It has been over a year since I last visited this site. So much pain for so long. It was finally determined I had an 80% chance of cure with MVD. I jumped at the chance!
After surgery, the neurosurgeon told my husband he was 99% sure the problem was eliminated. He has been doing this surgery for nearly 20 years. He said the blood vessel on my trigeinal nerve was the largest he has ever seen. It was in constant contact with the nerve, probably why my pain was continuous. It had rubbed a crease all along the nerve. Unfortunately, when I woke up the pain was still there.
I saw the MRI's and it was clear, even to my eyes, the vessel was all tangled with the nerve. The surgeon has a very good reputation, and I have cofidence in him, his diagnosis, and his competence.
Today is my 15th post op day. Has anyone out there had the surgery and did not have immediate relief from the pain. If so, how long did it take. It is just so hard...all the pain, never stops. Please let me know.
Hi Janice,
I haven’t had mvd yet ( April 9th) but many of our members here have reported that they still have pain, it takes up to a year for the nerve to heal. Some wake up pain free and then a few weeks later experience pain, others have pain later then it dissipates or stays the same. It’s different for everyone.
Please post this question in our MVD group or on the main page, you’ll get more replies from the group.
I hope you continue to heal and find a reduction in your pain, sending positive thoughts your way…
(( hugs )) Mimi
Hi Janice, I feel your pain. I have had TN for 18 years, but only diagnosed 3 yrs ago. About a month and a half ago, I was very ill with a violent cough which brought on the TN every minute of every day. I know you know what I was feeling. It was only by God's grace that I was drawn to a "walk in" medical group for help with my cough on a Sunday. I saw a nurse practictioner. In the middle of her exam, I asked her if she knew anything about TN. Shockingly, she said yes. She told me there was a new drug on the market, Horizant, which was specifically for intensive nerve damage pain after shingles. She said she knew of several patients with TN taking it and having success. I have tried tegretol and lyrica (and others) with no success because I can't take a high dosage due to the intense side effects. I called my dr and she confirmed the drug and I started 600 mg a day on 2/9/13. Side effects in the beginning were dizziness, short term memory loss, sleepiness, dry mouth, sadness. However, they were manageable. It's now 3/21 and I am counting the days that I am painfree. It's an absolute miracle!!! I have experienced 3 attacks since 2/9, but on a scale of 1-10, they were no more than a 3 and only lasted about 10-14 hrs each. Prior to this, I was experiencing attacks every week for 24-48 hrs or more... extremely intense....my life was defined around the TN...what an awful way to live for so long.
A week ago, I changed the dosage to 1 600 mg pill every other day. I am still experiencing the same relief, however the symtoms are much lighter - I am starting to experience a daily life that I have not had for 18 years. I also suffered with severe headaches and neckaches inbetween the attacks. These too, are gone. Horizant is NOT the same as gabapentin. It IS different. If you have not tried it - it certainly can't hurt. I have also increased doses of vitamin B (dissolving) and vitamin D. I also take magnesium. PLEASE give it a try. You have nothing to lose but pain. Hopefully, your surgery will heal and you will be pain free and pill free in the future. I am not brave enough for any surgery at this time.....
One last note -- Please pray and ask God for what you need - do not stop praying until you have your answer. I wish you painfree days and many many blessing from our Heavenly Father.
Janice,
Dont be discouraged its just 15 days post-op its much too early yet. The nerve needs time to heal, its been compressed for awhile from what you said.I am sure your surgeon has explained this to you. Dont forget uou just had a big operation, removing bone is extremely painful too. Everyones healing time is different. I was told by my surgeon i needed to be patient , his rule of thumb is a year before he would go back in for a re-do if needed. I hope this helps. Hang in there and I know its hard, dont be discouraged and let yourself heal.
My Best
Joanne
Thank you so much for your responses. I am trying to be patient, but so much pain for so long makes it hard. Many days I just don't know how I will get through another day. Your input helps me get back on track and I need that hope to hold onto.
I've taken Tegretol, Lyrica (3 different times), Cymbalta (2X). Now on Gabapentin (for about 1 1/2 years) and elavil. I'm sure there are more I am forgetting. I really want off the pain meds, but my husband (bless his soul) just keeps telling me to be patient. I definitely will ask my surgeon about Horizant. I've never heard of it before.