Being new to this site and being fairly new to TN, I have many questions so please bear with me. One thing I would like to know is why so many TN patients take medications for years and don’t opt to have surgery? Is this because the doctors don’t suggest or recommend the surgery or is it because surgery is not an option for some or because of fear of the surgery? I am just wondering. I have suffered with this horrible condition for less than a year and I am more than ready to have surgery. I hate taking these meds. I have never liked or tolerated medication well. I am allergic to a lot of medications too. This afternoon I am going to my surgeon and seeing if it is possible to have surgery in December. I want to be done with this. Also I want to stop the meds. I work full-time and I am in school part-time and they are really making life difficult. Of course the pain is too. I was just wondering if anyone knew the answer as to why so many people put off having the surgery. Thank you all for being there and for being supportive of me and one another. It is so great to be able to talk to others who actually understand the pain.
Most neurosurgeons I have heard about seem to rush their patients into MVD surgery as it is a easy procdure for them to do and they know people with TN are desperate. Fact is for many ATN patients it is not a option. For others it is the fear of the surgery. I was so grateful that my neurosurgeon went into great detail of all the things that could go wrong. I ended up with a CSF leak that came out my left nostril and ended up spending 16 days in the hospital. 6 of them in ICU with a lumbar drain in my lower back, not being able to even lift my head off the pillow for 23 1/2 hours a day.
So many neurosurgeons will tell patients they will be better in 6 -8 weeks. My neurosurgeon told me I would be looking at the better part of a year before I would feeling better and he was right. It was 8 months before I got good pain relief.
We all want the pain to stop, but the fact is there is no easy fix to TN. :o( I am grateful for a friend of mine who made me promise him I would not make any surgery decsions out of haste due to pain driven desperation. I thank God every day Bill spoke up! It was a hard promise to make, but one that kept me from making what could have been a horrible mistake. It forced me to take my time to look at all treatment options.
Yes, I’d agree with Sarah - brain surgery is risky, and the surgeons cannot control the environment in there 100%. I have had 2 brain surgeries, so I speak from experience. Sarah knows all the things that I went through…so, it is not a decision to me made lightly, or in haste. I know that for every difficult outcome like mine, there are 1,000’s of perfectly successful surgeries, but you should know that there are risks.
I was never able to return to the pre-TN me, and that is a profound loss that I have mourned. So I don’t blame you for your readiness to try it. I would love to have a chance at that life again.
Lily
Yes, Yes and YES!
I have had the best healthcare that this region offers; Mass General, Dartmouth-Hitchcock and my local hospitals. I am truly grateful!
Meds failed me miserably…MVD lasted 2 weeks to the day…1st SRS lasted 2 weeks to the day…2nd SRS failed, leaving a lesion.
Thanks Cathy, it is great to talk with others about this! bob
Well I scheduled surgery for Dec. 9th and now I am seriously debating if it’s the right decision. I just don’t want to continue living like this. I am scared. I had a neighbor who had the surgery in May and she is fine so far except a little numbness. I would jusst ask for you all to pray for direction and wisdom in knowing what to do at this point. I can’t live with the pain and I can’t function on the meds. I have to work. I don’t know what else to do at this point. Thanks for your input. I do appreciate all the replies because I need to know the risks. Thanks again.
Lily said:
Yes, I’d agree with Sarah - brain surgery is risky, and the surgeons cannot control the environment in there 100%. I have had 2 brain surgeries, so I speak from experience. Sarah knows all the things that I went through…so, it is not a decision to me made lightly, or in haste. I know that for every difficult outcome like mine, there are 1,000’s of perfectly successful surgeries, but you should know that there are risks.
I was never able to return to the pre-TN me, and that is a profound loss that I have mourned. So I don’t blame you for your readiness to try it. I would love to have a chance at that life again.
Lily
Bob: I don’t even know what SRS is? I have a lot to learn. I guess I’m driven by fear to go ahead with the surgery. The surgeon offered radiation but said it would take a while to work. I just am at a loss as to what to do at this point.
Bob Snodgrass said:
Yes, Yes and YES!
I have had the best healthcare that this region offers; Mass General, Dartmouth-Hitchcock and my local hospitals. I am truly grateful!
Meds failed me miserably…MVD lasted 2 weeks to the day…1st SRS lasted 2 weeks to the day…2nd SRS failed, leaving a lesion.
Thanks Cathy, it is great to talk with others about this! bob
Cathy,
It is a tough decision. I was not referred to a surgeon and I believe it was because my MRIs were negative. Also the meds controlled my pain for 3 l/2 yrs until the pain suddenly became almost unbearable. My surgeon offered two choices, MVD or gamma knife. But he didn’t really explain complications. I am glad I had the MVD because it helped me so much but it didn’t relieve all my pain. I still take the same medication and it worked for about 13 mths. But now the pain is getting worse. I have tried several other medications. I am considering an MVD one more time. But since I am not hurting like I was, I am not ready to rush into surgery. I postponed my surgeon’s appt until 4 Jan. If I was hurting like I was before my MVD, I would not hesitate to try it again. I think you will find that those who had successful MVDs would recommend it and those who had complications or failures, would not recommend it. I have added another medicine to my other meds, klonopin. Well, it has made me so sleepy. I fell asleep today driving to work and bumped into a car in front of me. Fortunately there wasn’t any injuries or damage to the other vehicle. But the medicine is working well and the doctor said that with time the sleepiness may go away. So now I have to rearrange my work schedule and/or depend on others should I wake and feel as sleepy as I did yesterday and today. Those type of issues make me want to try the surgery again.
Liz
I agree with what the others have said. We went the route of medicine for about 3 years but wanted to see if we could get the quality of life back pre-TN and pre-medicated Zombie-land. After researching and hearing about the different option and after attending the TNA National Conference, we decided to try MVD. Why not? Because it’s surgery and its scary!!! But why? Becuase TN is horrible and IT is scary too. We are 6 weeks post MVD and still struggling and are still scared… There is numbness, there is a new pins and needles kind of constant pain - But, there is no TN pain!!! So why not? Becuase it’s not a gaurentee, but nothing is. Why? Becuase it’s hope, and sometimes we feel like we are running out. It’s a very personal decision and I just hope you research it and take time to think it through and please be sure to question your surgeon, talk to another one, and another one and find one that has experience in performing these surgeries. Do whatever you can do (hospital and surgeon selection) to increase your chances of sucess of that is the route you choose.
Best wishes! Now get out that good old fasion pen and paper and start that pro’s and con’s list… Happy decision making!
-Beth
Thanks Beth. I am trying to weigh it all out.
Beth Lipovsky said:
I agree with what the others have said. We went the route of medicine for about 3 years but wanted to see if we could get the quality of life back pre-TN and pre-medicated Zombie-land. After researching and hearing about the different option and after attending the TNA National Conference, we decided to try MVD. Why not? Because it’s surgery and its scary!!! But why? Becuase TN is horrible and IT is scary too. We are 6 weeks post MVD and still struggling and are still scared… There is numbness, there is a new pins and needles kind of constant pain - But, there is no TN pain!!! So why not? Becuase it’s not a gaurentee, but nothing is. Why? Becuase it’s hope, and sometimes we feel like we are running out. It’s a very personal decision and I just hope you research it and take time to think it through and please be sure to question your surgeon, talk to another one, and another one and find one that has experience in performing these surgeries. Do whatever you can do (hospital and surgeon selection) to increase your chances of sucess of that is the route you choose.
Best wishes! Now get out that good old fasion pen and paper and start that pro’s and con’s list… Happy decision making!
-Beth
I was diagnosed in May and had all the same questions. I just had a second opinion appt with a Neurosurgeon who is a leader in the field. The first one said I should have the surgery. The leader in the field said that I should exhaust all medical options - even though I am in disability from the meds - before having surgery. I have some atypical symptoms, so that might be why he said that in my case. From what I have researched, the “success” rates of the surgery (in my case MVD) are not what they seem. Success means that they separated the nerve and blood vessel. It seems that it is normal for people to still need meds after the surgery and for the pain to return. But even when that happens, the first surgery is still called a success. Some people have reported that they are happy they did it. Also, if you don’t have someone who is really good, at a world class medical center, you can have lots of complications. I also could not understand why people waited for years, but the fact that most people do, should tell us something.
Let me try to draw some of the threads together here, if I may, based on 15 years of talking with pain patients as a technically trained patient advocate, but not a medical doctor.
Most doctors advise patients to exhaust medication alternatives before going to surgery. As others have surmised, this is in part because there are risks in surgery, and in part because not all types of facial neuropathic pain are responsive to the surgeries now available. I would qualify that observation in one way, however. Let’s remember that forums such as this one tend to be visited by people who are having trouble with meds or after effects of surgery, to a much greater degree than by people who have had good outcomes. So the experiences of those here are to some extent unintentionally biased toward those who have had bad outcomes. Medication is successful for tens of thousands of people for very extended periods. My wife, for instance has been managing a combination of typical and atypical TN pain for 15 years, first on Tegretol and later on Neurontin.
Another and related reason that doctors recommend delaying surgery is that for many patients, even a successful outcome may over time relapse into pain – requiring further surgeries. About 50% of patients with typical TN pain who go through a successful MVD will relapse by 7 to 10 years after the procedure. A second MVD may correct that relapse, but success statistics on any second procedure are not as good as on the first.
As I read the medical literature, the “best” surgical procedure for typical TN paon (volleys of electric-shock stabs)is presently MVD, followed closely or in some neurosurgical practices possibly with overlapping statistics by RF Rhizotomy. Behind these two, one finds balloon compression and partial sectioning of the nerve. In a dead heat for last are alcohol rhizotomy and gamma knife, with this form of rhizotomy being somewhat more successful on a repeat of itself, than gamma knife. I’ve heard neurosurgeons remark that gamma knife makes a real mess out of the areas where it is used, and as a practical matter makes any follow-on procedure much less likely to succeed.
In atypical cases (constant burning, grinding, boring pain), none of the standard meds or procedures works as well as in typical TN. With atypical TN, the tri-cyclic depressant meds may have more of a positive role in treating the pain – possibly because of a cross-over effect in a chemical channel that is involved in both pain sensitivity and depression. NSAIDs (narcotic drugs) also seem to help some ATN patients, in combination with muscle relaxants and tranquilizers. But it’s all very much a hit-or-miss, trial-and-error process that patients have to work through in cooperation with their doctors.
I hope this provides some perspective on the options for a newby who is considering immediate surgery. And I do wish you well.
Go in Peace and Power
Red Lawhern, Ph.D.
Hi Cathy,
I haven’t been on the forum for awhile as mentioned previously, a lot of TN patients after getting some relief tend to drift away from the site - but we don’t totally go away.
TN is a funny beast. I had been on medication for 1.5 years and in March as the weather warmed, so did the condition. Since then, I moved south to New Orleans and have stopped taking all medication. I still get a twinge, but nothing like before.
So, consider environmental factors with TN as well: weather, stress, health and so on.
Surgery was immediately brought up by a private doctor when I was diagnosed with TN. I got another opinion and they wanted to go through the gambit of medication… again this varies from professional to professional. When I asked doctors about all the side effects of the medication - normally I would get a blank stare and no sympathy when it was obvious I could not function on the medication.
The best thing is to give yourself time - yes, pain is horrid and we all want to avoid it at all costs, but you need to give yourself some time on the medication and see if there is a pattern to set off attacks - if they are just random or any other factors that can affect your TN. Don’t rush into surgery - it is brain surgery and there are risks as mentioned before.
Above all be gentle with yourself and listen to your body.
Maeve
I certainly apprecciate everyone’s input. I have scheduled the surgery but still not convinced one way or the other. If I don’t do something soon I will have to go out of work on disability because the side effects of the meds. I can’t stand the medication. At first my body got use to it and I was okay and finally got out of pain. Then eventually the doctor said I could wean off (after I asked). I was fine for about two weeks and then it came back with a vengence. That was about a month ago and I still can’t get it under control. He keeps increasing the meds and I can’t keep working in this condition. My doctor only mentioned surgery when I asked my options. He said when I was ready. So I can’t say he pushed it. He offered me radiation but said it would take some time to work. I have a good friend and neighbor that had a very successful surgery in May and is doing great. However, my doctor did warn me that it would probably come back in a few years. I will keep reading and researching. My surgeon has an excellent reputation and I have dealt with their office for years so I do trust them. Thank you all again and I will keep you all in my prayers.
Dear Cathy,
Whatever decision you make, please keep us posted - we are all here to support you, and help should the need arise. I wish you all the best. One of the extenuating circumstances in my case was undiagnosed intercranial hypertension, and arachnoid scarring that was found once they went in. So I am an anomaly. Only you can make such a personal decision. I would like to follow your MVD story, as would others, I am sure, and you would be doing a real service to others with this disease if you should choose to share it with us.
You are a brave person who is being smart and doing the necessary homework.
All my best wishes to you,
Lily
Pat: What is AD? I told you I am new to all this so I don’t know a lot of the abbreviations. I understand that your surgery went bad (and for that I am truly sorry) and I know you lost your contract and career but could you have kept it on the meds? I hate the meds. I know I keep saying that but I am a wimp when it comes to medication. I cannot function at work on these medications. I am also afraid of driving. I get extremely sleepy on the meds and I am afraid I’ll have a wreck. I really don’t want to go out on disability because of the meds. I have to tell all of you that I am now terrified of the surgery. As I said before my friend had a very successful surgery and it was done by a very reputable surgeon who definitely didn’t push her into it. She just said that she would not have waited if she would have known that she could have been pain free sooner. My fear is now, is what do I do if the pain goes away before I have the surgery. Do I back out at that point? This is really all overwhelming to me and I don’t know who else to talk to. I will continue to do research but I am just getting more and more confused and more afraid. But still I appreciate all the replies and information.
Pat Akerberg said:
Hi Cathy,
I agree with much of what has already been said and in particular NOT rushing into surgery out of fear and desperation. In my case I was diagnosed in October of 09 and had just signed a big consulting contract for 3 years worth of work. I was also on a high dose of Trileptal that caused my blood sodium to plummet to the point of hospitalization. My neurologist was a neophyte in the world of TN and couldn’t offer recommendations as to treatments versus medications. I was terrified - terrified of the pain, the drugs not working (I too am allergic to many drugs), or of losing the work contract. So we relentlessly researched for 2 months, picked a place and a surgeon who does 5 MVD’s/week and had an MVD in January of this year.
It turned out badly and I now have AD for which there is no cure. So I traded horrific intermittent pain for intractable 24/7 pain and case is closed on my career. If I had a do over, I would never have let fear and desperation drive my decision. Deep down I was conflicted about having the surgery but couldn’t seem to see any other way out of the pain that was stalking me. In hindsight I would have tried other drugs and other treatments (not nerve destructive ones) and taken my time until whatever decision I came to, I came to with confidence and resolve. Not conflicted. That’s no way to go into a serious surgery from my perspective.
At my post op appointment I was dropped like a hot potatoe when it was clear I had complications. I just assumed that aftercare would be there as part of the whole surgical process - big mistake. Big because once you have a complication with a surgical procedure, other neurosurgeons are very reluctant to see you and take on someone elses’ issues. It took a lot of doing and begging on my part to finally get another neurosurgeon to talk with me and give me a true diagnosis. Good thing because I have another complication now - spinal fluid leakage.
Having said all of that, you could be one of the fortunate ones for whom things turn out well and I truly wish that for you. We’d all cheer knowing that one of us escaped the clutches of TN. But I’d encourage you to please pay attention to whether you can make peace with your decision or not. If not, there’s no harm until waiting until you can. It’s too important. Best wishes,
Pat
Thanks Lily. I will try to keep you all posted on my decisions and should I have the surgery I will definitely keep in touch and let you know what happens. As I said before I am not 100% convinced I’ll have the surgery in December but we will see. Wasn’t Anna having surgery today? I am so anxious to hear how she is doing. Guess I’ll go now because the little devil in the side of my face is acting up again. Of course because I just took two pills and he knows it’s time to go to sleep and he can’t mess with me when I’m asleep. Good night.
Lily said:
Dear Cathy,
Whatever decision you make, please keep us posted - we are all here to support you, and help should the need arise. I wish you all the best. One of the extenuating circumstances in my case was undiagnosed intercranial hypertension, and arachnoid scarring that was found once they went in. So I am an anomaly. Only you can make such a personal decision. I would like to follow your MVD story, as would others, I am sure, and you would be doing a real service to others with this disease if you should choose to share it with us.
You are a brave person who is being smart and doing the necessary homework.
All my best wishes to you,
Lily
To answer the question “What is AD”. This is an abbreviation for Anesthesia Delourosa (spelling may be imprecise). This is a symptom that sometimes emerges after MVD surgery. Areas of the face have a peculiar mixture of insensitivity to light surface touch combined with constant deep burning pain. (sigh)… It’s also a real bear to treat.
Regards, Red
Pat: Thank you so much for sharing. I just remember so vividly the first onset of the pain and being so scared because nothing was working for the pain. I ended up in the ER with my BP 200/145, burning up and vomiting just from the pain. That scares the hell out of me. I am so scared to have that pain back. I am also scared of losing my job at this point because I can’t function on the medication. I am terrified of the surgery now and terrified of not having it. I believe in the power of prayer. I believe in a wonderful, loving God that will see me through no matter what but He knows I am only human, thus the doubts and fears.
I can’t say thank you enough to you and all the others for sharing their experiences and knowledge on this dreadful condition. I also appreciate the support and the non-judgemental attitudes by saying it’s a personal decision.
Wishing everyone a Happy Halloween!
Pat Akerberg said:
Cathy,
AD is a serious complication that can occur with any of the treatments for TN (rhizotomy, gamma knife, MVD surgery). Supposedly it occurs less with MVD surgery - 1% of the time. It’s spelled “anesthesia dolorosa” and it means “painful numbness”. Numbness that is NOT like going to the dentist because it involves extreme pain at the same time. It’s a result of insult or damage done to the trigeminal nerve that leaves one with a condition. The condition (versus symptom) involves intractable (constant) pain. Things are are not normally painful, like talking, eating, brushing your teeth, touching your face - are. In my case there’s a dense numbness that has a pulling sensation along with a pins and needles moving across my face and tongue sensation at the same time that my teeth (upper and lower) have sharp aching pain like a roving root canal being drilled. This new form of torment never stops.
In answer to your question about having stayed on the meds. At the time I was so scared that my mind was scrambled (by fear and the drugs) that I couldn’t see how I was going to cope just being on the meds. Now I realize that I could have coped by finding a better combination of meds and finding a way to arrange rides/car pooling. I tend to react differently to drugs that most. Not only can’t I sleep at night on them, I can’t sleep or nap during the day either. They don’t make me sleepy/drowsy - they make me dull, fatigued, and depressed. The depressed part is what I can’t stand. Ironically I had the surgery to be done with the nasty drugs and here I am back on them and now tied to them for life.
The bottom line is that TN is a personal demon that no one can possibly begin to comprehend unless they have it, period. We all have different reactions to medications and responses to the various treatments. I talked with 2 people who had a great experience with my surgeon and 2 who didn’t. Depending on your filter you will find data to confirm or deny whatever you do or don’t believe in. I also know 3 people who have been pain free for years who swear by upper cervical chiropractic. There will be others who will discredit alternative methods. So in the end, if you can quiet your heart and mind enough, you will have the discernment to follow your own innate guidance. Mine was there but I never stopped thinking long enough to try feel it and do what it was telling me.
Please don’t let any “shoulds” lead the way. If you want to cancel right up to the last minute - so be it, it’s your life! If you decide to go through with it, then put all of your doubts aside and ready yourself for a positive outcome. If you cannot do that, then take your time. Hope this helps…
Pat
Hi Cathy,
I had the MVD surgery in May 2009 and have been pain free since then. I had TN for eight years and took meds until I came to the toxic level on Tegretol and began to have double vision. I was on Tegretol, Baclofen and Lyrica and the pain was still breaking through. I finally started looking up different options on the internet and asked my neurologist to refer me to a neurosurgeon. The neurologist thought I should try Gamma knife. I learnt about the MVD when I went to the appointment with the neurosurgeon. Scared me so much I practically ran from that office. So for eight years I had just taken meds and did exactly what the doctor said to do without questioning if their were other ways of treating this disorder. I started doing research and was still undecided between GK or MVD. It took me six months to get up the nerve to decide I would have to something besided meds. I found a Neurosurgeon with alot of experience with TN and went to him for a second opinion. This was three hours away from my home but I didn’t feel that was too far. He explained everything and also told me I was not a candidate for GK being that I was in good health and too young and he felt the MVD would be my best choice. He said the GK destroys the nerve and the MVD cushions the nerve. If I had GK and it didn’t work, then my chance of MVD working would be less since the nerve was damaged. I told him to put me on the surgery schedule that day. Then I had four weeks of worrying , second guessing my decision and being scared before the day of surgery. I had all my facts before I went to that appointment. No longer was my head in the sand and I think I was just ready to make the decision.
Anyway, I had the surgery and was pain free from the nerve pain and realized that as soon as i woke up. I kept touching my face thinking can it really be gone. It’s gone. The left side of face was numb for a few weeks, but all feeling came back. I didn’t have any complications and was back to work in 6 weeks. I am very grateful for having my life back. I know this may not last forever, but the surgery was definetly my best decision.
It saddens me when I read stories on here about problems people have had after MVD and that it didn’t take their pain away. That is a chance you take. It is a major surgery, but if my pain came back and they said MVD, I would say how soon. I love waking up in the morning and am pain free.
My wish is you will have an easy recovery and will be pain free.
Connie
Connie: What awesome news. I have heard stories from both sides but I have to say I love hearing the stories of success and it does give me hope. My next question is if my Neurontin does start working (and I can tell it is starting to work) and I am pain free by the time I go into surgery…how will I know that it was a success? I guess I’ll know when he weans me off the meds after surgery? Oh well I am so happy for you. My surgeon did warn me that it could all come back in a few years and that would be normal. I do hate the pain but I can usually knock myself out with meds if I am at home and go to sleep. Of course if I’m working or driving I can’t do that. But the meds are horrible. I don’t feel that I even know myself and I think they are part of the reason I am having such a tough time making a decision. I really can’t think clearly. You can probably tell that by me emails. Again thank you so much for sharing your amazing story and I am so very happy for you.
Connie said:
Hi Cathy,
I had the MVD surgery in May 2009 and have been pain free since then. I had TN for eight years and took meds until I came to the toxic level on Tegretol and began to have double vision. I was on Tegretol, Baclofen and Lyrica and the pain was still breaking through. I finally started looking up different options on the internet and asked my neurologist to refer me to a neurosurgeon. The neurologist thought I should try Gamma knife. I learnt about the MVD when I went to the appointment with the neurosurgeon. Scared me so much I practically ran from that office. So for eight years I had just taken meds and did exactly what the doctor said to do without questioning if their were other ways of treating this disorder. I started doing research and was still undecided between GK or MVD. It took me six months to get up the nerve to decide I would have to something besided meds. I found a Neurosurgeon with alot of experience with TN and went to him for a second opinion. This was three hours away from my home but I didn’t feel that was too far. He explained everything and also told me I was not a candidate for GK being that I was in good health and too young and he felt the MVD would be my best choice. He said the GK destroys the nerve and the MVD cushions the nerve. If I had GK and it didn’t work, then my chance of MVD working would be less since the nerve was damaged. I told him to put me on the surgery schedule that day. Then I had four weeks of worrying , second guessing my decision and being scared before the day of surgery. I had all my facts before I went to that appointment. No longer was my head in the sand and I think I was just ready to make the decision.
Anyway, I had the surgery and was pain free from the nerve pain and realized that as soon as i woke up. I kept touching my face thinking can it really be gone. It’s gone. The left side of face was numb for a few weeks, but all feeling came back. I didn’t have any complications and was back to work in 6 weeks. I am very grateful for having my life back. I know this may not last forever, but the surgery was definetly my best decision.
It saddens me when I read stories on here about problems people have had after MVD and that it didn’t take their pain away. That is a chance you take. It is a major surgery, but if my pain came back and they said MVD, I would say how soon. I love waking up in the morning and am pain free.
My wish is you will have an easy recovery and will be pain free.
Connie