Cutting the Nerve during an MVD ?

Replies to This Discussion

Permalink Reply by Michaela on June 19, 2010 at 11:12pm

I am getting my nerve cut in 6 weeks but it is not during or part of an MVD, although they do begin the process the same way as they do a MVD,; however, once the surgeons are inside the brain cavity, the processes take a different course. Cutting the nerve should only happen in only the most severe, unresolvable cases. Cutting the nerve also leaves the side of your face completely numb, with no possibility of keeping the feeling in the face. If the surgeon doesn't find any compressions whilie performing the MVD, then there are other surgeries that should be done before you should consider cutting the nerve. Also there are several things to consider before deciding to have your nerve cut, which is a raresurgery because of the possibilities of anesthesia dolorosa, complete numbness, and the possibility of it only partially or completely not working. This surgery is only done in the most severe of cases that have been going on for several years, when medications cannot keep the pain under control, and when surgeries have failed.

How long have you had TN? How severe of a case do you have?

Permalink Reply by Vic Maidhof on June 20, 2010 at 10:24am

Hi Michaela..thanks for responding...it sounds like you have experience dealing with facial pain as you are quite informed..I have had severe TN since early 2006...it started up after going to the dentist..(long story)...I had a gamma knife procedure....no help whatsoever....then balloon compression/glycerol four times in the last three years...the last one was only four months ago and the beast has returned...tegretol seems to work pretty good for me but as time goes on the dosage will need to be increased to toxic levels...Im sure you know the story....my neurosurgeon is well respected but I believe he is more into gamma knife work then actual hands on...he said he does about two of these type MVD surgeries a year....and scheduled me for next month....I am now into serious research mode as the balloon compressions have now left my left side of the face pretty much numbed and weird feeling..much like permanent novicane...cannot chew on left side as I cannot feel my teeth there...but no big deal as long as there is no pain but not the case for me....I live in San Diego and am into out door sports like golf etc so being pain free is important to me...having to be afraid of moving across the room or simply talking or shaving can set off terrible pain and I get very depressed in this state.

Permalink Reply by Michaela on June 25, 2010 at 7:36pm

I have had a Gamma Knife alos but have never had the gylercol balloon compressions. Are they supposed to intentionally cause damage to the nerve? I go to UCSF and my neurosurgeon is very well-respected. He has done all of my surgeries and while they have not worked for me, he has helped thousands of other patients to pain-free living. I am one of the young, unlikely cases that keep him up at night, considering what his next move should be. He is a remarkable man and I completely trust him and what he thinks is best for me, to give me the best chance at pain-free living. I have a very very very severe case, one of the worst he has ever seen, which is hell for me! My life is all about my TN and I am hoping that one day I will be able to touch my face without crying or go for a run in freedom but I don't want to be greedy so for my next surgery, when he is cutting my nerve, I am only asking for less pain. I have to be realistic with my chances of success so I am hoping that maybe I will have enough relief that the vast amount of medicines I take daily will actually control the pain a bit, that would be amazing for me, the one thing I could use in my life! My neurosurgeon told me that the more times you purposely damage the trigeminal nerve, the less likely it is that the nerve will respond to other surgeries, such as if you were to have your nerve cut. But if you have something compressing the nerve, then the surgery should take care of the pain, unless (like me) you have 3 things compressing the nerve and a horribly damaged inside of your nerve.

I definitely think if I were you, I would speak with my neurosurgeon before the surgery to make sure he isn't going to cut your nerve during the MVD, because if you can't hand;e the discomfort you have now, then you are never going to be able to live with a completely unfunctioning nerve that you are left with once the nerve is cut. If the MVD fails, which we are all praying it doesn't, then I would wait awhile, in hopes that the damage from the balloon compression heals itself, before considering having the nerve cut. That way if you have the nerve cut, the nerve has a better chance of ceasing to function as it is supposed to and a much lower risk of causing problems like anesthesia dolarosa or the continuity of pain. It is your choice of course, but this site is here so people have the most information possible to make the most informed decisions about their situations as they can! Good luck with your MVD and I will let you know how the cutting of my nerve comes out so you have more knowledge in the instance that you need it.

Vic Maidhof said:

Hi Michaela..thanks for responding...it sounds like you have experience dealing with facial pain as you are quite informed..I have had severe TN since early 2006...it started up after going to the dentist..(long story)...I had a gamma knife procedure....no help whatsoever....then balloon compression/glycerol four times in the last three years...the last one was only four months ago and the beast has returned...tegretol seems to work pretty good for me but as time goes on the dosage will need to be increased to toxic levels...Im sure you know the story....my neurosurgeon is well respected but I believe he is more into gamma knife work then actual hands on...he said he does about two of these type MVD surgeries a year....and scheduled me for next month....I am now into serious research mode as the balloon compressions have now left my left side of the face pretty much numbed and weird feeling..much like permanent novicane...cannot chew on left side as I cannot feel my teeth there...but no big deal as long as there is no pain but not the case for me....I live in San Diego and am into out door sports like golf etc so being pain free is important to me...having to be afraid of moving across the room or simply talking or shaving can set off terrible pain and I get very depressed in this state.

Permalink Reply by Vic Maidhof on June 26, 2010 at 10:57am

Hi Michaela, My heart goes out to you, you are young and have suffered so much...I appreciate you taking the time to respond to my posting...after the Gamma Knife did nothing...my first Balloon Compression with Glycerol injection numbed the left side of my head, face and the teeth on that side...it was wonderful because I could feel
the "nerve tics" but no pain whatsoever when the tics were firing off...The balloon and the glycerol intentionally damage the nerve in the area caring the pain signal..and it works fine...but the nerve heals itself over time...apparently I heal quickly because some people have one of these and they are fine for a few years...but I have had four in three years and my surgeon said four is enough and that I should consider MVD surgery now. The date is set for surgery but I am on the fence about it...I am not in full blown pain quite yet as I was before the last balloon. Im taking only 2 to 6 hundred mgs of tegretol right now and getting by o.k...but that can change in an instant as you well know. So you have had an MVD? and not balloon with glycerol first?

Permalink Reply by Liz K. on June 29, 2010 at 2:42pm

Vic,
I'm not sure I would agree to cutting the nerve. My surgeon said he would pad the nerve even if he didn't find a compression. I think cutting the nerve is something that I would avoid and not agree to. My surgeon did not suggest it.
Liz

Permalink Reply by uwfotogal on June 29, 2010 at 4:48pm

I'm very interested in this discussion. I was diagnosed initially with a-typical TN or TN with a-typical facial pain in 2000. Not sure what the difference is. I had Gamma Knife or Stereo Tactic Radiosurgery and actually know people who have been cured, but it didn't work for me. I have the MVD and within 6 months I have got Anesthesia Dolorosa and I'm in the worst pain I've ever had. I was at some point thinking suicidal thoughts, but I have a lot of Faith and that Faith keeps me alive. My pain is being treated with a medronics pump and some orals, but today I am a 8 down from a 9.5, just 30 minutes ago. I had to bend over to do some laundry. That is always a trigger for me. Anyone else notice that bending over is a trigger?

After I had the MVD five months later I started having chronic pain and numbness on my right side, it was horrible. I was feeling like a knife was stabbing me in the cheek near my nose into my eye up to the eyebrow. It was horriffic and today it is pretty bad. I do have more good days than bad now. After the MDV, I went to a detox center to help me get off all the pain meds (this was 5 months later when I needed more help), but at day 5, it was obvious to my doc of 20 years that there was no way to humanely do this. I was put back on a lower dosage of pain medicine (for that it was worth it) and I was told by my NeuroSurgeons that there was "nothing anyone could do for me". That's when I had surgery to install the pump and it took almost a year or more to get the medication right. It appears that even now, something is wrong. I'm just having a bad day I guess. In fact, I'll soon go lay down as sleep is the only escape. I have a refill tomorrow and maybe I'm a little anxious because my husband won't be able to take me. I hope I haven't written too much, I was just trying to get it all out so I could be understood and well as understanding. Thank you all and God Bless You.

It has always been my understanding that cutting the nerve is the same as damaging the nerve. Maybe and I hope I am wrong, but then I would have had it done. I've been advised NOT to do this. So, I will be following this discussion closely. Thank you for sharing your experiences. Early on, I tried the tegretol, unfortunately that messed with my memory and ability to think.

Julianne in The Woodlands, TX


Liz K. said:

Vic,
I'm not sure I would agree to cutting the nerve. My surgeon said he would pad the nerve even if he didn't find a compression. I think cutting the nerve is something that I would avoid and not agree to. My surgeon did not suggest it.
Liz

Permalink Reply by Vic Maidhof on June 29, 2010 at 7:40pm

Hi Julianne and Liz...My MVD surgery has been moved up from July 19 to the 23rd..I will meet with my neurosurgeon once more before the operation.....I asked him clearly " if you don't find a vessel fused onto a nerve then what ?" He said he will "cut the nerve"...I will ask him about "padding the nerve vs cutting the nerve" but after reading Julianne's account Im am truly worried about Anesthesia Dolorosa...I am absolutely amazed at what Julianne has been through..I will let you all know what my neurosurgeon answers when I ask him about cutting vs padding....as far as bending over...yes bending over quickly can set off my TN which is on the left side of my face.

Permalink Reply by uwfotogal on June 29, 2010 at 10:19pm

Sounds risky... You would do best to get at least 3 more opinions. I had six.
The sad thing is that we are all looking for a cure. Maybe the best thing is to try to avoid AD. I actually had edited that message and it was better written the second time, but it looks like it was published without the edit anyway. I didn't want to sound desperate, but at the same time, I just wanted to scream NOOO! Don't do it. No need to rush, now. I want the best for you and if that means get a pain or a stimulator, I think I might try that before I had an MVD because the one's I've heard were successful were only temporarily successful. The people healed are gone. They are talking on these sites. I'm going to call the woman who got healed from the Stereotactic Radiosurgery a form of Gamma, but more pinpointed and linear so as not to affect the surrounding tissue. I'll ask her if she's still painfree. Vic, will you be okay just letting them know that you aren't ready yet? Please hon, just don't be in a hurry or if they are trying to move the surgery up; geez, that scares me because I remember it for myself.
G'nite, take good care and pray. Lay your head down and Ask God to keep you in His hands. He is my favorite Neurosurgeon.
Sorry for that sloppy reply I left earlier. No cutting the nerve, please.

Vic Maidhof said:

Hi Julianne and Liz...My MVD surgery has been moved up from July 19 to the 23rd..I will meet with my neurosurgeon once more before the operation.....I asked him clearly " if you don't find a vessel fused onto a nerve then what ?" He said he will "cut the nerve"...I will ask him about "padding the nerve vs cutting the nerve" but after reading Julianne's account Im am truly worried about Anesthesia Dolorosa...I am absolutely amazed at what Julianne has been through..I will let you all know what my neurosurgeon answers when I ask him about cutting vs padding....as far as bending over...yes bending over quickly can set off my TN which is on the left side of my face.

Permalink Reply by uwfotogal on June 30, 2010 at 10:47pm

Vic, I am praying for you as I know how difficult a decision this is. Have you read many books done much research. This page is something I wish I'd had. I had no experience just read Striking Back, but really other than TNAssoc. I didn't have a soul to talk to know I am on several. There is another list on FaceBook. Just have to type in Trigeminal Neuralgia.

I hope you understand my fear for you. When you say "fused to the nerve" well, that's not an accurate comment either, did your doctor say that? The blood vessel can just be close enough to the nerve to tough it to trigger the pain. I've never heard of a blood vessel being "fused" to a nerve. The man who did my surgery is 51 same age as me. He is said to have done the most MVD's but do you think he told me there was a chance of a failure? No, another doctor had to tell me. Ask yourself, "self, is he talking to me or at me? Is this doctor compassionate toward my needs or is his motive to simply do the surgery?" They don't do very many of these so when one comes along, I guess it's pretty exciting for them to get to operate. I had to use a cane after I had my surgery for several months. I was always so dizzy, but then after they took me off of one of the medications. I had a bad day today and yesterday. I didn't sleep very well last night due to the acid reflux caused by h.phylori. I finally got some new information and learned that the peppermint water is harming me. This is a terrible bacteria that will cause a stomach ulcer. No chocolate or mint waters.
Off to bed. Vic, you might want to move your surgery back farther. Why are you in a hurry given what you know? If perhaps you do or don't, will you please come back and tell us how you are? My best wishes are with you as you diliberate and I'm here if you need me also. I am following this thread.


Julianne Ziefle said:

Sounds risky... You would do best to get at least 3 more opinions. I had six.
The sad thing is that we are all looking for a cure. Maybe the best thing is to try to avoid AD. I actually had edited that message and it was better written the second time, but it looks like it was published without the edit anyway. I didn't want to sound desperate, but at the same time, I just wanted to scream NOOO! Don't do it. No need to rush, now. I want the best for you and if that means get a pain or a stimulator, I think I might try that before I had an MVD because the one's I've heard were successful were only temporarily successful. The people healed are gone. They are talking on these sites. I'm going to call the woman who got healed from the Stereotactic Radiosurgery a form of Gamma, but more pinpointed and linear so as not to affect the surrounding tissue. I'll ask her if she's still painfree. Vic, will you be okay just letting them know that you aren't ready yet? Please hon, just don't be in a hurry or if they are trying to move the surgery up; geez, that scares me because I remember it for myself.
G'nite, take good care and pray. Lay your head down and Ask God to keep you in His hands. He is my favorite Neurosurgeon.
Sorry for that sloppy reply I left earlier. No cutting the nerve, please.

Vic Maidhof said:

Hi Julianne and Liz...My MVD surgery has been moved up from July 19 to the 23rd..I will meet with my neurosurgeon once more before the operation.....I asked him clearly " if you don't find a vessel fused onto a nerve then what ?" He said he will "cut the nerve"...I will ask him about "padding the nerve vs cutting the nerve" but after reading Julianne's account Im am truly worried about Anesthesia Dolorosa...I am absolutely amazed at what Julianne has been through..I will let you all know what my neurosurgeon answers when I ask him about cutting vs padding....as far as bending over...yes bending over quickly can set off my TN which is on the left side of my face.

Permalink Reply by jamie leigh on July 1, 2010 at 7:06am

I wish I understood my situation better so I could explain it to you. My doctor thought there was a compression showing in the MRI so did the MD but didn't see a compression. He "pinched" my nerve saying this would relieve/numb the pain. Never got a straight answer as to what happens when/if the nerve finally heals. He was out of the country so had to cancel my 6 week checkup. I am going today...I have a lot of questions. I feel for you when you say you were full of tegretol and not quite sure of what he said. We go from doctor to doctor with this tegretol screwing with our minds and feel so confused. We just want to trust the doctors. I am praying for you. Good luck Vic.

Permalink Reply by uwfotogal on July 1, 2010 at 9:45am

Please let us know what they did to you so we can better understand if you are getting relief or not. You said he "pinched" the nerve instead? I think it could take a few months or maybe this was your cure.

God Bless and I hope you get a better reply. I had to get copies of my medical records in order to understand and that still didn't help; however, I am going to ask for all films, photosgraphs and video tapes that were taken during the procedure. It is really sad to have to rely on his recollection.

Thinking of you,
Julz

jamie leigh said:

I wish I understood my situation better so I could explain it to you. My doctor thought there was a compression showing in the MRI so did the MD but didn't see a compression. He "pinched" my nerve saying this would relieve/numb the pain. Never got a straight answer as to what happens when/if the nerve finally heals. He was out of the country so had to cancel my 6 week checkup. I am going today...I have a lot of questions. I feel for you when you say you were full of tegretol and not quite sure of what he said. We go from doctor to doctor with this tegretol screwing with our minds and feel so confused. We just want to trust the doctors. I am praying for you. Good luck Vic.

Permalink Reply by jamie leigh on July 1, 2010 at 1:28pm

I am going to start a new discussion or blog and tell of my experience today. I am not HAPPY about it!

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