I was diagnosed in October 2015. I was put on Tegretol and then Oxcarbazapine, but I had an allergic reaction to the Oxcarb (so can never take it or Tegretol again) and was switched to Baclofen (20 mg 3x/day=60 mg). My MRI very clearly shows I have both an artery and a vein impinging on my trigeminal nerve in the same place, so I'm an excellent candidate for surgery (according to my neurologist and neurosurgeon at Johns Hopkins). I haven't been experiencing much pain, but I've had excessive daytime sleepiness (my neurologist ordered a sleep study for me because he's curious if the Baclofen is causing apnea, or just causing my excessive sleepiness). Yesterday my neurologist was really pushing for me to consider the surgery sooner rather than later (do I really want to be on Baclofen three times a day for possibly 50 or so years?!). Now my question is, do I put it off or just bite the bullet and do it? I'm so scared, I can't even think about it,and it's especially hard to think about given the pain is very manageable at this point. What do you suggest I do?
I recently asked a question related to MVD and had few responses. My belief is others are worried to push one way or the other. The chances of being pain free without surgery are slim. The risks of surgery are scary. We all have those same fears, so we sit quietly hoping someone will come along and tell us all how to fix this monster inside of us.
I would love to hand off the decision to have/not have surgery. Fear is truly paralyzing mentally. I don't have an "answer" for you, but wanted to let you know you aren't alone. Maybe someone who has had the surgery can offer words of wisdom.
It is obviously your choice but if you have a chance at a better quality of life then surgery sounds like the way to go. That being said, surgery comes with risks and there are no guarantees. I wish you peace as you decide.
Steph, I fear my first response came across as harsh and mean spirited. That was not my intention.
I am also at a crossroad (increased meds and side effects or MVD) and unsure of my way. Others can tell us the way they would go, but they have never been down the exact paths we are on. Even as fellow sufferers, we can't tell each other the way. Each path is so different. Each path has road blocks and potholes.
I really wish there was a clearcut path to a pain free life. For me, I fear being in more pain. I know the pain I face day after day. The fear of taking a path that leads to more pain has me standing still, waiting, hoping. Hoping for peace and a still, small voice to show me the way.
I pray that you find peace as you make your decision.
Thank you for all of your responses. After reading your replies, it is more clear to me than before that this is truly an individual decision that nobody else is able to make for me. I did not take your first post as mean spirited or harsh, famof8, and reading your 2nd reply makes me feel like we’re in the same place and I understand how hard it must have been for you and the others to come up with a response to my request. This is so challenging and I’m constantly changing my mind about how to proceed. So, I too, am “standing still, waiting, hoping.” It just doesn’t help that I’m a planner by nature. I want to have all of my “ducks in a row,” but with this, it’s not that simple or clear cut. I wish all of you comfort and peace as you travel down this bumpy road with/ahead of me.
After eight months of medication, I was maxed out on dosage, and still in daily pain. I also developed bilateral within n that time period. I chose to explore surgical options, and went ahead with MVD. As the TN on my right side had been present ( undiagnosed) for almost ten years, the projected success rate was not 100%, but I was willing to undergo the surgery. The procedure eliminated the shocking pains, but the chronic burning boring pain returned after 6 months. I then had a peripheral nerve stimulator I planed to manage the pain on that side. Six months later, I had MVD on my left side, which had only been affected for one year, and it was completely successful at resolving both the shocks and the burning boring pain. I am now medication free.
Everyone needs to take the course they feel is best for them. I do know the fact that my Trigeminal nerve on the right had been compressed for so long that it affected the outcome of the surgery.
Best of luck to you! Christine
I am on carbamazepine + take a magnesium supplement and my pain is managed. I don't usually feel pain unless I forget to take my medication on time. It's like a sick game cause sometimes I feel so good that I forget my medication, but then TN reminds me it's still there, so I'm not free, I totally depend on my medication. That used to make me sad and annoyed. I think I will never get rid of some medication for the rest of my life. On the other side I don't want to go through brain surgery if my pain's managed, at least no now. I can still enjoy life with my family and this is not terminal. Sometimes I wish I could back to normal, but I guess this is my new normal...For me brain surgery is not an option unless pain gets out of my hands.
Christine, That sounds interesting.I have had TN for 22 years. I have had 2 MVD's. One in 1997 and was pain free for 8 years. The 2nd in 2013 and it was unsuccessful. I am currently on 3 medications ( over maximum dose on one). My pain is more of the burning, boring pain. I have seen several surgeons. Some see a "vessel" and suggest a 3rd MVD and 2 surgeons suggest a Rhyzotomy with glycerin. I have read about a peripheral nerve stimulator as sort of a final option. Can you tell me the hospital that performed the peripheral nerve stimulator? Also, did you get a MVD on the same side after the peripheral nerve stimulator? Did the same hospital that performed the nerve stimulator perform the MVD's? Sorry for all the questions. I am trying to make the best educated decision on how to proceed further as I am approaching medication failure. I am so glad you are medication free. I hope that lasts a long time for you!! Artfan
Christine said:
After eight months of medication, I was maxed out on dosage, and still in daily pain. I also developed bilateral within n that time period. I chose to explore surgical options, and went ahead with MVD. As the TN on my right side had been present ( undiagnosed) for almost ten years, the projected success rate was not 100%, but I was willing to undergo the surgery. The procedure eliminated the shocking pains, but the chronic burning boring pain returned after 6 months. I then had a peripheral nerve stimulator I planed to manage the pain on that side. Six months later, I had MVD on my left side, which had only been affected for one year, and it was completely successful at resolving both the shocks and the burning boring pain. I am now medication free. Everyone needs to take the course they feel is best for them. I do know the fact that my Trigeminal nerve on the right had been compressed for so long that it affected the outcome of the surgery. Best of luck to you! Christine
Steph, I fear my first response came across as harsh and mean spirited. That was not my intention.
I am also at a crossroad (increased meds and side effects or MVD) and unsure of my way. Others can tell us the way they would go, but they have never been down the exact paths we are on. Even as fellow sufferers, we can't tell each other the way. Each path is so different. Each path has road blocks and potholes.
I really wish there was a clearcut path to a pain free life. For me, I fear being in more pain. I know the pain I face day after day. The fear of taking a path that leads to more pain has me standing still, waiting, hoping. Hoping for peace and a still, small voice to show me the way.
I pray that you find peace as you make your decision.
I understand where you are coming from and it was a good answer to Steph.
I am new here but am getting more and more concerned about operations like MVD.
Research it well Steph.
famof8 said:
Steph, I fear my first response came across as harsh and mean spirited. That was not my intention.
I am also at a crossroad (increased meds and side effects or MVD) and unsure of my way. Others can tell us the way they would go, but they have never been down the exact paths we are on. Even as fellow sufferers, we can't tell each other the way. Each path is so different. Each path has road blocks and potholes.
I really wish there was a clearcut path to a pain free life. For me, I fear being in more pain. I know the pain I face day after day. The fear of taking a path that leads to more pain has me standing still, waiting, hoping. Hoping for peace and a still, small voice to show me the way.
I pray that you find peace as you make your decision.
Hi Steph . . You should absolutely read my story that I published last Fall. I had a successful MVD 9 months after my first symptoms hit and have now been pain and med-free for more than two and a half years. I would do it again, and sooner than later, in a heartbeat. The article I wrote details my journey and my decision making to have the MVD. Hope this helps . . .Trigeminal Neuralgia: How I Survived The Worst Pain Ever.
Thank you so very much for your message and for sharing your incredible article with me. It was really the most comprehensive and inspiring article I’ve read about TN. I have been experiencing more and more breakthrough pain recently and I’m pretty convinced that Baclofen is causing me to have sleep apnea (I’m having a sleep study tomorrow night to find out), so taking all of that into consideration along with the likelihood that the pain is only going to get worse, I’m really thinking more seriously about having the MVD. Not to mention, I’ve seen the very obvious kink (compression) the artery and vein have caused in my Trigeminal nerve on my MRI. It’s not pretty. Really dumb question, but someone else mentioned having further complications following vomiting after the surgery- were you given antinausea medication before and after going under? Thanks again for writing and sharing your great article. I hope your pain continues to stay away!!
I had no complications at all from the surgery but I did have pretty bad nausea from being under anesthesia for so long for just the first 24 hours after surgery. I do though have a pretty weak stomach in any situation so my body's reaction might be different than others. Honestly, that first 24 hours, to me, was the worst part of recovery because I cannot stand nausea. The recovery after that was truly a "walk in the park" compared to the pain of TN. My head hurt a lot of course and I was weak and tired but it was all temporary and now I've lived coming up on 3 years this Fall with zero pain and no meds. I teach fitness classes for my job and I was walking on a treadmill just 4 days after surgery and taking a spin class about a month after with no problems (holding back though). Please keep us posted on your surgery decision and in the meantime, my advice is to get your body ready for surgery by following an anti-inflammatory diet. I did this for a couple of months before my surgery and it made a big difference in my recovery. Best wishes to you and please let me know if you have any questions.
Steph,
I too was impressed with mybells article and I too agree that it is a personal decision that only we ourselves can make. I personally had the MVD procedure done recently May 13,2016. My personal life and all that I held dear had been disrupted with theTN.
I had considered the Gamma procedure but after reading all about this and other less evasive directions,I did not want to have to continue on maintence meds and wanted this pain issue to have the best chance of being eliminated from my life.
So far the surgery was a complete success and I did do my research with a few different surgeons in my area . I found a fine neurosurgeon at the U of W medical center/ Seattle.
Yes it was scary but I was confident that this procedure would have the best outcome for my particular issue. It was quite complex @ 91/2 hours of surgery, my Trigeminal nerve was successfully decompressed.
It was being strangled by several vessels and 7 Teflon pledgets were inserted to allow that nerve to do what it needed to do, unencumbered. Yes I would do it again if needed.
As far as nausea is concerned, yes I did throw up once after the surgery and after that, I was given some anti nausea pills that stopped that in the tracks.
Each fine hospital has a wonderful staff of nurses that will monitor you every minute while you are waiting for the surgery as well as post - operatively while you are made comfortable in the SICU wing. It’s like having Mom right by your bedside caring for you. I had the MVD surgery May13th Friday and went home Sunday afternoon. I sent flowers to both my surgeon and team as well as the wonderful nurses in recovery. It was a excellent day all around for me. My very Best you and others contemplating this option.
Do your research and pick a great surgeon that has done many successful procedures and a facility that has A+ rating nationwide.
So great to hear your success story. I have been put off any type of surgery.
I doubt I could get a surgeon in this country that has even done it.
If it is what I have. I wish I could be certain.
Steph, I too was impressed with mybells article and I too agree that it is a personal decision that only we ourselves can make. I personally had the MVD procedure done recently May 13,2016. My personal life and all that I held dear had been disrupted with theTN. I had considered the Gamma procedure but after reading all about this and other less evasive directions,I did not want to have to continue on maintence meds and wanted this pain issue to have the best chance of being eliminated from my life. So far the surgery was a complete success and I did do my research with a few different surgeons in my area . I found a fine neurosurgeon at the U of W medical center/ Seattle. Yes it was scary but I was confident that this procedure would have the best outcome for my particular issue. It was quite complex @ 91/2 hours of surgery, my Trigeminal nerve was successfully decompressed. It was being strangled by several vessels and 7 Teflon pledgets were inserted to allow that nerve to do what it needed to do, unencumbered. Yes I would do it again if needed. As far as nausea is concerned, yes I did throw up once after the surgery and after that, I was given some anti nausea pills that stopped that in the tracks. Each fine hospital has a wonderful staff of nurses that will monitor you every minute while you are waiting for the surgery as well as post - operatively while you are made comfortable in the SICU wing. It's like having Mom right by your bedside caring for you. I had the MVD surgery May13th Friday and went home Sunday afternoon. I sent flowers to both my surgeon and team as well as the wonderful nurses in recovery. It was a excellent day all around for me. My very Best you and others contemplating this option. Do your research and pick a great surgeon that has done many successful procedures and a facility that has A+ rating nationwide.
Steph, What part of the world do live might I ask, and have you googled your particular area perchance, there may be medical centers closer than you might think. I do know Europe has a bunch of great medical centers, am not sure where else to suggest. Best of luck… BB
farmeress said:
Farmeress said:
So great to hear your success story. I have been put off any type of surgery.
I doubt I could get a surgeon in this country that has even done it.
If it is what I have. I wish I could be certain.
Steph, I too was impressed with mybells article and I too agree that it is a personal decision that only we ourselves can make. I personally had the MVD procedure done recently May 13,2016. My personal life and all that I held dear had been disrupted with theTN. I had considered the Gamma procedure but after reading all about this and other less evasive directions,I did not want to have to continue on maintence meds and wanted this pain issue to have the best chance of being eliminated from my life. So far the surgery was a complete success and I did do my research with a few different surgeons in my area . I found a fine neurosurgeon at the U of W medical center/ Seattle. Yes it was scary but I was confident that this procedure would have the best outcome for my particular issue. It was quite complex @ 91/2 hours of surgery, my Trigeminal nerve was successfully decompressed. It was being strangled by several vessels and 7 Teflon pledgets were inserted to allow that nerve to do what it needed to do, unencumbered. Yes I would do it again if needed. As far as nausea is concerned, yes I did throw up once after the surgery and after that, I was given some anti nausea pills that stopped that in the tracks. Each fine hospital has a wonderful staff of nurses that will monitor you every minute while you are waiting for the surgery as well as post - operatively while you are made comfortable in the SICU wing. It's like having Mom right by your bedside caring for you. I had the MVD surgery May13th Friday and went home Sunday afternoon. I sent flowers to both my surgeon and team as well as the wonderful nurses in recovery. It was a excellent day all around for me. My very Best you and others contemplating this option. Do your research and pick a great surgeon that has done many successful procedures and a facility that has A+ rating nationwide.
Where do you live that you aren't sure you'd find a surgeon? Can you possibly travel elsewhere to pursue a more definitive diagnosis?
farmeress said:
Farmeress said:
So great to hear your success story. I have been put off any type of surgery.
I doubt I could get a surgeon in this country that has even done it.
If it is what I have. I wish I could be certain.
Steph, I too was impressed with mybells article and I too agree that it is a personal decision that only we ourselves can make. I personally had the MVD procedure done recently May 13,2016. My personal life and all that I held dear had been disrupted with theTN. I had considered the Gamma procedure but after reading all about this and other less evasive directions,I did not want to have to continue on maintence meds and wanted this pain issue to have the best chance of being eliminated from my life. So far the surgery was a complete success and I did do my research with a few different surgeons in my area . I found a fine neurosurgeon at the U of W medical center/ Seattle. Yes it was scary but I was confident that this procedure would have the best outcome for my particular issue. It was quite complex @ 91/2 hours of surgery, my Trigeminal nerve was successfully decompressed. It was being strangled by several vessels and 7 Teflon pledgets were inserted to allow that nerve to do what it needed to do, unencumbered. Yes I would do it again if needed. As far as nausea is concerned, yes I did throw up once after the surgery and after that, I was given some anti nausea pills that stopped that in the tracks. Each fine hospital has a wonderful staff of nurses that will monitor you every minute while you are waiting for the surgery as well as post - operatively while you are made comfortable in the SICU wing. It's like having Mom right by your bedside caring for you. I had the MVD surgery May13th Friday and went home Sunday afternoon. I sent flowers to both my surgeon and team as well as the wonderful nurses in recovery. It was a excellent day all around for me. My very Best you and others contemplating this option. Do your research and pick a great surgeon that has done many successful procedures and a facility that has A+ rating nationwide.
I'm so glad to hear that other than the initial nausea (ugh!), you didn't have any complications after the surgery and that your recovery went so smoothly! I'm definitely going to look into starting an anti-inflammatory diet. A friend mentioned it to me when I was first diagnosed, but I couldn't even eat solid foods for a few days and was so out of it from the medication, there was no way I could manage putting myself on a particular diet. Now things are different and I'm going to look into it. I have an appointment with Dr. Lim at Johns Hopkins on 7/1, so I'll let you know how that goes and what the plan is moving forward. I keep thinking I'm probably going to have the surgery in the fall... Stay well!!!
mybell said:
I had no complications at all from the surgery but I did have pretty bad nausea from being under anesthesia for so long for just the first 24 hours after surgery. I do though have a pretty weak stomach in any situation so my body's reaction might be different than others. Honestly, that first 24 hours, to me, was the worst part of recovery because I cannot stand nausea. The recovery after that was truly a "walk in the park" compared to the pain of TN. My head hurt a lot of course and I was weak and tired but it was all temporary and now I've lived coming up on 3 years this Fall with zero pain and no meds. I teach fitness classes for my job and I was walking on a treadmill just 4 days after surgery and taking a spin class about a month after with no problems (holding back though). Please keep us posted on your surgery decision and in the meantime, my advice is to get your body ready for surgery by following an anti-inflammatory diet. I did this for a couple of months before my surgery and it made a big difference in my recovery. Best wishes to you and please let me know if you have any questions.
I'm thrilled to hear you had such a successful experience! This gives me hope. I'm going to have my surgery at Johns Hopkins in Baltimore, since it's only around an hour (or less) from my home outside of DC (and has a great reputation!). I'm scheduled to meet with Dr. Michael Lim there on July 1 to discuss the surgery. I hope you continue to feel well!! And that was so nice of you to send flowers- great idea I'll have to remember to do, too!
BB said:
Steph, I too was impressed with mybells article and I too agree that it is a personal decision that only we ourselves can make. I personally had the MVD procedure done recently May 13,2016. My personal life and all that I held dear had been disrupted with theTN. I had considered the Gamma procedure but after reading all about this and other less evasive directions,I did not want to have to continue on maintence meds and wanted this pain issue to have the best chance of being eliminated from my life. So far the surgery was a complete success and I did do my research with a few different surgeons in my area . I found a fine neurosurgeon at the U of W medical center/ Seattle. Yes it was scary but I was confident that this procedure would have the best outcome for my particular issue. It was quite complex @ 91/2 hours of surgery, my Trigeminal nerve was successfully decompressed. It was being strangled by several vessels and 7 Teflon pledgets were inserted to allow that nerve to do what it needed to do, unencumbered. Yes I would do it again if needed. As far as nausea is concerned, yes I did throw up once after the surgery and after that, I was given some anti nausea pills that stopped that in the tracks. Each fine hospital has a wonderful staff of nurses that will monitor you every minute while you are waiting for the surgery as well as post - operatively while you are made comfortable in the SICU wing. It's like having Mom right by your bedside caring for you. I had the MVD surgery May13th Friday and went home Sunday afternoon. I sent flowers to both my surgeon and team as well as the wonderful nurses in recovery. It was a excellent day all around for me. My very Best you and others contemplating this option. Do your research and pick a great surgeon that has done many successful procedures and a facility that has A+ rating nationwide.