MVD Booked for 7th Sept

General General TN & GPN (Old Site)
1

Hello all,

just got the date for my MVD, 7th Sept. Just over 3 weeks away. Have been suffering for just over 2yrs now, tried all the meds and have not had much success with any of them, have not had any periods of remission apart from odd days here and there, good days more than remission I think. Most days its just about manageable, have odd flashes of pain that drive me to my knees most days and at least once a week leaves me curled up on the floor crying in pain. None of the meds have completely controlled the pain, best results was oxcarzepine but was on max dose and i nearly did something silly during a very bad time so came off them, couldnt tolerate carbamazepine, came off that after less than a week.

Have been all around the houses, had the ususal severe episodes of depression but am in a better place now (currently off all meds) than since the start. Have seen 3 or 4 neurologists and 3 neuro surgeons, previous 2 on the NHS would not touch me or offer any surgical treatment even though on my 2nd MRI they could see a compression, both the surgeons stated that they did not think the compression was the cause of my pain and any form of invasive treatment could make it worse.

One of them suggested that the pain was idiopathic and has been caused by a recent traumatic event that i went through, no head injury or anything, basically made me feel like i was a headcase. Am waiting for an appointment with a phycologist for CBT.

my work have recently introduced private health care benefit and have seen a surgeon via BUPA at the Walton Centre in Liverpool which has a specialist neuro department and the surgeon I have seen there has stated an 80% chance of complete pain relief.

Initially i was over joyed to be offered this treatment and that i was being told such high odds of success, as every day passes and the big day approaches i am getting more and more nervous, never had an op or any kind before, talk about jumping in the deep end!

One of the pain management specialists i have seen have said be wary of surgeons as you often find they are willing to do surgery just because they are surgeons.

Gong back over all my notes and Dr letters and I must have had 4 or 5 differing diagnosis and am now doubting myself.

Just looking for some words of encouragement or reassurance.

Have been getting all my stuff in order, spoken to my pension provider to ensure my death benefit is paid to my wife if the worst happens and updated my details with my employer for death in service etc, happy thoughts I know.

Should i get another opinion and go with the majority? Best of 5?

Im torn between ; - i will just have the op, whats the worst that can happen (I might die) or its not that bad i can cope (until im lying on the floor crying and then im tempted to do the op myself)

Thanks for reading, any comments appreciated.

2

Hi Borris, its always hard to know what is best, especially when you get a conflicting diagnosis. Ultimately though, at some point, you have decide to put your trust in the medical and surgical staff you see, and their knowledge. With this condition, it seems to be individualistic in how it, and the drugs react to the condition. Nothing seems to be hard and fast - there seems to be a number of folk who have gone ahead with MVD's only to find out that where no blood vessels etc. have been seen on MRI's their surgeons have found something and fixed it. The best you can do is weigh up your options, and make a decision based on what you know today. It sounds like if the MVD can help, you're willing to go ahead with it. If you have concerns, it may be worth giving the surgeon a call and asking them to discuss your concerns with them further. Try not to second guess yourself, just seek clarification with the doctors you are working with, and go for an informed choice. :)

3

Hi Boris, good luck with the surgery! If the neuro can actually see a compression on the MRI I would bet you are going to have a good result from the MVD.

4

Hi Borris,

I am a 17 year old that had the procedure done in March! The fact that they could see the problem on the MRI is HUGE! This greatens your chances for a successful procedure. To be honest with you, this procedure is like the baby of all brain surgeries; it is very unlikely that something will go wrong! There is no need to worry about death.. or any complications for that matter. The chance of death is 0.1% and all other complications are under 5%. Unfortunately, I only got 3 months out of the surgery. That being said, mine was not seen on an MRI and my nerve was severely damaged. You are getting this procedure done relatively quickly, it's not exploratory surgery, you're chances of success are great. I can personally attest that even three months of no pain is worth it. This procedure saved my life... literally. I truly hope it can be the same to you.

Please give it a chance!

All the best,

LadyFace

5

Good Luck Borris I had mine in Feb 2015 went really well I am off all meds Do Not worry it will all be OK

6

I had my MVD 5 weeks ago and my MRI was clean. Didn't phase the doctor at all. He said that they mainly get MRI's to see if there are tumors or other things etc. He also said it's one of the simplest surgeries in neurosurgery. They found an artery laying all the way up at the top of the nerve which is why they didn't see it on the MRI. Make sure to tell your surgeon to look at the entire nerve not just where they see it on the MRI.

I have depression too. But I was taken seriously. Pain like this is not caused by depression.

This is how I looked at it.

I could have 95% chance of no pain if I did it or 100% chance of horrible pain for the REST of MY LIFE that would just get worse if I didn't do it.

The pain from surgery was more than I expected. They have to cut some muscles back there but I woke up and could tell the TN pain was gone.

There may come a time when you may be to old or not healthy enough to have it done, which is another thing to think about.

I was nervous as the time came closer to surgery but I kept thinking about that 100% pain for the rest of life...... and I went in and had it done.

7

If you have TN1…and you trust your surgeon, remission can be a wonderful gift!

I had depression when i had active TN…i could not get a job on those meds!

I had PTSD even after MVD…i only had TN for 12 months… Its enough to cripple you.

Four years since MVD…no meds, no pain

Look up success stories here!

Let us know when you are able to check in!

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thank you everyone for your comments, am definitely going to go ahead with it am just being a scardy cat.

i hate waiting for things, especially having something like this hanging over you, its all i can think of. i want it to be done and to be me again. having a bad couple of days so i would probably let anyone do it at the moment.

also curious as to how much hair will they chop? should i just shave my head in anticipation?

the thought of being pain free is almost beyond my comprehension, for everyone who has had a succesful MVD and no more pain does it take any adjusting or was it no more pain and were you singing and dancing everywhere as soon as you could?

got my pre op on tuesday, roll on the 7th!

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They only save a really thin line of hair I would not shave your hair wait and see you can always do it later. I was not afraid of surgery for some weird reason I did not get nervous until they wheeled me into the operating room I kept busy with getting things ready for surgery like stocking up on groceries cleaning house and ect. The surgery was really pretty easy it is a safe surgery I was in a lot of pain the first night but after that the pain got better every day I think I stopped taking pain meds after 4 days just take it easy do not stress it will all be fine, God Bless I will keep you in my prayers I had mine in Feb 2015 I have been off all meds for about 3 months and I have no pain I still have some lasting fatigue is all but I do not sleep well and that is not from surgery so not sure what the fatigue is from

10

You all have good stories. I thougt tho that the success rate is very low and side affects could b permanent numbness in the face. All 3 surgeries seem unlikely to have good outcomes. Am I wrong? This is what the n surgeon told me. Once I said I did not want these surgeries she was done w me. Go back and see dr for meds. I dont' feel I have tried enough meds. Anyone filed for disability? I am going to try. I can't even drive well anymore. The meds keep me in a fog. I don' t

want to rush in to any surgery since I have only been on meds about 7 wks.I hope you have a great outcome!

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Moose I would go to a good neurological center depending on what part of the country you are in the Cleveland clinic Barrows Neurological center in Arizona their are other in the county also on the east coast and west coast in California You need to do more research Borris has classic TN 1 MVD surgery works very well for TN1 and has a good out come and the the side effect and complications from MVD are very low as long as you have researched your surgeon and have a good one . The out come of the surgery also depends on weather you have classic TN1 or ATN. ATN is harder to take care of because it can have many causes unlike classic TN which is usually caused by a compression of the Trigeminal Nerve. There are other reasons why a MVD may not be as successful like if you have already had Gamma knife or some other nerve damaging procedure before having an MVD. You really need to research your surgeon ask his success rate and how long his patient have been pain free how many people have had cerebral fluid leaks, hearing loss or facial numbness all of those complication have a very small rate percentage. Facial numbness is more likely with a gamma knife or some of the other less invasive nerve damaging procedures. My theory about it when I made my decision was I I researched the doctor went to one of the best neurological centers in the country had the best doctor there and I feel if you have and MVD and it dose not work than you can always get one of the nerve damaging procedures done because once you damage the nerve further by those procedures you less the chances of a good out come of an MVD as long as you are in good health an MVD shoud be safe as long as you have a good surgeon who has done many of these procedures and i mean lots of them not just a few a year more like 30 to 100 a year some one who does 10 or less is inexperienced in my opinion, I had my MVD in Feb 2015 and am off all meds and have no bad side effects just the usual numbness around the incision on my head which is a little annoying but not a problem and it will get better over time it does not effect my health in anyway Good Luck.

You all have good stories. I thougt tho that the success rate is very low and side affects could b permanent numbness in the face. All 3 surgeries seem unlikely to have good outcomes. Am I wrong? This is what the n surgeon told me. Once I said I did not want these surgeries she was done w me. Go back and see dr for meds. I dont' feel I have tried enough meds. Anyone filed for disability? I am going to try. I can't even drive well anymore. The meds keep me in a fog. I don' t

want to rush in to any surgery since I have only been on meds about 7 wks.I hope you have a great outcome!

12

Hi and thank you. The neurosurgeon thinks I have a little of both kinds. ? I went to the university of Iowa in Ia city. A great research hospital. But I just don't think I have tried enough meds. I live in Davenport Ia. so anything on either coast is impossible. I think the Tegretol and Baclofen are helping some. I just dont' know if I should try something else. It will b awhile bfore I think of any surgery until I can try other meds. IDK I can't' get the neuro off to call me back. Been a wk and nothing. This is the reason for a lot of my anxiety and depression. Not being able to even get in touch w the Dr. Im so outdone.

13

Yes I got you, when I thought it was a tooth I felt like pulling it myself. Its not the tooth and glad I didn't get it pulled. I had sinus surgery and that didn't help. When I went back to him the second time he seemed kind of mad and said there is nothing wrong w your sinuses. So he is the one (ent) to send me to neuro.

14

Hi Borris. Wish you only the. Best. I have had 2 other surgeries that did not work. I am now scheduled for Mvd surgery on September 3rd. I have all the confidence in my neurosurgeon and believe it will be successful. Yours will be too. Good luck.

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Dear Borris, Wishing you well also. How did you discover this neurosurgeon and what is his reputation? Also could you provide me with the term given for your condition? Is it classic TGN or type 2 (also known as atypical facial pain syndrome). I'm a retired dentist. I've been living with type 2 trigeminal neuralgia for over 7 years. I've had 3 micro-vascular decompressions over the course of my lifetime. I have some thoughts that might be helpful, but I would like more explicit info regarding your condition.

16

Thank you all for your kind words of encouragement. as the days pass im getting even more nervous, i know its the best chance to be rid of this horrid condition but it doesnt make it any easier. never had an op of any sort, i think there should be an introductry level of surgery first, maybe removal of a toe nail or something rather than just jumping in the deep end and going straight for brain surgery. its going to be a long week.

last week has been awful, high pain every day, tired and fed up, so glad its only a week away, i wish it was already done though. am terrified!

i discovered my surgeon by googling surgeons in the north of england who specialise in TN, based at a specilist neurology clinic in liverpool so am quite confident in him and he is very optomistic that this will greatly reduce or stop the pain completely so i do have faith in him and this is by far the best oppurtunity that has been offered to me. since it started i have had maybe 4 or 5 different diagnosis, current surgeon said predominantly tn1 or classic tn with some atn which is my temple pain, mostly pain is on my right but have flashes every now and then on the left, current surgeon hasnt discussed the pain on the left at all. most of the pain is around cheek bone, jaw and cheek but it can appear anywhere on the right from scalp to my chin, tip of my nose, ears, all or some of my teeth at any given time, my eye sometimes feels like something is stuck under my eyelid scratching my eye. triggers seem to vary day to day, at the moment loud noises and backlit screens, wether tv, tablet or my kindle, driving always seems to set it off, touch somedays does and somedays doesnt, cold air, hot air from getting anything out of the oven always sets it off. my little girl when she screams at a certain pitch literally drives me to my knees.

its so changeable, no day is the same, its impossible to describe it to anyone, i must seem like a nut case when trying to explain it to the docs. i think somedays just getting out of bed triggers it and its all down hill from there.

as scared as i am i just want it to be done and to get my life back.

17

Borris I know it sounds scary but it really is not that bad of a surgery you might be in a lot of pain the first day but it will go away I think I only took pain pills for 4-5 days It will be OK I will keep you in my prayers and good luck as soon as you are feeling better let us know how you are feeling I have faith it will be a good out come for you. Just think positive. I used a shower chair because your balance is off for a little while after surgery I also used a wedge pillow that also helped. and I continued to use ice packs at home when my head hurt just get lots of rest and have help when you get home I was taking walks at about 5 day after surgery not long one may just a couple house down and back but each day I got further it made me feel better I had someone walk with me because of balance issue I had mine in Feb 2015 and am feeling so much better had some problems coming off the meds with withdrawl but am now off the meds good luck it will be fine Hugs

borris said:

Thank you all for your kind words of encouragement. as the days pass im getting even more nervous, i know its the best chance to be rid of this horrid condition but it doesnt make it any easier. never had an op of any sort, i think there should be an introductry level of surgery first, maybe removal of a toe nail or something rather than just jumping in the deep end and going straight for brain surgery. its going to be a long week.

last week has been awful, high pain every day, tired and fed up, so glad its only a week away, i wish it was already done though. am terrified!

i discovered my surgeon by googling surgeons in the north of england who specialise in TN, based at a specilist neurology clinic in liverpool so am quite confident in him and he is very optomistic that this will greatly reduce or stop the pain completely so i do have faith in him and this is by far the best oppurtunity that has been offered to me. since it started i have had maybe 4 or 5 different diagnosis, current surgeon said predominantly tn1 or classic tn with some atn which is my temple pain, mostly pain is on my right but have flashes every now and then on the left, current surgeon hasnt discussed the pain on the left at all. most of the pain is around cheek bone, jaw and cheek but it can appear anywhere on the right from scalp to my chin, tip of my nose, ears, all or some of my teeth at any given time, my eye sometimes feels like something is stuck under my eyelid scratching my eye. triggers seem to vary day to day, at the moment loud noises and backlit screens, wether tv, tablet or my kindle, driving always seems to set it off, touch somedays does and somedays doesnt, cold air, hot air from getting anything out of the oven always sets it off. my little girl when she screams at a certain pitch literally drives me to my knees.

its so changeable, no day is the same, its impossible to describe it to anyone, i must seem like a nut case when trying to explain it to the docs. i think somedays just getting out of bed triggers it and its all down hill from there.

as scared as i am i just want it to be done and to get my life back.

18



KATTHOMPSON4 said:

Borris I know it sounds scary but it really is not that bad of a surgery you might be in a lot of pain the first day but it will go away I think I only took pain pills for 4-5 days It will be OK I will keep you in my prayers and good luck as soon as you are feeling better let us know how you are feeling I have faith it will be a good out come for you. Just think positive. I used a shower chair because your balance is off for a little while after surgery I also used a wedge pillow that also helped. and I continued to use ice packs at home when my head hurt just get lots of rest and have help when you get home I was taking walks at about 5 day after surgery not long one may just a couple house down and back but each day I got further it made me feel better I had someone walk with me because of balance issue I had mine in Feb 2015 and am feeling so much better had some problems coming off the meds with withdrawl but am now off the meds good luck it will be fine Hugs

borris said:

Thank you all for your kind words of encouragement. as the days pass im getting even more nervous, i know its the best chance to be rid of this horrid condition but it doesnt make it any easier. never had an op of any sort, i think there should be an introductry level of surgery first, maybe removal of a toe nail or something rather than just jumping in the deep end and going straight for brain surgery. its going to be a long week.

last week has been awful, high pain every day, tired and fed up, so glad its only a week away, i wish it was already done though. am terrified!

i discovered my surgeon by googling surgeons in the north of england who specialise in TN, based at a specilist neurology clinic in liverpool so am quite confident in him and he is very optomistic that this will greatly reduce or stop the pain completely so i do have faith in him and this is by far the best oppurtunity that has been offered to me. since it started i have had maybe 4 or 5 different diagnosis, current surgeon said predominantly tn1 or classic tn with some atn which is my temple pain, mostly pain is on my right but have flashes every now and then on the left, current surgeon hasnt discussed the pain on the left at all. most of the pain is around cheek bone, jaw and cheek but it can appear anywhere on the right from scalp to my chin, tip of my nose, ears, all or some of my teeth at any given time, my eye sometimes feels like something is stuck under my eyelid scratching my eye. triggers seem to vary day to day, at the moment loud noises and backlit screens, wether tv, tablet or my kindle, driving always seems to set it off, touch somedays does and somedays doesnt, cold air, hot air from getting anything out of the oven always sets it off. my little girl when she screams at a certain pitch literally drives me to my knees.

its so changeable, no day is the same, its impossible to describe it to anyone, i must seem like a nut case when trying to explain it to the docs. i think somedays just getting out of bed triggers it and its all down hill from there.

as scared as i am i just want it to be done and to get my life back.

Borris I'm telling you true. The surgery is a "piece of cake". The last one I had, I left the hospital 36 hours later. Also true of the one before that. Just pray that it works for you. I will be too. I've had 14 surgeries in my life. It's having my consciousness driven from my body through general anesthesia that scares me, You'll blink out and blink up and you'll be done, I would make sure your neurosurgeon uses a neuro-physiologist during surgery to monitor his "insulting" of your brain tissue as he's working. As the monitor needle starts to rise up the meter, the neuro-physiologist tells the surgeon to give it a rest or back off for a minute to let the tissues calm down assuring that the whole process is benign and not overly irritating to the brain tissue thus assuring a relatively painless post-op result. Dennis A. Dore