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Any advice for possible MVD surgery

Posted , 7 users are following.

daw97040
daw97040

Hi there, please could anyone offer and advice!..I have recently found out I have trigeminal neuralgia..with Artery contact to cranium nerves 7 & 8..this has only been found after suffering for 20 years of lower face pain radiating into teeth,gums and jaw joint.after haveing lots of dental treatment and fed up of being shoved onto painkillers I eventually got referred to the QMC to see a specialist..after having two arthroscopys it was found I had clenched my way through the disc protecting the joint..so last year I had to under go a discectomy..in between all this I got to see a pain specialist who was furious that no one had bothered to do a MRI scan first to see what was going on..so two weeks after surgery I was scanned which shown the compression,I have to now go back to the QMC to see the neurosurgeons..I have been advised to have the surgery due to the length of pain and that the medical side is failing..iam taking carbamazepine 200mgs, pregabilin 300mgs and diyhdrocodine 60mg qds..this is helping with the face prickles and headaches but joint and lower face is back to aching!..I have been diagnosed as depressed a/w psychiatric review!..I have been off work for 10 months and feel the lowest I have ever felt..I feel that I have reached the maximum of coping with this!..is anyone else out there who is at this point who can help and advise me?..feel I've lost my way abit...thank you..

1 like, 21 replies

21 Replies

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  • wavedancer
    wavedancer daw97040

    Posted

    Hi, I've had my operation 11 days ago and its amazing. I have no pain and

    hopefully won't for many years to come. Yes it's a major operation and like

    any surgery carries risks, but for me it has given me my life back. The pain

    was gone straight away. The operation itself wasn't as bad as I thought. There

    was minor pain because of positioning your head during the op but I only

    needed paracetamol for that. The main thing is to ensure the neurosurgeon

    you see has experience of doing the surgery. Let us know how you get on.

    • army183
      army183 wavedancer

      Posted

      Hi Wavedancer

      My reply just now was supposed to include you - so you may have to check back a couple of messages- sorry

      Big D

  • army183
    army183 daw97040

    Posted

    Hi Daw and TomsMum and W and all

    I saw that you were going to see your neurosurgeon on 27 Feb Daw - how did that go?

    Went to Addenbrooke's for the pre-admission tests today and everything was OK so getting ready for checking in on 09 March at 07:00hr (!!!) I'll have to leave home about 05:30. A big surprise was to hear that some people get on so well that they are able to go home in the evening of the same day. That would be really good - but as I seem to be logged in for 11.30 start and the op is >3hr, so I was told, can't see me getting over the anaesthetic and being kicked out all on the same day. What about your bloke TomsMum, did he stay in for a couple of days?

    Keep in touch

    Cheers

    Big D

    • TomsMum
      TomsMum army183

      Posted

      We had to be at Addenbrookes on a Monday for 07:00, husband was first on the list & went to theatre at about 08:30.  It was a long day waiting for him to get back to the ward so I can't really remember what time it was but seem to think it was around 14:30 - 15:00, longer than I expected anyway & he was a bit sick after but.....he was well enough to go home on Wednesday.  We're only about 30 mins away (Peterborough) but the journey home took me nearly an hour as he was a uncomfortable in the car, take your time!   Was a bit paranoid about washing his pillowcases & scrubbing my hands before I changed his dressings, no problems at all with the scar all healed beautifully.  He's still got quite a bump behind his ear where the titanium mesh is, nothing to write home about though. Also post op he had some hearing loss, that gradually came back, though I think it's "convenient" to have when I start nagging...lol.

    • army183
      army183 TomsMum

      Posted

      Hi TomsMum, Daw and W and other TNers interested in MVD.

      Mine was done by Robert Macfarlane on 09 March - yes indeed, he's the man!!! The pressure dressings were taken off on Sat 11th and I went home. TN pain disappeared immediately but head felt like it had been in a cement mixer. Wound healed up very well and still making good progress at week 3. No half mohican or row of skin staples, my friends are quite disappointed. I think I reduced my Carbamazepine a bit too quick because have had a low level TN-like pain starting about 9 days after op. Mr M said it was not surprising due to the local inflammation etc which needs to settle down. I'm not increasing the meds to control it because I won't know if it's actually gone (or going) if it's masked by higher doses of carbamaz.

      Seeing Mr M on 25 April for full review.

      Been signed off work and no driving until 14 April. Progressing slowly but surely, main thing is waves of exhaustion if I go out for a while or walk too far (about a mile). That's no problem, my wife is performing her function as Matron Strictly so I'm kept active with appropriate regulation!

      How's things progressing with you all please?

      Cheers

      Big D

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