Problems after MVD operation for TN - any advice plse?

Hi Jill, sorry to hear about what you are experiencing. I had the same surgery in March of this year and i can tell you that my experiences were very similar to yours. I would like to tell you what i learned through this and maybe that can help you.

I still have full numbness on the TN side of my face 9 months post surgery. I was told that in my case along with MVD, the surgeons also decided to do a partial rhizotomy ( this is where they scar the TN nerve just a little bit so that it does not transmit pain signals incase the MVD does not work).  You may want to ask for post surgery dictation notes to find out if they did this procedure with you as well. ( Surgery dictation notes are given by a surgeon to his staff during surgery to record everything that was done and this issomething that a patient can ask for).

My surgeon told me prior to surgery that partial rhizotomy was not something that they would hope to do, but once they go in and they decide that the TN nerve is too tortuous and the MVD may or may not work, they make a decistion on the spot to also do a partial rhizotomy to make sure the patient has no TN pain post surgery.

In my case the PR procedure along with the MVD has caused the exact same symptoms you experience.  Constant pressure on that side of the face and numbness ( no feeling yet it feel like someone is pulling that side of the face),  Pressure in the eye and the ear.  Tingling / burning sensation on the TN side ( i won't call this Ghost pain because Ghost pain according to surgeons implies that it is psychological and not real and the burning sensation is very real and not my imagination). There is no real medical answer for all of this. I gather from talking to several neurosurgeons that because the nerve has been disturbed or slightly damaged to preven sending pain signals, it is now only able to send incomplete signals to the face and this can be felt in several different types of sensations to each individual.

As far as the surgery scar and site healing, it took my almost 7 weeks post surgery before i could get more than 2 -3 hours of sleep each night. I had headaches from brain swelling, surgery site pain, fluid accumulation at the surgery site and even a micro brain stroke 6 weeks post surgery. All of this healed around 2.5 months post surgery except for the numbness and the burning sensation discussed earlier. I am told to expect numbness etc to last 1 - 2 years and if it doesn't go away by then, it is most like permenant and as you said , the price of getting rid of the TN pain.

I would say you should visit a dentist if you bit your tounge and need to take care of your wound, but most will know nothing about TN and you should not get any teeth pulled or dental work done until you speak to your neurosurgeons.

This post was long but i am hoping it helps you a little as i was very frustrated in the months post surgery, looking for answers to these same issues and nobody seemed to know. The surgery after care from the surgeons was close to zero! Their only answer to my questions was " well it's better than having TN pain right?"

Hello Jill

This sounds a bit grim and I am sorry that you have been hsving these problems. All I can do is sympathise at the moment because I'm waiting to go in for MVD in early 2017. However there are loads of people on this site who have gone through MVD, many have had some transient neurological and related problems but the great majority seem to have resolved with time (some months). Are you in U.K? Your neurosurgeon should be taking a bit more care of you than seems to be the case from your posting.

I hope you get some useful info from forum members. If you're in uk then you should look at the TNA site and they have very good helpline facility and will answer queries on all aspects of TN.

Good luck and keep us informed of your progress.

Cheers

Big D

Jill55165,

Numbness not on all of scar but where titanium plate was put on skull, I cant sleep on sude were surgery was left side , can only sleep on opposite none surgery side.

I do get a runnning feeling intop of head sort of like gaving fly bothering me intop of head.

I do hope all the problems that you are having will also go away after we are healed for my MVD surgery.

I'm going to get into a pain management clinic pretty soon right now I am doing physical therapy to try to loosen up the muscles are tightening up something

A bit of a slight little pinstick sometimes, I also get pain in gums but not as bad as b4 surgery new neurologist - might be healing because my Neurosurgeon's P.A., said surgeon cut my muscle even he never told me this even in his notes it is not their according to other doctors who have read his notes.

My new Neurologist cant find it in his notes, neither can he find this MRI my neurosurgeon says was done to shiw I had no stroke, but new Neurologist

Did blood test to see if I had a stroke and it showed I did not have one.

I do get a few fly like feeling on my Cheek as if a fly landed on my face but not ever day.

Numbness in right hand , numbneess, on side of head where surgery was done is beginning to subside, labia is still numb but not as bad as first came home from hospital, leg not numb anymore unless I sleep with leg on top of numb leg,

Oh, I just found out that I had clear glue on spot were plate is on, skull and this is something syrgeon didnt tell me about.

My primary care physician said this wasn't in surgeons notes.

Every day is a mystery to me, I just wish doc was up front with me, oh, and I am still getting slight headaches.

I have been taking my medication my Gabby 900mg plus 150 mg of oxcar

before I go to bed but now I have bn taking

It if I feel the slightest, pinch or pain I take them b4 bedtime.and it has been working

It was my opthamologist and my opthamologist- surgeon, not at hospital where I had my surgery, who told me my nerves were damaged and it was my surgeons P,A,. Whi told me he cut a muscle in my neck, doc has not admitted it yet, neither does he mention he cut muscle in my neck, he did finally mention he had to cut to move muscle out of way after I firced him to address why I was getting muscle spasms in my neck.

I do belieeve once muscle spasms are over all will be well done.

I wish surgeon had addressed my doubke vision when I was complaining about it while in hospital instead of constantly trying to ignore my questions about, this man never let a opthamologist come and check my eyes while I was in the hospital from July 27th 2016 until August 8th 2016.

I am grateful and I thank God that my neurosurgeon got rid of my shocking and shocking was the worst I just hope when my muscles get tight that the slight twinges of pain that I have in my gums will go away.

I am sure that that's why I am getting this slight pain, its because of the muscles not being tightend. Time for Gabby900mg/ Oxcar150

Off to nity nite.

God bless us and keep us and give us peace