The surgery was a success! I only spent one day in the hospital. The operation was June 16th, I came home on June 17th. My only regret is that I didn't have this done years ago. Even though it has been only two days, I am already in less pain than I was BEFORE the operation! When I woke up, the first thing I did was push on my trigger points... no pain!!! I can drink cold drinks, I can chew on ice, I can wear sunglasses... all things that caused horrendous pain. I am one of those who had two normal MRI's and Neurologists who insisted that I didn't really have TN. Thankfully, I found Dr. Mastrodimos and Dr. Cueva who have done 100's of MVD's. They're experience has been if a patient has trigger points and severe pain brought on by breezes or slight touch, they find a compression. Even though there was nothing visible on the MRI, they found an artery compressing the trigeminal nerve and also scarred arachinoid tissue compressing the nerve. I'm having trouble with double vision, but otherwise doing well. Really tired though, think I'll go back to bed now. I just wanted to share my good news and bring some hope to my fellow "neuralgians".
You did it ! It is a great photo as well…I will be having the same stitches come July 16…I don’t know Dr. Mastrodimos …Im wondering if you know of Dr. Kenneth Ott in San Diego? Sleep well and thanks for all the info…
Vic in San Diego
I am glad you are feeling relief. Did you ever have problems with some patting you on your back? I had a terrible shocking pain from that and also when I am chopping vegetables(mushrooms) on a cutting board I get a pain. Sounds weird. Breezes or talking alot mainly brings it on for me. I get constant tingling hot and cold feeling in my face. I answer phones at work and sometimes am in a breeze. At the end of work I can’t even talk! I take teregretol 400mg/3x a day. And gabepentin 300mg also a night. I am not sure if I am going to be able to continue working. The neuro. suggested Botox injections? Any suggestions from anyone would be great, I am going crazy.
Hi Suzanne
Awsome news!!I’m very happy for you.Hope things continue to get better.Rest lots.
Brian 
So happy for you!!!
Hi Jackie,
I saw your response that you had an mri and they saw no visible blood vessels and was refused surgery. If you need help I had 2 MRI’s that came back normal but had my MVD last May. Guess what I had a vein wrapped around starting from the entry point of the Meckels Cave to the end of the nerve and also an artery loop compressing the nerve. I will be happy to provided the MRI report and the surgery report if it will help you get the answers you need! Best wishes
Jess
Jackie said:
Wow, well done you, I am hoping for surgery and thought I would be refused as I have no visible blood vessel near by but I am going to print this off and take it with me in 2 weeks when I go see my nuerologist. Thanks for the info.
Well done you for recovering so well, it takes a strong mind to cope with what you have had, here’s hoping for pain free for you soon. JC
I don’t know how you do it! Having to talk on the phone can be torture, especially with a breeze on top of that. I’m sure no one around can imagine how miserable you feel (except us!). I didn’t have sensation from a pat on the back, but sounds could set me off. Loud, sharp noises and the ubiquitous screaming child at Walmart are guaranteed agony. There is ALWAYS a screaming child at Walmart… and they always end up right behind me in line!
I have heard of using Botox for this, but never tried it. The downside would be that it’s temporary, but if it works it would be a lot less invasive than surgery and probably wouldn’t require time off. I am very happy with my surgery, but I am lucky in that I can take all the time I need to recover. I went outside yesterday and let the wind hit my face and marveled at how it DIDN’T hurt! I can’t wait until I feel stronger, I have so many outdoor projects I want to do that I couldn’t do before.
If you are able to take off a month from work, I’d look into having MVD surgery. We are fortunate to live in these times, new treatments become available all the time. I hope you find the help you need
Kristin Forrester said:
I am glad you are feeling relief. Did you ever have problems with some patting you on your back? I had a terrible shocking pain from that and also when I am chopping vegetables(mushrooms) on a cutting board I get a pain. Sounds weird. Breezes or talking alot mainly brings it on for me. I get constant tingling hot and cold feeling in my face. I answer phones at work and sometimes am in a breeze. At the end of work I can’t even talk! I take teregretol 400mg/3x a day. And gabepentin 300mg also a night. I am not sure if I am going to be able to continue working. The neuro. suggested Botox injections? Any suggestions from anyone would be great, I am going crazy.
wow, i am so happy to hear about your positive response to sx. gives me hope. wishing you safe and speedy recovery.
Suzanne,
That is wonderful. I am so glad the surgery worked. And only one day in the hospital, that is good. I spent two and I thought I had done well. I am praying you will continue to have no pain and the double vision will get better. Please keep us posted. Take care and rest.
Liz
Thank you, it bring so much happines to my heart when i hear someone has had a good outcome. I wish you good luck and ask that you keep checking in so people can read of your experience and not give up hope. God Bless You! Spread your wings and flyyyyyyyyyyyyy.
Tomorrow it will be one month since my surgery. I know every case is different, but I feel compelled to share my experience because I’m certain there are others who have been told that surgery isn’t an option because the MRI showed “nothing out of the ordinary”. I’ve had this insane pain for over 6 years, I was told time and time again that I wasn’t a candidate for any kind of procedure, and at times treated like I had mental issues. One month after having a hole drilled into my head and some stuffing pushed in, and I am feeling better than I have in years!
YOU know what this insidious disease feels like, and why it is called the “suicide disease”. Unfortunately, your neurologist doesn’t know the Hell you are going through, unless they’ve experienced it themselves. TN is rare enough that even a specialist may only encounter a few cases in their career (if any). I can understand why doctors want to take a conservative approach when it comes to surgical procedures. But, I was quite literally at the point where I wished I could just die. I finally begged my primary physician for a referral to a good neurosurgeon who had a lot of experience treating TN. It was a few months before I could get an appointment, but that day came and I finally met doctors who not only understood the level of pain I was experiencing, but could offer hope! They explained all the options, and spent quite a bit of time explaining each procedure and answering all my questions. I chose the microvascular decompression surgery because it seems to have the greatest long-term success. Yes, it is the most invasive and drastic procedure, but it isn’t a destructive procedure. I was afraid of any procedure that might relieve pain by destroying the nerve. I have read about cases where the pain only became worse. My surgeons explained the risks of having MVD surgery… loss of hearing and possible death among other things… Death was already an option I was pondering … so for me, the possibility of even reducing pain made this a risk worth taking.
Yes, this is major surgery and not to be taken lightly. I drove today for the first time since the surgery, I’m not 100% yet and wouldn’t want to drive on the highway , but I haven’t had ANY TN pain since my surgery!! I’ve had some double-vision issues, but that has almost completely resolved. I get tired easily, but that is getting better day by day. I know I am going to have a life again.
I certainly don’t want to give anyone false hope. My experience may be a fluke, I don’t know. I just know that for years I accepted what the neurologists told me… that I had “atypical” TN and that surgery was not an option. I wish I knew then what I know now. For over 6 years, I have endured awful pain on a daily basis. As of June 16th, I have been free of that agony, even though I was told by several experts that surgery couldn’t help me. If any part of my experience rings a bell, then you owe it to yourself to explore your options. When you encounter that doctor who doesn’t believe your pain could possibly be all that bad… move along! You deserve better.
Suzanne
Firstly it is fantastic to hear you are pain free it gives all of us hope. Secondly thank you for such a detailed account straight after your surgery and your latest account a month later. Do keep us updated as to your progress.
Good luck
Ajay
Suzanne,
That is wonderful news. You still don’t have pain and your vision is getting better. I am happy for you.
Liz
Hi Suzanne,
Congratulations! Thank you so much for sharing a happy story. May your healing continue. bob
Thank you so much Suzanne for your inspiring story! So glad to hear you are pain free and your double vision is going away. You give me much hope as after my visit with my neurosurgeon on Thursday they are scheduling my MVD procedure for the 2nd week of August. (He also upped my Gabapentin to help with pain until the surgery.) I am very fortunate as I have only been suffering from this for a year; and the pain has only been intense since since late winter. The surgeon and his PA were wonderful to us (even though the appointment took a very long time) it was worth it. It certainly was intimidating being in the cancer center at the HUGE Wake Forest Baptist Medical Center (that is where the neurology department is) but everyone made me feel very comfortable. The PA interviewed me - all my symptoms - my history with all the dentists - did a nero exam and gave us pamplets for the GAMMA KNIFE and MVD. Dr. Tatter came in. Immediately he was comforting, informative and most importantly EXPERIENCED WITH TN. He had reviewed my MRI and my symptoms and was sympathetic to my situation. Although my husband and I had researched all the different possible procedures and after I had combed this site for all the information I could gather and we had settled on MVD if is was possible, after talking with him and hearing all the statistics we KNEW MVD was the way to go. I write this to let anyone that hasn’t had this brilliant surgeon explain all the options to them - they may benefit from this information. The success rate for MVD (success is defined by NO PAIN AND NO MEDICATION) [ they have done many, many studies and surveys with all their TN patients] is 90% and that is for 20 years. After 20 years the success rate is 70% (that means that after 20 years 30% of MVD patients the TN comes back.) 20 YEARS WOW! The success rate for the Gamma Knife procedure (success is defined as reduced pain by 1\2 [but it may take 6-8 weeks to feel any relief] and may or may not require medication) is 70%. After 2-5 years 90 % of patients have the full TN pain come back and will need another procedure.) He suggested MVD for me because of my age (if I had been 20-30 years older he would have suggested the Gamma Knife as it is much less invasive and risky) and he thinks the artery is continuously “bumping” up against the nerve and has caused damage to the nerve. Like you, the MRI did not show too much out of the ordinary until a trained surgeon viewed it. I urge anyone who suffers from this terrible disorder to find a trained surgeon and get some help. I felel blessed to have a neurologist who knew about this dredful TN and he referred me to this particular surgeon. I feel so hopeful reading your story and cannot thank you enough for sharing. I only hope that my story will be the same after my surgery. I have run on and on but I hope my experience with the “first visit” with the surgeon and all the information I got and shared may be helpful to even one person up here. Here is hope for pain free days for all of us!
I LOVE Dr Tatter! He did Gamma Knife on me 8 days ago! My experience was exactly like yours only they felt Gamma was a better option for me beacsue of a lesion on my brain stem. I immediately trusted Dr Tatter and his entire team. I loved that fact they he truly seemed to understand my pain. He was so confident that he could help me after a surgeon in Greenville had told me there was nothing he could do and I should learn to live with the pain! I am so glad for Dr. John Gibbs. He would not stop until he found the best doctor for me. I am so glad that you also had this wonderful man take care of you!!!
Betsy Harrell said:
Thank you so much Suzanne for your inspiring story! So glad to hear you are pain free and your double vision is going away. You give me much hope as after my visit with my neurosurgeon on Thursday they are scheduling my MVD procedure for the 2nd week of August. (He also upped my Gabapentin to help with pain until the surgery.) I am very fortunate as I have only been suffering from this for a year; and the pain has only been intense since since late winter. The surgeon and his PA were wonderful to us (even though the appointment took a very long time) it was worth it. It certainly was intimidating being in the cancer center at the HUGE Wake Forest Baptist Medical Center (that is where the neurology department is) but everyone made me feel very comfortable. The PA interviewed me - all my symptoms - my history with all the dentists - did a nero exam and gave us pamplets for the GAMMA KNIFE and MVD. Dr. Tatter came in. Immediately he was comforting, informative and most importantly EXPERIENCED WITH TN. He had reviewed my MRI and my symptoms and was sympathetic to my situation. Although my husband and I had researched all the different possible procedures and after I had combed this site for all the information I could gather and we had settled on MVD if is was possible, after talking with him and hearing all the statistics we KNEW MVD was the way to go. I write this to let anyone that hasn’t had this brilliant surgeon explain all the options to them - they may benefit from this information. The success rate for MVD (success is defined by NO PAIN AND NO MEDICATION) [ they have done many, many studies and surveys with all their TN patients] is 90% and that is for 20 years. After 20 years the success rate is 70% (that means that after 20 years 30% of MVD patients the TN comes back.) 20 YEARS WOW! The success rate for the Gamma Knife procedure (success is defined as reduced pain by 1\2 [but it may take 6-8 weeks to feel any relief] and may or may not require medication) is 70%. After 2-5 years 90 % of patients have the full TN pain come back and will need another procedure.) He suggested MVD for me because of my age (if I had been 20-30 years older he would have suggested the Gamma Knife as it is much less invasive and risky) and he thinks the artery is continuously “bumping” up against the nerve and has caused damage to the nerve. Like you, the MRI did not show too much out of the ordinary until a trained surgeon viewed it. I urge anyone who suffers from this terrible disorder to find a trained surgeon and get some help. I felel blessed to have a neurologist who knew about this dredful TN and he referred me to this particular surgeon. I feel so hopeful reading your story and cannot thank you enough for sharing. I only hope that my story will be the same after my surgery. I have run on and on but I hope my experience with the “first visit” with the surgeon and all the information I got and shared may be helpful to even one person up here. Here is hope for pain free days for all of us!
Hi Sharon, It is great to hear that the wonderful Dr. Tatter helped you and chose the best surgery option for you. It gives me tremendous hope for my outcome after my MVD. I don’t know what I would have done without Dr. Gibbs. He was sympathetic and “on the ball.” It pains me to read about the folks up here who are suffering and don’t have access to the same resources we have. I wish I could move them all here and line them up with appointments with Dr. Gibbs and Dr. Tatter. My prayers go out to all of them. I hope you have continued success and a Pain Free Forever after the Gamma Knife. Betsy
Sharon Bryant said:
I LOVE Dr Tatter! He did Gamma Knife on me 8 days ago! My experience was exactly like yours only they felt Gamma was a better option for me beacsue of a lesion on my brain stem. I immediately trusted Dr Tatter and his entire team. I loved that fact they he truly seemed to understand my pain. He was so confident that he could help me after a surgeon in Greenville had told me there was nothing he could do and I should learn to live with the pain! I am so glad for Dr. John Gibbs. He would not stop until he found the best doctor for me. I am so glad that you also had this wonderful man take care of you!!!
Betsy Harrell said:Thank you so much Suzanne for your inspiring story! So glad to hear you are pain free and your double vision is going away. You give me much hope as after my visit with my neurosurgeon on Thursday they are scheduling my MVD procedure for the 2nd week of August. (He also upped my Gabapentin to help with pain until the surgery.) I am very fortunate as I have only been suffering from this for a year; and the pain has only been intense since since late winter. The surgeon and his PA were wonderful to us (even though the appointment took a very long time) it was worth it. It certainly was intimidating being in the cancer center at the HUGE Wake Forest Baptist Medical Center (that is where the neurology department is) but everyone made me feel very comfortable. The PA interviewed me - all my symptoms - my history with all the dentists - did a nero exam and gave us pamplets for the GAMMA KNIFE and MVD. Dr. Tatter came in. Immediately he was comforting, informative and most importantly EXPERIENCED WITH TN. He had reviewed my MRI and my symptoms and was sympathetic to my situation. Although my husband and I had researched all the different possible procedures and after I had combed this site for all the information I could gather and we had settled on MVD if is was possible, after talking with him and hearing all the statistics we KNEW MVD was the way to go. I write this to let anyone that hasn’t had this brilliant surgeon explain all the options to them - they may benefit from this information. The success rate for MVD (success is defined by NO PAIN AND NO MEDICATION) [ they have done many, many studies and surveys with all their TN patients] is 90% and that is for 20 years. After 20 years the success rate is 70% (that means that after 20 years 30% of MVD patients the TN comes back.) 20 YEARS WOW! The success rate for the Gamma Knife procedure (success is defined as reduced pain by 1\2 [but it may take 6-8 weeks to feel any relief] and may or may not require medication) is 70%. After 2-5 years 90 % of patients have the full TN pain come back and will need another procedure.) He suggested MVD for me because of my age (if I had been 20-30 years older he would have suggested the Gamma Knife as it is much less invasive and risky) and he thinks the artery is continuously “bumping” up against the nerve and has caused damage to the nerve. Like you, the MRI did not show too much out of the ordinary until a trained surgeon viewed it. I urge anyone who suffers from this terrible disorder to find a trained surgeon and get some help. I felel blessed to have a neurologist who knew about this dredful TN and he referred me to this particular surgeon. I feel so hopeful reading your story and cannot thank you enough for sharing. I only hope that my story will be the same after my surgery. I have run on and on but I hope my experience with the “first visit” with the surgeon and all the information I got and shared may be helpful to even one person up here. Here is hope for pain free days for all of us!
What state do Dr. Gibbs and Dr. Tatter practice in? They sound wonderful. Bedside manner is SO important. My surgeon had ZIP of that.
Betsy Harrell said:
Hi Sharon, It is great to hear that the wonderful Dr. Tatter helped you and chose the best surgery option for you. It gives me tremendous hope for my outcome after my MVD. I don’t know what I would have done without Dr. Gibbs. He was sympathetic and “on the ball.” It pains me to read about the folks up here who are suffering and don’t have access to the same resources we have. I wish I could move them all here and line them up with appointments with Dr. Gibbs and Dr. Tatter. My prayers go out to all of them. I hope you have continued success and a Pain Free Forever after the Gamma Knife. Betsy
Sharon Bryant said:I LOVE Dr Tatter! He did Gamma Knife on me 8 days ago! My experience was exactly like yours only they felt Gamma was a better option for me beacsue of a lesion on my brain stem. I immediately trusted Dr Tatter and his entire team. I loved that fact they he truly seemed to understand my pain. He was so confident that he could help me after a surgeon in Greenville had told me there was nothing he could do and I should learn to live with the pain! I am so glad for Dr. John Gibbs. He would not stop until he found the best doctor for me. I am so glad that you also had this wonderful man take care of you!!!
Betsy Harrell said:Thank you so much Suzanne for your inspiring story! So glad to hear you are pain free and your double vision is going away. You give me much hope as after my visit with my neurosurgeon on Thursday they are scheduling my MVD procedure for the 2nd week of August. (He also upped my Gabapentin to help with pain until the surgery.) I am very fortunate as I have only been suffering from this for a year; and the pain has only been intense since since late winter. The surgeon and his PA were wonderful to us (even though the appointment took a very long time) it was worth it. It certainly was intimidating being in the cancer center at the HUGE Wake Forest Baptist Medical Center (that is where the neurology department is) but everyone made me feel very comfortable. The PA interviewed me - all my symptoms - my history with all the dentists - did a nero exam and gave us pamplets for the GAMMA KNIFE and MVD. Dr. Tatter came in. Immediately he was comforting, informative and most importantly EXPERIENCED WITH TN. He had reviewed my MRI and my symptoms and was sympathetic to my situation. Although my husband and I had researched all the different possible procedures and after I had combed this site for all the information I could gather and we had settled on MVD if is was possible, after talking with him and hearing all the statistics we KNEW MVD was the way to go. I write this to let anyone that hasn’t had this brilliant surgeon explain all the options to them - they may benefit from this information. The success rate for MVD (success is defined by NO PAIN AND NO MEDICATION) [ they have done many, many studies and surveys with all their TN patients] is 90% and that is for 20 years. After 20 years the success rate is 70% (that means that after 20 years 30% of MVD patients the TN comes back.) 20 YEARS WOW! The success rate for the Gamma Knife procedure (success is defined as reduced pain by 1\2 [but it may take 6-8 weeks to feel any relief] and may or may not require medication) is 70%. After 2-5 years 90 % of patients have the full TN pain come back and will need another procedure.) He suggested MVD for me because of my age (if I had been 20-30 years older he would have suggested the Gamma Knife as it is much less invasive and risky) and he thinks the artery is continuously “bumping” up against the nerve and has caused damage to the nerve. Like you, the MRI did not show too much out of the ordinary until a trained surgeon viewed it. I urge anyone who suffers from this terrible disorder to find a trained surgeon and get some help. I felel blessed to have a neurologist who knew about this dredful TN and he referred me to this particular surgeon. I feel so hopeful reading your story and cannot thank you enough for sharing. I only hope that my story will be the same after my surgery. I have run on and on but I hope my experience with the “first visit” with the surgeon and all the information I got and shared may be helpful to even one person up here. Here is hope for pain free days for all of us!
Hi Jamie Leigh! Dr John Gibbs is in Greenville, Nc and Dr Stephen Tatter is in Winston Salem, NC. They are absolutely the BEST with TN patients.
jamie leigh said:
What state do Dr. Gibbs and Dr. Tatter practice in? They sound wonderful. Bedside manner is SO important. My surgeon had ZIP of that.
Betsy Harrell said:Hi Sharon, It is great to hear that the wonderful Dr. Tatter helped you and chose the best surgery option for you. It gives me tremendous hope for my outcome after my MVD. I don’t know what I would have done without Dr. Gibbs. He was sympathetic and “on the ball.” It pains me to read about the folks up here who are suffering and don’t have access to the same resources we have. I wish I could move them all here and line them up with appointments with Dr. Gibbs and Dr. Tatter. My prayers go out to all of them. I hope you have continued success and a Pain Free Forever after the Gamma Knife. Betsy
Sharon Bryant said:I LOVE Dr Tatter! He did Gamma Knife on me 8 days ago! My experience was exactly like yours only they felt Gamma was a better option for me beacsue of a lesion on my brain stem. I immediately trusted Dr Tatter and his entire team. I loved that fact they he truly seemed to understand my pain. He was so confident that he could help me after a surgeon in Greenville had told me there was nothing he could do and I should learn to live with the pain! I am so glad for Dr. John Gibbs. He would not stop until he found the best doctor for me. I am so glad that you also had this wonderful man take care of you!!!
Betsy Harrell said:Thank you so much Suzanne for your inspiring story! So glad to hear you are pain free and your double vision is going away. You give me much hope as after my visit with my neurosurgeon on Thursday they are scheduling my MVD procedure for the 2nd week of August. (He also upped my Gabapentin to help with pain until the surgery.) I am very fortunate as I have only been suffering from this for a year; and the pain has only been intense since since late winter. The surgeon and his PA were wonderful to us (even though the appointment took a very long time) it was worth it. It certainly was intimidating being in the cancer center at the HUGE Wake Forest Baptist Medical Center (that is where the neurology department is) but everyone made me feel very comfortable. The PA interviewed me - all my symptoms - my history with all the dentists - did a nero exam and gave us pamplets for the GAMMA KNIFE and MVD. Dr. Tatter came in. Immediately he was comforting, informative and most importantly EXPERIENCED WITH TN. He had reviewed my MRI and my symptoms and was sympathetic to my situation. Although my husband and I had researched all the different possible procedures and after I had combed this site for all the information I could gather and we had settled on MVD if is was possible, after talking with him and hearing all the statistics we KNEW MVD was the way to go. I write this to let anyone that hasn’t had this brilliant surgeon explain all the options to them - they may benefit from this information. The success rate for MVD (success is defined by NO PAIN AND NO MEDICATION) [ they have done many, many studies and surveys with all their TN patients] is 90% and that is for 20 years. After 20 years the success rate is 70% (that means that after 20 years 30% of MVD patients the TN comes back.) 20 YEARS WOW! The success rate for the Gamma Knife procedure (success is defined as reduced pain by 1\2 [but it may take 6-8 weeks to feel any relief] and may or may not require medication) is 70%. After 2-5 years 90 % of patients have the full TN pain come back and will need another procedure.) He suggested MVD for me because of my age (if I had been 20-30 years older he would have suggested the Gamma Knife as it is much less invasive and risky) and he thinks the artery is continuously “bumping” up against the nerve and has caused damage to the nerve. Like you, the MRI did not show too much out of the ordinary until a trained surgeon viewed it. I urge anyone who suffers from this terrible disorder to find a trained surgeon and get some help. I felel blessed to have a neurologist who knew about this dredful TN and he referred me to this particular surgeon. I feel so hopeful reading your story and cannot thank you enough for sharing. I only hope that my story will be the same after my surgery. I have run on and on but I hope my experience with the “first visit” with the surgeon and all the information I got and shared may be helpful to even one person up here. Here is hope for pain free days for all of us!
Finding doctors who sympathize with our condition is a god sent. I wish that for all of us!
Sharon Bryant said:
Hi Jamie Leigh! Dr John Gibbs is in Greenville, Nc and Dr Stephen Tatter is in Winston Salem, NC. They are absolutely the BEST with TN patients.
jamie leigh said:What state do Dr. Gibbs and Dr. Tatter practice in? They sound wonderful. Bedside manner is SO important. My surgeon had ZIP of that.
Betsy Harrell said:Hi Sharon, It is great to hear that the wonderful Dr. Tatter helped you and chose the best surgery option for you. It gives me tremendous hope for my outcome after my MVD. I don’t know what I would have done without Dr. Gibbs. He was sympathetic and “on the ball.” It pains me to read about the folks up here who are suffering and don’t have access to the same resources we have. I wish I could move them all here and line them up with appointments with Dr. Gibbs and Dr. Tatter. My prayers go out to all of them. I hope you have continued success and a Pain Free Forever after the Gamma Knife. Betsy
Sharon Bryant said:I LOVE Dr Tatter! He did Gamma Knife on me 8 days ago! My experience was exactly like yours only they felt Gamma was a better option for me beacsue of a lesion on my brain stem. I immediately trusted Dr Tatter and his entire team. I loved that fact they he truly seemed to understand my pain. He was so confident that he could help me after a surgeon in Greenville had told me there was nothing he could do and I should learn to live with the pain! I am so glad for Dr. John Gibbs. He would not stop until he found the best doctor for me. I am so glad that you also had this wonderful man take care of you!!!
Betsy Harrell said:Thank you so much Suzanne for your inspiring story! So glad to hear you are pain free and your double vision is going away. You give me much hope as after my visit with my neurosurgeon on Thursday they are scheduling my MVD procedure for the 2nd week of August. (He also upped my Gabapentin to help with pain until the surgery.) I am very fortunate as I have only been suffering from this for a year; and the pain has only been intense since since late winter. The surgeon and his PA were wonderful to us (even though the appointment took a very long time) it was worth it. It certainly was intimidating being in the cancer center at the HUGE Wake Forest Baptist Medical Center (that is where the neurology department is) but everyone made me feel very comfortable. The PA interviewed me - all my symptoms - my history with all the dentists - did a nero exam and gave us pamplets for the GAMMA KNIFE and MVD. Dr. Tatter came in. Immediately he was comforting, informative and most importantly EXPERIENCED WITH TN. He had reviewed my MRI and my symptoms and was sympathetic to my situation. Although my husband and I had researched all the different possible procedures and after I had combed this site for all the information I could gather and we had settled on MVD if is was possible, after talking with him and hearing all the statistics we KNEW MVD was the way to go. I write this to let anyone that hasn’t had this brilliant surgeon explain all the options to them - they may benefit from this information. The success rate for MVD (success is defined by NO PAIN AND NO MEDICATION) [ they have done many, many studies and surveys with all their TN patients] is 90% and that is for 20 years. After 20 years the success rate is 70% (that means that after 20 years 30% of MVD patients the TN comes back.) 20 YEARS WOW! The success rate for the Gamma Knife procedure (success is defined as reduced pain by 1\2 [but it may take 6-8 weeks to feel any relief] and may or may not require medication) is 70%. After 2-5 years 90 % of patients have the full TN pain come back and will need another procedure.) He suggested MVD for me because of my age (if I had been 20-30 years older he would have suggested the Gamma Knife as it is much less invasive and risky) and he thinks the artery is continuously “bumping” up against the nerve and has caused damage to the nerve. Like you, the MRI did not show too much out of the ordinary until a trained surgeon viewed it. I urge anyone who suffers from this terrible disorder to find a trained surgeon and get some help. I felel blessed to have a neurologist who knew about this dredful TN and he referred me to this particular surgeon. I feel so hopeful reading your story and cannot thank you enough for sharing. I only hope that my story will be the same after my surgery. I have run on and on but I hope my experience with the “first visit” with the surgeon and all the information I got and shared may be helpful to even one person up here. Here is hope for pain free days for all of us!