Which procedure gives us most sustained results with fewest complications?
Akil41128,
I will tell u to talk with ur neurologist, and force him to tell u and give u phamplets on the different procedures, and make sufe u read and discuss what other TN sufferers are posting about on this forum.
I will it say again, if a neurosurgeon suggest MVD surgery, get 5 more neurosurgeons opinion.
Most important is to find out how many surgeries if you decide to go MVD that this Nero surgeon has performed make him tell you how many.
I would never do MVD again but never suggested for anyone ever, that is from my ecperience.
God bless
us and keep us and give us peace
Hello
thank you for this advise we are waiting for our daughters neurologist appointment at the end of this month, she was recently diagnosed with TN and is 20 years old.
We are intrigued with what they are going to advise being as she is so young,
Will post again after the appointment.
All the best to you Paul
I got trigeminal neuralgia neuropathy at 30 years old it sucks but i have somewhat okay days it always hurts but if im not stressed it doesn't hurt that bad an i live Pretty normal life i have found a job i enjoy right not that pays well an insurance was a huge life saver i have UnitedHealth care
Hello
it is interesting as all the doctors we have spoken to so far and there have been a few have told us that TN is not linked in anyway to stress. We are convinced it is as our daughter is at Uni studying to be a nurse and as you can imagine it is very stressful and she is just starting her final year and we were convinced it was brought on through stress.
We will ask the neurologist as well and see their views.
Thanks again and hope you keep well
Paul
I'm a 52 year old male and I've had TN for only a few months but they have given me probably the worst pain I have ever experienced. I have the same question for all TN sufferers. I don't want to be on medication for a long time and wonder what the best options are for a procedure.
Mine was from an ear infection and it started slow.
Now stress can make it hurt more for me.
So i stay in the least amount i can be in
Look up gamma knife surgery. Its not really surgery but radiation is used
I did a ton of research on this, and I ended up having MVD surgery. The most invasive, but the best percentages of success. It certainly depends on your MRIs and the possible cause of your TN, whether it be trauma, MS...After all of that, the surgery was successful for only four months!
hi, im in the same situation!! i don't know which way to go. i desperately wanted a neurectomy until i read the nerve grows back, i like the idea of cyberknife, then i thought i would go for the glycerol injection but then i read you can get anaethesia dolorosa, but then i read you can get that with nearly all the procedures so im still none the wiser. my meds are coming to the end of their life and i would like to try one more tablet but i still need a plan set in place for when they run out. im currently looking into a more herbal (if you like) treatment. im fed up with no one doing anything!
ask to be referred to addenbrokes (if you're in the UK) their the head specialists, that where im going in a few months to at least give to botox a try. come back and let me know if you have anything you're interested in but i've seen two neuros now who don't know anything! but don't be like me and take it, argue with them to make them bleedin well listen and do something.
Paul49262,
You r the first patient on this forum who alone with me believe TN is brought on by stress.
I came to this forum hoping others would share what they believe started thier TN, but it seems as if no one but u and me rhx it is stress.
I kniw it is not a infected took because I made my dental surgeon pull a goo tooth and he made me take it home by saying , this was his first time he had pull a good tooth.
God bless
us and keep us and give us peace
Efrain34417,
Anyone on this forum who have not had any procedure, suffers of TN will needs to make sure that they see 1, 2, 3,4,5, and even six neurologist / even a six neurologist and neurologist br u let anyone do any procedure on them.
And 6 of each neurologyist and neurosurgeon try to see different neurologist and neurosurgeon at different hospitals you don't have to wait for a referral this is something that was put in place inby our Presudent.
We all can see any physician without a referral by having doctors send our medical info to each doctor, that we want to see .
TN suffers make sure that u c another neurologist and neurosurgeon, when u c them have them do their on MRI's on you..
This is coming from a person who had had the MVD surgery on July 27th and was released from the hospital on August 8, 2016 and is still suffering from Double vision.
I voice text on this forum because I have double vision with vertical, horizontal, and 3D Vision. I have to use a walker to get around .
I do believe that it is getting a bit better because at one time I could not see straight ahead but I can't see straight ahead now will let you know will let everyone know how long it takes to get correct.
God bless
us and keep us and give us peace
Metsfanlisa,
I had MVD surgery on July 27, 2016 got out of the hospital on August 8th 2016.
I have a dent in the back of my head where my doctor cut a muscle to get to the trigeminal nerve
I was getting shocks and pain to my face my shocks are gone, but I still get painl in a lesser form to my gums
God bless
us and keep us and give us peace
Omg,did the tn affect your vision before the surgery? My girlfriend is scheduled for gamma knife surgery on wed,she just has tn affecting one side of her face. I hope you get better soon. Xx
The Addenbrookes neurosurgeon Robert Macfarlane is the top dog in this area and he has special interest in TN. He will go through all the surgical and other options with you and he has a team that work with him. You need to choose someone who's done a load of these ops - he is one of those people. Get an MRI if you haven't already
Good luck
Cheers
Big D
If you have trauma to the nerve in the face what options do you i have as i have tried a couple different drugs im now on cymbalta i reluctant to stay on this drug because of the of the withdraw process is horrible any suggestion
Lee12629,
After the MVD surgery was done is when I woke up with double, horizontal, vertical, and 3D vision in both of my eyes.
I have noticed some improvements in both-my eyes, it is that I can see straight ahead, looking down was really upsetting to my stomach, but now I can look down.
I have been told my my neuro opthamologist
That my nerves were damaged and this would not have been had I had surgery at the on wewe my neuro optomologist works.
A tech who took me in for emergency X-Rays on the nite I fell trying to make it to the rest room in my home, she informed me her friend had surgery at another hospital and was in and out in 3 days with no after affects, the friend was in her twenties , the friend of the tech.
I have a dent in the back of my head below where the titanian plates was swewed onto my skull, I wuold feel a bit better if someone on this forum, would saiy that this was part of the healing process.
So far, I believe this dent is only my problem, i do know that it moves just like when the top of a new born babe cradle cap throbs, but mine throbs when I laugh or yawn, even when my bp is high.
My doctor said I may need Eye surgery or might ckear up on spot, glasses could help but would need to change every four weeks.
Some glasses called prism glasses, this is what my neuro optomologist says.
Bless us
and keep us and give us peace
I'm so glad to hear that someone else had TN start with an ear infection. They put a tube in the ear and that made it worse. It then got slightly better in the ear and is awful in the haw. I've had root canals, teeth pulled, was told it was TMJ and now the neurologist says it's TN but the neurosurgeon doesn't agree since the MRI and MRA don't show anything. I'm scheduled to get a 2nd opinion from another neurologist next week. Sometimes I feel like I'm going crazy because the pain comes and goes. I agree that stress and physical activity seems to make it worse. I'm so glad I found this forum because I don't feel so alone. None of my friends or family have any idea what I'm feeling. It's hard for them to be sympathetic when I physically look fine except the weight gain from the Lyrica which doesn't completely reduce the pain. My neurologist us very good, empathetic and still trying to get the right meds and treatment. Thank you!
My friend had the gama knife,only one week ago and she I s doing sooo much better.
So sorry about the eye problems,i have some not caused by tn and know how scarey and anxiety produceing it can be. Xx