My Neurosurgeon called me this morning…on a Saturday. He wanted to tell me about my MRI results. He said they were normal. He could not see an artery on the Trigeminal nerve…but that was not to say it wasn’t so…most cases he said you cannot see it until you go in. So now I really don’t know what to do about surgery. He said while he thought the MVD was the most permanent fix, he had no objection to me trying the balloon. Anybody had that? He was very nice, and I told him I just needed more time to mull this over…he said he understood and to call him with any questions I had.
Hi Mary,
May I ask, did your NS do a 3D Fiesta Thin-slice MRI with and without contrast? My neurologist did a regular MRI, and told me that it was 'clear', and showed no offending vessels, but he referred me to an NS anyway. It was only after the neurosurgeon did this special type of MRI that they did find them. The thin-slice MRI does "slices" which are much closer together, and therefore gives a better read. My artery (and veins) had been hiding "between the slices" all along. If you are mulling having the MVD, then it is worth it to double-check with your neurosurgeon about what type of MRI was done, and perhaps even request the thin-slice if it is available. I would think that this is a reasonable request from someone who needs to make a decision about brain surgery.
Best of luck, and please keep us posted on your decision.
Lily
Thanks for your response Lily. I don’t know if it was 3D, but I do know it was with contrast. Have you ever heard about the balloon? I feel totally confused now for sure as to what to do. I think I will call the place that did the MRI and ask them what kind it was.
Lily said:
Hi Mary,
May I ask, did your NS do a 3D Fiesta Thin-slice MRI with and without contrast? My neurologist did a regular MRI, and told me that it was 'clear', and showed no offending vessels, but he referred me to an NS anyway. It was only after the neurosurgeon did this special type of MRI that they did find them. The thin-slice MRI does "slices" which are much closer together, and therefore gives a better read. My artery (and veins) had been hiding "between the slices" all along. If you are mulling having the MVD, then it is worth it to double-check with your neurosurgeon about what type of MRI was done, and perhaps even request the thin-slice if it is available. I would think that this is a reasonable request from someone who needs to make a decision about brain surgery.
Best of luck, and please keep us posted on your decision.
Lily
Hi Mary, do not have any procedures before mvd, better results with no other procedure done prior. My
MRI didn’t show anything either, I had two arteries. I had mvd in august, I could not be happier. I am 44, and a friend if a friend had it at 62, seven years ago, and she walked
Me through. It sounds awful, but it really isn’t so bad. It’s a one on a scale of 1 to 10 for brain surgery. Please read “Striking Back” by Dr Ken Casey, and another author who
Had tn. don’t be afraid, trust. I was so scared too until I set it up, but your surgeon is most important. My surgeon has a 91 to 94 percent success. I would not go to s doctor who would
Do the balloon. Research is so important, be confident. So much new research. Go to fpa-support.org. Best wishes, janet
Thanks Janet…I really need to get that book. My surgeon is at Vanderbilt in Nashville…a very good hospital. He is not a big fan of the balloon, but he said all the others are useless…meaning the glycerol injections and even the gamma…he said he has had 90% results with MVD and there was a less than 1% chance of dying…I asked him that question cause I am scared to death. He said the balloon may cause some numbness, but if I did not want MVD that would be his second choice.
Janet L Ditslear said:
Hi Mary, do not have any procedures before mvd, better results with no other procedure done prior. My
MRI didn't show anything either, I had two arteries. I had mvd in august, I could not be happier. I am 44, and a friend if a friend had it at 62, seven years ago, and she walked
Me through. It sounds awful, but it really isn't so bad. It's a one on a scale of 1 to 10 for brain surgery. Please read "Striking Back" by Dr Ken Casey, and another author who
Had tn. don't be afraid, trust. I was so scared too until I set it up, but your surgeon is most important. My surgeon has a 91 to 94 percent success. I would not go to s doctor who would
Do the balloon. Research is so important, be confident. So much new research. Go to fpa-support.org. Best wishes, janet
Mary, sorry my writing was sketchy, but I was doing it via my phone, now I am home so I have more to add, mostly that there are so many conflicting reports. From what I understand, if you are in good health, MVD is the very best option with the best results that will last the longest. I would only consider other options if your health was compromised and surgery would be too risky. I am passionate about helping people get help for their TN. I do understand the anxiety before surgery. I had only had my tonsils out when I was eleven before my MVD. My husband is also a surgeon, and at first he didn’t want me to have surgery until after a few months when he realized that my options were limited. We felt extremely confident with our surgeon and if my TN came back tomorrow I would go back and have it done again. I didn’t have any complications, but I did allow myself to rest and recover. However, I was doing my normal things within five weeks. Although, four months out, I realized that I was a lot more tired than I thought I was! As far as the MRI goes, it doesn’t really matter. It’s there, whether it shows up or not, you know if you have TN. Seeing it on an MRI wouldn’t change the procedure. Like I mentioned before, the book is quite informative and encouraging. You are not alone in how you are feeling. Surgery is scary and there are risks. For myself, I felt that God was giving me a chance to be cured. I am so grateful.
Mary Miller said:
Thanks Janet..I really need to get that book. My surgeon is at Vanderbilt in Nashville..a very good hospital. He is not a big fan of the balloon, but he said all the others are useless...meaning the glycerol injections and even the gamma...he said he has had 90% results with MVD and there was a less than 1% chance of dying...I asked him that question cause I am scared to death. He said the balloon may cause some numbness, but if I did not want MVD that would be his second choice.
Janet L Ditslear said:
Hi Mary, do not have any procedures before mvd, better results with no other procedure done prior. My
MRI didn't show anything either, I had two arteries. I had mvd in august, I could not be happier. I am 44, and a friend if a friend had it at 62, seven years ago, and she walked
Me through. It sounds awful, but it really isn't so bad. It's a one on a scale of 1 to 10 for brain surgery. Please read "Striking Back" by Dr Ken Casey, and another author who
Had tn. don't be afraid, trust. I was so scared too until I set it up, but your surgeon is most important. My surgeon has a 91 to 94 percent success. I would not go to s doctor who would
Do the balloon. Research is so important, be confident. So much new research. Go to fpa-support.org. Best wishes, janet
Thanks so much Janet for your time in writing to me. I just seem to have the worst luck, I guess that is why I am so scared. I know in my heart I am going to have to do this. For one thing I am in the middle of trying to sell my house. My new house is not built yet…it will take about 4 months. So, if someone wants my house…I really won’t be in any position to move and all that goes with it if I have surgery now. I was thinking about waiting till all that was over, maybe another 6 months. The surgeon said that would be fine to wait that long if I could stand the pain. I hate to get it done, then someone wants my house and I don’t have it in me because I am trying to recuperate. The housing market is so bad that you have to really take it while you can get it. I am in fairly good health I guess…no real problems to speak of. I am going to order that book today…or maybe I will see if they have in at the Barnes and Noble here in Nashville. The Dr. that will be doing this is Dr. Neimat at Vanderbilt. He said he does about 5 or 6 a month and that it is more common than you think. Thanks so much for your help…I appreciate it more than you know…Mary
Mary,
Normally one advises another to have the procedure that helped him or her or advises one not to have the procedure if he or she had a bad outcome. So having said that, I lean towards the MVD. Mine was not considered a success but it has given me a lot of relief. I was almost non-functional before I had it. I had the thin slice and it was normal. But my neurosurgeon told me he was positive that he would find a compression based on my symptoms and he did. He also said he didn’t give credence to the MRIs. I also read that having a MVD earlier in the course of the condition has a statistically better outcome. But through this process I have learned that some MRI machines are better. I had another MRI in Oct and it was on a machine that was twice as powerful as any other MRI machines I’ve previously used. At that time it was the most powerful MRI machine in North Alabama. Mine was a thin slice as was the one I had prior to surgery. My surgeon recommended the MVD or GK but when I chose the MVD, he said I made the right choice. Every surgeon has his own opinion which is what makes this such a difficult choice. That was nice of your surgeon to call you on Saturday.
Liz
Mary the timing is definitely something that you want to think about. My advice is to make sure you have several weeks to recuperate after the surgery. Moving is stressful enough without worrying about recovery. If you have lots of help that would be great too. You’ll know what the answer is…it wouldn’t hurt to wait for good timing. For me, I have four children and my husband who is working all of the time, my parents happened to be home and could help me out. I think that helped me make my decision, plus I had to get off the medicines asap…I knew in a few weeks that the pain would come full force. How do you do with your medications? For me, they made me unable to function and caused my sodium levels to drop to dangerous levels, you know, I was one of the 5%. I didn’t really have a choice because the medications were not working for me. Trileptal was my dominant drug, and it was the one causing the sodium drop reaction. I only had a few weeks to decide. janet
Hello, Mary.
I also just got normal results to an MRI. I was relieved to find out that M.S. is not the culprit. From all I have heard, MVD is a gamble, and has had minimal success for Type II patients. At any rate, my Neuro referred me to a Migraine specialist, who also deals with Orofacial pain. She says that if I try two more medications with no success, then I will possibly be a surgical candidate.
I had hoped for a clear cut solution to the problem. We must persevere. What a challenge, right?
Hugs,
Stef
Hi Stef…you’re not kidding…a REAL challenge. I know I have type one…I just can’t muster up the backbone to get the surgery…but I have pain all day everyday…the only time I don’t have pain is if I don’t eat or talk. As soon as I move my mouth it is on. I know I can’t live like this…I am a vegetable from the meds and they don’t even help. Where can I find courage???
Stef said:
Hello, Mary.
I also just got normal results to an MRI. I was relieved to find out that M.S. is not the culprit. From all I have heard, MVD is a gamble, and has had minimal success for Type II patients. At any rate, my Neuro referred me to a Migraine specialist, who also deals with Orofacial pain. She says that if I try two more medications with no success, then I will possibly be a surgical candidate.
I had hoped for a clear cut solution to the problem. We must persevere. What a challenge, right?
Hugs,
Stef
Hi Mary and Stef, I wish I could encourage you both with the surgery. It sounds so much worse than what it really is…I mean, it IS brain surgery but the results can be a miracle with such high success rates. Pray for courage…I feel so normal and healthy, and life can be like that for you again too!
Mary Miller said:
Hi Stef...you're not kidding..a REAL challenge. I know I have type one...I just can't muster up the backbone to get the surgery...but I have pain all day everyday...the only time I don't have pain is if I don't eat or talk. As soon as I move my mouth it is on. I know I can't live like this...I am a vegetable from the meds and they don't even help. Where can I find courage??????
Stef said:
Hello, Mary.
I also just got normal results to an MRI. I was relieved to find out that M.S. is not the culprit. From all I have heard, MVD is a gamble, and has had minimal success for Type II patients. At any rate, my Neuro referred me to a Migraine specialist, who also deals with Orofacial pain. She says that if I try two more medications with no success, then I will possibly be a surgical candidate.
I had hoped for a clear cut solution to the problem. We must persevere. What a challenge, right?
Hugs,
Stef
Janet…I am not easily persuaded…but you have done it. I do have an appt. for a second opinion on the 24th…I think I will keep it just so I can ask more questions. But when that is over…I am calling Dr. Neimat at Vanderbilt and scheduling. I hope I will have strength and energy afterwards to pack and move if I sell my home. Thanks Janet…Mary
Mary, please, please call me if you need anything! I really mean it. The gal who walked me through it, I had never met her until after surgery but called her many times! I was so comfortable with my decision until the day before surgery and the surgeon told me I could try one other drug lyrica, or go ahead the next day with surgery. My husband, as I mentioned is also a surgeon, he also said, “honey, only you know your threshold.” During that moment I was hesitant, I called Judy and she said that I would not regret it and to move forward…and she understood what we tn patients go through. Well, I knew my threshold had been met, and I made the decision the night before to go ahead as planned and I have never turned back. Only you can make that decision, and it’s not an easy one to make. The next morning even though I was nervous, I felt comfortable with my decision. Medicine can help, but life is pretty great not being “stoned” most of the time. I had three neurologists tell me not to do surgery, my feeling on them is that they really don’t understand tn, they just want to push drugs. Scripture also helped me through. It’s a difficult decision, and that’s why I’m so passionate, I understand the pain and the “dopey” feeling of too many drugs. I remember Judy helping me and I’d like to help others. Best wishes! janet
Mary Miller said:
Janet...I am not easily persuaded...but you have done it. I do have an appt. for a second opinion on the 24th...I think I will keep it just so I can ask more questions. But when that is over...I am calling Dr. Neimat at Vanderbilt and scheduling. I hope I will have strength and energy afterwards to pack and move if I sell my home. Thanks Janet...Mary
HI Mary,
I had TN type 1 for eight years. Finally had the MVD in May 2009 and have been pain free since. I had two MRI's and neither showed any compression. In surgery they found two artery compressions and two vein compressions. My neurosurgeon said he was confident ,from my medical history, that he would find compression. I had to travel to the hospital inorder to have a surgeon with knowledge of TN and MVD. Their was not any in my area that I felt had done enough of these surgeries that I could feel comfortable. I was scared up to the morning of the surgery. I finally felt completely relaxed with my decision that morning at the hospital. I was totally ready to get rid of this pain and started looking forward to the next day when I really felt the pain would be gone. It was gone. It has stayed away, even though I know it can come back. I would do the MVD again if needed. I am no longer afraid of it. It is so worth having my life back.
So what I have to say to you is somewhere in yourself, find the courage. This can give you your life back.
Connie