Hi everyone! I am officially scheduled for my MVD on June 25th with Dr. Michael Lim from Johns Hopkins. I am now wondering how to come off my meds after surgery. I am on a lot of meds currently, which are mostly managing my pain, but feel terrible. I just want off these meds and was discouraged to hear my neurologist say we would talk about taking the meds down a month after surgery. Thoughts?
Everyone is different as a snowflake here --- I was in a remission like state -
so I had weaned off my one med by the day before MVD..... Many here do this to KNOW when they wake up that it worked.
There is another school of thought that says stay on them till after surgery.....
Maybe ask Dr. Lim what he has experienced - since he does the surgery and knows the outcomes ----
You've got one of THE BEST doctors for MVD -- I hope everything goes smooth sailing!!!
Hi,
I just had my mvd April 9th, my neurosurgeon kept me on my meds until after my surgery as my pain was so out of control and I was on high dose meds too. So at about 5 days post op we started weaning. I managed to get off both my Baclofen and Dilantan by week 3 and had reduced my Tegretol from 1600mg to 800mg . And I had hoped to stay at 800mg as I have bilateral TN and that dose worked well for me before my left side became resistant to meds.
BUT, at 800mg my mvd side started getting pain, electric shocks…it was horrid.
I added 2 pills back to 1200mg and I have been pain free since.
I won’t wean anymore for a few more weeks to allow my nerve more time to heal.
I have had no TN pain at all except that week, I’m 6 weeks post op and super pleased with my results so far, just low energy.
All the best of wishes for your upcoming surgery,if you have any questions feel free to message me.
(( hugs )) Mimi
Following my MVD at the first post op visit, I was given a schedule for coming off my meds. This schedule included a note on how to alter the reduced dosage if any pain returned. I did stretch out the time for reducing the drugs, mostly out of fear.
By the time I was done, I had been through withdrawal symptoms that included insomnia, restlessness and feelings of creepy, crawly skin. But within a few days of my last pill, I was fine. And NO pain! I should mention that I skipped the step of going to a neurologist and went directly to the neurosurgeon for diagnosis. It was my neurosurgeon who prescribed the meds prior to scheduling surgery.
Good luck to you.
I too was taken off my drugs slowly following my MVD. Before surgery I was on 1000mg tegretol and 600mg Gabapentin. On about day 4 I was taken off the Gabapentin and reduced the Tegretol to about 600mg. A couple of days later I had a couple of twinges of pain while brushing my teeth (which is not uncommon). My neurosurgeon told me to stay on that dosage until I saw him again, which was 5 weeks post surgery. After this I was told to reduce by 100mg every week, so after 6 weeks, I was completely medication free. The date of my last tablet was 10 April and so far I have had not one bit of pain! I had a little bit of insomnia, but nothing too bad. I totally believe that coming off slowly is the key, and leaving it a little while before reducing too much, to give the nerve time to heal. I have also been taking vitamin B12 since 5 weeks after surgery. Not sure if that helps, but its worth a go!!