Its been 9 months since my MVD and I still have pain. I can go anywhere from 5 to 8 days without pain which I am grateful for and the pain level is half of what it use to be, but its still upsetting to have the pain. I was just wondering what everyone thought. Since its been so long do you think this is the best its going to be or is there any hope that when I reach the one year mark it can go away totally?
Hi Mat
I am in a similar situation. I had MVD in January for ATN. I still have a great deal of TN2 pain, and saw my surgeon yesterday. He did an MRI to be sure there was no new compressions, and all was clear. At his recommendation, I am now considering a peripheral nerve stimulator to control the pain. I would advise you to make a follow up appointment with your surgeon to see what your situation is, and explore any other options.
Best of luck
Christine
Hi Mat,
Before choosing MVD for my med resistant Type2 TN, I did a lot of research.
Here’s what I found…
So many factors are considered in terms of outcomes after MVD. Some of which are;
Type of TN
Duration since onset
Previous procedures
Type of compression ( SCA, AICA, VEIN or any combination thereof)
Complete decompression or partial decompression.
AGE, other health conditions.
Etc…
Complete pain relief with no meds is possible BUT not for everyone, some only achieve partial relief, some only achieve short term relief, some NO relief/change .
There is NO known cure for TN as there is NO known cause.
All the procedures we have available to date are based on trial and error.
People with no TN diagnosis or symptoms in life, were found to have compressions on their TN during autopsies.
People with TN have had MVD only to have neurosurgeon tell them post op no compressions were found.
All that being said I went through my research this morning and will include some really informative links for you to read through.
I’m only just over 3 months post op and I consider my surgery a success, I’ve reduced meds from 2-1, pre-MVD I had horrid pain all day everyday. I have no pain now.
I’m on 1200mg tegretol XR as I still have TN1 on my right. I’ve tried to reduce further BUT the pain on MVD side returns immediately.
My pain is managed now as compared to not at all before… For how long I don’t know…
Talk to your neurosurgeon as Christine suggested, but please find time to read through the following links…
Long-Term Follow-Up of Microvascular Decompression for Trigeminal Neuralgia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312136/#!po=47.9167
Trigeminal Neuralgia: What are the Important Factors for Good Operative Outcomes with Microvascular Decompression
http://fhs.mcmaster.ca/neurosurgery/documents/TGNfactorsforgoodoperativeoutcomewithMVD.pdf
facial pain, a comparison of treatments
http://www.mayfieldclinic.com/PE-rTGN.HTM
Microvascular decompression as a surgical management for trigeminal neuralgia: A critical review of the literature
Factors affecting outcome following microvascular decompression for trigeminal neuralgia
Personally I don’t believe in “is this as good as it gets” not enough is known about our condition to answer that. Your nerve was damaged, and it might need more time to heal.
So there is still hope in my opinion.
I hope you achieve more pain relief Mat, me too !!
((( hugs ))) Mimi
Ps. Sorry this is so long…
Thank you so much for all of your information. Greatly appreciated. I had TN three years before getting MVD and no other procedures done. Neurosurgeon found one artery compression which was padded with Teflon and one vein compression which was cauterized and removed. I hope you are right that I still have some time left to heal. It will be a year in 3 months and I am very worried that I will only achieve partial pain management. I am grateful, don't get me wrong, but its just sad to think to have such a procedure and not to achieve total pain relief. Wishing you a healthy recovery
Mimi said:
Hi Mat,
Before choosing MVD for my med resistant Type2 TN, I did a lot of research.
Here's what I found.....
So many factors are considered in terms of outcomes after MVD. Some of which are;
Type of TN
Duration since onset
Previous procedures
Type of compression ( SCA, AICA, VEIN or any combination thereof)
Complete decompression or partial decompression.
AGE, other health conditions.
Etc.....
Complete pain relief with no meds is possible BUT not for everyone, some only achieve partial relief, some only achieve short term relief, some NO relief/change .
There is NO known cure for TN as there is NO known cause.
All the procedures we have available to date are based on trial and error.
People with no TN diagnosis or symptoms in life, were found to have compressions on their TN during autopsies.
People with TN have had MVD only to have neurosurgeon tell them post op no compressions were found.
All that being said I went through my research this morning and will include some really informative links for you to read through.
I'm only just over 3 months post op and I consider my surgery a success, I've reduced meds from 2-1, pre-MVD I had horrid pain all day everyday. I have no pain now.
I'm on 1200mg tegretol XR as I still have TN1 on my right. I've tried to reduce further BUT the pain on MVD side returns immediately.
My pain is managed now as compared to not at all before.. For how long I don't know..
Talk to your neurosurgeon as Christine suggested, but please find time to read through the following links....
Long-Term Follow-Up of Microvascular Decompression for Trigeminal Neuralgia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312136/#!po=47.9167
Trigeminal Neuralgia: What are the Important Factors for Good Operative Outcomes with Microvascular Decompression
http://fhs.mcmaster.ca/neurosurgery/documents/TGNfactorsforgoodoper...
facial pain, a comparison of treatments
http://www.mayfieldclinic.com/PE-rTGN.HTM
Microvascular decompression as a surgical management for trigeminal neuralgia: A critical review of the literature
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2009;...
Factors affecting outcome following microvascular decompression for trigeminal neuralgia
http://panarabjn.org/wp-content/uploads/2013/03/Factors-affecting-o...
Personally I don't believe in "is this as good as it gets" not enough is known about our condition to answer that. Your nerve was damaged, and it might need more time to heal.
So there is still hope in my opinion.
I hope you achieve more pain relief Mat, me too !!
((( hugs ))) Mimi
Ps. Sorry this is so long....
Mat,
Are you on any meds?
No I am not on any meds. Before surgery I was on 2100mg of Neurotin. I just can't function on the meds required
Mimi said:
Mat,
Are you on any meds?
Hi again Mat,
It’s a personal choice but maybe considering a low dose med for pain coverage would help?
Prior to my left side coming out of remission and going all out of control, my right side was managed on 800mg tegretol. I was able to function normally (work,play,volunteer etc) and had no side effects from the med at all. It is still managed with tegretol, it’s my left MVD side that won’t let me cut down from 1200mg to 800mg. But at least I have no pain, so for now I won’t wean again, I’ve tried twice since MVD. I think I just need more time to heal before I attempt it again.
Mimi
Might be a good idea to consider another type of surgery. Talk it over with your neuro. A MVD didn’t work for me but now after a balloon compression I am drug and pain free. But I read many posts saying that didn’t work for them. We are all sooo different.
Take care of you
Linda
SCA, AICA, VEIN what is the difference with these or do u have some resource I ccould read or point me to i believe that mine was blood vessels on my nerve!?
Mimi said:
Hi Mat,
Before choosing MVD for my med resistant Type2 TN, I did a lot of research.
Here's what I found.....
So many factors are considered in terms of outcomes after MVD. Some of which are;
Type of TN
Duration since onset
Previous procedures
Type of compression ( SCA, AICA, VEIN or any combination thereof)
Complete decompression or partial decompression.
AGE, other health conditions.
Etc.....
Complete pain relief with no meds is possible BUT not for everyone, some only achieve partial relief, some only achieve short term relief, some NO relief/change .
There is NO known cure for TN as there is NO known cause.
All the procedures we have available to date are based on trial and error.
People with no TN diagnosis or symptoms in life, were found to have compressions on their TN during autopsies.
People with TN have had MVD only to have neurosurgeon tell them post op no compressions were found.
All that being said I went through my research this morning and will include some really informative links for you to read through.
I'm only just over 3 months post op and I consider my surgery a success, I've reduced meds from 2-1, pre-MVD I had horrid pain all day everyday. I have no pain now.
I'm on 1200mg tegretol XR as I still have TN1 on my right. I've tried to reduce further BUT the pain on MVD side returns immediately.
My pain is managed now as compared to not at all before.. For how long I don't know..
Talk to your neurosurgeon as Christine suggested, but please find time to read through the following links....
Long-Term Follow-Up of Microvascular Decompression for Trigeminal Neuralgia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312136/#!po=47.9167
Trigeminal Neuralgia: What are the Important Factors for Good Operative Outcomes with Microvascular Decompression
http://fhs.mcmaster.ca/neurosurgery/documents/TGNfactorsforgoodoper...
facial pain, a comparison of treatments
http://www.mayfieldclinic.com/PE-rTGN.HTM
Microvascular decompression as a surgical management for trigeminal neuralgia: A critical review of the literature
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2009;...
Factors affecting outcome following microvascular decompression for trigeminal neuralgia
http://panarabjn.org/wp-content/uploads/2013/03/Factors-affecting-o...
Personally I don't believe in "is this as good as it gets" not enough is known about our condition to answer that. Your nerve was damaged, and it might need more time to heal.
So there is still hope in my opinion.
I hope you achieve more pain relief Mat, me too !!
((( hugs ))) Mimi
Ps. Sorry this is so long....
Hi Ayre, within the links I included above are the research pertaining to studies done in reference to SCA superior cerebellar artery, AICA anterior inferior cerebellar artery and a vein compressions or adhesions.
Scroll through each link , some have charts and are easier to read through then others.
Hope that helps.
Read everything with a grain of salt, as we’re all unique in our TN, and just because a study says this or that, doesn’t mean you’ll have the same outcomes as there are so many variables involved.
Mimi xx
I added a photo below that shows the different arteries. Easier to visualize.
Sorry I couldn’t find it earlier.
ayre said:
289-image.jpg (44.4 KB)SCA, AICA, VEIN what is the difference with these or do u have some resource I ccould read or point me to i believe that mine was blood vessels on my nerve!?
Mimi said:Hi Mat,
Before choosing MVD for my med resistant Type2 TN, I did a lot of research.
Here's what I found.....
So many factors are considered in terms of outcomes after MVD. Some of which are;
Type of TN
Duration since onset
Previous procedures
Type of compression ( SCA, AICA, VEIN or any combination thereof)
Complete decompression or partial decompression.
AGE, other health conditions.
Etc.....
Complete pain relief with no meds is possible BUT not for everyone, some only achieve partial relief, some only achieve short term relief, some NO relief/change .
There is NO known cure for TN as there is NO known cause.
All the procedures we have available to date are based on trial and error.
People with no TN diagnosis or symptoms in life, were found to have compressions on their TN during autopsies.
People with TN have had MVD only to have neurosurgeon tell them post op no compressions were found.
All that being said I went through my research this morning and will include some really informative links for you to read through.
I'm only just over 3 months post op and I consider my surgery a success, I've reduced meds from 2-1, pre-MVD I had horrid pain all day everyday. I have no pain now.
I'm on 1200mg tegretol XR as I still have TN1 on my right. I've tried to reduce further BUT the pain on MVD side returns immediately.
My pain is managed now as compared to not at all before.. For how long I don't know..
Talk to your neurosurgeon as Christine suggested, but please find time to read through the following links....
Long-Term Follow-Up of Microvascular Decompression for Trigeminal Neuralgia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312136/#!po=47.9167
Trigeminal Neuralgia: What are the Important Factors for Good Operative Outcomes with Microvascular Decompression
http://fhs.mcmaster.ca/neurosurgery/documents/TGNfactorsforgoodoper...
facial pain, a comparison of treatments
http://www.mayfieldclinic.com/PE-rTGN.HTM
Microvascular decompression as a surgical management for trigeminal neuralgia: A critical review of the literature
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2009;...
Factors affecting outcome following microvascular decompression for trigeminal neuralgia
http://panarabjn.org/wp-content/uploads/2013/03/Factors-affecting-o...
Personally I don't believe in "is this as good as it gets" not enough is known about our condition to answer that. Your nerve was damaged, and it might need more time to heal.
So there is still hope in my opinion.
I hope you achieve more pain relief Mat, me too !!
((( hugs ))) Mimi
Ps. Sorry this is so long....
Great picture. Thank you.