Booked in for the Glycerol Injection and need positive stories

Posted , 6 users are following.

Hi 

I’ve suffered from TN for 13 years. I’ve barely been pain free for the last 2 years and been on 3600mcg of gabapentine for over a year. I was using pregabalin before which does work well but I just couldn’t take the withdrawal anymore and the weight gain and drowsiness and other side effects so tried gabapentine instead. It’s helped but the pain still increases to a point that it’s difficult to cope with. Last week blowing my nose was a form of torture. I’m pencilled in for the glycerol injection on December 20th and feeling very anxious and emotional. I’m not eligible for the MVD so destructive procedures are my only option and it’s my surgeons preference. He’s apparently very good, Mr Demetriades in Edinburgh and has done hundreds before but there’s always so many horrible stories of things going wrong and bad side effects I just need to gone stories. I feel stuck between a rock and a hard place as being on such a high dose these meds indefinitely also run risks that are frightening. I’d be so grateful to hear some positive stories from you guys. My biggest fear is making it worse or causing more problems for myself and not even helping the one I already have. Big love to all if you struggling with this awful affliction, my heart goes out to you all. Sometimes I feel so alone. 

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10 Replies

  • Posted

    Hi

    I'm sorry to hear your story. I have no experience of the glycerol injection personally. I had an mvd in February. Although I can't give you any info I would like to just say in my experience, more people will be sharing things that have gone wrong rather than positive outcomes. Before I found this group I'd read all kinds of stuff and I was terrified about the operation. Then I found this place and found others who'd had the same procedure and that helped me enormously. I'm sure that there are others here that have gone through what you're facing and will help you. I couldn't tolerate either gabapentine or pregabalin so ended up with Carbamazepine (Tegratol). Both of the others made me feel suicidal! Take care and let us know what happens. Chris x

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  • Posted

    I too was on those meds. They didn't help. They zapped me of strength in my legs.

    This is why I went on a search  for a pain reliever that had no side effects. Turmeric is the answer. It's temporary but it does relieve the pain for over 10 hours!

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    • Posted

      I’ve used turmeric for lots of things as I also have ME was never quite sure how much it helps but still like to make turmeric and ginger shots when I have the energy as it’s just so good for you. I couldn’t rely on it to deal with the level of pain I have unfortunately but will keep it in mind for the flare ups thanks 
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  • Posted

    I take oral pills from Puritans Pride. They have buy 1 get 2 free now. I use Turmeric, El Carnitian & glucosamine.

    The combo gives me total relief.

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  • Posted

    Hello:

    You have suffered a very long time and I have heard of many patients getting relief with the glycerol injections and being pain free some for 4 years others 2 years and some for patients each injection can last for a different amount of time. No one seems to know why this happens. I had the MVD operation on July 18th 2017 but it did not work and I am still in pain. Now they want to reoperate and shred the nerve fibers apart but there is no guarantee it will work. Then my last choice is the glycerol injections.

    I wish you the best and lots of luck that this treatment works for you.smile

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    • Posted

      Thanks so much for your encouraging words. It’s just great to hear of it working for people. I’m so sorry the MVD hasn’t worked for you this time, it must have been so disappointing. My biological mother had it done a few months ago and it’s worked well, she had 2 nerves compressing so had 2 sponges in but so far so good. I truly hope the next one works for you 😊

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  • Posted

    Hello again

    Thanks for your reply I am glad it work for your Biological mother, I am 63 and could not take another surgery right now its only been 4 months and I am just now Almost back to normal. My meds keep the pain away for now. MY options are limited another surgery or glysol injections.I will be making a decision when I can right now my therapist says to hold off as this has been a very traumatic ordeal for me. 

    I wish you success and the more we share toi more it helps everyone.

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    • Posted

      I’m sorry that’s awful you’ve had to endure all of that. I hope something works for you. This is such an awful condition we live with, it’s hard to understand until you experience it. Wishing you all the best 
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  • Posted

    I was wondering how your injection went? Are you getting some relief?

    I hope so.

    I had MVD in Oct. 2017 and it helped but I'm getting pain more and more often and more severe. I don't want to go back to the way I was before and have opted to try the Glycerol Inj. Was hoping to hear you had good luck with it.

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