Posted , 8 users are following.
Hi, I had my surgery 1 week ago today, and I can safely say I have had no TN symptoms since. However, the surgery itself wasnt the most pleasant I have even had and the recovery I have been told is 6-8 weeks.
Straight after surgery I had the worse headache I have ever had, but was told this was normal due to the leakage of CF and my brain becoming mushy (consultants words) and needing to sort itself out. After a 4 day stay in hospital I am home, walking around although slowly as still abit light headed and dizzy. Only taking paracetamol and codeine for pain. Surgery was approx 6 hours and have only lost a small amount of my hair.
So if I was asked again would I have the surgery, I might hesitate for a while and didnt like the immediate feeling after surgery, but to not have to worry about when the next pain was going to come or for how long, then the answer would definately be YES.
1 like, 11 replies
alan21271 nikola25969
Posted
How did you manage to weigh up the risks for such a procedure. I assume your TN was very bad? Do you mind me asking where this was carried out.
nikola25969 alan21271
Posted
I had the surgery done at The Royal London Hospital by Mr Wardley.
Today not feeling quite as good as a localised infection, but other than than feeling great.
Ginagirl nikola25969
Posted
mufti04211 nikola25969
Posted
I was told that it is less than 2% life threat. I agreed even if 90% life threatening. I just want to get rid of this TN pain, to enjoy the taste of food instead of swallowing, to drink cold water, to live one day without pain or worry about the next seizure, to taste lemon, to feel normal again which i have already forgotten.
I have TN for two years now. I think it is from hell. I wonder how people tolerate it 15 years.
Thanks, please keep us informed about your TN.
nikola25969 mufti04211
Posted
Good luck with your surgery, keep me updated xx
mufti04211 nikola25969
Posted
I have done operation yesterday. TN pain is zero. Only post operation pain. I wonder why to tolerate TN but not the operation. All nurses offered me pain killer but I usually refused as I experienced the horrible TN pain. Thanks for the encouragement. I hope you will live long and pain free life.
marielouise1966 nikola25969
Posted
I bet you can't wait til it's all over. I have my surgery at Kings on the 21st Aug, my May date was cancelled - so annoyed as I was within 2 weeks of having it and really excited. I've told work 3-4 weeks off so your 6-8 weeks has frightened me a little! You mention hair loss - can you explain more as I'm expecting about a third of my head to be shaved!! Let's hope not. I've had TN for 10 years and have had about a gut full of it, suffering from memory loss etc with too many anti convulsants and I'd really like to see a dentist! . In fact it's probably the first thing I'll do. Not sure what I'll do if it doesn't work. Marie x
nikola25969 marielouise1966
Posted
no need to worry too much about hair loss, it is literally a small strip of hair behind your ear hope this picture helps. I have only been told 6-8 weeks due to my job, so you might only be off 3-4. Do expect a sore/tender neck however, but it soon wears off after about a week, I am now moving my head a lot better although not wise to bend over too far.
i was told success rate is 95% so don't worry. Good luck let me know how you get on.
Nikola x
marielouise1966 nikola25969
Posted
bigalan nikola25969
Posted
linda27590 nikola25969
Posted
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