Gamma Knife Radiation

I am now over two months out from the Gamma Knife radiation. I can now rate it up there with the some of the top hated procedures. I guess I cannot complain about heart catherizations without sedation anymore after experiencing that. The frame was absolutely awful. But, I'm a big baby when it comes to people messing with my head anyway. The pressure of the frame was extremely painful, to the point where it felt as though my skull would crack when they were screwing the pins into it. The process includes only a tad bit of sedation so I was fully aware and alert. They injected lidocaine into the pin sites and then they screwed the four pins of the frame, two on the forehead and two on the back of the head, through the skin and tissue all the way to the skull. I was hoping they'd put me in some sort of twilight sedation but that was not the case. I was extremely agitated and upset.

By the time my CT scan was done and I had waited around for some time, the lidocaine had worn off and the pin sites were sore. They offered no pain killers and I had a migraine. The actual Gamma Knife procedure was 80 minutes long and I had to lie flat with my head still in the Gamma Knife machine. The weight of my head was basically on the two pin sites and by then they were sore and my head was throbbing. I had taken my migraine medication but I had a frame squeezing my skull and four pins screwed through my head and I was trying to tolerate lying 80 minutes on two of them poking me directly through the back of my head.

Surprisingly removing the frame hurt and caused a strange intense headache that lasted about an hour after it was removed. I still had a migraine but suffered from the pain of the frame too. Afterwards, the nurse tended to the pin sites, which were oozing a bit and swollen.

I was able to leave after I was settled and bandaged up. I felt nauseated at first, especially with the migraine, but was able to eat a little later in the day. For the first couple of days I slept a lot. My pin sites remained swollen for several days and were sore for more than a week. I had an area on the left side of my scalp that remained numb for a couple of weeks.

Now I wait until we do the follow up MRIs. That will let us know whether it was all worth the trouble. Hopefully the Gamma Knife radiation stopped the growth of the tumor or killed it completely.

List

Somehow when I returned from Cleveland Clinic I had a whole list of things...
1. The meningioma has grown. It is now time to take action before it presses into the optic nerve and causes issues. Because of the area it is in, they want to do Gamma Knife Radiation. I will be meeting with the neurosurgeon soon.
2. At a little over two years out I am suffering from bone loss due to the transplant drugs. (No, you are not getting taller... I am shrinking!) They have added a weekly oral bone drug to my regimen. Hopefully this helps so I can avoid shots or infusions.
3.We have switched my main anti-rejection drug from Tacrolimus to Cyclosporine. Cyclosporine was considered the gold standard, the original anti-rejection medicine that was used for many years before Tacrolimus became available. Unfortunately it is nasty. Each capsule comes in a foil pouch, not to be opened until use. I realized when I first took it why it comes in a foil pouch. It smells like skunk. That's why it's in a nice little foil pouch. It's like a little skunk bomb when I open it, and I have to open several foil pouches twice a day. How pleasant. Anyway, the switch is happening in hopes it will help with the migraines. Anything to help keep me out of the emergency room. I am still ending up there about once a month. Anything is worth trying so I am glad the transplant team is finally playing around with the big meds a bit.
4. I have another case of tendinitis. Different leg, different spot. Yes, it hurts. But, I don't know why. It just happened. Didn't do anything to it. But, it's not too bad. I need to limit walking, especially downhill, and I have some special stretches for it. It is slowly getting better.
5. Cardiac function looks fine. Even though my heart rate is still high (and will probably always be) due to the heart failure in the past, considering everything, hey... that's okay!
6. Spirometry readings are good. Lung function is wonderful. Thank you to my donor. I wouldn't be alive without you. And despite everything, I am not complaining.

Something in my head...

Let me begin by saying I am not complaining. Because like I say, things can always be worse. But I do often shake my head in disbelief. Can the universe just give me a break?

The MRI of my head revealed a small mass. So off to Cleveland I went so doctors could get a better look. Thankfully it is not cancer. It is a meningioma, about the size of a marble, and is in my frontal lobe. The risks from surgery are greater than leaving it there, so for now it will be watched. When it becomes more problematic it can possibly be removed, more than likely destroyed by radiation. 

Quite possibly it is not the cause of my migraines but could be causing some of the other issues, like the forgetfulness and memory loss, which I've been blaming on the surgery and medications. Of course any or all of it could possibly be a combination of the two. 

Once again, no one knows the cause of the meningioma. There's speculation meningiomas are the result of exposure to radiation, hormones, etc. I take a serious amount of medicines, some of which increase my risk of many things, especially cancer. The doctors don't have answers. I've given up guessing. It's not worth my time. I'm already living on borrowed time in a body that only runs on 1/16th of the energy it used to, with recycled lungs, in a polluted world that threatens my suppressed immune system. I'm doing the best I can. And that's all I can do. I knew what I was getting into, agreeing to be a transplant patient. It was either taking on all the risks or dying.

And while I have this thing in my head, my lungs are working wonderfully. My numbers have increased and my walking distance has improved. Migraines still land me in the hospital at least once a month with vomiting and dehydration. I did round two of the Botox injections in my head and neck and it is supposed to help decrease my pain and need for triptans. If things do not improve as expected we plan to experiment with some different migraines medications. I'm still hopeful we will see some improvement yet.

So, if I continue to mix up words or forget to call you back, forgive me. I have a lot on my mind. (Apparently, literately.) I spend a lot of time just managing my health issues. I spend a lot of time at appointments, getting blood draws, doing paper work, and making phone calls. I can only manage so much in a day before I feel ill. I need reminders. I need time. But, Spring is here and once again the world awakens full of beauty after its long winter slumber. This will be my second summer with my donor lungs and I expect it to be better than the last.