Recurrent TN attributable to veins after MVD

Replies to This Discussion

Permalink Reply by Pat on August 31, 2010 at 7:20pm

Hi Liz,
I am familiar w/this study and not aware of anything newer but will keep on the lookout. My understanding (since I have it in spades) is that numbness after an MVD is nerve damage. So with that understanding it's nerve damage that causes the numbness not the other way around. I understand your concerns and like you I would want to weigh it all out because living with TD/AD is very difficult, believe me. One of my questions (perhaps to the researcher) would be if the veins grow back after the first MVD what would stop them from growing back after the second? Thanks for sharing this information.

Pat

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Permalink Reply by vesper venustas on August 31, 2010 at 9:01pm

nothing stops veins from growing back. they grow when and where they want. sometimes you get lucky and they don't grow back near the nerve. other times, not so much.

unfortunately, surgeons can not cauterize every single vein in the skull, because we need veins to carry blood. too much a deficit can cause an aneurysm.

the researcher

Pat Akerberg said:

Hi Liz,
I am familiar w/this study and not aware of anything newer but will keep on the lookout. My understanding (since I have it in spades) is that numbness after an MVD is nerve damage. So with that understanding it's nerve damage that causes the numbness not the other way around. I understand your concerns and like you I would want to weigh it all out because living with TD/AD is very difficult, believe me. One of my questions (perhaps to the researcher) would be if the veins grow back after the first MVD what would stop them from growing back after the second? Thanks for sharing this information.

Pat

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Permalink Reply by Liz K. on September 1, 2010 at 7:59pm

Pat,
I believe you are correct in saying that the numbness is caused by damage to the nerve. So that is my major concern. And it may be the reason I still have pain. And would surgery then cause further damage to the nerve? I had surgery at a university hospital. There were many in training. All asked the question and tested me to see if the feeling and/or numbness were the same on both sides. I think that it could be a continuous cycle in that the veins can always grow back. This is an older study but surely the results would be similar.
Liz

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Permalink Reply by Pat on September 2, 2010 at 9:22am

Liz,

My surgery was done at a University hospital as well. Those who tested me after surgery assumed that because I could feel touch on my TN side and hear that all was going to be fine even though I had painful numbness. It took months and 3 other places for me to learn that I have trigeminal deafferentation - nerve damage.

We sit in the same place because what would worry (if not terrify) me about another surgery would be that the deafferentation turned into full blown anesthesia dolorosa. I guess these are the difficult personal decisions that we have to weigh out given the risks. In my case I'm going to do my best to wait up to 18 months after my surgery before I consider any other surgery that could tamper with an already damaged nerve.

We think we can read and understand enough to make an informed decision with this convoluted disease. Yet everyday I read someone's story that had outcomes that "should" not have happened according to the findings. An example is the tough cookie posting here of a woman who had atypical and vein compressions who was advised not to do the MVD and when she finally was able to had a great result. So in the wee small hours when we search ourselves, those are the moments that we hope to get some internal guidance that gives us peace about our choices - that is what I wish for you - and the rest is up to the will of heaven.

Pat

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Permalink Reply by Liz K. on September 3, 2010 at 4:58pm

Hi Pat,
I don't understand trigeminal deafferentation but I will read more about it. I am concerned about nerve damage but yet everyday people have treatment without damage. I'm not sure I am at the point where I will try anything. That was where I was before. I feel that maybe the nerve blocks caused as much damage to mine because I didn't have any atypical pain until a couple days after the first nerve block.
I do pray for all of us. And I try to stay positive because I know there are a lot out there, not on this site, who have had successful treatment. It has been 16 mths since my MVD.
Liz

Pat Akerberg said:

Liz,

My surgery was done at a University hospital as well. Those who tested me after surgery assumed that because I could feel touch on my TN side and hear that all was going to be fine even though I had painful numbness. It took months and 3 other places for me to learn that I have trigeminal deafferentation - nerve damage.

We sit in the same place because what would worry (if not terrify) me about another surgery would be that the deafferentation turned into full blown anesthesia dolorosa. I guess these are the difficult personal decisions that we have to weigh out given the risks. In my case I'm going to do my best to wait up to 18 months after my surgery before I consider any other surgery that could tamper with an already damaged nerve.

We think we can read and understand enough to make an informed decision with this convoluted disease. Yet everyday I read someone's story that had outcomes that "should" not have happened according to the findings. An example is the tough cookie posting here of a woman who had atypical and vein compressions who was advised not to do the MVD and when she finally was able to had a great result. So in the wee small hours when we search ourselves, those are the moments that we hope to get some internal guidance that gives us peace about our choices - that is what I wish for you - and the rest is up to the will of heaven.

Pat

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Permalink Reply by Pat on September 3, 2010 at 5:40pm

Liz,

If you don't mind saying (or maybe you already did elsewhere) - what are your current symptoms? I'm asking because trigeminal nerve damage/neuropathic pain has a number of characteristics, along with some bizarre sensations. Prlonged numbness, with or without pain, certainly falls on the continuum of mild to moderate (deafferentation) to severe (anesthesia dolorosa) nerve damage.

I'm no doctor but realized after seeing 6 neurologists that I wasn't going to get a diagnosis of what was going on with me from them. Neurosurgeons and pain doctors seem to best equipped to determine a diagnosis of causes for continued pain after an MVD. It's hard for me to characterize an MVD as successful if it left me in more pain than I originally had with TN before the MVD. The deafferentatiion pain is constant vs. intermittent and it's not the same kind of pain as TN. After I saw an expert on trigeminal nerve damage, I got the diagnosis of deafferentation which finally explained why I wasn't "getting better" after the MVD. Deafferentation (in very layman terms) means that pain is occuring and experienced as coming from a source(s) that typically doesn't cause pain (touching the face, chewing, talking, teeth aching) so the input part of the nerve signaling is "afferent" or maladaptive. I am both numb (lips, teeth, gums, inner ear, tongue) and can feel sensation in those areas. I also have pain (jabbing tooth pain, aching, throbbing and burning tongue). If I wasn't on Trileptal this pain and tongue burning cycle occurs about every minute. When I talk or try to chew anything it triggers or escalates the pain. A new form of torment. I was told this is "moderate" deafferentation. THAT gave me a perspective and even greater empathy for those suffering with AD. It's a difficult walk - a hero's journey.

You may want to put a question out to the researcher about deafferentation/nerve damage and treatments. I was told to be very cautious about any procedures - especially those whose purpose is to damage or stimulate the nerve. I hope sharing what I've learned helps you some.

Pat

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Permalink Reply by vesper venustas on September 4, 2010 at 10:09pm

pat,

"afferent" nerves carry signals from the periphery to the central nervous system for further processing. when these nerves are damaged, the signals can no longer be carried to the brain. therefore the nerves are "deafferentated" which results in numbness, if the nerve is sensory. for whatever reason, this can also result in pain.

"efferent" nerves carry signals from the central nervous system to the periphery.

just wanted to clarify that "afferent" is a type of nerve, not a maladaptive state of being.

the researcher (last post under this name; i have been asked to change it.)



Pat Akerberg said:

Liz,

If you don't mind saying (or maybe you already did elsewhere) - what are your current symptoms? I'm asking because trigeminal nerve damage/neuropathic pain has a number of characteristics, along with some bizarre sensations. Prlonged numbness, with or without pain, certainly falls on the continuum of mild to moderate (deafferentation) to severe (anesthesia dolorosa) nerve damage.

I'm no doctor but realized after seeing 6 neurologists that I wasn't going to get a diagnosis of what was going on with me from them. Neurosurgeons and pain doctors seem to best equipped to determine a diagnosis of causes for continued pain after an MVD. It's hard for me to characterize an MVD as successful if it left me in more pain than I originally had with TN before the MVD. The deafferentatiion pain is constant vs. intermittent and it's not the same kind of pain as TN. After I saw an expert on trigeminal nerve damage, I got the diagnosis of deafferentation which finally explained why I wasn't "getting better" after the MVD. Deafferentation (in very layman terms) means that pain is occuring and experienced as coming from a source(s) that typically doesn't cause pain (touching the face, chewing, talking, teeth aching) so the input part of the nerve signaling is "afferent" or maladaptive. I am both numb (lips, teeth, gums, inner ear, tongue) and can feel sensation in those areas. I also have pain (jabbing tooth pain, aching, throbbing and burning tongue). If I wasn't on Trileptal this pain and tongue burning cycle occurs about every minute. When I talk or try to chew anything it triggers or escalates the pain. A new form of torment. I was told this is "moderate" deafferentation. THAT gave me a perspective and even greater empathy for those suffering with AD. It's a difficult walk - a hero's journey.

You may want to put a question out to the researcher about deafferentation/nerve damage and treatments. I was told to be very cautious about any procedures - especially those whose purpose is to damage or stimulate the nerve. I hope sharing what I've learned helps you some.

Pat

• ▶ Reply

Permalink Reply by Pat on September 5, 2010 at 7:33am

Thanks for the clarification which helps. If I understand your explanation correctly, then the maladaptivity is in the afferent signaling (input) to the CNS? Is that related to central nervous system sensitization? I also don't understand the difference between sympathetically maintained vs. somatic TD and the options and/or differences in treating each form. Any help in explaining that would be most appreciated so we can steer clear of treatments that could only serve to make things worse. I realize that each person is different so I'm asking in general terms. Somewhere I read (Dr. Stepehen Graff-Radford) that nerve injury/damage can create "an ensuing continuous trigeminal neuralgia, usually referred to as traumatic trigeminal neuralgia or trigeminal deafferentation". Sorry for the questions but there aren't many resources available to learn about and understand these issues.
Pat

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Permalink Reply by Liz K. on September 6, 2010 at 7:53am

My numbness lasted for several months but I have the typical and atypical pain now. I don't have numbness. But if I sleep with my face on my pillow then I wake up with a funny sensation but it is always immediately after I wake. I feel certain that both sides of my face feel the same and I'm not feeling any numbness on my worst TN side. I have some minimal pain on my other side. And the pain on the side is in the same areas as my worst side. I wonder if that is the way TN progresses. I've read you can get it on both sides after longstanding TN but I'm not sure if I've read you get it in essentially the same areas.
Liz

Pat Akerberg said:

Thanks for the clarification which helps. If I understand your explanation correctly, then the maladaptivity is in the afferent signaling (input) to the CNS? Is that related to central nervous system sensitization? I also don't understand the difference between sympathetically maintained vs. somatic TD and the options and/or differences in treating each form. Any help in explaining that would be most appreciated so we can steer clear of treatments that could only serve to make things worse. I realize that each person is different so I'm asking in general terms. Somewhere I read (Dr. Stepehen Graff-Radford) that nerve injury/damage can create "an ensuing continuous trigeminal neuralgia, usually referred to as traumatic trigeminal neuralgia or trigeminal deafferentation". Sorry for the questions but there aren't many resources available to learn about and understand these issues.
Pat

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Permalink Reply by Sarah Hobbs on September 6, 2010 at 1:01pm

Yes veins can grow back and why a lot of neurosurgeons now days will cushion them off the nerve vice cutting them and removing them.

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Permalink Reply by Liz K. on September 6, 2010 at 5:00pm

Thanks Sarah
But why do veins grown back and I don't understand their function if they can be cut away. Arteries can't or have to be bypassed but the veins also have a function. How is the blood returned to the heart if they are just cut away? I haven't researched but you all probably know.
Liz

Sarah Hobbs said:

Yes veins can grow back and why a lot of neurosurgeons now days will cushion them off the nerve vice cutting them and removing them.

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Permalink Reply by Pat on September 7, 2010 at 6:44pm

Thanks for explaining your current symptoms, Liz. Now I better understand your dilemma. Fortunately it doesn't sound like you're dealing with nerve damage and neuropathic pain. Unfortunately you're back at dealing with TN pain and looking into what to do about it. Maybe at a minimum one of the next steps is an MRI to determine if there are any compressions. In my case the MRI didn't show any but when the surgeon went in there was an artery and a vein. If I had a "do-over", I would have done my best to manage on medication as long as I could to have time to more fully research all of my options and would have interviewed several neurosurgeons. Hindsight is always 20/20. I've seen some research articles that talk about certain veins that cannot be cut or situations where they or an artery actually go through the nerve so they can't be cut (or padded). It's complex, just like each one of us in unique and no two situations are alike. Wishing you the best as you research options.

Pat

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