I found this article and it pertains to me, specifically my compression by a vein and my recurrence of pain. It is on the web and was in Neurosurgery Feb 2000. Does anyone have newer statistics?I have an appt with the surgeon in Nov. That gives me time to think about what I want to do. I am considering another MVD but like all of us, I would like to know my chances of success and also my risks specifically of AD. I had a lot of numbness with my first MVD so I am concerned that more numbness may damage the nerve.
Recurrent trigeminal neuralgia attributable to veins after microvascular decompression.
Lee SH, Levy EI, Scarrow AM, Kassam A, Jannetta PJ.
Department of Neurosurgery, Thomas Jefferson University Hospital, Philadelphia, Pennsylvania 19107, USA.
Abstract
OBJECTIVE: To demonstrate the cause of and optimal treatment for recurrent trigeminal neuralgia (TN) in cases where veins were observed to be the offending vessels during the initial microvascular decompression (MVD) procedure.
METHODS: An electronic search of patient records from 1988 to 1998 revealed that 393 patients were treated with MVD for TN caused by veins. The pain recurred in 122 patients (31.0%). Thirty-two (26.2%) of these patients underwent reoperations. Clinical presentations, recurrence intervals, surgical findings, and clinical outcomes were analyzed.
RESULTS: Analysis of 32 consecutive cases of recurrent TN initially attributable to veins revealed a female predominance (female/male = 26:5), with one female patient exhibiting bilateral TN caused by venous compression. Patient ages ranged from 15 to 80 years, with a prevalence in the seventh decade. The V2 distribution of the face was involved more frequently than other divisions. For 24 patients (75%), recurrence occurred within 1 year after the initial operation. At the time of the second MVD procedure, development of new veins around the nerve root was observed in 28 cases (87.5%). After successful subsequent MVD procedures, the pain was improved in 81.3% of the cases.
CONCLUSION: The recurrence rate for TN attributable to veins is high. If pain recurs, it is likely to recur within 1 year after the initial operation. The most common cause of recurrence is the development and regrowth of new veins. Even fine new veins may cause pain recurrence; these veins may be located beneath the felt near the root entry zone or distally, near Meckel’s cave. Because of the variable locations of vein recurrence, every effort must be made to identify recollateralized veins. Given the high rate of pain relief after a second operation, MVD remains the optimal treatment for the recurrence of TN attributable to vein regrowth.
PMID: 10690724 [PubMed - indexed for MEDLINE]
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,
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
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.
“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.
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
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.
Pat,
Hindsight is 20/20. If we only knew what to do. I saw a new neuro today and I am scheduled for a MRI and a MRA next Wed. If I have another compression, then I will opt for a repeat MVD. I had a compression before but it wasn’t seen on the MRI. Each of us tend to lean toward the treatment which was successful. And if we have a bad outcome, then of course we don’t recommend that particular treatment. I’m sure if my MVD surgery had been awful and I didn’t get full relief, then I would not think about it again. But my surgery was easy and I did get a lot of relief but I was never totally free of pain. I am sorry you are having so much pain.
Liz
Pat Akerberg said:
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.
Can you describe your numbness after your MVD surgery? Was it immediate or did it come on several days later? Was it painful, like pins and needles, or just numb? And how many months did it last for? After reading through all these posts, it sounds like probably 6 to 9 months, but wasn’t sure if I was inferring the duraction correctly. Thanks! Good luck with all the decisions you are sorting out. Wish I could offer some help, but I’m afraid I don’t have much to add to the discussion at this point. Our current situation is 3 weeks post MVD with severe pain and complete numbness and getting worried about what the future holds for us now… Best wishes to you!
Hi Beth,
I had immediate numbness and it lasted for about 8 mths??. It was a long time. The back of my head near the cut lasted almost a year.
I am sorry you are having such severe pain. My pain was reduced right after the surgery but I didn’t have full pain relief but I was much better. And I continued to get better for about 6 mths. But it has been about a yr and a half and my pain is returning. But it still isn’t as bad as it was pre-surgey.
I hope your pain will get better.
Liz
Beth Lipovsky said:
Hi Liz -
Can you describe your numbness after your MVD surgery? Was it immediate or did it come on several days later? Was it painful, like pins and needles, or just numb? And how many months did it last for? After reading through all these posts, it sounds like probably 6 to 9 months, but wasn’t sure if I was inferring the duraction correctly. Thanks! Good luck with all the decisions you are sorting out. Wish I could offer some help, but I’m afraid I don’t have much to add to the discussion at this point. Our current situation is 3 weeks post MVD with severe pain and complete numbness and getting worried about what the future holds for us now… Best wishes to you!
Thanks for sharing, Liz! I’m sorry you had to endure the numbness and pain for so long. I do appreciate the information though… it is a big source of hope for us right now! We have been so scared lately. Just hearing that it may be a slow recover, but that there IS still hope, is great. Just patience, patience, patience… more holistic healing… more praying. We sure learn how to be more aware of the greater powers around us during moments (I say that lightly) of weakness like this. Appreciate the insight. Best wishes to you as you figure out step #2!