thankyou everyone for the messages, it feels so good to know im not alone. The MVD surgery that i desperately wanted to get is not an option anymore. My atery is not touching the root of my trigeminal nerve so this will not work for me. i am devistated! we go back to university of miami, fl. on Nov. 8th to see what other options would be the best for me. Has this ever happened to anyone else? please let me know.
Kristin,
How did they determine if there is anything touching the root of your nerve? I had 4 mri’s that came back normal. Yet I have had two mvd’s and each time they found artery and veins touching my nerve. The first mvd after 2 normal mri’s found a vein wrapped from the root of the trigeminal nerve all the way to the end and an artery laying on it. The second mvd found an artery wrapped around my 7th, 9th and 10 cranial nerve.
Just curious the logic behind their thinking. Best of luck.
<<cite>Stefanie said:
My TN was caused by a Lyme Disease infection, so I do not have an offending vessel that is causing it. I also have bilateral TN. AND I have a cardiac pacemaker, so I cannot have Gamma Knife, either.
I had a Balloon Compression surgery on my right side about 3 weeks ago, and will be having the Cyber Knife procedure on the left.
Don’t lose hope, there are MANY other options to explore besides an MVD.
hey stephanie, all of my doctors theories are that i got TN from a virus that was in my sinus cavities. The surgeon at um that only does mvd surgeries told me he didnt think it was possible for my artery to be hitting the trigeminal nerve because it usually only happens to patients over 50 and im 30. His explanation did not make sense since i have researched the topic so much. I had one mri that i brought with me, that he said he could not see it, so they took another mri to do a special sequence to find that atery. I still dont have the results back but i just asumed it was not possible sinve my TN was caused by a virus. im going to another surgeon at um on nov 8th, so im trying to find out more info before that. thankyou for sharing.
Jessy said:
Kristin,
How did they determine if there is anything touching the root of your nerve? I had 4 mri's that came back normal. Yet I have had two mvd's and each time they found artery and veins touching my nerve. The first mvd after 2 normal mri's found a vein wrapped from the root of the trigeminal nerve all the way to the end and an artery laying on it. The second mvd found an artery wrapped around my 7th, 9th and 10 cranial nerve.
Just curious the logic behind their thinking. Best of luck.
Hey jessy, wow! Your experience gives me hope too. but this surgeon wont go in and do it unless he sees it on the mri. i guess i just wanted the mvd because i want imediate relief. i just cant stand the pain anymore, and im so frustrated with doctors and meds! im sure u both know what im talking about. i just dont know what to expect from any of the procedures and im scared. how was your experience with the mvd’s?
kristen best said:
cite>Stefanie said:and stephanie, is there anything u can tell me about your experiences with the procedures u had done. I know everyone is different but maybe this will give me some in sight. I was really scared to get the cyber knife. did you get numbness in your face, ect. My TN seems to be more like yours although i dont think mine was caused by lime disease but some virus i had two days after coming back from Honduras. so, my doctors think its something I got there. Did your Balloon Compression surgery work for you and if u dont mind telling me what university did u go to. sorry for so many questions, maybe your answers will direct me in a certain way with the doctors.My TN was caused by a Lyme Disease infection, so I do not have an offending vessel that is causing it. I also have bilateral TN. AND I have a cardiac pacemaker, so I cannot have Gamma Knife, either.
I had a Balloon Compression surgery on my right side about 3 weeks ago, and will be having the Cyber Knife procedure on the left.
Don't lose hope, there are MANY other options to explore besides an MVD.
hey stephanie, all of my doctors theories are that i got TN from a virus that was in my sinus cavities. The surgeon at um that only does mvd surgeries told me he didnt think it was possible for my artery to be hitting the trigeminal nerve because it usually only happens to patients over 50 and im 30. His explanation did not make sense since i have researched the topic so much. I had one mri that i brought with me, that he said he could not see it, so they took another mri to do a special sequence to find that atery. I still dont have the results back but i just asumed it was not possible sinve my TN was caused by a virus. im going to another surgeon at um on nov 8th, so im trying to find out more info before that. thankyou for sharing.
kristen best said:
Jessy said:Kristin,
How did they determine if there is anything touching the root of your nerve? I had 4 mri's that came back normal. Yet I have had two mvd's and each time they found artery and veins touching my nerve. The first mvd after 2 normal mri's found a vein wrapped from the root of the trigeminal nerve all the way to the end and an artery laying on it. The second mvd found an artery wrapped around my 7th, 9th and 10 cranial nerve.
Just curious the logic behind their thinking. Best of luck.
Hey jessy, wow! Your experience gives me hope too. but this surgeon wont go in and do it unless he sees it on the mri. i guess i just wanted the mvd because i want imediate relief. i just cant stand the pain anymore, and im so frustrated with doctors and meds! im sure u both know what im talking about. i just dont know what to expect from any of the procedures and im scared. how was your experience with the mvd's?
I opted for the MVD because I too wanted immediate relief and to be free from meds. After the MVD I was doing great right out of surgery and I was told that I would roughly have about a 95% success. Then two weeks after the MVD it came back with avengence. I went back on the meds and decided to see the surgeon. He was baffled at this point and after describing my pain again he said that he believed that I have trigeminal neuralgia but also a cross between genticulate and glossopharyngeal. It was then that I realized that there was no curing this but only to get me a better quality of life. He told me my only chance was another mvd for about a 70% chance of success which I was hesistant about because I was just worn out. I went in for the second mvd and he told my husband that typically he doesn’t find much but I had extensive damage all the way down my cranial line with my 7th, 9th, and 10th cranial have an artery braided between them all. I still have pain but I am getting better days. I am refusing to go back on meds because we want to start a family and I am reluctant to have them in my body.
I would talk to multiple surgeons and get their opinion because there are alot of cases that all have normal mri’s and compressions are found. I hope the best for you!
Thankyou for sharing your expeirence with me.
Jessy said:
kristen best said:
Jessy said:Kristin,
How did they determine if there is anything touching the root of your nerve? I had 4 mri's that came back normal. Yet I have had two mvd's and each time they found artery and veins touching my nerve. The first mvd after 2 normal mri's found a vein wrapped from the root of the trigeminal nerve all the way to the end and an artery laying on it. The second mvd found an artery wrapped around my 7th, 9th and 10 cranial nerve.
Just curious the logic behind their thinking. Best of luck.
Hey jessy, wow! Your experience gives me hope too. but this surgeon wont go in and do it unless he sees it on the mri. i guess i just wanted the mvd because i want imediate relief. i just cant stand the pain anymore, and im so frustrated with doctors and meds! im sure u both know what im talking about. i just dont know what to expect from any of the procedures and im scared. how was your experience with the mvd's?
I opted for the MVD because I too wanted immediate relief and to be free from meds. After the MVD I was doing great right out of surgery and I was told that I would roughly have about a 95% success. Then two weeks after the MVD it came back with avengence. I went back on the meds and decided to see the surgeon. He was baffled at this point and after describing my pain again he said that he believed that I have trigeminal neuralgia but also a cross between genticulate and glossopharyngeal. It was then that I realized that there was no curing this but only to get me a better quality of life. He told me my only chance was another mvd for about a 70% chance of success which I was hesistant about because I was just worn out. I went in for the second mvd and he told my husband that typically he doesn't find much but I had extensive damage all the way down my cranial line with my 7th, 9th, and 10th cranial have an artery braided between them all. I still have pain but I am getting better days. I am refusing to go back on meds because we want to start a family and I am reluctant to have them in my body.
I would talk to multiple surgeons and get their opinion because there are alot of cases that all have normal mri's and compressions are found. I hope the best for you!
kristen best said:
Jessy said:Kristin,
How did they determine if there is anything touching the root of your nerve? I had 4 mri's that came back normal. Yet I have had two mvd's and each time they found artery and veins touching my nerve. The first mvd after 2 normal mri's found a vein wrapped from the root of the trigeminal nerve all the way to the end and an artery laying on it. The second mvd found an artery wrapped around my 7th, 9th and 10 cranial nerve.
Just curious the logic behind their thinking. Best of luck.
Hey jessy, wow! Your experience gives me hope too. but this surgeon wont go in and do it unless he sees it on the mri. i guess i just wanted the mvd because i want imediate relief. i just cant stand the pain anymore, and im so frustrated with doctors and meds! im sure u both know what im talking about. i just dont know what to expect from any of the procedures and im scared. how was your experience with the mvd's?
I opted for the MVD because I too wanted immediate relief and to be free from meds. After the MVD I was doing great right out of surgery and I was told that I would roughly have about a 95% success. Then two weeks after the MVD it came back with avengence. I went back on the meds and decided to see the surgeon. He was baffled at this point and after describing my pain again he said that he believed that I have trigeminal neuralgia but also a cross between genticulate and glossopharyngeal. It was then that I realized that there was no curing this but only to get me a better quality of life. He told me my only chance was another mvd for about a 70% chance of success which I was hesistant about because I was just worn out. I went in for the second mvd and he told my husband that typically he doesn't find much but I had extensive damage all the way down my cranial line with my 7th, 9th, and 10th cranial have an artery braided between them all. I still have pain but I am getting better days. I am refusing to go back on meds because we want to start a family and I am reluctant to have them in my body.
I would talk to multiple surgeons and get their opinion because there are alot of cases that all have normal mri's and compressions are found. I hope the best for you!
Thankyou for sharing your experience with me. I will be praying that your pain subsides for you so you can start your family.
Maria said:
Kristen, I am so sorry that the mvd surgery will not happen after you had finally made your decision. In reading other blogs and discussions, I have read of others for whom suddenly whatever treatment they had decided upon could not happen for a variety of reasons. It's awful to be counting on something, and then it can't/doesn't happen. I fervently hope that you will find an alternative that works. Please read my post on corneal tears and anesthesia dolorosa of the eye. One is in my blog, another is in a new discussion. It will at least give you an example of my result with RFC, radio frequency coagulation surgery. It's just one result out of who knows how many surgeries. But it will provide a little more information to throw in your hat. Wish you the best. Maria
Hey maria, im so sorry to hear about what happened to your eyes, i know it can be very uncomftorable, even feel worse than that, sometimes so painful! I understand because when I was 5 months pregnant with my last child, i awoke one day to having absolutely no vision at all. This has nothing to do with my TN but it just felt like the worst thing ever! i couldnt see, my eyes hurt, and my life dramadically had to change untill six weeks after I gave birth to her.She was deffintely a miracle baby because i dont know how i got through that pregnancy. The doctors did not know what it was, which made me realize doctors deffintely do not know everything!, but now my eye sight and eyes are perfect. I just want you to know that i know how it feels and im so sorry u have to suffer through this. when i was going through my eye problems i could not see the light at the end of the tunnel, literally, but now i see why it happened. but i do know its scary, and I will pray for you that you will get through this! thanks for telling me about some of your complications with your surgery. it is really hard to decide what to do, right now i just want to do anything to make the pain stop, u know? but you do have to think of the complications that could happen. thanks for sharing
"I had one mri that i brought with me, that he said he could not see it, so they took another mri to do a special sequence to find that atery. I still dont have the results back but i just asumed it was not possible sinve my TN was caused by a virus. "
you don’t know if you have a compression yet. wait for the thin slice MRI to come back; the first MRI you had was likely a normal scan which is useless to determine compressions.
viruses usually do not attack the TN nerve exclusively. shingles is one of a very few viruses which has a predilection for the TN nerve, but it leaves physical symptoms. the few which can damage the nerve usually come with other systemic effects; are you having symptoms elsewhere in your body? the virus theory is a sometimes frustrating default explanation when doctors have no other. it does not do much except emphasize how little they understand the disease.
wait for your scan result and make sure it is read by a neuro radiologist. hopefully, your neuro actually looks at your scan himself. if you need help with the report, and you have a copy of it, i can read it for you.
i’m not a doctor, speak to your own about what i have said here.
vesper
kristen best said:
Maria said:Kristen, I am so sorry that the mvd surgery will not happen after you had finally made your decision. In reading other blogs and discussions, I have read of others for whom suddenly whatever treatment they had decided upon could not happen for a variety of reasons. It’s awful to be counting on something, and then it can’t/doesn’t happen. I fervently hope that you will find an alternative that works. Please read my post on corneal tears and anesthesia dolorosa of the eye. One is in my blog, another is in a new discussion. It will at least give you an example of my result with RFC, radio frequency coagulation surgery. It’s just one result out of who knows how many surgeries. But it will provide a little more information to throw in your hat. Wish you the best. Maria
Hey maria, im so sorry to hear about what happened to your eyes, i know it can be very uncomftorable, even feel worse than that, sometimes so painful! I understand because when I was 5 months pregnant with my last child, i awoke one day to having absolutely no vision at all. This has nothing to do with my TN but it just felt like the worst thing ever! i couldnt see, my eyes hurt, and my life dramadically had to change untill six weeks after I gave birth to her.She was deffintely a miracle baby because i dont know how i got through that pregnancy. The doctors did not know what it was, which made me realize doctors deffintely do not know everything!, but now my eye sight and eyes are perfect. I just want you to know that i know how it feels and im so sorry u have to suffer through this. when i was going through my eye problems i could not see the light at the end of the tunnel, literally, but now i see why it happened. but i do know its scary, and I will pray for you that you will get through this! thanks for telling me about some of your complications with your surgery. it is really hard to decide what to do, right now i just want to do anything to make the pain stop, u know? but you do have to think of the complications that could happen. thanks for sharing
Dear pat, thankyou for responding. If you dont mind me asking, where in FL. did you have your mvd surgery done? Yes, truthfully i am very confused and dont know what to do anymore. I have heard from many other people that FL. does not have the best medical care, especially for something as rare as this. Thank you for all your information and help.
>
Pat Akerberg said:
Hi Kristen,
I know this may sound strange to you right now, but sometimes when things that we pursue don’t seem to work out smoothly, rather than seeing that as bad luck, it’s also possible that you are being spared. The reason that I shared this thought is that from your description it doesn’t sounds clear as to whether your diagnosis is for classic TN or the so called “atypical” TN. MVD surgery is not always advised for the latter and can potentially even make matters worse. As you consider Versper’s wise counsel, it would also be important to make sure your diagnosis is clear.
Because I live in Florida and have been through the mill trying to find informed and competent medical help regarding TN, I’m especially cautious and concerned that you get second and third opinions and make sure you are in good hands before you make important treatment decisions that have very real risks along with the reported benefits. The counsel offered to not only check out the neurosurgeon but the hospital as well is very wise too. In both cases, on paper and by reputation at least, I thought I was in good hands for my MVD surgery. Now that I’m living with the most dreaded outcome, and an abdication of after care, I can see in hindsight how I let fear literally drive/push me into choices that waiting for a bit might have changed. For starters, I would have left Florida for the MVD surgery. But at the time I couldn’t see how to make that work. Fear and drugs can do that.
In the end you will be your own best advocate by becoming as informed as possible and by not being afraid to ask questions of those who will have your well being in their hands. Wishing you the best,
Pat
Thanks Stephanie I will do that!
Stefanie said:
Kristen,
Look up "Greg" from Largo, FL in the member directory. He had a very successful MVD surgery with a Dr. Gobo in Dunedin, FL. You may want to get in touch with Greg and ask about his experiences with his neurosurgeon. Dr. Gobo may be a good doc to get a second opinion from, without having to leave Florida.
Hi pat, if you deffintely dont mind, i would love to give you a call and find out more info, just let me know when would be the best time to call you.
Pat Akerberg said:
Hi Kristen,
I’d be glad to talk w/you about my experience (and that of several others I know who also went where I did). Not knowing what the protocol is on this forum about discussing doctors and hospitals, please feel free to call me at 727-789-4373 - or if you prefer, I’ll call you to discuss. I’d be glad to share where I would go and where I’d steer clear of based on what I know.
Pat
Kristin, I’ll add to the observations of others.
First, something that you said set off a clanging alarm in my head: “My artery is not touching the root…” Please be informed that TN can be associated with several arteries or veins, anywhere along the nerve. If your doctor used exactly that phrase, then there is something very peculiar in his knowledge of physiology. If your doctor won’t attempt an MVD unless he sees arterial compressions on an MRI, then he needs additional training.
Even the best available MRI - a 1-mm thin slice procedure performed with and without contrast agent and post-procedure 3-D reconstruction - frequently does not reveal compressions that are later found during surgery. If I’m recalling correctly, when Dr. Peter Janetta and his surgical team reported on hundreds of MVD procedures in the New England Journal of Medicine, they noted that compressions were found in almost all, practically without exception. But many of the compressions had not been seen in imagery before being revealed in endoscopic examination during MVD surgery. I am uncertain of the exact statistics, but from talking with over 2,000 face pain patients during the past 15 years, I would intuitively estimate that MRI actually confirms a compression in something less than half of the cases where there is one.
I recommend that you ask your doctor to look up the statistics on MRI detection of compressions, and then renegotiate his willingness to do an exploratory procedure through the mastoid bone. If he won’t do the research and arrive at a more informed position, then you need another doctor who is better trained.
Go in Peace and Power
Red
Hey Kristen,
Red is absolutely right in that the nerve can be tangled/compressed all the way from one end to the next, and also dead on the mark about Peter Janetta’s findings saying that in almost every case of TN that there was a visible compression found.
Some surgeons wont operate unless they can see compression in scans prior to the op, rightly or wrongly that is a choice they make, and if it indicates my inner cynic, it may be because they aren’t willing to take the risk of an unsuccessful procedure on there success rate stats? That was pretty much my neurologist’s take on it, she said unless they were certain that they could help or you were immenently liable to " fall of your perch" ( her words not mine!!!) they were reluctant to pick up a scalpel, because they had to face you afterwards.
However if they believe that your neuralgia has been as a result of infection as you indicated, I can understand their reluctance, they don’t do the op generally for MS/lupus patients, or for post herpetic, because the nerve is affected by different factors that the teflon/decompression may be unlikely to help, so if infection was the initial reason I can somewhat understand it.
Have a read of the striking back book, there are details there that indicate it could be caused by raeders syndrome, tolosa-hunt syndrome or sluders syndrome,just from what you said about it following a sinus infection. I am NOT a doctor, not by any stretch of the imagination, so please please don’t think I am trying to offer a diagnosis, just throwing other things out there that may explain your doctors reluctance at this point to operate, so you may want to look at those further, they may already have been ruled out, I don’t know, I just thought I would mention them to you, to maybe look at further or ask your doc about. So please know I’m NOT trying to diagnose, or worry you by throwing other things into the mix, just wanted to mention it to you, before you jump into surgery.
So I absolutely agree with Red with what he’s said about the stats, and the compressions, he is absolutely accurate, and as a patient advocate he probably has a lot more information on these things than I do.
But maybe look a little further at this before looking at cranial surgery, believe me I know that we will do anything to escape this pain, and it’s all too easy to pin our hopes on the one procedure, or one drug, or that the next scan will give us all the answers.I’ve done it myself and come up against wall after wall after wall.
But with the nature of this beast I truly believe we need to research research research and go in there armed with questions and information (all the while trying not to sound like a hypochondriac!) there are just so many factors that can affect us. Anyway, that’s just my tuppence, all my love
Gracie x x x
I have gone to a couple neurosurgeons. One says the gamma knife because he thinks I have atypical and the other one says I don’t have a typical and I should have MVD sugery because I am a a could age of 42 for the MVD surgery. I show now compression on my nerve on the sliced MRI scan. I am going to talk to another doctor who does the MVD surgery to see if I can get this done in the Fall. I am torn on what to do??? I am sick of being on these Meds. I have no memory or concentration left. and still have some pain! Has the MVD surgery helped some people out there? I have read that it has. I am glad there is someone out there to discuss this with who knows what I am going through. Thanks kristin.
i am fighting for right now the nero stimulation implants for the face. i have had the trial surgery already at UM in Fl. and it worked for me. it doesnt take the pain away but covers up so you r feeling massaging, which feels good, rather than getting the other surgeries that give u a numb face and weird sensations throughout your face for the rest of your life. Unfortuently, my insurance covered the trial surgery so i could try it for 3 days and then decided the day before i got the implant, denied it. so, i am fighting my insurance company to approve it. Its still considered experimental surgery to them but to many dr. s its the new way to go for tn patience. might be something you could look into. good luck
I would like a permanent solution. I am hoping to hear from my doctor soon. Thanks for your advice and help on this.
kristin forrester,
if you aren't sure of the diagnosis, think carefully about going with gamma knife. it is serious business and can make you worse if your anatomy isn't qualified for it. there is no coming back from radiation; it is permanent.
MVD is not without risk. however, despite it being invasive, it is less pervasive than high doses of radiation near the brainstem.
neither procedure is the easy route. none of these treatments are.
good luck,
vesper
I'll add to Pat's thought and Vesper's voiced concerns, if I may. If a close friend or family member was seriously considering Gamma Knife, my advice would be "don't go there! -- if you're going to have surgery then consider either MVD or RF Rhizotomy first." Both have better outcome statistics, and they don't create nearly as many nerve lesions and generalized adhesions or arachnoiditis as GK frequently does. I've read the work of a few professionals who consider GK an outright "barbaric" procedure and would like to see it outlawed. Doctors get pretty polarized on these issues, of course. And we cannot ignore the reality that hospitals which have invested millions of dollars in Gamma Knife Centers have a financial self-interest in recovering their investments. Some doctors will also take serious insult at my mention of this reality. But my candid response to such insult is "deal with it, Doctor -- and tell me how long it's been since you recommended a procedure that you don't personally perform?"
Regards, Red