Glad it helps. Please let me know if you have any questions that I can try and answer.
Kathy said:
Rick, thanks so much for sharing your experience! I love hearing all the details, it helps calm my fears a little.
Hey fellow rhode islander! Thank you so much for sharing your story. I’m in the process of a diagnosis for TN. I’m only 36 an I’m terrified that this condition could derail my chances at a full productive life. I’m glad to hear about your success with MVD. It gives me hope that I too can live a pain and drug free life. I hope it is a permanent solution for you. Thanks again for giving me hope!
-M
RI
lucky13 said:
Hey fellow rhode islander! Thank you so much for sharing your story. I'm in the process of a diagnosis for TN. I'm only 36 an I'm terrified that this condition could derail my chances at a full productive life. I'm glad to hear about your success with MVD. It gives me hope that I too can live a pain and drug free life. I hope it is a permanent solution for you. Thanks again for giving me hope!
-M
RIPlease contact me if you would like to converse.. Happy to help!
Hello Rick, I have MVD surgery scheduled for March 4th. I'm not only afraid of the surgery, but also of the outcome. It seems that others that have this surgery with good outcomes, have moved on with their lives and probably nno longer have the need for support. It's those people, like you, that we need the most though. I hope to be able to help others following my own surgery. However, for right now I need a positive person to help me through my own. I have all the "what ifs" that anyone going through surgery would have.
I am 56, and decided to take a pass on the gamma knife. It seems as though it's only good for up to 3 years, then repeat. I don't want to repeat any of this nightmare. It also seems as though, numbness is a huge factor following. My life has basically been put on hold for this year so far. It has gotten to where I cannot even talk without triggering pain, much less alot of the other triggers. Meds don't seem to be working, so I spend my life in bed alot. I don't want to go on disability and spend my life in bed.
Would you happen to know, if there is anyone that keeps track of the success and failure rates from this surgery? My surgeon feels as though it's the way everyone diagnosed with TN should be directed, that it's the only way to help TN.
I hope this finds, that you are still well with no side effects.
Hi Rick
Thank you for sharing your positive experience. I have been dealing with TN for a little over a year after after a filling replacement. I went through all of the usual dental and endodontic exams, PT and treatment with gabapentin. The medication has pretty much stopped working but I am unable to tolerate an increase. I’m a psychotherapist and the fog, short term memory loss and forgetting words is very disruptive to my work. The doctor didn’t start calling it trigeminal neuralgia until December last year. I had an mri and saw a neurosurgeon at Tufts on 2/5 who told me my options and I am supposed to start off by trying trileptal but I’m concerned about the worse side effects than gabapentin. Gamma knife and this ottomh are options but Dr Wu said he prefers to do those in older patients. I’m 42 so it was kind of nice to be called “young”. I’m scared about the recovery time for MVD but more so the procedure itself. My Maxillofacial doc made it sound like a sim
Oops. Hit wrong button.
Made it sound like a simple procedure but when Dr wu said I’d be in he hospital for 3-4 days, I looked it up and saw that it is basically brain surgery. I was referred to Tufts because of the gamma knife center but I’m thinking that I should try to get in with MGH. Do they really leave you with a titanium plate in your head? How soon were you able to return to work? His is weighing g very heavy on me because until now, I thought it was damage to the nerve that would eventually heal. Now that I know that surgery is the only way to treat the problem and not just the symptoms, I’m kind of freaking out.
Any particular neurologist you would recommend at MGH? I’m wondering if my Maxillofacial doc can refer me directly to a neurosurgeon at MGH since he is an MGH doc and I’ve already had an MRI. Any thoughts? Thanks in advance. Also, how are you feeling a year and a post-op?
I am doing well, now. I was unable to drive for 2 months. You will want to rest more for a few months, it is different for everyone. Yes it is brain surgery, you can look it up on youtube. I was not responding well to meds, nor the side effects. I have 3 kids to take care of! My goal was to be off all meds and now I am with the exception of magnesium 400mg qd that is a vitamin.
Christine T said:
Oops. Hit wrong button.
Made it sound like a simple procedure but when Dr wu said I'd be in he hospital for 3-4 days, I looked it up and saw that it is basically brain surgery. I was referred to Tufts because of the gamma knife center but I'm thinking that I should try to get in with MGH. Do they really leave you with a titanium plate in your head? How soon were you able to return to work? His is weighing g very heavy on me because until now, I thought it was damage to the nerve that would eventually heal. Now that I know that surgery is the only way to treat the problem and not just the symptoms, I'm kind of freaking out.
Any particular neurologist you would recommend at MGH? I'm wondering if my Maxillofacial doc can refer me directly to a neurosurgeon at MGH since he is an MGH doc and I've already had an MRI. Any thoughts? Thanks in advance. Also, how are you feeling a year and a post-op?
Hi,
I am pleased to say I am still pain free. I expect it to be a life long fix but of course that is not guaranteed. Then again tomorrow is promised to no man. No pain today.
I am not a fan of the nerve damaging procedures, ( GK, Rhizotomy) and the meds, for me and many others are / were incredibly debilitating. ( I am and have been off all TN meds since about a month after MVD))
Each case is different but I believe if at all possible MVD is the way to go. When successful ( 90%) it fixes the root problem. Domelover you will be fine. Message me if you want to converse further please.
Christine T....MGH.. for you. Premier facility that specializes in TN treatment.I recommend without reservation. The Pro's Pro's in my estimation, and many others.
Likewise message me to chat.
Good luck.. Keep the faith and know there is hope.
Rick
Rick
Not sure if you still read this site but thank you for sharing the positive experience. I am scheduled for my mvd on the 27th of this month. I needed to hear/read something positive. Again. Thank you
Hi Baba,
Yes I am still around. I am glad that my comments were a help to you. Know that by having MVD surgery you are giving yourself the best chance at relief. If I can help. please let me know.
Baba said:
Rick
Not sure if you still read this site but thank you for sharing the positive experience. I am scheduled for my mvd on the 27th of this month. I needed to hear/read something positive. Again. Thank you
Rick,
Thank you for the very well written account of your MVD surgery! I'm post-MVD 4/13/2015, and was searching for some basic recover times for MVD patients, when I stumbled upon your post. This would be an EXCELLENT post for the TN groups on FaceBook! There are many, who want to try everything else first, before the MVD. And, each of those other procedures damage the nerve, doesn't uncompress it! It's sad to see!
May I ask how you're doing now? How long post-op did you go back to work?
Thanks!
Ron
Hi Ron,
Thanks for your kind words regarding my account of my MVD surgery. First, how are you? I hope that your surgery eliminated the TN.
I will have my 3rd "Birthday" in a little over a month. I am fine with no after effects except the desired one. I am pain free and medicine free.
I was back to work in about 3 weeks time and off the meds totally in about 4 weeks total. One thing I have learned is that each case and recovery time shares similarities but are also unique. People need to take the time THEY need.
I am of the feeling that the sooner one has MVD ( if appropriate) to CORRECT, not mask, the affliction, the better.
For me the Meds were too debilitating and if I had to remain on them I would be disabled. MVD gave me my life back. I hope it has done the same for you.
Please let me know if I can answer any questions or assist in any way
Best wishes for good health
Rick
Sorry to say, but I haven't been following online here, as much as I should be. I've been so busy living my life again and I must say that without having had the MVD surgery March 4, 2014 - I'd still be a couch potato, since the TN and all the drugs wouldn't have allowed me to do anything else.
Having been unemployed and working temporary jobs, I was without Health Insurance for quite some time. I for one, will be forever grateful that the "Obamacare" came along. I did not qualify for Medicaid being I am a woman, have no children , nor pregnant. I was finally approved and therefore was able to have this surgery.
If anyone out here, is having doubts about having a MVD because brain surgery is a scarey thought - it is...however, it was a piece of cake (so to speak) when compared to trying to survive living with the TN pain.
The only side effect that I still feel occasionally, is when coughing hard. I get a very slight twinge within the surgical sight. Not a big deal at all. I still am hesitant about being out for a long time in the wind, or wiping the right side of my face rather than patting it - but that's because it all became such a habit, knowing that it would have set off all those triggers.
When people ask how I'm doing - I am great! I wouldn't wish this pain on the worst person on the planet.
I, of course hopes that this surgery lasts for the rest of my life - but if I feel the slightest hint of TN pain ever again - I will make my wonderful neurosurgeon the first person to call.
My MVD stories are mixed. First MVD I ended up with a CSF leak out my right nostril, and a total bowel impaction. I spent 16 days in the hospital, 6 of them with a lumbar drain in my back. It took close to a year for the nerve to heal.
2nd MVD four years later went much smoother. CSF leaks out of the nose are surgery complications that not only will not go away, with repeat surgery will actually get worse, so the lumbar drain was put into my back, while I was still in the OR. I was started right away on a bowel regimen to prevent the impaction. Nothing like drinking Mira Lax mixed in warm prune juice four times a day, for five days. The goal of the surgery this time was to lessen to the pain to the eye. If you totally numb the pain to the eye, you put your eye sight at risk, as you numb by the cornea, and the tear ducts stop working. I can say the goal in this case was met, though I still get pain attacks to the eye, they were not as bad as they were.
I do not regret either one of my surgeries. I as well know my story is not the norm, as most are very routine. I do though tell my story as a cautionary tale. My TN was caused by a congenital birth defect. I have thicker than normal skull plates. It was bone at the base of my skull that was pressing on the nerve, and the neurosurgeon had to drill off a lot of bone, and that is what is believed to have caused the CSF leak to exit through my nose. while most often CSF leaks will leak through the incision. Thing is the neurosurgeon did not know what the true problem was, until he was on top of it, in the OR. That sometimes happens.
I am better off for having the surgeries done. While my surgery path may have not gone as smooth as I would have wished, I have no regrets!
This seems to be a very informative and positive thread. I would add just a few footnotes, if I may. MVD by an experienced surgical team can be successful about 90% of the time with typical TN, though somewhat less than 50% of the time when pain is dominated by atypical TN symptoms (constant burning, throbbing pain). Peter Janetta's articles in New England Medical Journal report pain relief statistics of about 70% after 12 years, again with typical TN. MVD can be performed again in many of the patients where pain recurs, and is often successful the second time also.
At present, MVD is the closest thing we have to a "gold standard of care" for typical TN. Over time, the roles and effectiveness of surgically implanted peripheral nerve stimulators may gain in reliability.
Again, thanks for posting, Rick.
Regards and best,
Red Lawhern, Ph.D.
Resident Research Analyst and Moderator, LWTN
Hi Red,
Thanks for your comments and for all you do to help others.
Best
Rick
Richard A. "Red" Lawhern said:
This seems to be a very informative and positive thread. I would add just a few footnotes, if I may. MVD by an experienced surgical team can be successful about 90% of the time with typical TN, though somewhat less than 50% of the time when pain is dominated by atypical TN symptoms (constant burning, throbbing pain). Peter Janetta's articles in New England Medical Journal report pain relief statistics of about 70% after 12 years, again with typical TN. MVD can be performed again in many of the patients where pain recurs, and is often successful the second time also.
At present, MVD is the closest thing we have to a "gold standard of care" for typical TN. Over time, the roles and effectiveness of surgically implanted peripheral nerve stimulators may gain in reliability.
Again, thanks for posting, Rick.
Regards and best,Red Lawhern, Ph.D.
Resident Research Analyst and Moderator, LWTN
Rick,
Glad to hear you're still on this site, and that you're doing well 3 years post-surgery. I am scheduled for MVD in 2 days (Nov 10th!) and have been hesitant to read comments and stories on the site in general, because a majority of them are very negative (understandably - as you said, many people move on after they become pain free.)
I think I am most nervous about how I'm going to be feeling immediately post-surgery in the ICU. I've read such horror stories (my husband says "STOP reading!!) I was happy to see that your recovery was not that difficult. I know everyone is different, but I hope my outcome is similar.
My symptoms only started in June of this year, and I was diagnosed at the end of July. I can't tolerate the meds at all, and have been in brain fog for months (and that's the least of my side effects!) It was an easy decision for me to have the surgery (and from what I've been told and read, the earlier in your diagnosis that you have the surgery, the better the outcome.) My surgeon does about 50 MVDs a year, so I am confident in his ability.
Like everyone else here said, thanks for posting Rick. It's encouraging, when I need it the most.
[deep breath] Well, here goes nothin'!
Barbara
Barbara, I, too, am 3 years post MVD. I had it done when I was 68 and the outcome was excellent. I had the craniotomy on Thursday & was discharged on Saturday. I went in with a very positive attitude & with full confidence in my surgeon Dr.Ben Carson & in the facility, John’s Hopkins. I have been pain free & off all medications. I wish you strength as you move forward & get your life back–YOU WILL!
Barbara said:
Rick,
Glad to hear you’re still on this site, and that you’re doing well 3 years post-surgery. I am scheduled for MVD in 2 days (Nov 10th!) and have been hesitant to read comments and stories on the site in general, because a majority of them are very negative (understandably - as you said, many people move on after they become pain free.)
I think I am most nervous about how I’m going to be feeling immediately post-surgery in the ICU. I’ve read such horror stories (my husband says "STOP reading!!) I was happy to see that your recovery was not that difficult. I know everyone is different, but I hope my outcome is similar.
My symptoms only started in June of this year, and I was diagnosed at the end of July. I can’t tolerate the meds at all, and have been in brain fog for months (and that’s the least of my side effects!) It was an easy decision for me to have the surgery (and from what I’ve been told and read, the earlier in your diagnosis that you have the surgery, the better the outcome.) My surgeon does about 50 MVDs a year, so I am confident in his ability.
Like everyone else here said, thanks for posting Rick. It’s encouraging, when I need it the most.
[deep breath] Well, here goes nothin’!
Barbara
Barbara,
Good luck to you!! I also have had very positive results from my MVD 2 years ago. I also couldn’t handle being on the medication and had surgery within a year of getting a correct diagnosis. You will love having your life back. I tried to focus on the big picture and not get too focused on the surgery and the recovery because that is such a small fraction of time compared to your life ahead! Will be praying for you, let us know how you are doing:)