I went in for gamma on Monday and things did not go well at all. Anyone who tells you that gamma is easier than mvd is a liar! First of all, the local anesthetic they use before the screw the head contraption on burns like the fires of holy hell! It was like someone was injecting large amounts of acid under my skin. I’m no wuss (I’ve been through two mvds and apparently a really bad case of tn) and I couldn’t help but cry out in pain as tears rolled down my face. Then the tears on my left side made my tn worse so I had to ask the nurse to very gently wipe them off. They did give me fentanyl via iv for the pain and to relax me, but it was clearly not enough. When they started screwing the head gear on I couldn’t feel anything, but the sound of the metal on metal grinding with each twist of the screw was so disconcerting. After they had all four pins screwed in tears were still streaming down my face and I was just about at an all out panic. Then they started touching my face. Yes, THE BAD SIDE! They kept telling me they had to do it and that they were being as light as they could, but that was of no comfort to me. That was the last REAL thing I remember. I apparently had a 14 minute long seizure that took three large doses of Ativan to bring me out of.
I had no idea I had a seizure, or that I had lost touch with reality. My experience during the seizure, from what I remember, was that I was on some sort of adventure to save my life. I had a large white gift box with a big blue ribbon around it from my deceased grandmother, and whatever was inside the box was the missing piece that would save my life. I kept telling the doctors about the piece in the box, but nobody was listening to me.
My doctors told me after the seizure that I was actually talking and telling them all of these things in reality. They said they were amazed that after three doses of Ativan I could still speak. Clearly they didn’t know how talkative I am! I have no remanding damage from the seizure, and two days later I am mostly just feeling fatigued. The two holes in my forehead from where they screwed the head gear. On are still very sore, but the ones on the back aren’t bothering me too much. I have to reschedule the procedure with an anesthesiologist present now, so it will be another few weeks before I can try again. I really hope they knock me out this time. I don’t know if I can handle all of that lucid again. As it stands my tn is still the same, if not worse, I have hoes in my head that hurt, and I still didn’t get the treatment. Oh, and yesterday was my 33rd birthday. Happy birthday to me!
Happy Birthday & Sorry:(
I'm so sorry you had to endure this kind of pain. I hope your future treatment goes better. I would insist on be "knocked out" next time.
Sounds like you are in for a birthday re-do!!! I'm sorry for what you went through. Plan a party or whatever for yourself, and have a great time, after you procedure!! blessings~~
I am so sorry you had such a bad experience .
I didn't find it nearly so bad ,sure having the frame fitted isn't the most fun but lots of people were doing it with the neurosurgeon doing the front bit and talking to me all the time .they did it as quickly as possible .
As soon as the frame is on it dosn't hurt anymore ,odd laying in the MRI machine with it on ,also I had a weird experience of being wheeled across a courtyard to a different part of the hospital ,had to laugh but I am sure members of the public around Barts are used to us .
The staff were all so very kind and the treatment itself was so easy .
All in all I found it a very easy procedure with little pain ,I am sorry it was so bad for you ,better luck next time x
Sorry fir your negative experience with this procedure. Sounds like a very difficult time for you. Hope your resting now and reenergizing mentally and physically in attempts to retry this procedure. All the best to you! Also a Happy Birthday sweetie!
My Best
Joanne xo