How long to recover from MVD

1

I have finally bitten the bullet and am booked in for MVD on 20th February...Now apart from the usual things affecting any surgery you have...Is there any guide lines as to how quick you recover from this surgery.... I am hearing between 2/3 weeks and 1 year...I run my own business and if I dont work..I dont get paid....So this is quite a big thing for me....I have heard that my surgeon is the best in the area ( I am in SW France) but still no one has actually sat me down and explained anything to me....well he tried...but he dosnt speak English....and my translater got a bit lost in the technical aspects....so we left it alone...Of course I am scared something is going to go wrong...who wouldnt....and I have tried to explain to him I am alergic to metal...well nickel in facr..so really need more information on the metal plate they put in your head...To be cured of ATN then get alergic reaction to the plate would be more than I could cope with....But what I really want to know is this...when can you actually lead a normal life after the surgery...Do I have to be careful about swimming...excersise etc...and for how long....because if the effects of the MVD are worse than the actual complaint its supposed to be curing...then I will have to again re-think....

Questions...questions...like when can I travel back to Spain in a car...when can I start work again....my profession is quite stressful..I am an FX traders and Stock Market trader and I write reports to worldwide organisations....I have coped doing this job with ATN and taking a cocktail of 900mg Gabapantin and 150mgs of Amiltriptaline....and also various strong intravenous pain killers that I put in water and drink when then pain has become too much...BUT...I cope....I dont want this operation to debiliate me more....I have an extremely high tolerance for pain..so its not that thats is bothering me...It is more like feeling back to normal...even with pain...but able to lead my normal every day life....any help at this point would be great....as I change my mind about the operation at least 50 times a day....which is not helping my concentration at my job or in my personal life.....thank you for any feedback

2

Hi Carol — I just had MVD 7 days ago and I feel pretty good. I too am self employed, same thing, I don't work, I don't get paid so I really struggled with planning my recovery. Also, I have ATN but decided on MVD for a few reasons: first off, I'm 28, very healthy and fit, also we only have a $250 co pay I was able to go the best surgeon in our area.

Here is what I know...

- the plate in over my skull is titanium

- 7 days out, if I had to I could prob work 4hrs a day if needed on the computer (I'm a graphic designer), but I'm not only because I planned not to

- I have planned to take 4 weeks off (I heard 4-6 weeks was a good recovery time)

- I spent 1 night in the neuro ICU and 1 night in a regular recovery room (org they told me 3-5 nights but I was up and ready to move and was happy to be in my own bed)

- my incision pain really stopped after about 5 days, now I am just taking tylenol or IBprophen if needed

- the amount of hair they shaved was much much smaller than I thought and my incision is only about 3"

- I think I am prob cleared to drive sometime next week

- I still am having facial pain but he's lowered my dose of Lyrica and I'm staying on my previous dose of Tegretol for the next 4 weeks and then we'll re-evaluate then ...

- I have heard that it takes people a weeks/months for their facial pain to go away completely ... but that it gets better and better everyday so I'm personally hopeful for that ... and better is better than nothing. I'm fine living with some pain forever if that is the case.

- regarding exercise, I do yoga and pilates and I'm planning on going back to do those in about 2 weeks ... I think being physically fit to begin with really helps with recovery

Anyhow, those are all of my thoughts to tell you — feel free to message me if you would like. I really feel like you should move fwd with it. I am 100% happy that I did and I feel much better than I thought I would after 7 days. I'm just watching lots of movies and napping. Good luck to you!!! Cheers, Jessica

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wow ...thats sounds as though you had a really good surgeon...I must confess...my surgeon is supposedly the best in the region...but I am in France...and he dosnt speak english...so we have a problem straight away....I cant actually talk to him...and discuss with him...because not only does he not speak english...he is typically french male....arrogant and cold....neither do I like in a person....but technically brilliant I have heard...However he does not know my medical history....and I cant get it across to him...

He also told me..via interpreter that I would be up and about by 5 to 7 days...I would have a headache...but that would pass....He said it would cure TN pain...but not ATN pain....I didnt tell him I had shingles on my face last year...because I didnt think it was relevant...but now I know it is...so he needs to be told that....but he is the only one who does this operation here...He is a proffessuer and he does not trust anyone else to do this type of surgery....Im all for that...he does 2 or 3 per month....has a 95% success rate..good enough for me.....I know its not a cure for ATN....and I am 55 and although apart from ATN and the related side effects of taking drugs for that...I think im quite healthy....well I am healthier now than I will be in 5 years.....so I have a bit further to go in the research dept...before I commit...but I really thank you for your story...and I am so pleased you feel so well after it....I can only hope my surgeon is as good as yours ha!! take care and keep up the good work of getting well again xx




4

Carol: I had my MVD 2 years and 1 month ago. I was suffering from both TN type 1 and ATN. The MVD took care of both! My recovery was 4 weeks then back to work and right into rotating shift. I have more issues from the shift work! . No pain at the wound site, no headakes. I was in no pain when I left post op to ICU and sang "Lida Rose" to the staff moving me to ICU. The wound did get itchey from time to time, and it pushed out the last bit of stiching about 6 months ago. I have regained about 93 to 94% of all sensation in the right side of my face. The Surgen did not think it would get better than 80% because of the long time I dealt with TN (About 20 years) 3 to figure it out and 17 more before MVD.

It took about 3 months for the sound of sloshing fluid in my right ear to go away, and my surgen use artifical bone instead of titaneum. No issues with sever cold that way. Worked great! (I live in the UP of Michigan and it can get very cold here, some times down to -51 deg F below zero! in the winter!)

If my TN comes back, I will be scheduling an MVD surgery toot sweet. If you have any other questions let me know.

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Thanks Tom for your reply..How wonderful that you had such sucsess with your MVD....I wish my surgeon used artificial bone instead of Titanium...actually I wish he could speak English so I could ask him about artificial bone!!!! I am alergic to Nickel and this is used in surgical titanium...I am at the hospital 2mrw for some ;ast minute things..and if I cannot communicate I am going to cancel the operation and wait until I get back home to Spain so I can talk to a surgeon who can speak English....I am really pleased for you tho...Its a horrible thing we live with...and to hear someone has actually beaten it brings hope to us all...xxx

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Hi i hear your questions. I had MVD surgery on the 28 November 2007. i had no idea what i was expecting with my surgery at the age of 34.

Write a list of questions up that you want to ask your Dr before the surgery. the more you are informed the easier it is for you afterwards. Be aware of the procedure and wat to expect. eg you may be catheterized or have extra dints in your head from where they may have had to use a halo (to hold your head still)( i wasnt told that i would have staples on either side of my forehead from where the halo was screwed in so when my hubby saw me wheeled into the room he thought they dropped me lol) it really stressed him

One thing we all have as TN sufferers is a high tolerence to pain but the pain after your MVD is different. Make sure you stay in hospital for upto 4-5 days min. That way you can be assisted with medications of a higher level and help manage ur pain. saddly i was out the next day so not even 24hrs after my opp.

the thing i found is on day 2 the pain in my neck and head was mind blowing. I could not get comfortable, amazingly so i found laying on my stitches/staples the most comfortable (this has also been said by other MVD patients) You become exceptionally sensitive to noise and can also get a bit motion sick when you first start walking around, so make sure u have someone with you all the time.

have a good home care plan in place with with someone staingy with you that you can trust and understands your pain thresholds. You may need to have someone you trust with your bank details so they can help by paying your bills or do any shopping for you. Depending on your laws you may not be legally allowed to drive for 6 weeks (sometime the vibration is to much for you anyway). An your discharge make sure you have a couple of pillows in the car so you can pad urself you.

Also speak to your Dr about some laxative or something similar, due to the high does of codene you may be put onto can make you constipated, so you dont the that pressure either. Dont expect to come off your medication straight away you have to reduce them gradully ok

i think i have filled up this page enough but if you have anymore questions please feel free to ask. I wish you well and good luck.

Ree

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Thank you so much for your reply...I have decided against MVD at the moment for a number of reasons....but the Nurosurgeon is going to try another procedure, much less invasive and recovery time only a week at most...He apparently is going to go up through my mouth...and through my upper Jaw....I havent seen this operation on any site...to be fair I dont even know what is is called....but he seems to be quite confident with it...well its a 50/50 chance it will work...but if it dosnt I can always reschedule the MVD at a time more convenient to me...I dont actually live in France...but was here for three months when the TN 1 and 2 mounted a massive breakthrough pain for 72 hrs and I couldnt not get it under control and ended up in A&E....so saw nurologist had MRI...was told viens and arties wound round nerve...and MVD was the option....well after digging..researhig and more digging didnt feel it was for mew at this point because I need to go home...and its a long 16 hr drive back to Southern Spain where I live...I havent ruled it out totally...but if he can do another operation which could work for a while..then Im willing to give it a go....Its booked forMonday...same day as MVD was...so I hope it goes well....thank you once more for replying....take care ....Carol

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Carol: Find out exactly what procedure that the surgen wants to do. Some of the procedures for TN, and if they do not work, can cause damage to the 5th cranial nerve such that if MVD is tried after the first procedure the MVD outcome is not as good. The book "Striking Back!" is a good point to start cross referencing for checking this out. Tom
Carol Harmer said:

Thank you so much for your reply...I have decided against MVD at the moment for a number of reasons....but the Nurosurgeon is going to try another procedure, much less invasive and recovery time only a week at most...He apparently is going to go up through my mouth...and through my upper Jaw....I havent seen this operation on any site...to be fair I dont even know what is is called....but he seems to be quite confident with it...well its a 50/50 chance it will work...but if it dosnt I can always reschedule the MVD at a time more convenient to me...I dont actually live in France...but was here for three months when the TN 1 and 2 mounted a massive breakthrough pain for 72 hrs and I couldnt not get it under control and ended up in A&E....so saw nurologist had MRI...was told viens and arties wound round nerve...and MVD was the option....well after digging..researhig and more digging didnt feel it was for mew at this point because I need to go home...and its a long 16 hr drive back to Southern Spain where I live...I havent ruled it out totally...but if he can do another operation which could work for a while..then Im willing to give it a go....Its booked forMonday...same day as MVD was...so I hope it goes well....thank you once more for replying....take care ....Carol

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Hi Tom...funny you should mention the 5th cranial nerve...thats is exactly the one they want to try and free....I do know that much...because this is what the MRI showed up....the 5th cranial nerve is twisted with veins and the main artery leading to the brain stem.....Funnily enough this French Proffessuer who is permosrming the surgery did say it wasnt the best proceedure to have for this particular nerve...but he also said that he was not going to harm the nerve...therefore if I needed a MVD after this..he could perform it and it would have as good as a sucess rate as if the previous proceedure hadnt been done.....Hes such a great surgeon...comes highly recommened even from Nurosurgeons is Spain and UK...and is the director of all surgery at the Limoges Teaching University Hospital which is where I am going.....He is going to retire within the next year...so I need to make a firm descision on wether to have MVD if this other one dosnt work...because I want him to do it.....He has been treating TN ans ATN patients now for over 25 years......does about 2 to 3 proceedures a month....and people come from all over France to see this guy....so I really couldnt be in better hands....Well...its too late now anyway...Its all booked for Sunday......and I have to try something...anything....to get me off these drugs and away from the pain.....widh me luck ha!! x

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Carol: Sounds like you have the best doctor for the job! I hope this takes care of the issue and makes you pain free! I am pulling for you!

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Thanks Tom.....It would be great to be pain free and drug free....Its weird isnt it..because unless you actually have this condition you cannot explain to people how awful it is...Iv given up now and just make an excuse that iv got a migrane if I cannot make a night out/party/ anything really.....The times Iv had to leave a restaurant or theatre or actually anything because the pain has kicked in...I hate it....I think this is the absolute pits of a condition....so am banking on this Proffessuer to help me start living again without the fear of this pain coming on at a moments notice....will let you know how it goes after the Operation...take care

Tom Johnson said:

Carol: Sounds like you have the best doctor for the job! I hope this takes care of the issue and makes you pain free! I am pulling for you!

12

I had an MVD in South Africa 8 weeks ago, it went brilliantly. I was in hospital for 5 days and I spent a month taking it very easy. The incision was bigger than I thought but the hair cutting was brilliant and covered it all. HOWEVER my pain is returning. I had both types of TN and one has not returned (dont know which is which) but I dont have the sharp pain that reduces me to nothing and lasts less than a minute - that hasnt come back but the pain that affects my speech, eating, tooth cleaning, washing my face etc has returned and I want to cry. I saw the neuro yesterday and today I am back on Tegritol whcih I have not taken for 8 weeks and I hate the stuff and the pain is going.

Is this pain back for good - sorry I keep on moaning but I honestly thought my pain was gone for ever. I had a Rizotomy 2 years ago and that lasted 8 months (just for those who have thought about doing it) - far less invasive.

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God I am so sorry for you.....To think you have gone all through that only to have the pain come back again....That would really annoy me....Do you think having another MVD is the answer...some people on this site have had three....sadly if the first one failed I dont think i could put myself through another 2 MVD's....even though the pain kills when it kicks in.....Have you tried Amiltrytaline combined with Gabapantin. I found this worked for me for 3 years...It has only been in this last year, after 2 bouts of Shingles on the face that the pain has become more frequent and harder to control....There is a new pill as well called Lyrica....I cant take that because I am alergic to it...but I have heard that it can be really helpful and not ave the nasty side effects of Tegretol....you take care now
Eileen said:

I had an MVD in South Africa 8 weeks ago, it went brilliantly. I was in hospital for 5 days and I spent a month taking it very easy. The incision was bigger than I thought but the hair cutting was brilliant and covered it all. HOWEVER my pain is returning. I had both types of TN and one has not returned (dont know which is which) but I dont have the sharp pain that reduces me to nothing and lasts less than a minute - that hasnt come back but the pain that affects my speech, eating, tooth cleaning, washing my face etc has returned and I want to cry. I saw the neuro yesterday and today I am back on Tegritol whcih I have not taken for 8 weeks and I hate the stuff and the pain is going.

Is this pain back for good - sorry I keep on moaning but I honestly thought my pain was gone for ever. I had a Rizotomy 2 years ago and that lasted 8 months (just for those who have thought about doing it) - far less invasive.

14

Hi Carol. I had MVD on 9/30/2011. I spent one night in the neuro ICU, then 2 days on the regular neuro unit. Nausea (probably due to inadvertent withdrawal from gabapentin and carbamazepine as well as from anesthesia) was the worst part, but only lasted for a few days. I experienced a lot of pain in my chest which was far worse than my head. No one knew what caused it, but it was probably musculoskeletal. I only took the pain medication for the first 2 nights home, then just used Tylenol.

Two weeks after surgery, I went on an hour-long hike in the woods with my husband and our dogs. I agree with Jessica, that being physically fit really helps recovery. I felt really fine. I went back to work at 4 weeks. I finally weaned off all the anticonvulsants about a week ago, and I feel great. I never had facial pain after surgery. My head still itches and feels sore at times, but my surgeon said it might. Maybe the titanium patch will let me predict changes in the weather!

Anyway, I'm so grateful that it seems to have worked, and glad that it's over. Best of luck to you!

15

Thank you so much for your reply, my pain is far less now that I am back on Tegritol but I am very down at times. I am not considering another operation. It was far too invasive, it took years in energy away from me, I now feel like an old woman. I must just get used to tegritol and the condition again. I also cant take Lyrica - I have not heard of the others but have drawers full of stuff they have tried.

Thank you again and I will keep logged in.