My MVD is scheduled for Feb 12. However, I am questioning my reasons to do this. I am only in severe pain two or three times a month. Most of my pain is controlled by my meds. I have had to increase my meds in the last 4 months and still have some pain most of the time. I have had TN for over 8 years. The increase in my meds makes me sleeply and I have trouble working. The reason I have chosen MVD is because I fear being on the meds long term is harmful and The book Striking Back said that the success rate for MVDs drops off after people have had their pain for more than seven to eight years. Also, my family is tired of me not being able to do things (babysit grandkids, go out on cold windy days, drive up in the mountains, never knowing when I will have a bad day) Should I still have the MVD if Iam not in severe pain most of the time? Please help to make the right choice. I am really scared of this operation. Thanks.
Ro, Thanks for your response. I have a doctor’s appointment on January 12 to discuss all of this with him. I still have lots of time before my surgery to change my mind. I am trying to learn all I can, so I will make the right choice. This web-site along with the endthepain web-site have been a great help. It is so nice to be to I can talk to other who have TN. No one else really understands. Thank you for all of the time you put in on this site. You are truly a loving and caring person. May God bless you and may you have a great Christmas, pain free.
Dear Debbie,
I understand your angst. Last year at this time, I felt hopeless. In the throes of the worst and longest TN attack of my experience, I had thoughts of ending my own life. I did not want to live another day with the pain of TN or with the debilitating side-effects of the medication. If you read through my past blog post, you will see the desperation and the hope of my journey.
I had my MVD surgery on February 12, 2009. Without doubt, the decision to have surgery,caused confusion and turmoil. I come from a family of stoics…No pain…No gain… I believed that living with and through pain was a sign of strength, a badge of honor. My family and friends did not understand. In hindsight, I can ask, how could they understand? Afterall, I didn’t even understand what was happening to me.I felt betrayed by everyone. Most significantly I felt betrayed by my own body. I trusted no one.
I can say with absolute certainty, it is one of the single most important decisions I have ever made. I had good information, a an excellent physician, and the support of this group on my side. Most importantly, I stood strong in my faith that God had a plan for me and it did not include plans for me to suffer another 20 years of unexplainable pain.
As the saying goes, 10 months post MVD, “Life is good!” I am laughing, smiling, working, playing,…fussing …complaining…working…crying…enjoying…feeling… celebrating…I am living and I am present n in my own life. That is the gift I received when I chose to let go and have faith.
I have had a few moments of pain in my recovery. However, it all pales in comparison to pain I lived with for over 20 years. Today,I am pain and medication free.( I have been so for months) I woke up early this morning and I remembered it all…the good …the bad…and the ugly. I must say, the good far outweighs the bad.
No body can make the decision for you. You know your own body better than anyone else in this world. You know your pain. I went into my surgery with a positive attitude and one filled with the hope and belief that I would get my life back. I did.:)!!! I have NO, not even one one single, regret about choosing MVD surgery as treatment fo my TN.
There is amazing support and power in this group. If you have any questions or you want to talk, please feel free to contact me. Like all the others in the group, I am here for you. May you have a safe and pain free Christmas!
Peace, love, tenderness and abundant blessings sent your way,
Aleshia
Debbie,
If I had to do it all over again, I would have had the MVD very soon after my TN began. But I was relatively pain free for 4 years until Oct 09 when it hit very hard and continued to progress without stopping, each day worse than the day before. So with a low dose of medicine and little pain prior to Oct 09, I didn’t think about surgery. I knew of the surgery but I didn’t do any research about TN because I did okay most days. I have told everyone I know should this happen to them, get the surgery done earlier. I believe I would not have the pain I continue to have (although very well controlled and pretty minor in comparison to pre-surgery) if I had had the surgery sooner. Although it is scary, I would have repeat surgery if needed. Thinking and praying for you. Liz K.
This is for Liz K. How much numbness did you have and where was it located? It’s been 6 weeks after surgery and my tongue, lip and lower part of my chin are really numb. I find myself biting my tongue, (I probly should sometimes) and the inside of my cheek. I am somewhat discouraged right now. I see an ENT on Monday to make sure I don’t have another issue unrelated to the surgery and then on Tuesday I have a follow up with my nuerologist. I need answers. I don’t have the sharp constant shooting pains anymore, but I am still in a lot of pain. Also the I am swollen on the right side of my face. My mom had this surgery 15 years ago and did great.
Hi Debbie
I had TN for 2 and half years before I had the surgery. It was a big decision to have the surgery but at that time like you I was not in constant pain but felt I could not go on with medication. The surgery wa very tough but I recovered fully from the op however what I thought would be the answer to all my prayers was not and I am back on tegretol with the operation not being successful. All I can give you is my experience however there are plenty of more success stories. Good luck with whatever you decide and if you want any more info let me know
Debbie,
I was pretty numb throughout the bottom part of my face and the back of my head but not my tongue or lips. I’m sure that is the reason I did not have any - not any - surgery pain. The numbness lasted for about 4 months. I didn’t have any swelling. My TN pain is pretty much controlled with medication although I had breakthrough pain in Oct and again a few days ago. But I’m doing well now. I added my trileptal and that seems to have controlled it. My pain after surgery does not compare at all to pre-surgery. Most of my pain now is the atypical aching type. The surgery took most of the sharp pain away. Therefore, I would consider the surgery again. What does your surgeon tell you? My surgeon was ready to operate again when he found out that all m pain was not gone. I wasn’t ready then. And I’m not ready for it now although I’ve read that there is better success with having the second surgery sooner rather than later. I wished I had had the surgery early in the course of this condition. I think I would not have any of the aching since I didn’t have the aching until about 4 mths before surgery. And I have had TN for about 4 years at the time of surgery.
Liz K.
Thank you all for your experiences with MVD surgery. I am sure that I will have it done in Feb. Right now one of my main concerns is that I can change my Neurologist. I saw him last Thursday and left his office in tears. He does not seem to know anything. When the results can back from my MRI he said that it did not show anything, but he still referred me to the surgeon because he could not tell me about anything other than meds. However he did increase my carbamazepine from 200mg to 1200mg per day and added 900mg of Gabapetin. (The surgeon said that I did have a large compression on the right side (painful side) and a smaller compression on the left.) I started having problems remembering things, like my husbands name (been married 17 yrs) and how to spell and add. The thing that really scared me is a started having double vision. The neurolist said that he had never heard of these side effects and that I must be in remission because my pain level was only about a 5. He lowered my Gabapetion to 300mg per day. Sorry, but I can’t understand how I could be in remission and still have pain. I went home and looked up Gabapetin one of the side effects is double vision. Right now I am waiting to see the surgeon to have him answer all of my questions. My appointment is on Jan 12, I am sure he will be able to explain things to me and I really trust him. Pain level is about the same, and I am trying to stop smoking in preparation of surgery. Hope you all had a great Christmas and this new year will be pain free for all of you.