Desperate!! What is my best option for a procedure

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Which procedure gives us most sustained results with fewest complications?

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  • Posted

    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

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    • Posted

      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 

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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

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    • Posted

      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!

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    • Posted

      Sorry too hear that im going through the same trying to a medcation thats works i have had to mix drugs together to get pain relief my body just gets used to them way to fast an it quits working right now im on gabapentin an oxcabazpine i tried amitriptyline which worked great but i broke out in a heat rash from it im very sad to have come off it my pain is constantly hurting though not off or on it stinks but i take every day with pride an strength
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    • Posted

      Hi Mary and tnhurtsme

      how interesting.. my tn also started through an infection. 2 years ago ended up in hospital with the doctors trying to figure out where all my symptoms were coming from plus blood tests showed high white blood cells. A long story but the only positive result was legionnaires(bacterial) which was weird. At that time my face on one side developed pins and needles, vision was blurry and then this was on and off like that for months, then the burning tight feeling started up which is now progressing into pains like stabbing , spasms, tight feelings, burning etc aches. Sometimes my face feels diseased? It's awful and my heart goes out to you all. But what's our options? Can we get surgery? I don't have a compressed nerve so is it a life on medication?

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    • Posted

      Ive been looking at options but you have to be careful on surgery but pray about it also i have been struggling with medcation but it looks like we could take any anti-seizure medicines for the pain
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    • Posted

      Caroline,

      I agree, stress definitely aggravates TN as well as many other things! I was wondering if anyone went to a functional medicine physician? One was recommended to me by a friend who is an RN who I highly respect. I think I'll check it out, it can't hurt!

      Have a HappyThanksgiving,

      Mary

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  • Posted

    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. 

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    • Posted

      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

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    • Posted

      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
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    • Posted

      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

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    • Posted

      A-fram 34417,

      Hi

      I take Gabby 900mg (3 × 3) @ bedtime or if any pain or feeling of anything coming back, also take with Gabby Oxcarbinazapine (100 mg) if I go up on Gabby I go up on Oxcarbinazapine. Slightest pain in gum and boom I take my pills.

      No pain in other parts of body from these pills, but at one time b4 MVD I was walking around like a Robot, many pain meds no work on me but these do. I have many allergies, morphine does nothing for me, anathesia alwats made it hard for ne to wake up, I scared my doctors to death.

      Take Gabby and Oxcar, just let doctor no u will be upping the dise.

      Still have double horizontal vertical and 3D Vision but I can see straight ahead and n looking down it's still not a good idea for me but it's getting better so far I'm just hoping I don't have to have a surgery.

      Happy Thanksgiving to everybody and Merry Christmas to everybody because I'm not on here again to let everybody I know what's going on before the holiday.

      God bless

      us and keep us and give us peace

      P.s, let's all pray for each other and all the other sufferers of this Dreadful TN disease.

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    • Posted

      I feel for you my medcation has to be mixed alone with gabby is not enough i still get crushing pain but with oxcabazpine its managble im hoping i get to use this mix for a year or more before changing again i have tryed several they all suck
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