - and how it may affect them financially if they had to come and be near you during your recovery.
2 weeks ago I was ready to throw myself in the Seine...or any other french river come to that...It was the first time in 4 years I had not been able to control the pain...and 72 hrs later...no sleep....I finally gave up and went to A&E....They got the pain back under control in 36 hrs...but still a shock to have that kind of unimaginable pain for such a long time....To be fair they could have operated there and then at that point..I really wouldnt have cared less...BUT.....the pain is now back under control....I have upped the medication to 200mg Amiltriptaline and 1500mg of Gabapantin...and again..I dont seem to have any side affects whatsoever...well except for forgetting what I am going to say next...sometimes...not all the time...So I am thinking that maybe I should do much more research on this MVD op...and I am now like 70/30 against having it...When it was first mentioned to me about this op 2 years ago...I said absolutely not...never ..ever...but I really dont want to go through another 108 hrs of pain like I have just been through....and its ok...my family are over in France as well...so I have a lot of support here in France...I lived here for 9 years before heading to sunnier climes on the costa del sol...
Dear Carol,
When I read in your last post the medications you’re on, I wasn’t surprised your pain went on a 108 hour “bender” and made you want to toss yourself into the closest, deepest French river. So many of us are on much higher Gabapentin doses (myself 2,700 mgs) in addition to narcotic pain medications that prevent us from having protracted breakthrough pain and keep us out of the hospital. No wonder you were seriously considering having MVD!!! Breakthrough pain makes a lot of us desperate enough to agree to anything presented as an option. For many of us, narcotic pain medications are the only thing that gives us anything even resembling a quality of life.
Please talk to a doctor familiar with the condition and hopefully treating other TN/ATN patients. And understand that it’s a well know fact that chronic pain patients don’t get high buzzed from narcotics - just get pain relief.
Dear Gloria..thank you for replying..I was unaware that you could take so much Gabapantin...I have been taking it for about 18 months now...and only at 300 to 600 mg per day.....My Dr in Spain did say it was dangerous to actually take any more than 900mg...but when I rang him distraught 2 weeks ago from France he did then say double it to 1500mg....It didnt really do anything at that point ..I think because the pain had just got out of control.....Its calmed right down now....and only twinges in my upper Jaw.....so now I feel much more back in control...and the thought of MVD horrifies me....I think what I will do is cancel the surgery here in France...Go back to Spain earlier than I thought...and go and see a neurologist down there..and see what he says...I have my MRI scans...and if I need to take whatever medication I can to ease this dreadful complaint then I will gladly take it...Because I am like I never moan about this afflication...If I am in pain at any time ..I take myself off to bed and just take xanex to help me sleep....As I really do not visit the Dr much about this..I feel I need to find out more about pain medication..rather than invasive surgery.....If I can take a pill or 6 to ease this...then so be it...rather that than someone drilling into my skull....I so very much appreciate all you who have taken the time to help me with your replies...It has made me so much stronger these past few days.....I wish I had found this site when I was first diagnosed....Life would have been so much simplier than trying to cope alone....xx
The Drs in Limoges put me on Pregablin....but I had a nasty alergic reaction to it...my tongue swelled and I had trouble breathing....luckily I was in hospital at the time..and they administered anti histermine in my drip...You know....2012 hasnt been the best start for me...luckily I still retain a sense of humour xx
Carol: I am on 2700 mg of gabapentin and 600 of Trileptal. You can go up to 3600 mg of gabapentin safely. My doctor did say that when you go above 1800mg's you will see increased side effects. Maybe that was what your doctor meant? My neuro was quite clear that my body was going to be okay on the gabapentin even if I was on this medication for many years. I also am on oxycodone for break through pain.... if I did not have those narcotics during times of breakthrough pain, I would be insane.....
Lisa...I thought I was going insane.... How I have coped I ewill never know...but all is going to change...I am going to increase the Gabapentin now....I think anything you can try and do to save yourself an MVD has to be tried...I will also ask my Dr for some narcotic pain meds for this breakthough pain as well...I feel I have suffered in silence long enough...and now I know so much more about this ATN from this site..I will go armed with information to my Dr and demand better treatment....I have looked at this site solidly now since last Friday...and all of you on here have no idea how much you have helped me....I have been an irritant to the Drs...that is how I have felt...but no more....I will get this back to the point where I can carry on with my job and have a normal life....even if I have to take pills for the rest of it....I thank you all so very much....
Way to go Carol! One thing I have learned from this site that has been invaluable is that I, and I alone, am in charge of my health care. I can question the doctors because it is MY BODY and I PAY THEM. Period. I am so glad that I found this site before I ever went to the neorologist :) This has been a life saver for me.
OK Cleo..thanks for you input....I can assure you that bad dentistry is one of the causes of ATN or TN...and I am surprised you have not been diagnosed with either...If you have not been diagnosed with either condition ..do you find this site helpful for your nerve pain?? MVD can fix the problem of TN as the MRI scan shows quite clearly veins mixed with the nerve...and also the main artery...so thats why MVD was offered...I suspect if the MRI was clear then it wouldnt have been offered ....and I wouldnt even be contemplating it....as for ATN well....I guess that is never going to be fixed....and that will be something I have to live with and keep taking the medication for but that pain does not come close to the electric shock breakthrough pain I get.....PHN also cannot be fixed...and I beleive that this is what has triggered the more frequent attacks this past year....Iv had a second opinion on the MRI scan with a Dr who is fluent english...he also advises the MVD proceedure to disentagle the nerves from veins from arteries etc...I would just rather the person operating on my head was one who spoke English as well.....
Just found out by doing much more research that the titanium used in MVD proceedure has upto 4% Nickel in it...I am alergic to Nickel....and cannot wear cheap watches, earings or anything like that...even the stud on jeans will burn me...and make me come up in blisters. If I awoke from the MVD and had alergic reaction to the titanium plate...well its not worth thinking about....I do think if I had not have been so rushed with this surgeon...and understood exactly what he was going to do then these problems could have been discussed....I never even gave the nikel alergy a thought....It was only reading stuff relating to titanium that it came about...I wonder whatever we used to do without the internet to do our research....well I can guess...These operations...hips replacements...knee replacements were all done on people and if they had a alergic reaction to it..well it wast the hospitals fault...they just didnt tell the patient that they were using products containing titanium....I found out via the net on titanium that 40% of hip replacements have to be re-done because of alergic reaction...No wonder the NHS is in the state it is....There is not enough patient information given....and this makes for bad surgery...or anything else for that matter.....Do you know..I have found out more in just one week by looking on this site and other sites than any Dr be it English...French or Spanish has ever told me.....I find this really scary.....and I am getting angrier by each new peice of information I find out...what is it with these Drs that they can just be so totally arrogant and dismissive.....You know before I was diagnosed with this..I was told by a French GP that it was all in my head and that I had had a mental breakdown.... he put me on Valium....I never took it and headed down to Spain where it was diagnosed by an Australian Dr.....but for 6 months I was told to go away and take the valium.....Im niot a vindictive person...and wouldnt wish this on my worst enemy..BUT...I would not be too sad if the French GP I saw just got a twinge of ATN for a few weeks.....Im sure he wouldnt say he had a mental breakdown and describe Valium for himself.....Karma...I just keep thinking Karma ha!
Excellent research and investigative work, Carol! You discovered a very important aspect of the MVD surgery that needs to be documented here, with discovery credit given to you, to help others avoid the tragic consequences caused by nickel allergies. I’ll notify Red to contact you about an addition to our Facial Pain Info, if that’s acceptable to you. This is a groundbreaking discovery and you should be very proud of yourself! I know we are!
Based on your input, Carol, and that of another member, Tinkerbell, I have added a cautionary note to our Face Pain Info section indicating that candidates for MVD should communicate to their doctors concerning allergies to titanium, nickel, and heavy metals. I have also expanded this note for dental procedures in another section.
About Major Dental Procedures: Many members of Living with TN report that their pain emerged after major dental work, or surgery to correct TMJ Disorder or bite problems. Such trigeminal pain is probably best characterized as "iatrogenic trigeminal neuropathic pain" rather than "trigeminal neuralgia". Thus it is particularly important for patients to insist that dental specialists provide conclusive radiological imaging which confirms the presence of such mechanical disorders, before having surgery which may cause permanent damage while failing to address an underlying problem which is neurological in origin rather than mechanical or dental. Also of concern, some patients are allergic to metals commonly used in corrective or reconstructive surgery to the face -- particularly titanium or the nickel used in hardening titanium. If you know that you have allergies to metals, then tell your dentist in advance of any facial surgery to correct for bite or TMJ issues. [Discovery Credit: Carol Harmer and Tinkerbell, members of Living With TN]
Thank you Gloria, Jackie and Richard....I appreciate you all taking the time to answer this...You know I wonder how many MVD operations actually have gone wrong due to Titaniem/Nickel allergies...I have read on this site about people waking up and over time the pain has gotten worse...This allergy could well be the reason....I know how it affects me..just on my wrist and ears...can you possibly imagine have that in your head and not being able to get rid of it.....
I rang my Dr yesterday and explained the Nickel allergy and he told me to stop going on the internet and being a scare mongerer and to trust my surgeon .. who knows best...I have now cancelled my MVD.. !!!! I have made appointment with Neurologist in Spain who specialises in TN and ATN and will continue with drug therapy....I am just so sad that so many patients would have been hurt by Drs ignorance....when a little bit more digging into patients history would have exposed the allergies they have...I do know however that being admitted from A&E in severe breakthrough pain...I would not have made the connection between Titanium plate and Nickel....I really wouldn't have cared...I was in so much pain......This is why this site has been invaluable to me....It has stopped me making a life changing decision on having surgery..which would have failed...for all the wrong reasons.....I thank you all so much for this.....
Carol, being 1 month post op for MVD surgery, I can honestly say that to date I am so pleased with the results. I too found this support group almost too late. I also had to try not to let all the negative comments concerning this procedure change my opinion from having the surgery. I was determined to have it done and let God handle the rest. I have not had any pain since the surgery, I do have some twinges in my lower lip but my doctors said that would also be gone and just to give it time. I have only taken 1 carbotrol since i weened myself off it. The doctor sent me home with a whole bottle , just in case. I cannot tell you how happy i am. I had a root canal and the dentist hit a nerve in the back of my mouth and found out after the surgery that it was a main artery hitting the blood vessel that was causing all the pain. thus TN.....I would recommend this surgery to anyone who suffers with this type of condition. I was really scared and afterwards was in ICU for 2 days , but only stayed in the hospital for a total of 4 days. The pain from the scare is almost gone and to me the worst part of the operation was getting rid of all the nausea and dizziness that followed for about 3 weeks after....still feeling a little bit from both but i can tell it's getting better. I have had TN for over 2 years and i don't know why i waited so long. I feel like i have my life back and optimistic about the future with my hubby and all 9 of my grandchildren that i love so much. Hope my story helps you some. Yes quit reading all the negatives on some blogs..plus also remember people like me do care that people who have this condition really do get better and that we have to do this for ourselves. Would i do it again...in a heart beat..!!!!God is good and he used this great surgeon to help me get better...take care and God Bless.