Quick update everyone as my pc is playing me up! had mvd 6 days ago and feeling pretty darn good considering! My NS seemed really pleased with the way the op went. 2 arteries one above nerve and one below were moved and decompressed. guess what NO TN PAIN SINCE!!! Numb face and teeth on right but nothing compared to tn pain. will post pic when pc works better. resting as much as poss. thanks for all your good wishes.love suzy x
Great news!
Great!! - Rest for 2-3 weeks if you can!!!!!
That’s great news Suzy!
Nice to “see” you and hear that already your experiencing no pain! That’s awesome!
Continue to rest up and take good care of you, (( hugs )) Mimi
Great news. Good for you. I am now 3.5 weeks post MVD and am feeling good considering too. Isn’t it amazing to be pain free! Take care of yourself.
Fantastic news. Something for me to think about as I am deciding on if I will do my MVD.
Great news Suzy : ) glad to hear that all has gone well for you and that you're no longer having any TN pain. Rest as much as possible and I look forward to hearing about your on-going progress x
So happy for you!!!!!!!!! Make sure you rest as much as possible and do what the docs say.
OUTSTANDING! So happy to hear of your success. Take care and enjoy your "rebirth".
Many thanks Rick. Sounds like you've been through the mill too. Glad you got help with MVD too. I still can't believe I HAVE NO PAIN!! Resting up and tired, but really happy too. Suzy
RickRI said:
OUTSTANDING! So happy to hear of your success. Take care and enjoy your "rebirth".
Thanks Donna, I am resting up and doing as I'm told. All stitches and staples removed last Friday. I'm SOO HAPPY, NO TN PAIN!! Long may it continue! Hope you're doing OK. Suzy
Donna Cook Turnage said:
So happy for you!!!!!!!!! Make sure you rest as much as possible and do what the docs say.
Thanks Gen, I'm now 10 days post op and NO TN PAIN!! INCREDIBLE AND UNBELIEVABLE!! Hope you're continuing to improve too. I had my staples and stitches out last Friday and am still on Pregabalin 50 mg x 2 daily and have to stay on it till I see NS in a few weeks time, but that's loads less than I was on before. I couldn't eat, drink, talk, speak, clean my teeth, sl eep, go outside or do anything when they took me in for op, so I'm really thankful it was done when it was. Keepin touch, Suzy.
Gen said:
Great news. Good for you. I am now 3.5 weeks post MVD and am feeling good considering too. Isn't it amazing to be pain free! Take care of yourself.
Thanks KC, I am resting up. I'm pretty numb all over my cheek/forehad/upper teeth and lip area, but that's probably going to improve over time, as you say, and is nothing compared to how I was before the op. I still can;t believe how good I feel (although pretty tired, as you say). Best wishes, Suzy
Kc Dancer Kc said:
Great!! - Rest for 2-3 weeks if you can!!!!!
Thank you Christine. Suzy
Christine said:
Great news!
Many thanks Mimi. So wonderful to have people who really understand how bad this awful condition is and what we're all going through. I don't know how I would have coped without this site to be truthful. Invaluable.
I'm resting up but feeling good too. So wonderful to be pain-free again. I just wish everyone could be. Suzy
Mimi said:
That's great news Suzy!
Nice to "see" you and hear that already your experiencing no pain! That's awesome!
Continue to rest up and take good care of you, (( hugs )) Mimi
So good to hear you are not in pain. The side effects will hopefully fade. I am having my MVD surgery 2 weeks from today! I can't believe it. I am starting to get really nervous - but I know it's the right thing for me. Thanks for sharing your update and take care:)
Hi J, thanks for your reply. I am really pleased to not be in pain now and improving daily. I'm sure the side effects will fade, as you say. I bet you're getting really excited and scared at the same time, it's perfectly understandable after all you've been through. Fortunately my MVD happened so quickly without warning that I didn't have a lot of time to get nervous! Best way I think! I certainly wouldn't change my decision to go ahead and have the MVD, it's definitely the best decision I ever made.
I was really on a high last week, straight after the surgery and thought I would be back at work in no time, but find this week that I'm more tired and not sleeping as much, and probably a little 'shakier' now that I'm on my own at home and my daughter has gone back to Edinburgh. I guess now that the operation is over for me that I've now got the time to ponder on how things were before (and I can't believe the change!) I went shopping with my husband yesterday about 6pm, and when we left the shop I automatically covered my face with my big thick scarf (forgetting that the TN pain appears to be gone now!). My husband wondered what I was doing and thought the pain had come back! I think this kind of thing may go on for some time - just like when I have a shower I can't quite bring myself to put the full force of the water on my face yet, in case it brings the pain back! I'll have to un-learn all these things over time I guess, but it's great that I can do that.
I hope all goes well for you when you have your op, I'm sure it will, and keep positive! Best wishes, Suzy
Hi Suzy,
I appreciate learning of others' experiences such as the second week feeling a bit tougher than the first so that I experience the same, I won't be alarmed. I am sure it will take quite some time to un-learn all the things we have trained ourselved to do to eliminate the pain. Right now my meds are working beautifully and I am in no pain yet I hardly chew on the right side of my mouth and rarely lay the right side of my face on the pillow. Though the medicine is working now, I have had some excruciation breakthrough pain in the past and I dont' want to live in fear of that all my life - not to mention pills 3 times a day. Anyway, thank you for sharing. I hope each week is better than the last for you. Take the best of care:)
Jenny
Congratulations! Next month will be my 1 year anniversary for having my MVD done. I am still pain free! I still get those twinges where I think it will come back but so far so good! Best of luck to you!
Hi Suzy,
I know what you mean about being on a high with the realization of no more TN pain - I'm 4 weeks post op and still have that high whenever anyone asks me how I am! You just cant wipe the smile away. I too noticed the 2nd and 3rd weeks the worst for not being able to sleep and exhaustion from trying to get up and do stuff - all I can do is lie on the lounge. I go back to the neurosurgeon next week, so will then start decreasing meds. I am so scared of this part because I'm scared of the little twinges i will no doubt get, like everyone else. Life without TN is so wonderful...."normal" people who have never experienced what we have just have no idea how good they have it!!
Keep in touch - I'd like to follow your progress as you had your MVD about the same time as me. Like you, I only had 5 days to prepare for my surgery, so no time to get worried. All I did in those 5 days is cook meals for the freezer and finalise some things at work. I have one more week off work, so am keen to get back to normality!
Cheers.
suzy1 said:
Hi J, thanks for your reply. I am really pleased to not be in pain now and improving daily. I'm sure the side effects will fade, as you say. I bet you're getting really excited and scared at the same time, it's perfectly understandable after all you've been through. Fortunately my MVD happened so quickly without warning that I didn't have a lot of time to get nervous! Best way I think! I certainly wouldn't change my decision to go ahead and have the MVD, it's definitely the best decision I ever made.
I was really on a high last week, straight after the surgery and thought I would be back at work in no time, but find this week that I'm more tired and not sleeping as much, and probably a little 'shakier' now that I'm on my own at home and my daughter has gone back to Edinburgh. I guess now that the operation is over for me that I've now got the time to ponder on how things were before (and I can't believe the change!) I went shopping with my husband yesterday about 6pm, and when we left the shop I automatically covered my face with my big thick scarf (forgetting that the TN pain appears to be gone now!). My husband wondered what I was doing and thought the pain had come back! I think this kind of thing may go on for some time - just like when I have a shower I can't quite bring myself to put the full force of the water on my face yet, in case it brings the pain back! I'll have to un-learn all these things over time I guess, but it's great that I can do that.
I hope all goes well for you when you have your op, I'm sure it will, and keep positive! Best wishes, Suzy