July-2015: TN onset disguised in the pain form of cracked molar tooth pain on the right side. Misdiagnosed as tooth problem till July-2017;
Mar-2016: Remission till July-2017;
July-2017: Relapsed during eating and pain everyday since then; Interim CT & MRI brain done;
Jan-2018: Had MVD#1 operation, pain remained, MVD#1 failed;
Aug-2019: MRI again, compression still exist, insearch of a more competent neurosurgeon specialised in MVD for TN;
Past 2-3 year, hardly live like a normal human being!!
Hello Snowboot. So sorry for your struggles. I have TN as a result of a multiple sclerosis lesion in pons area of the brain which is inoperable. I have been struggling with it since 2013. My medication Tegretol keeps it under control for the most part. I keep thinking that there should be a way that I could find to heal this! I want to find a solution. But I have to not get depressed or even worse anxiety prone. Welcome!
Hi
You be in Ontariario?
There is a TN group in Toronto area and a lot of people go to Winnipeg for surgery.
If you want to get hooked up with the TN group I can get you the info.Just don’t have it on me right now.
I have the atypical type-meaning they don’t know anything and basically if I did not have a narcotic prescription before it happened I would never have been given them at all and I would be a bug eaten bit of bones right now.
Where did you have your surgeries?
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Sorry to hear that the MVD failed. Like you I had dental work back in 2014 and was not diagnosed with TN properly until 2017. Have tried Tegretol which keeps it at bay and also had chiropractic work which only helped when I did neck decompression using traction equipment. Have no idea why it worked. Now trying acupuncture and TN, which was flaring quite bad a few weeks ago, is going into remission. Again not sure how this works. Like others you would hope that more money is spent looking for a solution. I understand it is a complex condition. Am hoping that acupuncture works long term and not just temporary relief. I really hate taking medication and not really keen to have an operation. Keep being positive and hope the next intervention works for you.
For the treatment of trigeminal neuralgia and other facial pain for 30 years, I have been using intraosseous therapy - this is intraosseous administration of drugs. The results are very good, even in patients with returned facial pain after MVD. www.pain-clinic.ru
Really feel for you. Sending comfort. WW
Hi, So sorry to hear about your troubles with TN. I had MVD also that did not work. I have right side of face total dead, deaf in right ear, right eye blind. I was told it happened because of all the scar tissue from previous operations that caused it. HUM! I was 2 weeks in ICU, 4 more weeks in nursing care before I could function again. I was disabled by an accident before I got TN so I can really appreciate how you feel. Don’t give up, its tough but hang in there. When things get to looking bad think of all the people that will be so hurt with out you there. Love to you and Jesus loves you so hang tough ok?
I had mvd and 2 weeks later the pain returned . Had “glycerol rhizotomy” and the pain went away for a few years. When it returned I had another G.R.and so far have been pain-free. I hope that I never have pain again but if/when it happens I will have another G.R.
dear Snoboot.
So sorry about all your troubles with TN. I will keep you inmy thoughts and prayers.
People have no idea how we feel with T.N. Even if we are in"remission" we NEVER forget that at any moment the pain could strike .
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Dear Spikiegirl:
You are correct 100% because it is a totally transparent illness or disorder. One has to experience the pain intensity inorder to appreciate what we are talking about and our pain description. Thankyou for your support and experience sharing. Hope we will see the light of the tunnel!!
Be strong and keep fighting.
Snowboot
Kudasai:
Thankyou for your support and prayers in advance!!
Snowboot
Wheels4legs:
Thanks for your experience sharing and supports. You too hang tough and strong for getting through this terrible suffering.
Snowboot
Thanks for the warm regards and supports. WW
Snowboot
Evegeny_sokov:
Thanks for the info and supports.
Snowboot
Carmelo:
I tried Tegretol and a few others, but finally settle on Trileptal & Lyrica which are most compatible with my body feeling with respect to its side effects. I am a bit apprehensive with regard to the next operation after the failure of the first MVD. I tried also accupuncture and got no positive response. It seems to me TN express itself in many pattern of pain and configurations as I found the trigger zone/points also move about and radiate pain pattern is also different which make me very fearful of any movement attempts. Hope you also come through without pain, best regard.
Snowboot
Msbluebells:
Thanks for your support and advice on depression and anxiety prevention. Trust there has to be a solution out there!
Snowboot
, We did pray for you last night. Are you feeling any better yet? If not, hold on! Soon it will be your turn.
Hi, thank you for the nice note. You have my welcome and my friendship.
Wheels 4 legs, said all that?
