I apologize friends, for not a peep since my last post anywhere here. It is not because I haven't been around. Just too "whatever"? to put my fingers on the keyboard. I love you and thank you for taking the time here. I hope I don't go on and on but I am known for novels....prolly because I take too long in between sharing right? Anyway...
After a turn down by one set of Gamma Knife Specialists because they had never done a procedure on a Geniculate Neuralgia patient. I went to Ben for help and checking the Doctor list, hit on a Doctor in Detroit, e-mailed her, and by golly, she e-mailed me back within hours and said that she most surely could help me and to call for an appt., which I did, and 4 days later the process began.
This felt life a whirlwind we were in. I help a lot around here, at least I try to, and there are ten of us and 11 when my eldest grand daughter is here for weekend. Her daddy, my eldest son, was the pedestrian victim of a hit and run accident last Oct. and is now handicapped and doing rigorous therapies of all kinds. His recovery has been amazing physically but he has a TBI and his doctors have told us that he lost a lot of years mentally with that injury. His recovery, along with the care of the g-babes and some household(if I'm up to it) had me answering the phone "Hello, you've reached the Zoo on the Mountain" We're a busy group on these 18 acres once the snow melts as well and this all came about as that was trying to happen here in the North. My kids are a very supportive group but when you say Mom AND Grandma have to go away for a few days....you can feel the OMG's. They managed and they managed the next couple of times....they're awesome!
First visit was a clinical diagnosis of my neuralgia and then another 4 hours of MRI's, MRA's, and some other tests on my eyes and then a reflex I think, a bunch of tests anyway. We were promised, after these that we would see Dr. Zamarono on Monday for the consult. Fortunately we have a dear friend that lives in the area so we camped out there and had a pretty good time.
Now mind you...I take a lot of medication for my pain...so much Norco that the pharmacy pleaded with my Daughter to have Mom please try not to take as much as is prescribed...the acetaminophen was gonna hurt me for sure. The Norco was the only med that gave me a few hours of pain free, not the "ice pick ramming through my ear into my brain" pain that is non-stop for me....non-stop! At that point I was taking 20 mg. about every 4-5 hours if I really toughed it out. I take 600 Tegretol, and 3200 mg. Neurotin, 60 Cymbalta, all these for my nerve pain and some for my advanced Fibro, plus stuff for my scoliosis. All of this during this time plus 9 pills a day for Lymphatic Colitis that I developed and my over use of NSAIDS ramped this into high gear so Depends were now a part of my daily routine...Ugh! I was worrying about if I did get okay-ed for the surgery how was I going to time everything so I wouldn't have pain hit me halfway through, or should I wear a Depends, yeah probably. These things sound silly but I would panic if it happened and I was inside that tube.
I had already talked and was denied by one group so I was well aware of the things that could happen as a result of GK surgery. Loss of hearing, paralysis of the face, no pain relief, additional pain. I had one doctor pull his eye down and the corner of his mouth to try to be as grotesque as he could to let me know what I could come out looking like. I was well aware....and more than willing to take all these risks to get ANY pain relief. I've been suffering for over 2 years with this!
So Monday comes and I get to meet the re known Dr. Zamarono. She went through the same things, clinical diagnosis , side effects,looking at all my films and test results, etc. My daughter took notes and was helpful with understanding this doctor, she is from Chile. Anyway, she agreed to do the surgery. She had done it only one other time for Geniculate Neuralgia and it wasn't a post-herpetic neuralgia (caused from shingles) but she was willing if I was and oh, we have to get the Radiology Oncologist that she works with on board. This is where I got turned down before so my guts about emptied right there. So we head home to wait a week to see Dr. Fontanese and if he says yes then the surgery will be scheduled right then and another fun filled camp out at my friends house. Hypothetically anyway. As luck would have it it went just that way, Dr. F was a stitch, showed me just what they saw in the films and that they could indeed image the G-Nerve so he didn't see a problem. He also showed me something I would have never known without their testing, an absence of critical arterial networking in my brain that I was probably born with. He very kindly told me I ought to consider cutting down on my smoking and after he left his asst. came in with a folder of info on quitting. So surgery was a go, we got to the car and I fell apart with my daughter....it was going to actually happen...thank you Lord!
The whole process was done so compassionately and professionally, we were so impressed by everything. I got there at 5 am and by 5:30 was getting my halo drilled in and the configuring MRI was done. I was goofy juiced up for this and at no time was uncomfortable. I was also administered steroids to help with brain inflammation and then back to my waiting room to try to eat oatmeal and a half a bagel through my halo...I did it though but you should have seen the look on my daughters face trying not to laugh at Mom finagling around the bar in front of my mouth. During this time also, the lady next to me went through the same processes I did and got a visit from Dr. telling her she had to go home...she had had cyber knife surgery and didn't tell Doc about it but Doc saw in on the films and told her she couldn't do it at this point. My daughter and I looked at each other and could read each others thoughts.... Luckily though, a half an hour later Dr. F peeked in and gave me the thumbs up and then Dr. Z came in and asked me if I was ready to go? Well Yeah! Off we went to the great Gamma Knife Machine...more steroids we ordered and they told me to just try to go to sleep. They locked the helmet on, sent me into the tube where I get locked in to and I did just that, fell asleep. I woke up out of the halo and back with my daughter in my room. Dr. Z came in and told me they gave me 9 minutes of radiation to the area and she will see me in 2 weeks. I was a happy camper at that point...some numbness at the top of my head and at the pin sites of course but I was good. I had taken my meds so at that point still was pain free. But when the assistant came in to get me ready to go and go over everything with me she noted that my 9 minutes of radiation was only the 2nd shortest amount she had seen Doctor do. My heart and mind went uh-oh! I said nothing to my daughter. I did share my fear with hubby that she may have gone light on me because of me being a 1st timer type of patient for Dr. Z.
Back to my friends to sleep or try, got a pretty critical migraine in the evening that required a shot of Imitrex but I imagine this was from the pins. Other than that, oh, I forgot to tell you that I was first through the door coming back from the hospital and my girlfriend has a step up into her living room that I totally tripped up and spilled face flat into her living room. I thought my daughter was going to stroke out right there...I wasn't hurt, but really....how am I? Grace is my Grand daughters name, not mine! LOL! I didn't really sleep but rested the rest of the day, ate normally, back to bed after my daughter did some wound care on me and the next morning we headed back home. It was during the night though, after needing my pain meds once the procedure meds wore off, I knew that we didn't have immediate success anyway. I was told 4-6 weeks it might take before the radiation kicked in. I still remained hopeful but you know, I kinda prayed for a miracle....hubby did too and cried to know that I was still hurting. So on I went for 2 weeks. By the time I went for post-op I was getting less and less relief from the Norco 2 1/2 - 3 hours at best. We were going to have to talk to Dr. about that because of the danger zone I was treading on. At post op she took the Norco away from me and started me on oxycontin 10mg ER twice a day. She did more MRI's and MRA's and could see the place that they treated. Told me to hang in there it was still early. She did tell me what I had feared, that she gave me 25% of the dose that she would normally give her Trigeminal patients. She did this because I'm the first of my kind and she didn't want to send me home drooling and deaf. The next thing she told me was that there had to be 6 months between surgeries...that puts me waiting till October...ugh...the tears couldn't be held back at that point because I knew I wasn't fixed or even close and now I'm taking OXY till then....I was really sad about all of this but still trying to remain hopeful. Off to the store to buy dinner and flowers for my friend that has been so wonderful for letting us stay there for these appointments....what do I do when I walked into her house carrying a flat of flowers to plant in her sadly empty pots...yep, trip on that dang step again...this time in sandals and peeled my big toe back so far it broke my foot...snap...but I didn't fall, saved the flowers...a bit more graceful this time. I waited to show anyone till the morning...we were headed home and my daughter alerted my GP that we needed an x-ray. Yep, broken but not dis-lodged so no surgery, pins etc, just a aircast for 4-6 weeks.
Since then I have had to have my medication upped and now am doing pretty good with only a few breakthroughs that I can get through. I'm taking 20mg oxy twice a day now and don't see the doctor till July. Pain is still there...waitin on October.
Stress has been paramount during this time, keeping me in a perpetual Fibro Flare. My Mother had to have one leg amputated after a long battle to save it. Because of her health and care needs my older siblings have put the family property up for sale....this a heartbreaking turn of events that has driven a huge wedge in the family. Additionally, my dear grand daughter is moving to Georgia with her Mom and step Dad in about 5 days and I'm not dealing with that whole thing well at all. My Son feels worthless and unable to fight that whole battle and sadly agreed to the change of domicile but it seems to be mounting to breakdown territory which is where I'm at....... so the reason I was prompted to come here and put it all down. A friend of mine told me when I declared that my life sucks, that there are a great many awful things out there that really suck....I should get a grip and write a song or a poem about it or whatever. Well, I didn't wan't a lecture...that's when I decided to go where I know there will be no lectures...Bens places. I love ya'll for that. I think I'll be done now. Thank you again for letting me go on and on. I hope you are sweet to yourselves today and may your day be sweet to you as well. PeacenLove Always~Laurel