On Monday 9th July 2012 I went to adenbrooks (uk) to have my MVD , I can’t even out into words what was going through my mind, on traveling to the hospital I thought can I really do this, I was at that point very scared and thought what is something went wrong, I had written a letter to my three children and husband just in case.
My daughter and husband were with me at the hospital and when I was waiting to do to surgery they were keeping my spirits high, the dr came to see me and he was so nice and made me feel very relaxed and at the point I thought yes this is the right thing to do I have to try,
At 1030 I was taken down to theatre to have my apathetic at 230 I woke up and had no TN pain this was fantastic and I thank the dr who was there to welcome me and see how I was… I can not really remember much about the rest of the day as I was a little drowsy …
I was taken to the ward at 8 pm and had ops through out the night .
Day two Tuesday I woke with pain around where the MVD had been done also had double which made it weirded when I walked… I was in pain but it was not as bad as o thought it would be but then I was constantly keeping e pain killers coming …
I felt relived and very sleepy so slept , that night I had earplugs in a got a good night s sleep when I woke the pain was bad but after taking pain killers it became bearable, I had ups and downs feeling ok one minuet not the next. Little weepy I just wanted to go home,
Wednesday 11 th
Woke up sleepy, and pain pain killers helped again and had a shower which made me feel better the nice surgeon came to see me and said I could go home today so at 430 I left the hospital and had a 2 hour drive home which was not as bad as I thought it would be,
Go home had tea than bed,
Thursday 12 th today sat in the chair my son and hill girlfriend looked after me very well, go flowers lots of tea, I have had lots of pain to day and don’t know what to do with my self i think tomorow I will lay in bed until gone 9, I will keep posting
We are keeping good thoughts for you. Are you TN 1 or 2 or both? V 1,2, or 3? Prayers your way for sure.
Hang in there Victoria! It will get better each day! Keep resting and let them look after you for once! In a couple weeks, you will feel GREAT! Praying for you still!! <3
WOW!! Only a few days after and you are already able to post!! Stay relaxed and let everyone else take care of you!! This is your time to recover and heal — and don't get discouraged, recovery is going to take several weeks/up to a few months. Watch every crappy TV show that you can think of, try books on tape ... anything that will entertain you and keep you rested in bed. So great to hear from you!! HUGS!!!
Keep positive thoughts and rest & let others pamper you, thinking of you & keep us posted on your progress.
Yes, keep posting and let us know how things go with each day or at least each week when you feel up to it. I pray that your pain will be taken away in short time. I'd be apprehensive too if I were doing MVD, which I might do one day. I have the atypical type which is a little more touchy than if you have the regular TN. Take care and know you have alot of people thinking of you daily and wishing you the very best recovery...no pain!
Jessica, how did you get pain free? Did you have regular MVD surgery and where did it take place and by whom? I'm trying to make a list of doctors in case I try the surgical route. Thank you@
JessicaG said:
WOW!! Only a few days after and you are already able to post!! Stay relaxed and let everyone else take care of you!! This is your time to recover and heal — and don't get discouraged, recovery is going to take several weeks/up to a few months. Watch every crappy TV show that you can think of, try books on tape ... anything that will entertain you and keep you rested in bed. So great to hear from you!! HUGS!!!
I really am so very happy for you....I am sure you will now have a wonderful pain and drug free life.....big hugs xxxx
My update after a 7 days I was feeling well , but started to leak out of my would on Monday , this was day 7 I didn’t know what to do so leftist and by the 4 in the afternoon it had stopped leaking and I had been told this could happen , all was ok until Thursday day 10 when it started to leak again but this time it was a lot more coming out I know it was a CFS leak but was kidding my self I spk to my mum who said go to the drs so I wants and he confirmed it was a leak and sent me straight to the hospital I got on to the ward at 12 pm where the surgeon stitched up my scare and I went to sleep only to wake up and it was still leaking, so they did me a lumber puncture and put a drain in to drain the fluid and let the hole heal, also putting another stich in my scare I was in bed and on the drain dor 5 days , they then stopped the drain and the leak had stopped , I was let out after 7 days that was 2 days ago and so far all is ok I’m a little scared I will get anothe leak but have done nothing since being at home the dr said I much not do anything for 2 weeks then gradually I can do some house work but to do it slowly … The good thing is I had 7 days rest in hospital and was in very good hands the staff were fantastic and very helpful kind and put my mind at rest … I did have a bad head ache while the fluid was draining but that has. Gone and I am starting to feel better again . I will keep posting my progress 
Here is wishing you the best. Unfortunately I did not have any success with the surgery and continued on pain meds. I just want to encourage you to think positive and keep me informed on how you are doing. I've had this disease for 12 years.
You have my full support and feel free to contact me if you want. I live in North Carolina. Thanks to BensFriends we are not alone anymore.
Best wishes,
Julz
Victoria, I hope things are gradually getting better and that the leak is under control by now. Keep us posted when you feel like it. You have alot of people thinking and praying for you. You are not alone. Let your family, friends, docs, and nurses take care of you. Rest.
Tinkerbell
Julz,
Do they know why your surgery was not successful? Have you considered a "re-do"? I'm sure there are reasons why you haven't or maybe shouldn't. Being in NC, there are some good docs at Duke. Did you go to any of them? How do you manage your pain now? My pain is 24/7 and I have to have a jaw surgery first. I can't seem to muster up the energy to get to Texas for one more consult before the surgery takes places in Las Vegas (of all places - lol). I just had to move half of my stuff because of my mom ,as some of you may know that sad story. I'm not setttled yet and have papers and boxes everywhere. My family is scattered about so it's difficult.
Anyway, did you have Atypical or what type of TN did you have? What type did Victoria have?
Blessings to all,
Tinkerbell
I’m back on line after another 8 days in hospital wi a second CFL, I was only out of hospital 3 days and the leak started again through my wound, I was a little worried but new what to expect. I had two infections which could have been why I had this second leak, I had a lumber puncture and spinal fluid drip inserted to drain the excess fluid has this for 5 day, also my wound was cleaned and restricted to stop the fluid leaking out… I am back home and so far all is ok and there is no sign of anoth leak. I can’t do anything for two weeks and have to take it easy for another two weeks and have to go back to work part time till October , I was told that I this is because I have a highrer risk of a leak as iv already had two… Tis is ok as I’m not getting much pain at all Had a little while the fluid wa being drained and have been told it could take a few months to heal as it has been interfered with, so on the mend again and have to except the flack that iv got a longer recovery that I expected,
God Bless, Victoria. Hang tough. Keep us posted when you feel up to it. Take advantage of your time off to rest and don't push yourself even on the "good" days. Thinking of you!
Tinkerbell
WOW! You have been through some scary stuff - more than most of us had to go through -- those leaks were my 2nd biggest fear - after thinking I would die on the table too!
Thanks for the updates! Gives others hopes - even if rough going!