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It’s been a while since I have felt like writing. I think about it, but the words weren’t there, until now. I first wrote about having Gamma Radiosurgery in September with the promise to write about the actual Gamma Radiosurgery procedure. You can read Part 1 of my story.

This part of my story begins with the trip to New Orleans for the radiosurgery procedure. I am very lucky to have had such a wonderful neurosurgeon who put me at ease the minute he walked into the room. The entire procedure, from beginning to end, is choreographed to keep things moving at a brisk pace. I was called back and there were two or three nurses with me at all times. One was taking my blood pressure, which was through the roof. But, then who’s would not be. Another was taking some medical history which wasn’t easy as I couldn’t communicate very well. We managed to get through that part and unlucky for me I was dehydrated which made the next part worse. The nurse, through no fault of her own, could not get the IV into my vein. She broke the skin three times before baring catching the vein, at which point, she told another nurse to grab the tape because she refused to break the skin again. So, while she shoved the needle into the vein to keep it there, the other nurse taped it in. All I could think was this is not good. It got worse.

I was given an oral medication to calm me down and then was given a second drug via the IV. I didn’t notice either one of the drugs having an effect on me. (I would later ask the doctor at my follow-up if anxiety would diminish the effects of the medication and he said yes.) Exhaustion would later catch up allowing me to sleep during part of the radiation treatment.

The preparation work continued when the doctor came to attach a halo apparatus to my head. Seems that during my pain-induced haze, that part escaped me when I read about the procedure and when the doctor spoke to us during my appointment. There was no going back at this point. I was in too much pain and in an effort to alleviate that pain, was about to have more.

The halo was attached to four different areas of my skull. I was given a shot to deaden the area and the screw was inserted? Screwed in? It was put in. The fourth screw was to my left forehead and it missed the deadened area. I was given a shot in one area and the screw was put in slightly below and the area was not deadened, and I was unable to communicate with them. I could not speak because of the trigeminal pain and no one, including a pain-dazed me, had thought of a signal if anything went wrong. I guess my situation at that point was unique. They just had no idea. In my follow-up with the neurosurgeon, we addressed it. He was mortified and apologized several times and agreed that some type of communication needed to be established according to the ability of the patient to communicate.

After the halo was secured I was taken to the hospital next door for an MRI. The halo was placed first so my head would remain stationary through the MRI and then the radiation treatment. The radiation has to be exact. There was also a small chance that the radiation could miss its mark and burn a hole in my brain. More on that in a minute.

Once the MRI was completed I was taken back to the clinic where the doctors settled on a course of treatment. The original length of the treatment was 30 minutes. It was changed to 55 minutes after the MRI results. Maybe my skull was a little thick – bad joke. I had no concept of time, partially because there was no clock available and due to the pain I was experiencing. Soon, I was taken to the treatment room where I lay down on a bed and moved into a tube-like machine, not at all unlike the MRI. The treatment began and I think the meds began to kick in as I don’t remember falling asleep but I remember waking up. The only thing I remember about the treatment is that it was noisy. You do not feel anything during the treatment so it can be relaxing (especially if you have drugs!) I do remember wondering about the doctor telling me about the chance of the radiation burning a hole in my brain. That was the only thing that bothered me. There was any number of things that could have been rolling around in my brain, but I was fixated on that one. So much in fact that as they rolled me out of the machine, all I could think of was how do I know if there is a hole in my brain. Will I be handicap? Will I be deaf? Will I be a vegetable (I was too afraid to even wiggle a toe!) I was on a visit to Crazyville at that point.

Before I knew it, doors were being opened and I was being wheeled out of the machine. Again, my thoughts had taken me to Crazyville and I was too afraid to ask any questions. They had me sit up and I sat up. I thought if I am sitting up, maybe it didn’t burn a hole in my brain. Then, they had me stand and I thought if I can stand, then maybe it didn’t burn a hold in my brain. I then sat in the wheelchair and they rolled me back to my room. I felt normal but I was still wondering about the hole in my brain. How would I know? Maybe I wouldn’t know but everyone else would. I never garnered the courage to ask, not even in the follow-up with the doctor.

The halo was removed and bandages applied to stem the bleeding and shortly thereafter I was wheeled out and we came home. If you know anything about Louisiana highways, it was not a pleasant road to or from New Orleans. It was a lumpy bumpy ride home but I made it. I managed to drag myself, who by this time was emotionally and physically drained, to bed and crashed for almost 24 hours.

The recovery from the procedure was only a couple of days, but the journey to pain free was, for me, approximately 8 weeks. I was unsure for a while if the procedure had worked. I was still experiencing a lot of pain in my forehead. After doing a lot of research, I was sure that I had two different neuralgias, which is not at all uncommon. Once the distinction was made, I began to notice some slight improvements that continued through September, October, November, and December. It was in November and December that I was able to figure out that my sinuses were affecting the Supraorbital Neuralgia. This pain comes and goes according to my allergies. With these developments came the knowledge that the radiosurgery had worked.

After my follow-up with the neurosurgeon, I was able to wean myself off of the drugs that I had been taking for the TN. This couldn’t come soon enough. The last drug I was prescribed was Vimpat and although it didn’t exasperate my depression and anxiety as the others, it did affect my short-term memory. As with the other drugs, I was having difficulty finishing sentences, holding thoughts from the beginning to the end of sentences, much less conversations. My husband would tell me something and by the end of the sentence, I had to ask him to repeat it. The other day I found myself putting clean dishes in the refrigerator. I told him if he found dishes in the refrigerator to not tell me. I told him to just move them to the cabinet and not say anything. I said just let me be oblivious to it. I didn’t want to know! I am feeling more like myself each day, which is nice. I can remember things. I can remember words. I can remember thoughts longer than a nanosecond.

And so, completes my story on Gamma Radiosurgery. If you have any questions, please comment. My intent is to educate people on Trigeminal Neuralgia and I welcome questions. If I do not know the answer, I will be happy to try and find the answer. I also welcome your experiences.