I am writing to you all in a bit of desperation. I had my MVD on 6-18-13. On day three post-op, the TN pain started to come back, slowly at first, but the floods gates opened and now I am back at square 1 (at least it feels like that). My NS immediately started me on Neurontin (cannot take Tegretol as my red blood cells get too low). I cannot say it has done much other than make me dizzy and nauseated (or is that post-op stuff?). Anyway, NS says that inflammation is at its worst 24-48 hours post-op, which may coincide with the return of my pain. He feels that with time and healing, my pain may resolve.
I do not have an appnt with the NS until 7-1-13. I tried to wait until then to get answers to "perpetuate hope" that I did not go through with the surgery for nothing. But, I cannot wait and want to know if anyone has experienced this or knows any information about this? Please, just be honest and tell me if this is the best it will get.
Hi Kassie, I don’t have any special wisdom to share. I do know that it is different for everyone. I recently went through the MVD, and I was thinking that if I woke up with pain, I would want another MRI. I’m a see it type. And would want to see if there was another compression, or if I just had to hang in there. I’ve heard of pain returning after a while, disappearing immediately, etc. my prayers are with you! , pain pain, go away!!!
Regards - tiffanie
Kassie, I don't know anything to tell you other that I can feel the desperation in your message. I hope when you see the doctor on July 1, he can offer an acceptable explanation. You are in my thoughts.
Kassie, it takes the nerve a long time to get damaged, so it also takes a long time to heal.
Don’t be discouraged just yet, hope is so important to the healing process. Stress and worry can aggravate TN. Easier said than done but worth a try, I hope you start to see positive results soon!! (( hugs )) Mimi
Well said Mimi,
There are many different outcomes from the surgery. Each day, we just have to breathe.
Keep us posted! I’m praying for your speedy healing.
Regards- Tiffanie
Kassie, exactly 3 days after my MVD my pain went through the roof and was actually worse than it was before. I am now 8-9 months later with only a slight shock here and there (very mild) because of another disorder I have. I am 99% pain free. I am not sure if you had just TN or TN and Atn, but it was a good 6 weeks before I was feeling really good, but I will say the first month was a bitch!!
Give it time, it takes a while for the nerves to calm down. I was in a panic with the pain, but after 3 months I had nothing...nada. and felt great until this other disorder decided to screw with me (its the cause of the TN). So take it easy and dont stress too much, it sounds like you are just going through a normal healing process
Please don't be discouraged. Like Mimi said, it takes time and we all respond differently. I had TN and ATN. Some of the TN pain was the first to go right after my MVD. The rest of the pain took 2-4 months to go away. Remember that it's brain surgery. Our brains weren't meant to be touched, so there's some trauma besides the damaged nerve(s) trying to heal. Hope you're feeling better!
Wow, thank you to you all for your thoughts and experiences. It is TRULY comforting to hear from folks who were in my place now who eventually got to the pain free place in time!!! (ugh, did that make sense)
I did go to see my NS today, who was only able to spend a short time with me following getting my staples out (confused face). He reiterated that I need to be patient about the healing process- yes, I need to work on that. Yet, he also acknowledged that there may be unknown in play that may be impacting my pain levels. So, her ordered blood tests, including but not limited to Vitamin B, Folate, Thyroid, CBC and one other I did not recognize. Is this normal, or did he insinuate that the MVD may have failed? I guess I should have asked, but I was taken by the direction the conversation went...my bad. All my labs were normal three months prior to surgery and I only had slight anemia 24 hours post op.
I also asked him what specifically he saw in the surgery, as in the hospital he had told me and my family that it was evident immediately upon locating the nerve that the artery was on top of it. Today he tells me that not only was it on top of it, it was scarred onto the nerve and he had to dissect them apart. He said it was "nasty". He further made the comment that I must have had some sort of head trauma or, what I think he said was, "encephalitis" at one point in my life. I need to research what that means exactly, but thought I would throw that out there in case somewhat else had encountered that. I assume if one gets encephalitis that one would know that???
Thank you for your ongoing knowledge, but even more than that your support and encouragement!! Best to all.
Kassie, I was in the same boat in a way as you after the surgery. I had my surgery in October, by the end of November I felt great, then all of a sudden I had pain in my arms and legs that was as bad as the TN. I called the neurosurgeon that did my MVD because the doctors in my area kept saying I had MS and I knew I didnt ( 3 MRI's and surgery?) because someone would have seen it. Dr. Brown the surgeon said he thought that I had an underlying auto-immune disorder that had caused the TN by the description of other things that were going on when I had the consult and surgery. I had extreme pain in my legs and stiffness on Tegretol which is one of the reasons I pushed for MVD. Fast forward to now, I am diagnosed with a very very rare disorder and waiting for ok for treatment. I guess what I am trying to say is your neurologist may be looking for the cause of the TN, because if they find the cause then that reduces the chance that the TN will ever come back, not so much that the surgery failed.
It is possible for someone to have TN with no cause, just bad luck, but in a lot of cases something else caused it. I would suggest you play it by ear with the neurologist and ask why they want to do tests and see where their train of thought is going...I think it may be a good thing, but only you can judge that
Wendy
Kassie said:
Wow, thank you to you all for your thoughts and experiences. It is TRULY comforting to hear from folks who were in my place now who eventually got to the pain free place in time!!! (ugh, did that make sense)
I did go to see my NS today, who was only able to spend a short time with me following getting my staples out (confused face). He reiterated that I need to be patient about the healing process- yes, I need to work on that. Yet, he also acknowledged that there may be unknown in play that may be impacting my pain levels. So, her ordered blood tests, including but not limited to Vitamin B, Folate, Thyroid, CBC and one other I did not recognize. Is this normal, or did he insinuate that the MVD may have failed? I guess I should have asked, but I was taken by the direction the conversation went...my bad. All my labs were normal three months prior to surgery and I only had slight anemia 24 hours post op.
I also asked him what specifically he saw in the surgery, as in the hospital he had told me and my family that it was evident immediately upon locating the nerve that the artery was on top of it. Today he tells me that not only was it on top of it, it was scarred onto the nerve and he had to dissect them apart. He said it was "nasty". He further made the comment that I must have had some sort of head trauma or, what I think he said was, "encephalitis" at one point in my life. I need to research what that means exactly, but thought I would throw that out there in case somewhat else had encountered that. I assume if one gets encephalitis that one would know that???
Thank you for your ongoing knowledge, but even more than that your support and encouragement!! Best to all.
I had severe pain for about 3.5 weeks post surgery and my TN was the worst it’s ever been in that third week, with severe pain and my nerve firing all over my head which it had never done before. Very scarey. The good news is now 2 months post MVD surgery the TN pain is starting to improve, I’m taking less meds and the pain is greatly reduced. My nerve was very damaged and it may take up to 9 months to completely heal. I’m optimistic. The first month was the worst for me in regards to head pain from the surgery and ongoing Tn pain; I have taken it really easy which I think is helping me recover. Being really nauseous and dizzy was also my experience early on with severe headaches from the swelling in my head; steriods really helped. Hang in there! Everyone is different in their recovery and I wish you the very best in yours. These forums, and all the wonderful people who responded to my prior posts, have really helped me get through my MVD surgery. I feel very grateful for this site.