Well everyone Ive decided to have the MVD. I ask for all of your thoughts and prayers. And any recommendations or ideas you may have for me. My plan is to have it the 5th of June. Im waiting for my daughter to get out of school. Im scared to death, but i know that I cant live like this. Im only 45 and taking more medicine than a lot of my patients. Where will I be in 5 or 10 years? Ive prayed about it and am leaving it all at Gods feet. He will guide the hands of the Dr's and I pray his plan is a pain free existence.
Hi Angela, I had MVD in May 2009 and am still pain free. I was 54 at the time. It was the first surgery I had so really didn’t know what to expect. I had TN for eight years and had to keep increasing the meds. The meds were ruining my life. I woke up in ICU pain free from the TN. I wish now I had not waited so long but surgery is scary to think about. I went out of state to a neurosurgeon with the experience in the MVD surgery. Even after two Mri’s showing no compression, he found two arteries and a vein compressing on the nerve. So I went into surgery not knowing what they would find. I just told him do not cut the nerve if you do not find compression. You will need someone at home with you at least for the first week. My friends and family brought in food which was very helpfull. You will be concentrating on getting better and resting alot. I went back to work at 6 weeks and was really tired at first. Now life is normal. To me that was my goal. I wanted my life back. Good luck and don’t get to stressed out thinking about it.
Connie
Thank you Connie. Im so happy to hear of your success. I pray everyday for the same. I just want my life back to share with my family again. Its been so hard. My husband understands and my close friends but for others they just look at me like im crazy or wonder why im always making excuses. The pain of TN is the worst but the pain that goes along with everything else hurts too. Thank you for responding I appreciate your information. :)
Angie
Hi Angela —
I just had MVD on Jan. 25th ... several of us went back and forth and had a really detail discussion about it all ... I hope this link works:
It's been over 8 weeks and I'll be 100% drug free at the end of this week. I'm so glad that you are moving fwd with surgery. Cheers! Jessica
I had Gamma done May 2010. The Gamma lasted 8 months but I never got off the meds. In Feb 2011 the pain came back with a vengance. I met with my team of doctors and decided to take the next step. I had MVD May 2011. I was pain free right away. My head didn't hurt but my shoulder did. Overall my surgical experience was amazing. Recovery took about 6 weeks. I slept often. I was drug free by September.
Almost a year has gone by and I have a full life. I can go outside when its windy, eat what I want and talk normal again. I hope you get the same results I did. After 7 years of TN, I am greatful for every day I wake up pain free.
Thanks, JessicaG. I was going to recommend a search of our site postings collection, but you've found one of the better threads already.
Regards, Red
Congratulations Jessica. Im very happy for you. I hope you continue to have great results! Thank you also for the link.....
JessicaG said:
Hi Angela —
I just had MVD on Jan. 25th ... several of us went back and forth and had a really detail discussion about it all ... I hope this link works:
http://www.livingwithtn.org/group/mvds/forum/topics/questions-about...
It's been over 8 weeks and I'll be 100% drug free at the end of this week. I'm so glad that you are moving fwd with surgery. Cheers! Jessica
Hi Bobbie!
I look forward to the day I can also go out on a windy day! I just want to Smile again and laugh. Im so happy for you and your success. Thank you for your response.
Angie
Bobbie said:
I had Gamma done May 2010. The Gamma lasted 8 months but I never got off the meds. In Feb 2011 the pain came back with a vengance. I met with my team of doctors and decided to take the next step. I had MVD May 2011. I was pain free right away. My head didn't hurt but my shoulder did. Overall my surgical experience was amazing. Recovery took about 6 weeks. I slept often. I was drug free by September.
Almost a year has gone by and I have a full life. I can go outside when its windy, eat what I want and talk normal again. I hope you get the same results I did. After 7 years of TN, I am greatful for every day I wake up pain free.
Thank you Red. As always I appreciate and respect your thoughts and opinions.
Angie
Richard A. "Red" Lawhern said:
Thanks, JessicaG. I was going to recommend a search of our site postings collection, but you've found one of the better threads already.
Regards, Red
I had my MVD in August of 2011. I have been pain free since I woke up. I was 41. I have two kids. I am a single parent. I got to the point where the meds were making me disabled. I had to get the surgery. I was scared too. However, I now wish I had the MVD the day I was diagnosed. I wasted 4 years of my life, dragged my family with me, and lived a very sad life. I did end up with double vision as a side effect that really only bothers me when I am tired. We are all hoping that this will go away but not having pain is worth it. Even if I knew I would have double vision, I would have done it knowing what I know now. My kids don't remember the mom of four years ago before I was diagnosed so it is great to be happy again. I thought I was handling things OK and keeping things together while I was sick. My children are now 18 and 20 and every now and again they tell me about their experience with my illness and it makes me sad. My daughter just talked to me about how when I was first diagnosed, all I did was lay on the couch and cry. I thought I was hiding this stuff but kids are smart. All I can say is "GO GO GO". If you trust your doctor, you will be just fine.
I have had TN for 7 years, had a Gamma Knife, that was horrible, too much radiation...more pain, so the answer was more Neurontin, so much that I missed years of my family life...sad...but now I am having MVD this month in Texas..I can't wait, I want my life back...I want to participate in life...I trust my Doctor, they are wonderful, and I just know all will be fine ! I am ready to take the big step,and I should have done it sooner...
Hi there.
Just wanted to share.
I had an MVD last may and have been in horrible pain since then.
The pain came back after day 12 and now the added pain I have is twice as bad.
The doctors think the MVD is what is making my pain worse and the Teflon is causing inflammation and fibrosis.
They are talking about going in to undo it, which means another brain surgery.
Just a reminder that we are all different.
Research your options.
Know what is best for you.
xoxo
tammie
Yes we are all different ! Did the myelin cover wear off your nerve before the surgery ? I was wondering if the contact with the teflon on the "raw" nerve would set off more pain....Anybody know the answer ?? I am concerned, my surgery is in 3weeks.. anybody have this problem before the surgery ??
They had to put the teflon around my raw nerve to protect it. My doctors said the myelin was pretty damaged. Again, I woke up pain free.
Just remember Cathy, I have learned this over four years, the people that are pain free and successful tend not to post - they are living their lives. I try to come here to be supportive because I have had such a good experience even with the double vision. My doctor of choice was Dr. Casey. I felt that after all the research I had done, he had the best results. I think most of this comes down to doctor choice which is why I say if you trust your doctor and did your research on them, you will be good.
Thanks Raquel, I really searched for a Doctor I could trust, Dr. Casey , in Detroit , my hometown ,was definitely on the trusted list. I am going to Dr. Kim, at Hermann Memorial in Texas...he has a great success rate, understands my needs, and has quite the reputation here in Arizona ! I had Gamma at Barrows Neuro in Phoenix, what a nightmare, all the side effects and they gave me more and more Neurontin, I was a zombie....from a go getter Mom, an in control business woman, to someone who had to depend on others....I was worried about the raw nerve, and I forgot to ask him, we think of all these questions after our initial visit ! Now I am more relaxed, more confident that all will be well ! Thank you for your answers and support
No problem Cathy! I am so happy you found a great doctor too. We sound very similar. I was so worried about being drugged and running a marketing and sales team on my own. I knew that as a single parent, i had no choice but to get rid of this pain that was ruining my life. I do see know how my kids suffered with me although they never said anything during the process. Keep staying positive. Just think, you are so close to being pain free...
I have to tell you it is amazing!
Angela - good luck.
i know what you mean - i want also so much to be able to talk more the 2 minutes without it hurts. and to smile ...i can't right now.
so - wish you so much luck.
by the way - did the doctors saw something on the MRI that they're doing the MVD ?
Hi. Yes they were able to see on the MRI what they described as an exposed nerve that needed to be covered. I’m a prime candidate. Thank you for your kind words. My surgery is in 2 days and I tell you I’m a little nervouse but I feel a sense of peace and trust in my dr. I’m looking forward to getting my life back.
Nir Morita said:
Angela - good luck.
i know what you mean - i want also so much to be able to talk more the 2 minutes without it hurts. and to smile …i can’t right now.
so - wish you so much luck.
by the way - did the doctors saw something on the MRI that they’re doing the MVD ?
Angela -- we got duplicates from your reply to Nir Morita. I've deleted the extras. Regards,Red
Well, just back from my MVD with Mischer Neurological Associates at Memorial Hermann in Houston, TX,,amazing...Dr. Kim was fantastic, my surgery was April 25, stitches out 2 weeks later, have to stay on the meds, but lower dosage for about 6 months. I had some damage from the previous gamma knife, my eye had lost the corneal reflex, and the MVD did not fix it, I still drool when I am very relaxed, and the eye waters, what we found is that if you had severe damage from the gamma knife, it takes more time for the nerve to recover....so you still have the gamma knife damage, and eventually, hopefully, that part of the nerve will regenerate, but the overall TN pain has gone...Dr. Kim had to do quite a bit of work since my artery was mashed on the nerve and entangled, so there is some residual pain which will vanish with time. But I can go out in the wind,put on makeup, etc. AND my second best after the pain of TN relief is the weight loss, it just seems to fall off....The Neurontin and Tegretol really packed on the pounds (50), and I am still weak and recovering and taking a much smaller dose of only the Neurontin, but the weight has dropped over 10 pounds in a month, without exercise....But, if you wear glasses beware, there is a very sensitive nerve behind the ear, and geez, it hurts, and the incision hurts, the crown of the head and the incision site and the back of the ear hurt, and my Neurologist says it will be about 6months to a year, but thats OK...My hair was cut in about a 3 inch swatch from just below the crown to base of skull, and if I wear my hair down, the scar is almost covered. I can post a picture, my bandage fell off the day after surgery and my son took a picture.. I am so, so glad I did this, I had been petrified for 7 years...what a waste of 7 years...and I have a medical background....Mischer Neurological Associates has a webinar online with Dr. Kim explaining and showing the surgery....that's what gave me the courage to do it ! The original pain from TN had been returning and I had to do something... So glad I saw that webinar, you can go to the webpage and watch, the surgery is actually half way through the webinar. We drove our motorhome from Arizona, stayed in a RV park and they had a shuttle to the hospitals all day long..it was quite affordable, if you don't have an RV , they have some you can rent, and the shuttle service to the UT Medical Center was free, they have the MD Anderson Cancer Center, and many other hosptials in the complex. It was truly amazing. If you have more questions, just give let me know ! Good Luck, your skull will hurt like heck when its done, but the TN pain is gone...