Thanks so much Mandy......My doctor says that he leaves his patients in ICU the entire time they are at the hospital...He says, "if I am comfortable with you leaving ICU, you can go home"....I know some people don't like having that many nurses around, but I say YES......
Oh Mandy, thank you so much for sharing your story with us. Sigh .... my heart goes out to you. I feel like I don't even have words to say. I'm so sad to hear how your first husband treated you and can see how could feel hate towards him. After I read your words I remembered something traumatic that happened to me when I was just two years old. A 10 year old neighbor boy climbed over our fence, sat on my back, and banged my head repeatedly against the cement. I wonder if this could have caused my Bilateral TN. Anyways, you got me thinking. ;/
I'm glad you're feeling a bit better. :) Please keep us updated and feel free to send me a note any time. Big hugs!!!
~ Vicki
Thanks so much for sharing your story. It was very brave and thoughtful of you to share it with us. I have always wondered too about the physical abuse I have had when I was younger from my parents and my siblings. I once also got hit in the head pretty bad by a teather ball (spellcheck). I am not sure if anyone remembers those soccor balls that they put on poles and you would hit it so it would go around the pole as your opponent would hit it back trying to do the same thing. I am glad they took thos off of the elementary school fields. Who knows how many kids got hit in the head pretty hard with those balls.
It helps to let others know about your experiences in the O.R. Thanks again and my positive thoughts, well wishes, and love are being sent out to you so you will get better.
Thank you so much for your well wishes Monica. I had never thought of any connection between the two prior to what my NS said to me but i guess when it's explained to you as my own GP explained to me, it does makes sense! Who knows how many of us may have been saved from this illness had we not had some sort of bang/knock to our heads! I remember the game you talked about, I used to love it, we called it swingball in England and yes, I remember being banged in the head by the ball and back in the day found it amusing!
Hi Mandy-thank you for sharing your story with us. How are you feeling now? This website is such a great resource for all of us. Wishing you the best. Christine Larson
Hi Christine, Thank you for your message. I am feeling much better now although still feeling a lot of soreness around my scar and temple but I guess that this will take quite some time to heal properly! I must admit that the whole thing has been an emotional rollacoaster but fingers crossed it will have all been worth it in the end. I'm still getting pain in my face and some days it's just as bad, or worse, than it was before the op but again I am trying to remain positive as this could just be due the the nerve settling down which I am led to believe can take up to a year to heal.
I fully agree with you that this is a fantastic website for both people suffering with TN and for their families and friends, it's full of wonderful advice, stories and information.
Best wishes
Mandy
Hi Mandy . Wow you have been through a lot. I hope things do settle down for you. I am sorry to hear that you had to endure the behaviour from your previous marriage. But hopefully soon you will feel better. The oromorph is a liquid morphine so that may be causing the sickness and the feeling of unsteadiness . The twitching could also be related maybe talk to your gp he may be able to sort out something to help.
Did your neurosurgeon say when he expected to see some positive results re the pain ?
Well thanks for sharing your story take care x
I actually had worse pain too after the MVD, but its much better now, only a twinge here and there. Since talking with my neuro the other day, I complained about the feeling of being punched in the face, he said that was from the rhizotomy months ago and I developed a sort of TMJ, I am wondering if maybe the positioning of your head caused a bit of a pull that is giving you that new pain. I am using a heating pad and it works great for relieving the discomfort
Wendy
Mandy said:
Hi Christine, Thank you for your message. I am feeling much better now although still feeling a lot of soreness around my scar and temple but I guess that this will take quite some time to heal properly! I must admit that the whole thing has been an emotional rollacoaster but fingers crossed it will have all been worth it in the end. I'm still getting pain in my face and some days it's just as bad, or worse, than it was before the op but again I am trying to remain positive as this could just be due the the nerve settling down which I am led to believe can take up to a year to heal.
I fully agree with you that this is a fantastic website for both people suffering with TN and for their families and friends, it's full of wonderful advice, stories and information.
Best wishes
Mandy
Hi Foxy and Wendy,
Thanks for your messages, the twitches have now stopped and my GP thinks that this was a side effect to the Tramadol which I no longer take. I am now off all the pain meds and only take paracetamol as required. On didcharge I had limited information from my NS and my follow up apt isn't until 5th March however, my GP has requested an earlier apt and I got a call from the surgery y'day saying that a further MRI has been set up for, she thinks, the 27th Dec and then the NS wants to see me following this. Mosts of the headaces have now stopped and again, my GP thinks I cam off the Tramadol and Oramorpe too quickly and that the new headaches were proberbly withdrawel symptoms!
I'm still getting a lot of pain in the right side but I am trying to remain positive and am hoping that this will settle down in time!
I have a heat pad Wendy and will give it a try but one of my main triggers is change of temperature but I'll give anything a go if it helps reduce the pain ha ha!
Hope everyone is doing okay
Mandy : ) x
thank you all for your input, all your answers are very interesting....... i am amazed that we all have different experiences. my MVD was just over two weeks ago, things are going so well. i don't want to jinx anything..... i have cut my meds by half, and am scared to go down any further, i still think the pain is going to come back any minute. i touch my face a hundred times a day and expect the "zaps" to happen, nothing so far, but it is terrible living on your nerves, waiting??
i wouldnt change my decision to have the op for the world, its uncomfortable especially in bed, but at least there is no pain..my wound is sometimes tight feeling, but the scar is healing up beautifully.
best wishes to you all. i will always put my input on this site, it helped me and i hope i can help others. i want more people to have the operation, anything is better than living the way we were..... hope you all have pain free days, and lots more to come. anne
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Can I ask how long can an MVD last and how many times can it be done? Best Wishes to everyone who has been brave enough to go through with it. xxxx
Hi elstep, don’t hold me to it? But I think my neurologist quoted me once that after 15 years 75% of his patients were pain free, are you thinking of having the MVD? I think that if I get 15 years without that horrendous, searing pain I will do well… everyday pain free is a bonus. And yes I believe it can be done again, good luck with your decision. If I can help please ask. Anne
Hi Elaine, I’ve heard of people having a second MVD done but not sure if it can be done anymore times!
Hope your recovery continues well Anne, you sound as though you’re doing really well, I can relate to the tightness of the scar, it feels really weird don’t you think? Xxx
Anne I no longer have pain and I say thanks every day for that. I ask because of the fear that it may come back and I want to be well informed. I admire you all in how you cope. xx
My neurologist had about the same statistic and he deals with mostly ATN patients so I felt the same way going to him. I am hoping for 15 years as well, then I will deal with it if the time comes. He did say that you can do multiple MVD's but his limit was 3 if I remember, and he wont do it past a certain age, I think it was 70 years old
Wendy
anne morris said:
Hi elstep, don't hold me to it? But I think my neurologist quoted me once that after 15 years 75% of his patients were pain free, are you thinking of having the MVD? I think that if I get 15 years without that horrendous, searing pain I will do well..... everyday pain free is a bonus. And yes I believe it can be done again, good luck with your decision. If I can help please ask. Anne