Hi, I would like to know if anyone has had MVD surgery whilst in remission?
Thank you.
I haven't had MVD, but if I was already scheduled for it and the pain stopped temporarily, I would go ahead and do it anyway because it may be harder to get it scheduled the next time.
I am new to this forum and have been seeking answers to this very question. I’m disappointed to see that Betty had only one response. I am in remission and scheduled for MVD in 8 days. I’m afraid that the surgeon won’t find anything once he gets in there. I was first diagnosed with TN in 2009. Eventually I had the glycerol injection and was pain free for over five years. The pain returned almost three months ago and disappeared approximately 1 1/2 weeks ago (after I saw my neurologist). I wonder if I have the surgery, will he be able to find anything (since I’m in remission)?
Yes i did it during remission…but knowing its progressive i had to do MVD with dr casey…2 were covered with teflon…did not show in my MRI…which is most often.
3 years later…no meds…
no pain
Except pain … teeny …if in the freezer isle at the store!
Many who had good MVD , don’t come back here and post very long after they get well!
Thank you, Tiger4nikki and Kc Dancer! I have spent the past week searching for answers and someone who has had experience in this area. Tiger - that's exactly what I needed to hear. I sincerely doubt I will cancel my surgery, but I have so many doubts. I think that you're right about it possibly being harder to get scheduled as well as the possibility that my insurance may not cover it (changing insurance next year). Kc, I am so glad to hear that your surgery was a success and that you had it done during remission. Bless you both! Pago
I initially visited my neurosurgeon while in remission and on triliptal. He did not reccomend doing the surgery at That time BC I was pain free but would do it if and when my pain started again. It did and I had MVD 11mo ago. That being said, I would absolutely not cancel or reschedule MVD due to remission. Like mentioned, TN is progressive and is more than likely going to come back. Your chances of a full recovery from TN is to get the surgery sooner than later. If you have a compression, regardless of remission, the surgeon will be able to see it. I would consider this remission and opportunity to have surgery as a blessing! You can go into it with a full and clear Mind and not in sheer desperation like so many others. Best of luck!!
Anne, I cannot thank you enough for your response. You have no idea how much this has helped to reinforce my decision to have the MVD. I'd pretty much decided I was going to go through with it, but still have had those nagging doubts that this remission might affect the outcome (in a negative way). I believe you're right though, that the surgeon will find the compression regardless of whether I'm in remission or not. When I was first diagnosed in 2009, we lived in MD. We moved to OR last year and no one here, other than my husband, has ever witnessed me having an "episode." As we all know, it's impossible for anyone to understand what the pain is like unless they've experienced it first hand or at least witnessed another person in the throes of pain. I guess what I'm trying to say is that I'm uncomfortable discussing this procedure with friends and family here because they just don't understand. I wish they did because my husband, while being very supportive, must be so tired of hearing me vacillate about whether or not to have the procedure. He lives in constant fear of the pain coming back and I think he's afraid I'll back out. If you have time, Anne, would you mind sharing what the MVD was like for you (pre and post)? I've read a few things on this forum, but can never get enough information. If anyone else out there with a positive MVD experience would care to share, I'm all "ears."
Anne said:
I initially visited my neurosurgeon while in remission and on triliptal. He did not reccomend doing the surgery at That time BC I was pain free but would do it if and when my pain started again. It did and I had MVD 11mo ago. That being said, I would absolutely not cancel or reschedule MVD due to remission. Like mentioned, TN is progressive and is more than likely going to come back. Your chances of a full recovery from TN is to get the surgery sooner than later. If you have a compression, regardless of remission, the surgeon will be able to see it. I would consider this remission and opportunity to have surgery as a blessing! You can go into it with a full and clear Mind and not in sheer desperation like so many others. Best of luck!!
There are many people who get worse after MVD. Why would you take the risk if you have no pain?
If you have pain from a dental procedure DO NOT LET someone do a MVD surgery or many of the other procedures on you. Time and time again, you can read on this board about people with dental problems who had many procedures done and state that they made them worse.
Root Canal Damaged, I do not have pain from a dental procedure. I was diagnosed with TN in 2009 and have no idea what the cause was. The reason that I would take the risk when I'm not currently experiencing pain is because I've experienced the pain and have no desire to experience it again. I know that my TN is not going away. I do not want to live my life waiting for the inevitable and then frantically trying to get on the surgery schedule while hoping that my new insurance will cover the procedure. I'm sorry that you are evidently still having to deal with this horrible disease and wish you well.
Let us know what happens if you have the surgery. I'm glad that it isn't dental related because you can't fix those without meds. I have read that TN symptoms can go into remission for years. You might want to research the frequency of that....Just a thought.
Thanks. I have researched it quite a bit. I'm not looking forward to the surgery, but I do believe it's the best option for me right now. I'll let you all know how it goes.