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My TN experiences in a nutshell

Posted , 4 users are following.

Baudwalker
Baudwalker

Hi Everyone

We should all be well aware that each and every occurrance disgnosed as TN is usually specific to that person and not a general set of circumstances.

Mine started over 3 years ago, like most I went through the medication variants and ended up with Lyrica 150Mg, 150Mg and 200Mg evening spread equidistantly over a day.

Then oxcarbamazine 600mg 4 times a day (max recommended dosage)

I fell foul of all of the usual happenings from the easy to the extreme other end of things as well.

The GuRu's had me listed as 'A Mystery' for over a year and they chased everything as far as medical technology would allow in the SW of the UK.

It all came to a head last Tuesday (2nd August) and my ENT surgeon performed a radical parotidglandectomy(?) and totally removed the PAROTID gland on the left side of my face. Not a pretty site now but the end result should be the bonus.

They didn't chase the Trigemal nerves as all indicators were the damaage had been done and they were just unpaying passengers. They just took them ALL OUT with the gland which had returned indicators of cancerous cells.

One week later and OFF ALL MEDICATIONS and the worst pain I get I can control with just 15Ml of Oral Morphine and nothing more. I am fully ready for this not to last but after so long having constant underlying pains ALL of the time to have just 1 hours pain free is a revelation.

I know things may well end up different all I can say is keep chasing then end game and don't be bumped off line for anything. I had severe doubts many times over the years but now I am about as happy as one person is allowed to be on any given day.

This should also serve to explain just how individual this horrible complaint can be and usually is. My Biopsy was what changed my decision on surgery and the TN relief was a BONUS (BIG ONE BY THE WAY).

I can only wish that everyone else will have similar results to mine just as soon as is possible. I am happy to expand any items anyone wants as long as they are aware that my circumstances will probably not emulate any other individuals and any advice is GENERAL ADVICE referring to my circumstances. Any alterations of any set of treatments should only be undertaking with the full knowledge of Your GP.

All the best to all members of these forums.

 

0 likes, 4 replies

4 Replies

  • angiegirl
    angiegirl Baudwalker

    Posted

    Been waiting to hesr from you. So pleased for you that your op was a possative thing and that you are now vertually pain free. Great.       Whats the next plan, do you have to go and have more treatment or are you pain free and trouble free now that thr Parotid gland has gone.      Can you eat OK and drink.       You take care and come on from time to time and let us know how things are going.     Take Care.    Angela.
    • Baudwalker
      Baudwalker angiegirl

      Posted

      Hi Angiegirl

      Thanks for the well wishes and I certainly feel very happy with things as they are now.

      By the same token I am not kidding myself that it is all over red rover!. I am enjoying things as they happen and keeping my guard up ready for anything to happen. I am realistic enough to be ready for it all to come back even although I doubt it will ever become extreme.

      I still get different twinges and little 'reminders' just to keep me on my toes.

      REMEMBER that the biopsy showed signs of cancerous cells and that was the end trigger that made me go for the surgery. These other improvements are a bonus and just another thing to keep everyone going to find their end game.

      The logic in taking the Trigemal branch nerves was the symptoms were that they were damaged beyond any sort of potential repair position and if they are gone then that was one more item we could discount totally. AND IT WORKED.

      No ticket to ride means no free travel in my body!!!!!

      I will be keeping in touch with the forums and I will let everyone know of any other major changes (good or bad) as they happen.

      Just for now I am just one happy puppy and intend to get on and enjoy life.

      I just hope everyone eventually finds a soloution for their individual ailments

      Good Luck

      Ray

       

  • susan33651
    susan33651 Baudwalker

    Posted

    That's good news, not about the cancer, obviously(!), but that you are now relatively pain free. I have a lot years experience as an ENT nurse and this type of cancer is incredibly uncommon. I hope that you remain cancer free and perhaps more importantly from the TN perspective PAIN free!

    And in the best possible way I hope we don't hear from you again :-)!!

    Hugs and best wishes to you.

  • paul49262
    paul49262 Baudwalker

    Posted

    Hello

    Wishing you well after your surgery and pleased to hear that you are off of all the medications. It must have been a Worry to hear about the cancerous cells but at least the surgery is behind you and you can start to live pain free.

    All the very best to you as you start to recover 

    Paul

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