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Anyone had GammaKnife surgery, if so was it successful?

Posted , 7 users are following.

patricia_2468
patricia_2468

Just wanting to get some info about GK surgery.  How did you find it, was it successful, etc.  Thanks.  

1 like, 11 replies

11 Replies

  • colin04561
    colin04561 patricia_2468

    Posted

    Hi Patricia,

    I had GK in late 2014. I had relief for about 3 months once the procedure "took" and then it just came unravelled. Granted, once the pain came back, it wasn't as bad as it had been, but I was on loads of Tegretol and Baclofen until I had a MVD in June 2016. I think any surgeon worth his or her salt is going to recommend trying GK before MVD. The success rate is very high, the side effects are practically non existent and it's fairly economical. My MVD is going to be about 16k USD whereas the GK was around 4k USD. You'll have a headache from the head cage they pin onto your head for the procedure but that is the day of. Once the GK is over, you'll have 4 pin spots on your head that will heal in no time once they remove the cage. It's that easy. Dr. Sahni in Richmond, Virginia U.S. did my procedure.

    • Tnhurtsme
      Tnhurtsme colin04561

      Posted

      I'm really lucky I have gamma knife in my home town of tyler Texas which there are not very many of these machines I as have looked them up do you have insurance as well

    • patricia_2468
      patricia_2468 colin04561

      Posted

      Thanks for your quick reply Colin.  I guess you don't know until you try, so even though the GK didn't work for you, I hope that your MVD proves to be successful.  How have you been so far?  I'm trying to weigh up between the two.  

       

    • Tnhurtsme
      Tnhurtsme patricia_2468

      Posted

      Me two but I got mine from an ear infection so I don't think that will help me other then gamma knife

    • colin04561
      colin04561 patricia_2468

      Posted

      I'm about a month into it and it's been fine thus far. As I'm only 40, I worry about the long term prospects even though all the data shows that the MVD is a life long solution for most people. I had wanted the GK to work and to an extent, it did. I was pain free for 3 months after 3 years of suicidal thoughts. It gave me hope for the MVD so in a way, the GK was not a complete failure for me. I know others from my office visit that have had the GK and are pain free as well as meds free. One of them has been this way for 6 years now so there is hope with GK.

    • alan21271
      alan21271 colin04561

      Posted

      Hello,

      Interesting topic as I also have TN. I'm not a Doctor but understand there are risks associated with GK 

      a) increased facial paresthesias b) anesthesia dolorosa.

      The latter being untreatable as I understand.

      Still the outcome may be on balance better than the TN pain!

    • patricia_2468
      patricia_2468 alan21271

      Posted

      Quite right.  There are similar risks with all of the procedures.  Another reason that is making the decision difficult.
  • Valkyrie
    Valkyrie patricia_2468

    Posted

    I have had Gamma Knife Surgery in the (Australian) winter of 2015 so approx 1 year ago.

    At first I would have said that it was unsuccessful but now I am not so sure. This time last year on the same dose of medications I would wake each morning and have electric stabs of pain which made it difficult to even open my mouth to take the drugs. Also, as each dose took time to work, I would have about 2 hours pain free and then start to get stabs again for an hour or so until it was time to take the next dose. I was pain free this year between April 15th and July 15th but then got pain again as I think I tried to lower the medications too quickly. Back to the usual dose again now and gradually getting back to my pain free status. It is winter here which is the worst time of year for me esp when it gets down to about 10degrees in the day and maybe 8 overnight. I think Gamma Knife made things better than they were and still hoping to be able to reduce medications further as the warmer weather arrives.

    • patricia_2468
      patricia_2468 Valkyrie

      Posted

      I,too,live in Oz - Melbourne.  Where did you have yours done?  Unfortunately with GK it does seem to take quite some time to notice any benefit, so I have read.  Did you have any of the side effects that possibly come with the procedure?  My worst time seems to be evening and while I'm in bed.  Therefore very little sleep.  I empathise with the swallowing bit.  Very difficult.

      How bad do we allow the condition become before we do something about it.  That is my dilemma!!!!!!!!

  • michael64483
    michael64483 patricia_2468

    Posted

    Had an MVD in 2002 & 2 Gamma Knifes, 1 in 2010, 2nd in 2014. Worked rather well for me . both times. suggest staying on tegretol extended release of at least 400 mg daily for at least 3 months after surgeries.

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