Hi Jacqueline, Thank you so much for sharing your story with me, it was very good of you! When I was first diagnosed with TN I was also put on Tegretol and could not tolerate it, I was very much like what you described, I was unable to talk, walk, my memory totally went, I felt like I was in a bubble (I really can't understand why some people take drugs for recreational reasons as if thats what it does to you then wheres the fun in that - sorry don't know where that came from!). Anyway my meds were changed several times before I was but on Lyrica and Dosulapine, I have managed a little better on these and slowely I am able to funtion a lot better than I did, although,memory, thought prcocess and balance are still problamatic which is why the Neuro suggests the MVD's as pain has crept back in and they are unable to up my meds due to lack of toleration to them!
Again, like yourself, winter is a bad time for me, one little bit of wind onto my face, bang off it goes, like a swing boat, one side, then the other! Change of temp is def one of my key triggers.
I am still waiting for a date for my MVD, but the Neuro said it would be sometime this month. He said that due to (often) delays with the post that his secretary might just ring me with dates for both my pre-op assessment and for the MVD. I'm jumping everytime the phone rings, i some ways I just wish I had the date then I would know what timescales I'm working to and in other ways I'm terrified of getting that call or letter as, in my mind, that makes it more real, if that doesn't sound stupid!
I'm so sorry to hear that you are struggling so bad again with both the pain and the side effects from the meds as it sounds as though you have been through so much already. But I hope you have a lovely time at the wedding today, even if your husband has to prop you up! You sound as though you are a very strong and brave lady indeed.
The Neuro did mention the Rhiziotomy to me and did explain this procedure as he said that he has to, but at present he said that he feels that the MVD would be a better for me, especially for the right side.
Like yourself, I also wish you well for your forthcoming MVD and sincerly hope that this time it will both work better for you and for a much longer period of time. I know I am so looking forward to getting my life back and to be able to go out and about as I wish. I already have one grandson and was unable to help my daughter out when he was born last Nov and I have another 2 grandchildren due, one in Nov and one in Dec and I really don't want to miss out on those early days again due to been doped up by the drugs, but hey, what will be will be, I have to think positive in that I will have years ahead of me to enjoy them!
Hope you enjoy your day
Mandy : ) x
Jacqueline Charron-Chapman said:
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 : )
