3 weeks after Gamma Knife Surgery

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3 weeks after Gamma Knife surgery. The lightening strikes have almost stopped. I still have the headaches which I think may be the Lyrica. When I wake in the morning I have a burning sensation and one or two zaps of electricity. By 9am they are gone and I feel ok until about 1.30 when I take the next dose of meds, although I am fairly useless due to the Tegretol and Lyrica as I have not reduced the dosage yet. Then I am largely pain free(ish) until about 9 at night and at 10 I take the last Tegretol and Lyrica of the day and go to bed.The doctor in Sydney is sending me an MRI request to have done locally and the results sent to him. I notice I have been clenching my teeth in my sleep which gives me a jaw-ache so I have bought a night-time mouth guard. I hope to start reducing the Lyrica 25mg a week beginning on Monday and see whether the improvement allows that.

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  • Posted

    Hi there

    Thanks for sharing all your experiences following your surgery and I hope things improve for you.

    Would you tell me a little more about the actual experience itself ie the  Gamma Knife operation. I can get formal information from the internet, of course, but what you personally experienced and your involvement in the run up to the procedure and immediately afterwards, would be most valuable. There's nothing like a first-hand account!

    Thank you. Col

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    • Posted

      Hi Colin,

      I had to fly to Sydney twice to have MRI's done there because the hospital said that their MRI machine was more sensitive and would show more of what the problem was. The day of the Op I went with my husband to the hospital and they took me into the Gamma Knife Suite where I was introduced to the nurse who would be with me throughout the process. She took me to a room to wait. I did not have to put on a gown or anything, just stayed in my jeans and t-shirt. The nurse did the usual blood pressure and told me what the process would involve. After a while two neurosurgeons arrived and introduced themselves and said that they would be fitting the titanium frame. They made sure that I understood what this would entail. They took me to the room next door where another doctor (in a snazzy suit) stood with a tray full of quite large syringes on a stand was. He was holding the titanium frame. The doctors were telling me the whole time what they were doing next and why. They gave me an injection of anaesthetic into my far left forhead and then the right forhead which took a while because they were slowly pushing the liquid under the skin. They waited just a moment then picked up half of the frame and holding one side each took a screw from the tray and a screwdriver and started screwing the frame to my head. They said that it didnt penetrate the skull but I still don't beleive them. They then did the same to the back of my head and then screwed the two halved together on top (I think). I then had to wait while (for another patient to be finished.) A nurse arrived and offered me a sedative. I said no at first but changed my mind before I got into the machine. The nurse who was to accompany me then brought lunch for my husband and me and we watched part of a movie. Soon the nurse came again with a wheelchair to take me to the Gamma Knife. My husband was told he could not come along now. Now a fourth specialist arrived and introduced himself. He said that he was to be responsible for me and for advising the Gamma Knife Technician how to program the machine in my particular case. When they were done I was wheeled into the chambed. I was to lie on the bed just like for an MRI except the first two doctors now explained that they would slide my head frame into slots on the bed and fasten bolts so that I could not move at all. This part was a bit frightening as I am slightly claustrophobic. They slid me into the machine. It was inside just like an MRI machine. They said they would now begin and all left the room. There was no noise. There was no music. At 2pm they pulled me out to take my usual dose of Tegretol the put me back in like a cake into the oven. I fell asleep. When I woke they were dragging me out again and it was over. The nurse took me back to the Gamma Knife Suite and bandaged my head quite tightly overseen by the neurologist. They kept me there for a couple of hours then let me go back to my hotel. I bled all over the pillows in the night. The hotel took no notice and just sent a bio-hazard team to clean it up. I flew home the next day. If you want photos I would need an email address to send them to unless you are on Facebook. Regards, Valkyrie

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  • Posted

    Hi

    Just been reading your post. My Dad is scheduled for gamma knife on Thursday, just wondered if you had any advice? I hope it worked for you.

    My Dad is on 600mg carbamazepine, but it's not really working but he can't tolerate any higher dose. The surgeon said that he has classic TN.

    Thanks

    Tracey

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    • Posted

      Where is he having it done, Tracey?

      He needs to realise that having the pins put it does not hurt but it can be unsettling so I hope someone will be staying with him except in the actual machines. We all need a support person. He should be aware that the pin sites do bleed afterwards. Mine were ok til i went to bed that night. Woke in the morning to a saturated pillow. It's common.

      I was hoping for instant relief and indeed this is the case for many but mine took a few weeks to do much except that before the procedure I was having to increase my Tegretol dose every three weeks and this immediately stopped. Don't be discouraged if it takes 2 months or more to help. Realise that stress will make it worse as will the cold.  There is no sensation to the actual Gamma Knife and no afterpain except a possible headache which is prob. from the headframe. If they offer him a sedative, do take it. Think about whether he needs to go to the toilet before having the actual procedure, it can take a few hours for some people- mine was about 4 hrs I beleive. Some places, they play music. Mine didnt. I sang to myself (silently) until I fell asleep. I got a bit scared before they put me in there so I reminded myself that Mum was in WW2 and helped her brother aim searchlights from the fields onto the Bombers that were heading to bomb Bristol. Wish him luck for me.. I would send an ecard but this Forum does not allow I think.

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    • Posted

      Thank you so much for your reply.

      We are in England, he is booked in at Sheffield gamma knife hospital. My Mum and I are staying over with him (we live 2 hours away) and will now definitely make sure we're with him while he is getting ready.

      He is just desperate to do something to stop the pain, we have discussed that it might take some time after the operation to work. I'll warn my Mum about the bleeding so she doesn't panic!!

      These days we forget about what people went through in ww2 we expect things to be easy!

      Fingers crossed for Thursday.

      Thank you again

      Tracey

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    • Posted

      Hi, thanks for your advice. Just to let you know Dad had his surgery. It was fine, a bit nerve racking at the time but it wasn't as bad as he expected. Anyway, since the op he has had 1 shock and that is all! He's so so much better. I know it's early (& was possibly in remission) but he really can't believe the difference.

      Hope you're well x

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    • Posted

      Oh, hey, thanks for dropping to let us know how things went. Tell your dad I wish him all the best for his future. He should be good for quite a while and I beleive they will re do the op in 3 years if needed.

       

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