MVD on both sides!

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Following my last appointment with my Neurosurgeon on Tues, he showed me the results from my recent MRI and MRA circle of Willis scans. These had showed blood vessels on both sides resting on the TNs (as i suffer with bilateral TN), the right side been the worst which amazed me as the TN first began on the left! The surgeon wants to do the first MVD before the end of the month and said that the timescale for doing the other side is anywhere from 4 weeks to 6 months. Has anyone else experienced MVD's on both sides and if so how did you find it, I'm terrified to say the least of having one MVD let alone two. Any advise etc would be most welcome!

Thanks

Mandy

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Please can someone reply or answer this?

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Mandy,

I do not have experience with bilateral TN. I have, however, had a successful MVD surgery in July of this year.

I wrote about it on this site. Its easy to find.

If you have an experienced surgeon ( one who has done many, many MVD's) and an experienced hospital I would expect you to have a good outcome and prognosis.

It is perfectly normal to feel a great deal of anxiety but please DO NOT be terrified. They will fix it and you stand a VERY good chance of being pain free.

The alternative, increased medications and continued pain IS ( and was) terrifying to me.

There is a great deal of support here and I am advocate of exploring and considering MVD surgery for TN

When successful ( 90%) , it fixes the root cause. Very unfortunate that you have two nerves afflicted that required MVD surgery but after recovery from the first I believe the second would go just as well.

You will read stories of peoples "bad outcomes" with MVD. They exist and I feel for, I really do, the people who it didnt work for or had complications. However while they can be in the majority as posters on TN "boards," they are, in actuality, a minority of MVD patients as a whole. Its human nature for more negative experiences to be relayed than positive. Please dont take it as a "dig" at the many people who continue to suffer from TN. NO ONE who has ever experienced TN pain would EVER have anything other than empathy for others similarly afflicted.

My position is that I don't want people to be scared of at least exploring MVD as a solution based on a posting about a bad MVD experience. ( a few postings certainly caused me some anxiety)

I just want to give some hope to people, like you, for whom MVD gives you a shot at a normal life.

Let me know if I can help. Hope you feel better

Rick

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Well put Rick. We do see negative outcomes to treatments and surgeries here simply because most of the people with positive outcomes just move on and enjoy their lives, which is fine and understandable too. You are to be commended for sharing as much as you have to help members here, so many have read your discussion!

As you say, Mandy does face a challenge, however knowing her as I do I really feel she can overcome this hurdel and look forward to a new phase of her life. I will miss her if she follows the normal opt out route though!

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Hi Rick,

Thank you for your very kind and informative response, it was very much appreciated. Following my post on here I did find the other post which you had written, which again I found very interesting and informative. As Jackie said it was very good of you to write such a piece for people who find themselves facing this very difficult decision.

I think I do have a very good Neurosurgeon, he is based at the James Cook University Hospital in Middlesbrough (England) and a guy called Fred Nath assists in these procedures, who is apparantly the head of this department, he also has his own website (and as a side line he also writes war stories-not that you probably wanted to know that but I found it quite interesting ha ha!). When I went for my last MRI the Radiologist said that my Neurosurgeon was one of the best in the country, so I am sure hoping that he is right! Mr Prasad (I will remove names if I am not supposed to use them and will apologise now if I am not allowed to!), has been doing these procedures for 16 years now and I'm sure he said that he has done approx 200 of these procedures during this time, but I could be wrong on that as I don't always remember things correctly - medication unfortunately! But he said that I am only the 2nd person that he has come across who suffers with it on both sides. This has worried him, and he said that he has taken advice of collegues and has been advised to only do the 2nd side if things go right on the first side. He made it very clear to me that I am doubly at risk due to needing 2 MVD's. He was very honest of the risks which these procedures hold including clearly stating that it although it has a 97 per cent sucess rate that he can't say that I won't be the one who either ends up totally paralysed, with stroke like symptoms ar even the one who dies. As you can imagine at this point I think I went white as I grabbed my husbands hand, however, I did also appreciate his honesty in a strange kind of way, as it is a big decision to make.

Like you, I cannot face a lifetime of pain and further medication. Poor Jackie knows too well (due to the many of emails I have sent her) that I cannot tolerate the medication, therefore my meds cannot be upped, I have already lost my job through this which I have/had worked very hard at! So really if this procedure offers me the chance to function as I used to and also gets rid of this horrendous pain then I think I don't really have any other options other than to trust my Neurosurgeon and go ahead with the procedures. I don't think it has really sunk in with me as yet that this will be happening at some point this month but my husband is kind of in bits, he is so, so worried and trys to keep his feelings hidden from others! However, I am sure that everthing will be fine and that I will come out smiling at the other end! Of course, I will keep you posted, if thats okay.

Just a couple of questions for you, if you don't mind is, how long were you in hospital for and what sort of things were you allowed to do/not do upon your discharge from hospital, as I have read different things and just don't know what to expect!

Hi Jackie, firstly thank-you for your previous post, it was very kind of you as both me and Simon feel as though we have been living on eggshells since Tuesday! Secondly, I would like to apologise for not responding to bothe Rick's and your post until now but I've had little Jack since Friday morning as Carrie is away for a few days, I've got him until tomorrow night and I'm absolutely worn out ha ha! (not used to looking after a 10 month old baby for so long and have forgotton how much hard work it is!) We took him to Whitby y'day and didn't get back until late and once I'd got him to bed I was to tired to think and today has been non-stop with him, finally though, I have got him bathed, fed and to bed......bliss! Although I have really enjoyed having him and it may be sometime now before I am able to have him again, so I wanted to make every moment count - I think you know what I mean about that! The thing that upsets me most about these procedures happening now is that Jamies baby is due next month and Rosie wanted me to be at the birth and Carries second baby is due in Dec, I really want to be able to help out etc when these babies are born, and as you know when Jack was born I was like a Zombie and couldn't be trusted to look after him......it looks like I'm going to miss out again on the very early stages of my next 2, yes 2 grandsons! But on a positive note, hopefully, I'll be able to function normally in the long run and enjoy seeing them growing up without feeling so sedated all the time!

Lastly, I do hope that I do not become one of thoise people who just opt out, as I have found this site very helpful and informative and you have been a true star to me and someone I will never forget, even though we have never met! I do hope that one day we will meet and that following my MVD's that I can become someone like Rick who can tell people on here of there sucess MVD stories.

Thank you once again to both of you

Mandy : )

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Awwwww, thanks for the note Mandy. I know full well you have been to hell and back and do truly deserve a let up in your awful TN merry go round. we do put a lot of work into our children and grandchildren are a just reward for that effort! I long to hear how you are enjoying your three boys. You need to give yourself time to heal. I once had six months out of action and I have to tell you it went all too quickly, you will be surprised. Your husband is a sweetheart and I know he will look after you.
Much love Mandy xx

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Mandy, I am pleased that they found the cause of all your pain. Hopefully this can now be dealt with. I know this is easy for me to say as I am not the one who is having to face the surgery and the risks involved. You have been through so much and it has effected your quality of life so much that I think an MVD is the way forward.

Mandy I will be thinking ,praying for you and your recovery my dear friend. xxxx

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Hi Jackie and Elaine, Thank you both so much for your messages, they do mean a lot to me. I'm sure things will go okay but i just wish that I had a date now so I can get things organised, I'm jumping everytime the phone rings as they said that they may ring me with a date rather than sending out a letter. I'm so looking forwardc to the day when I can just jump into the car whenever I want to go anywhere rather than relying on others to take me places, this sounds such a little thing but to me it would be like climbing the highest mountain!!!

Many thanks and love to both of you xxx : )

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Mandy, I know you just want life to return to normal, to have your life back without depending on others. One thing is that you will never take life for granted again and you will appreciate the simple things others take for granted.

Hugs for you, let us know when that phone call does arrive! xx

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You are soooooooooo soooooooooooo right Elaine and don't worry I will keep you posted : ) xxx It's just a shame that you live so far away as it would've been lovely to have met up for a coffee and a proper chat, but hey ho, that's just life ha ha!

Hugs sent back to you to and I hope that you are doing okay yourself xxx

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I will make myself a nice cup of coffee when I sit down to read all about the success of your MVD and I will raise my cup and say cheers Mandy well done you deserve it! xxx

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Awh. thank you Elaine; you and Jackie have been real bricks to me throughout this whole experience and I will never, ever be able to thank you both enough for the support which you have both given to me! : ) and hugggs to both of you xxx

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Hi Mandy, I just went to see a neurosurgeon today to see if I would be a candidate for an MVD.
I have bilateral TN.
My pain starts out on the right side ( without meds) and resembles tn1 , electric shocks, triggers etc. while on high doses of meds my breakthrough pain presents on the left.
More atypical with constant boring pain in my teeth and icepick in my ear.

Neurosurgeon said he would do MVD on my LEFT side, as that is what is bothering me most right now.
He said he’s never done MVD on a patient on both sides, but perhaps I would be first.
In my Own research I’ve cone across a few people who have had MVD on both sides.

I’m just not sure about the whole thing, I need time to think about it all.
I wish you the best of luck with your upcoming surgery and pray you will finally have relief!
((( hugs )))

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hi mandy, i had MVD last may 2011 on left and im having MVD on right in nov 2012. Jacqueline

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hi mandy, just out of curiosity, do you or have you had any MS symptoms at all? mimi and i both have bi-lateral TN as well as MS symptoms for years. I certainly hope you dont but im curious. Jacqueline

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Hi Mimi, thanks for your post, it's nice to speak to someone who suffers with the pain on both sides, I think you're the first person that I've actually come across who does.....although I am so sorry that you do as it sure is bad enough having it on one side let alone 2!

The pain you describe is very similar to what I get although, my electric shocks, initially, were on my left side, now I never know where I am with it, it's so unpredictable so sometimes I seem to have problems describing what sort of pains I get as it seems to have a mind of it's own! (no pun intented!). I do get a lot of the constant boring pain on my right side and so much so recently I did think I had another abccess but the dentist told me I didn't!

My Neuro said I'm only the 2nd person he's come across in 16 years with bilateral TN but he didn't say whether or not he'd done the MVD's on the other person......a question I would now like to ask him as I nevr thought to ask before. He initially told me at the end of July that I'd need the MVD's but then he wanted me to have another MRI and then requested an MRA circle of willis, so I think I'd got it in my mind that he hadn't found anything and would therefore suggest something else, but that wasn't to be the case.

I must admit it is a big decision to make and one that we haven't taken lightly. But in my case I don't think I really have any other option as I just can't tolerate the meds and therefore, I just can't function 'normally' and have already lost my job through this!

I'm sure you will, in time, make the right decision for you but as you say it's a decision not to be rushed into!

Please keep me informed of your decision and the best of luck to you too. : ) (((hugs)))

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Hi Jacqueline, No, I don't have any MS symptons, although my GP was initially worried about this but my first MRI showed no signs of MS which was a blessing. I am deeply sorry though that you and Mimi have to suffer with both. My GP initially told me that TN can be one of the tell-tale signs that someone has MS and I have read on here of so many people who suffer with both, this world can be so cruel at times!

How did you find your first MVD and out of interest what was your recovery like? I am now trying to get my house into order before I have mine and over the past couple of weeks I have decorated my bedroom, one of the spare bedrooms and now I'm on with the living room.....everyone is saying that I'm just trying to keep my mind occupied away from thinking about the forthcoming MVD, and to be honest, I think they are right as the rooms didn't really need doing, but I guess this is my way of dealing with it!!!!

I wish you luck for your next MVD in Nov and keep us posted as to how it goes ! Mandy : )

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Haha Manday you will have lovely rooms to sit and recover in when you have had your MVD, there is a method in your madness! xxx

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hi mandy, my experience with MVD was like this. im sure everyone has completely different stories so dont let any one persons experience scare, sway or decide anything regarding your own. i do not regret doing it as i had a good year of about 80% improvement or more plus i was able to get off 1400 mg of tegretol at the time. so before my sugery i was secluded to my bedroom, couldnt talk, i had to write to communicate. i basically only got up to go to the bathroom, get cleaned up and thats it in the weeks before. after the surgery, i awoke with so much pain it wasnt funny. i was crying screaming it didnt work, it didnt work. the nurse came and upped my pain meds anf explained that my head would hurt from the surgery and my TN might be worse because they were touching everything inside. it did settle down and i only had pain from the surgery. i weaned myself off tegratol in a few weeks and i could do everything i did before i got TN. i went camping 3 time in the summer and spent so much time with my family. i still had a few triggers but they were very brief and i managed with out meds. i was so elated i barely went in the house. im a real outdoorsy person and was making up for lost time. the winter was still not my friend but still better. the pain i did have was just as painful as before but it was the frquency that had improved. i went from 24-7 when awake to only occasionally. keeping in mind i was still dealing with the left side which was manageable with no meds but increasingly got worse and i had to start tegretol again about 6-9 months ago. im up to 1200 and i am trapped in my home again. i only go out if i have to. i recently started on percocet as needed if i do want to go to a social event which is very rare, but i do have a wedding on sat which i will go, even though i will be high and my husband will have to help me if needed. i will still have pain and i have to wear ear plugs out of the house 100% of the time for the noise sets it off. unfortunately in the meantime my left side has returned and is slowly getting worse. so i had about 1 and 1/4 years out of the surgery. yes im very disappointed bu do not regret it. it does make me nervous to do the other side, but my surgeon would like to try and he has had many success's with bilateral and people with MS as well. after the surgery we will address the left side again but with a different option. i dont want to go back into the same side. he mentioned a rhiziotomy of some sort. i forget all the details, but will discuss later. i dont have any residual problem from the surgery except a small numb spot behind my ear which only feels weird when its ichy and i cant feel it when i scratch it. every one has a different outcome because everyones TN is different, so there are no guarantees. my decision to do the MVD was that it wasnt getting any better by doing nothing at all, so i took the risk to possibly alleviate the pain and improve my quality of life. i dont know how bad yours is now but dont wait till it gets that bad. it took 6 years for dx for me so it was pretty out of control by the time i was given any options. good luck with any decision you make and only you knows whats right for you. like my surgeon said to me. even though he knows TN causes excruciating pain, but he cant feel our pain so only we know when enough is enough and we need to try something. when is your MVD again? i will pray for you if thats okay, and for a very possitive outcome. sincerely, Jacqueline

Mandy said:

Hi Jacqueline, No, I don't have any MS symptons, although my GP was initially worried about this but my first MRI showed no signs of MS which was a blessing. I am deeply sorry though that you and Mimi have to suffer with both. My GP initially told me that TN can be one of the tell-tale signs that someone has MS and I have read on here of so many people who suffer with both, this world can be so cruel at times!

How did you find your first MVD and out of interest what was your recovery like? I am now trying to get my house into order before I have mine and over the past couple of weeks I have decorated my bedroom, one of the spare bedrooms and now I'm on with the living room.....everyone is saying that I'm just trying to keep my mind occupied away from thinking about the forthcoming MVD, and to be honest, I think they are right as the rooms didn't really need doing, but I guess this is my way of dealing with it!!!!

I wish you luck for your next MVD in Nov and keep us posted as to how it goes ! Mandy : )

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Lol, Elaine, I think I must just be crazy ha ha!, Simon's not impressed with me as he says that I should be resting....I've been resting for the past year ha ha! The living room has turned out to be a bigger job than I first anticipated but it's getting there now! I've ordered a new carpet which again Simon said we don't need but I want a new one anyway, as you say, i want somewhere nice to recouperate ha ha! Oh well, I will reply to Jacqueline and than I suppose I should get that paint brush out again!!! xxx