My MVD surgery was on April 20th. I have had a couple of severe epiosodes like before the surgery. I was wondering if anyone else has had this? Do I need time to heal before this goes away? I am having trouble at work and was wondering about going on disability? HELP! I am loosing my mind and so is my finance!
It takes a FULL year for you to get a good picture of total healing --- my October MVD kept me pain free till Feb. -- then 50% of the pain came back --- once in a while
Now it is June and 90% or more of pain is gone
I use a tiny dose of my trileptal and use lidocaine patches on my face - but very rare now!!
See if you can get cream or patch RX for your face to get thru work -- and you may have to take short-term disability -- but you cannot count yourelf disabled for life yet! Take a breath and call your doctor!
If you have not read the book "Striking Back" -- it has mannnnny alternatives for pain before or after surgery -- also go back up to face pain info and look into things like accupuncture etc..
Keep posting!
Thank you so much for the info. I was getting so nervous that the MVD didn't work. I went down on my meds a couple of weeks ago and had to go back up again, the pain was to much for now. I will try those patches also. I will be talking to my Dr. on Monday so your help now was greatful.
I am so tired a work. I need to get thru the summer. not time to train anyone now. Hopefully I can make it thru!
Again thanks and I hope this can help others also.
thanks for the help. It has been a year now and have been cutting back on my meds. I had to go back up due to pain in my teeth. I have been doing well until sinus problems. I read that sinus pressure can trigger TN pain. I have gotten depressed over this thinking it didn't work and I will be on meds forever! I hope not. How are you doing? I hope pain free. :) Take care.
Kc Dancer Kc said:
It takes a FULL year for you to get a good picture of total healing --- my October MVD kept me pain free till Feb. -- then 50% of the pain came back --- once in a while
Now it is June and 90% or more of pain is gone
I use a tiny dose of my trileptal and use lidocaine patches on my face - but very rare now!!
See if you can get cream or patch RX for your face to get thru work -- and you may have to take short-term disability -- but you cannot count yourelf disabled for life yet! Take a breath and call your doctor!
If you have not read the book "Striking Back" -- it has mannnnny alternatives for pain before or after surgery -- also go back up to face pain info and look into things like accupuncture etc..
Keep posting!
Hi Kristin,
I had my left sided MVD a month ago on April 9 th, the first 2 weeks I had no TN pain but week 3 was hell.
Pre-MVD I was on Tegretol, Baclofen and Dilantin , I managed to get down to 800mg Tegretol as I still have TN on my right side and that was my therapeutic dose. Unfortunately I started having shocks that increased and I couldn’t eat, drink or talk without setting them off…it was horrid. I managed to increase by 2 pills up to 1200mg and I am doing well, NO TN pain again.
I think my nerve was a little too traumatized from surgery as well as the big quick reduction of meds. KC is right it takes time to heal…
I found a cream called emla that is a Lidocaine mix and I bought it over the counter here in Canada. It comes with some patches but I haven’t used them. I just apply to my face. It works!
Don’t be discouraged…give it time. Hopefully you find relief soon. Our MVDs may or may not have taken away all of our pain but we won’t know for sure until everything has had a chance to heal.
((( hugs ))) Mimi
Hi again --- 1.5 years later -- having 2%-5% intermittent pain (more of a pain in the ass) that comes and goes but waaaaay better than life before MVD.
I just put lidociane on it and it goes away!Here is another prescription mix I saw on here
I found a compound from a patient who uses this cream for nerve damage in her shoulder. Here is the ingredients and percentages:
Ketoprofen (toradol) 20%
Gabapentin (neurontin) 6%
Lidocaine 2.5%
Baclofen (muscle relaxer) 2%
Cyclobenzaprine (Flexiril) 2%
I put it on my face twice a day and it is wonderful. I have a couple of pharmacies with compound labs that will mail it to you if you need help locating a compound lab pharmacy. I pray this helps some of you as much as it has me
thanks for responding back to me so soon. I will have to try the patches and will ask my pharmasict about the prescription mix. Thanks so much for that info. I think that would help me alot. I put the heating pad on my face and that seams to help. I can't work while holding a heating pad can I. I think I went down to fast on my meds. I will keep it like this for awhile and take it from there. I will let you know how I do with the patches. It helps so much talking with someone else who is going thru my same problem. Let us hope within one year we can all be pain and drug free! Take care.
Kc Dancer Kc said:
Hi again --- 1.5 years later -- having 2%-5% intermittent pain (more of a pain in the ass) that comes and goes but waaaaay better than life before MVD.
I just put lidociane on it and it goes away!Here is another prescription mix I saw on here
I found a compound from a patient who uses this cream for nerve damage in her shoulder. Here is the ingredients and percentages:
Ketoprofen (toradol) 20%
Gabapentin (neurontin) 6%
Lidocaine 2.5%
Baclofen (muscle relaxer) 2%
Cyclobenzaprine (Flexiril) 2%
I put it on my face twice a day and it is wonderful. I have a couple of pharmacies with compound labs that will mail it to you if you need help locating a compound lab pharmacy. I pray this helps some of you as much as it has me
Hi Mimi,
thanks for writing to me. I will try the cream called emla that has Lidocaine in it. I would worry about it near my eyes? I would like the patches maybe. I will ask my neuroligist about them.
I hope you are feeling relief yourself. I was doing ok until I dropped one more pill. Just need more time before going down any more pills. Thanks so much for the encouragement. That is what we are all here for. Because we understand what is going on with each other. Hope your day has been pain free. Take care.
Mimi said:
Hi Kristin,
I had my left sided MVD a month ago on April 9 th, the first 2 weeks I had no TN pain but week 3 was hell.
Pre-MVD I was on Tegretol, Baclofen and Dilantin , I managed to get down to 800mg Tegretol as I still have TN on my right side and that was my therapeutic dose. Unfortunately I started having shocks that increased and I couldn't eat, drink or talk without setting them off...it was horrid. I managed to increase by 2 pills up to 1200mg and I am doing well, NO TN pain again.
I think my nerve was a little too traumatized from surgery as well as the big quick reduction of meds. KC is right it takes time to heal..
I found a cream called emla that is a Lidocaine mix and I bought it over the counter here in Canada. It comes with some patches but I haven't used them. I just apply to my face. It works!
Don't be discouraged...give it time. Hopefully you find relief soon. Our MVDs may or may not have taken away all of our pain but we won't know for sure until everything has had a chance to heal.
((( hugs ))) Mimi