Thank you Carol for posting this Horroble experience. I have been reaserching everything that can be done to calm this nerve even if it's temporary, and I read about all the bad side effects. To bad you didn't get to research it and that the Surgeon didn't give you more information. You must be a really Strong woman, because I tell you the truth, I used to think I could handle pain, until this MONSTER moved into my life, I've notice that I'm pretty weak. My heart goes out to you and Iwill also keep you in my prayers. God bless you
My story is different in that the Gama caused my Anesthesia Dolorosa. I was told this procedure would work. But didn't. Went totally wrong, damaged the nerve worse and now there is no cure for me either.
I would never let them cut the nerve. My doc took great care of me and only did what he thought would help. MVD and Gama. Neither worked.
I have Type I and II... AT TN... my pain is the whole right side of my face. All three stems of the TN are damaged, so I feel everything thats associated with this dreaded disease from the top of my forehead to my chin, from my nose to my ear. None stop pain.
Surgery is never to be done on me again. I won't even consider one. After the GAMA and having a freaking Hallow screwed in my head for eight hours, nope not me. I will live with this the best I can, take my meds, and go on.
I tried many meds and found the only one that even helped a little is Lyrica. That with Loratab control my pain somewhat.
So anyone that is thinking surgery, please read up on it. Please ask questions in here or others before doing it. I don't blame my NS for this mistake I blame the skilled Doc who actually did the GAMA on me. She messed up. But really doesn't matter anymore because now I'm stuck with this and there is no fixing me now.
JerriM
I am so very sorry JerriM- I too had MVD that didn't work. The Neurosurgeon said he cut the nerve just a little bit when he saw that the nerve wasn't pounding on that blood vessel as he expected to see. He also went ahead and put the teflon pad in there.
I have not had the Gamma knife and my kids and my GP seem to think that, "If your pain is bad enough you will try anything."
They don't seem to understand, I don't want to buy more pain and problems.
My drugs are not working like they once did long ago. There are other drugs to take but many of them are not generic so Med D doesn't cover them. I am taking three different drugs now, they are generic, plus a mild anti-depressant. That is why I was considering Gamma-Knife, Cyber Knife or one of the other procedures out there, but with the failed MVD I kmow my chances are slim, Neuro-Surgeon told me that. Why should I take the chance of the Anesthesia Dolorosa or other painful conditions and still have the TN?
When I read your post I almost cried for you, my heart goes out to you, I am so sorry.
Doesn't seem fair does it?
xxOxx
Thank you for sharing your story. You are a very strong person and I admire you for it.
Maddy, have you tried Lyrica yet? Their company Pfizer has programs that will give you your meds free. MED denied Lyrica, but I've been blessed that Pfizer Corp. has approve my application for the past three years. Lyrica cost over $290 a month, so without the help of Pfizer I would never be able to afford it.
I'm sorry my story scared you, but I had to be honest when it came to the Gama Knife...my face was swollen for a week after they unscrewed that Hallow from my head, and I had migraines. Guess that was one of the side affects of having is screwed to my head for 8 hrs....It didn't work for me, but it may have worked for many others. I guess thats a question you should ask in here. I believe it depends on the Doc doing the procedure, and the one that did mine was suppose to be one of the best.
I understand you being worried about doing it now, TN is bad enough but to get it to the point of AD... not worth it.
This is my burden in life, one I've adjusted to or I keep trying to because each day is different. The pain never ends just changes from day to day and moves to diff areas of my face.
Dixie, I don't know how strong I am, I've had this so long now over 11yrs that it's just a part of my life.
Maddy, if you haven't tried Lyrica,,, ask your Doc about it and then check with Pfizer online and look at the many programs they have. .....
I'm sooo sorry Jerri.. I did have the Gamma knife, worked for three years, but the pain is back now. Plus I had dental work done in January and now I am bilateral. I have a ring of blood vessels around my trigeminal nerve now that I am sure is caused by the procedure. The docs didn't tell me it was... I just assume it is, because it wasn't there before it!! I really don't know if it was worth it. It is a risk, I was desparate at the time, I was working full time and I wanted out of the pain. I am not doing anymore procedures. For me it will be meds, from now on. Knowing what I know now... I don't think I would have done the procedure. I feel real lucky it turned out as well as it did for me....
I will do that, thank you for the info on the Lyrica Jerri. Both my Neurologist and General Practitoner have
mentioned it but I keep saying no, not till I absolutely have to due to the cost and I think that time is very close.
Jerri, you didn't scare me, you just made me so sad for you, however, your post is important,
anyone considering any of these procedures need to know the good and the bad and ugly.
I supposedly had one of the best surgeons for my MVD and he may well be. After the failure of the MVD he said chances of any other procedure working was slim, but then you have all these people around you, Doctors, family and friends saying that if it is that bad they would try anything, or, they say so-&-so had this or that done and it turned out okay.
Sometimes I find out later that it was for a different disease or problem, you know stories get changed as they transfer from one person to another.
I tell them I tried the best procedure with the best chance of working I lucked out not to have real bad effects, my balance is off, especially when I am tired and my head hurts once in a while where I had the surgery but other than that I feel extremely fortunate. I probably would not have had it done if I had found this site before hand.
I really can't figure out why I didn't find this site, my son was also searching for info at the time, guess we just didn't do something right . You are an inspiration, just want you to know there are people that really care.
xxOxx
jerrim said:
Maddy, have you tried Lyrica yet? Their company Pfizer has programs that will give you your meds free. MED denied Lyrica, but I've been blessed that Pfizer Corp. has approve my application for the past three years. Lyrica cost over $290 a month, so without the help of Pfizer I would never be able to afford it.
I'm sorry my story scared you, but I had to be honest when it came to the Gama Knife...my face was swollen for a week after they unscrewed that Hallow from my head, and I had migraines. Guess that was one of the side affects of having is screwed to my head for 8 hrs....It didn't work for me, but it may have worked for many others. I guess thats a question you should ask in here. I believe it depends on the Doc doing the procedure, and the one that did mine was suppose to be one of the best.
I understand you being worried about doing it now, TN is bad enough but to get it to the point of AD... not worth it.
This is my burden in life, one I've adjusted to or I keep trying to because each day is different. The pain never ends just changes from day to day and moves to diff areas of my face.
Dixie, I don't know how strong I am, I've had this so long now over 11yrs that it's just a part of my life.
Maddy, if you haven't tried Lyrica,,, ask your Doc about it and then check with Pfizer online and look at the many programs they have. .....
Am I right in thinking that there is a risk of AD in any of the surgical procedures or TN. Is any more of a risk of AD then others? For everyone who suffers from AD my heart goes out to you and how brave you all are, Carol, Jerri and others. Is there any hope that there will be a treatment for AD in the future? God Bless xxx
I think there is a risk with surgical procedures, just possibly more when dealing with TN. Since the procedure is directly dealing with that nerve.
I understand the 24/7 pain... I have it. There are days like today when at this very moment I would rate my pain at a 4... which is probably the lowest I've ever rated it. Today is a good day... the Lyrica and Loratab is working, but it also has to do with the fact that I haven't eaten anything. Chewing as we all know makes things worse. Sometimes drinking does too. But we have to do these things to survive.
When this first hit me.. I went on a yogurt and oatmeal diet you could say. Only things I could eat that didn't cause me pain. Hell of a way to loose weight huh....
I'm glad I found this site... I try to talk to people but it's really hard for anyone to understand what this disease is unless they are going thru it also. So having people to talk to who understand without me having to explain over and over is nice.
If I may, I would like to add a balancing note. No surgery is absolutely risk free, including tonsilectomy. But let's not go overboard on emphasizing the negatives, please. The following is only one of several abstracts that I've reviewed at Pub Med, detailing 20 years of experience at one hospital in China, with one of the peripheral surgical procedures, "RF-Ablation" (aka "RF Rhizotomy"). Some other reports are not as optimistic. But the chances of a highly negative outcome with this variety of surgery are still overall low.
Long-term outcomes of percutaneous retrogasserian glycerol rhizotomy in 3370 patients with trigeminal neuralgia.
Xu-Hui W, Chun Z, Guang-Jian S, Min-Hui X, Guang-Xin C, Yong-Wen Z, Lun-Shan X.
Source
Research Institute of Surgery & Daping Hospital, Third Military Medical University, Department of Neurosurgery, Chongqing, China. ■■■■■■■■■■■■■■■■■■
Abstract
AIM:
To assess the long-term outcomes of percutaneous retrogasserian glycerol rhizotomy (PRGR) in patients with medically unresponsive idiopathic trigeminal neuralgia.
MATERIAL and METHODS:
A total of 3370 patients undergoing PRGR between 1983 and 2003 in our hospital were followed up for 13.1 years (range 3-23 years), and the outcomes were investigated.
RESULTS:
Of the 3370 patients, 99.58% had complete initial pain relief. A total of 2750 patients were followed up when 112 died of unrelated causes and 508 were lost to follow up. Of the 2750 patients, 962 (35%) had pain recurrence at various intervals: 0.3% in 1 year; 21% in 1 to 5 years; 7% in 5 to 10 years; 4% in 10 to 15 years and 3% in 15 to 23 years. The major complication was facial numbness, among which hypesthesia outweighed hypalgesia. Most patients recovered within half a year, although 109 patients (3.96%) developed permanent mild hypesthesia. There was no anesthesia dolorosa or surgery related mortality in this series.
CONCLUSION:
PRGR is a minimally invasive and simple procedure yielding a favorable outcome for trigeminal neuralgia. The major complications of this procedure are reversible within various time intervals. It may serve as a first-line surgical modality for patients unresponsive to pharmacotherapy.
I really don't think I went overboard... I told my story, and also wrote that before having any surgery do the research, ask the questions... mine happen due to a mistake of a Doc who was suppose to know exactly what she was doing... I would pray that not all Doc's make mistakes but some do... To hear that there are good results of this disease is wonderful... in my case the results weren't good... and in the case of Carol the results weren't good.. that doesn't mean all results end bad... My prayer is that one day they find a cure for AD, a cure for TN and that none of us have to suffer anymore with this horrible pain, a pain that only gets worse with each passing day.
I've lived with this for 11yrs now... and believe me I have the right to be mad, hurt and upset that a mistake made my problem 100% worse...I cry alot, which hurts my face when I can finally feel the tear on my cheek... I stop my grandchildren from touching my face which they don't understand because their babies... The drepression comes from so many things, but mostly from the fact that I don't have a normal life anymore, I can't do the things I use to because of this pain that controls all my activities.. this pain that wakes me up, keeps me awake at night and reminds every minute of the day that I won't get better ... Maybe that will help you understand my negative with surgeries... I'm not telling others not to try, I'm telling them what I went thru and to do research before they make a final decision on having a surgery that could possibly end the way mine did.
Carol I really Feel for you.
Makes the Primitive male in me want to go and give the french Doc a good seeing to for not giving you a proper explanation or a risk overview in ways you could understand. Not acceptable. Anywhere for any reason
TN is bad but to have constant pain.
On another note the Friday before last I had a Radio Frequency Nurotomy of the Facet joint nerve L5 S1 x6
I was told of the risk of AD and was told if this happend it could be treated with drugs.
I suppose the difference here is that the TN nerve is a very complex nerve with both sensory and motor functions where the facet nerve (at the point wher they blast it) does Bugger all)
Carol I hope you can find some relief some how some where
Jerrim...you didnt go overboard...not for one second...After talking to my NS down here in Spain...and him explaining in great detail why you never NEVER.... EVER cut the nerve and that most of Europe ..with the exception of France...do not do this procedure because of the high risk of AD... Id never even heard of AD till I got back to Spain.....the hopelessness of finding out that this was for life knocked me for six...I too can never have surgery again...I too am numb and in 24/7 pain from the top of my head to my upper jaw..I too have grandchildren who cant touch my face...I too live on drugs to at least help in someway to dull the constant pain...and I too beleive that anyone contemplating surgery has to know the facts ...the TRUE fact...not out of some journal...what are the experts going to say eh when they write their medical papers...This procedure you pay for wont actually cure you...oh and by the way most cases have AD after it...of course they are not...No one in their true mind would ever have surgery would they....In no way is this like have your tonsils out....I have had a lot of operations from ....breaking my back when I was 11 to this one...Of couse you dont expect t be worse than before do you...If I hadnt been out of my mind with ATN pain...I would never had the operation....especially as I didnt know what he was saying...It relatyed to my via the translater he was going to try and ease the pressure on the erve ...not cut the dam thing...I would have out that hospital in a nanno second....Of course we have the right to be angry qand frustrated...This AD is forever...and to me thats just not right.....ATN didnt break me....AD very nearly has....not quite...but oh sooo close...and I really believe that you have to have it to understand the pain we go through 24/7...and If I can stop just one person from making the same mistake I did....well it wasnt in vain then was it ....xxxxx
jerrim said:
I really don't think I went overboard... I told my story, and also wrote that before having any surgery do the research, ask the questions... mine happen due to a mistake of a Doc who was suppose to know exactly what she was doing... I would pray that not all Doc's make mistakes but some do... To hear that there are good results of this disease is wonderful... in my case the results weren't good... and in the case of Carol the results weren't good.. that doesn't mean all results end bad... My prayer is that one day they find a cure for AD, a cure for TN and that none of us have to suffer anymore with this horrible pain, a pain that only gets worse with each passing day.
I've lived with this for 11yrs now... and believe me I have the right to be mad, hurt and upset that a mistake made my problem 100% worse...I cry alot, which hurts my face when I can finally feel the tear on my cheek... I stop my grandchildren from touching my face which they don't understand because their babies... The drepression comes from so many things, but mostly from the fact that I don't have a normal life anymore, I can't do the things I use to because of this pain that controls all my activities.. this pain that wakes me up, keeps me awake at night and reminds every minute of the day that I won't get better ... Maybe that will help you understand my negative with surgeries... I'm not telling others not to try, I'm telling them what I went thru and to do research before they make a final decision on having a surgery that could possibly end the way mine did.
Beleive me Simon...I felt the same...I was sooooo angry at first...then depressed......now I just accept it...because there is nothing more I can do....So I take all the drugs...and hope one day...there will be a cure for TN ATN and AD xxxx
SimonL said:
Carol I really Feel for you.
Makes the Primitive male in me want to go and give the french Doc a good seeing to for not giving you a proper explanation or a risk overview in ways you could understand. Not acceptable. Anywhere for any reason
TN is bad but to have constant pain.
On another note the Friday before last I had a Radio Frequency Nurotomy of the Facet joint nerve L5 S1 x6
I was told of the risk of AD and was told if this happend it could be treated with drugs.
I suppose the difference here is that the TN nerve is a very complex nerve with both sensory and motor functions where the facet nerve (at the point wher they blast it) does Bugger all)
Carol I hope you can find some relief some how some where
Sadly yes there is...no matter what you read...who tells you what....etc etc etc....The risk of AD is so high as Iv said before Europ with the Exception of France does not do this procedure...My surgeon is Benjamin Lopez...look him up....see the papers he has written.....If only I had come home to Spain....he would never have done this to me.....
and he said no one should ever contemplate having a nerve cut....ever...he was very angry that this procedure had been done...and is irreversible...oh and the TN and ATN usually come back within 18 month to 2 years...so doube the amount of joy
xxxxx
elstep said:
Am I right in thinking that there is a risk of AD in any of the surgical procedures or TN. Is any more of a risk of AD then others? For everyone who suffers from AD my heart goes out to you and how brave you all are, Carol, Jerri and others. Is there any hope that there will be a treatment for AD in the future? God Bless xxx
I read those Cleo...and they definatly back up what my surgeon said down here in Spain....
Cleo said:
Of the three abstracts Cleo has suggested, the first addresses glycerol rhizotomy -- a procedure which I have long advocated as the least effective and potentially problematic of all peripheral surgical interventions. The second abstract is a wide area review of different surgical procedure. It reveals that the quality and comparability of outcome studies is compromised by a failure to standardize measures of success or failure in the medical community. This is an apt criticism, but not a reason for choosing not to have surgery if your medications aren't working and your quality of life is taking a nose dive. The third abstract addresses microsurgical repair of nerve damage due to blunt force trauma in the face, a condition which seems to represent a minority of cases of trigeminal nerve pain. Moreover, the abstract suggests that when the nerve peripheries are damaged by such trauma, there is a high (86%) incidence of positive outcomes from microsurgery.
I believe these abstracts reveal a useful general rule: do your homework before choosing a surgical procedure, and BRING your homework to the neurosurgeon you are working with, to get a balanced medical opinion concerning how much of what you've learned is directly applicable to your own situation.
Go in Peace and Power,
Red
I agree...do your homework....but being on this site...and the vast differences of opinion regarding surgeries. just covering the US ..how on earth do you choose....How can one procedure be obsolete in the vast majority of Europe....yet still used in some parts of the US ...and ..in my case...France...All this does I think is confuse people who are really suffering from this dreadful disease.....and..more dangerously.....make them think that these surgeries are as safe as a surgery can be..No one...at any time told me I could end up with AD..and even what it was...and when you are in such dreadful gutwrenching agony its hard to make choices...even harder to make the right one...and you do put your lives literally in the Drs hands...
If the meds are working...and pain is controlled you dont need to do anything..like I did for 5 years....I was fine...compared to how I am now...I was "" normal"....I read and re-read this site.....well tried to whilst having this awful break through pain....MVD was mentioned to me when first diagnosed....but thought I would give meds a try....in France...at no stage was cutting the nerve mentioned....at no stage....releiving pressure on the nerve ...yes....and I was under the impression..after talking to the Neurologist who was fluent English...that France ..and in particular this Neurosurgeon had perfected another method of treating surgically ATN....and when the Neurologist said it was only done in France...he was right...because no other country in Europe allows it...So doing homework...which I did....didnt do me any good at all...OK im probably a special case...being in France...etc etc....but my Surgeon down here...is adamant....No nerve cutting under any circumstances....because of the extremely high risk of AD.....and yet there are still surgeons out there who are doing this procedure...and how many more people are there out there suffering more now than they was before....and even worse...ATN and TN come back.....its a minefield out there....and how many other 1000's out there who hav'nt found this site...so we dont know the real figures out there do we...My surgeon has written loads of papers on this subject....Benjamin Lopez.....read some of his work...then make an informed choice...not one out of fear and unbelievable pain....and please...take it from me...TN and ATN pale into insignificance if you get AD.....trust me I know...I live with it 24/7..take care..xx
Richard A. "Red" Lawhern said:
Of the three abstracts Cleo has suggested, the first addresses glycerol rhizotomy -- a procedure which I have long advocated as the least effective and potentially problematic of all peripheral surgical interventions. The second abstract is a wide area review of different surgical procedure. It reveals that the quality and comparability of outcome studies is compromised by a failure to standardize measures of success or failure in the medical community. This is an apt criticism, but not a reason for choosing not to have surgery if your medications aren't working and your quality of life is taking a nose dive. The third abstract addresses microsurgical repair of nerve damage due to blunt force trauma in the face, a condition which seems to represent a minority of cases of trigeminal nerve pain. Moreover, the abstract suggests that when the nerve peripheries are damaged by such trauma, there is a high (86%) incidence of positive outcomes from microsurgery.
I believe these abstracts reveal a useful general rule: do your homework before choosing a surgical procedure, and BRING your homework to the neurosurgeon you are working with, to get a balanced medical opinion concerning how much of what you've learned is directly applicable to your own situation.
Go in Peace and Power,
Red
Bonnie, when I thought the Trilepta wasn't working, and I was only taking 150 mg, instead of upping the mg, the Dr. changed it to Gabapendin 300 mg. It felt like my cheek was on fire every couple for minutes for about 30 seconds, which was something I had not felt before. It was so bad that I had to stop taking it and go back to taking the few Trileptas I had left in my cabinet and call the Dr. to tell Him to prescribe the Trilepta again just to give me a few more mgs. Now I'm on 300 mg of Oxcarbazepine twice-a-day, although the electricity chocks on my lip and part of my cheek get worst before it gets better, especially when I say down, it seems to be working at least 75 to 90% better than before. All of this to say that maybe the reason for your constant cheek burning may be due to the gabapentin.
Maddy said:
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
Are any of you on Lyrica.....I was on such a large dose of Gabapantin...and I have to say the Lyrica is better...I dont feel so woosy and confused....and I also take Trilptel....its in a bottle and you can take 20mls a day...and Amiltripaline.....you can take loads of that...Im on 150mgs..but Dr said if really bad pain...take 200g..I think its a case of suck it and see...
Dont you all wish there was one pill that you could take to make us pain free...I do....I wonder if someone really famous got this..would there be more research done...we need a voice....a famous voice.... someone that will get people to listen to us xxx
Mitzi said:
Bonnie, when I thought the Trilepta wasn't working, and I was only taking 150 mg, instead of upping the mg, the Dr. changed it to Gabapendin 300 mg. It felt like my cheek was on fire every couple for minutes for about 30 seconds, which was something I had not felt before. It was so bad that I had to stop taking it and go back to taking the few Trileptas I had left in my cabinet and call the Dr. to tell Him to prescribe the Trilepta again just to give me a few more mgs. Now I'm on 300 mg of Oxcarbazepine twice-a-day, although the electricity chocks on my lip and part of my cheek get worst before it gets better, especially when I say down, it seems to be working at least 75 to 90% better than before. All of this to say that maybe the reason for your constant cheek burning may be due to the gabapentin.
Maddy said:
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