Hi Folks: Wanted to share an update here as it has now been almost 24hour as well as my thinking/thought process to commit to doing it.
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The anxiety (previously mentioned) subsided after I did the walk through the day before and grilled each of the various Drs (there are many and each have their own role and responsibilities for this to work). Further, Ive worked in Electronics/Technology my entire life so I wanted to understand alot about that specific machine. Was so relaxed was even able to do a 'last supper" out at my fav burger dive.
So checking in for the Gamma knife was much easier than the previous Glycerol Injection, which was done in the main hospital in the Operating Rooom as this is done in the Neurology Center (seperate building). They were very patient with my many questions. Getting the frame attached (the use 4 screw onto the skull - 2 in the front and 2 in the back) was much simpler than I expected (it kinda looked like my head was stuck inside a TV). They had used local anesthesia (I am not a fan of the general anesthesia - the wrong dosage or that person has a bad day and you are done for this round) to get the frame on.
Next up was to do new MRIs --> they do microslices of the targeted area to create a 3D model on the screen. I was surprised how fast this took given all the previous MRIs and Brain scans took over 45 mins. Also afterwards Dr Jacobson let me see the screen and flip the nerve over/around. I could see exactly where we attacked it last time (with the Glycerol Injection) and where we hit it this time with the Gamma knife
Then they wheel you back to the room where they put a bubble (plastic) on your frame to do specific measurements - they need to ensure they do not hit any of the frame, etc when they attach the helmet to the frame. Also during this 45 min period, the Neurosurgeon and his team are reviewing the 3D model of the nerve and surrounding area to pinpont exactly where they want the gamma beams to target. Also during this period the expert (in this case was Director of Physicists), is running diagnostics and ensuring that machine is ready for us (there is a long checklist - think pilot checking his list before he gives the green light for the push back). Also, there is a Dr who determines the exact strength of the radiation - this is somewhat standardized, but still they have the final call. Regardless, all these are happening separately and there is a a clear owner who has the authority to make the final call, but each as done as a team. My belief is more minds are better than a single expert.
Then they rolled me into the room, placed me onto the table (slides in/out) and slid me in to attach the special helmet. They allowed me to bring in my own music, so we turned that up and in I went. Unfortunately, they slid me out and back in and out, the expert found a concern with the machine - this sent my anxiety of the charts as they took me out of the room. They nurses did not want to move me by the Dr in charge of the machine made it clear that no one was going to use this machine until it was perfect and ready for a precise procedure. It was about 10 min and they calmed me down and brought me back in. I made them change the CDs (I brought a bunch) to something more soothing than rocking. Then they slid me in. I had concerns about the holes in the helmet (where the gamma rays go through) were within 2 inches of my eyes, after they explained I understand that they travel in straight lines and had no risk of taking a turn towards my eyes I was OK with it.
Then it begun, it felt warm in the machine, but it was very, very boring as being human we cannot see gamma rays so I went to sleep so much the Drs complained afterwards that they couldn't hear the music over my snoring. Ha ha ha
The slid me out, took off the helmet, rolled me back to my room. After a few min they took off the helmet and applied a dressing to small holes that were created by the screws. They monitored me for an hour, let me eat, I felt naseau and dizzy - the local anesthesia wore off and the spots where the srews were killed with pain. They gave me tylenol and within 10 min they stopped stinging/aching. Also I took my normal medicine (neurotin and tramadol), then they discharged me after the full hour.
I was completely fatigued and exhausted. The naseau and dizziness lasted until I took a long nap in the evening. It was great to be with the wife and kids. Had dinner and felt strong - put laundry away, moved holiday boxes, helped with baths, then went to bed early 9PM (note I did take my anxienty/sleeping pill to get to sleep quickly). Slept solidly (for once!!!) until time to get the wife/kids up/out to work/school. Unfortunatley, I was dizzy and a bit nasues when I stood up or tried to walk...note this is normal and expected within the first 48 hour.
just awaking from a nap and a nice bowl of homemade soup, I feel strong again, walk, stand - Id like to drive to run some errands but will call and have my father come take me out for awhile.
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Just a little about my thinking and planning. My TN was so bad in the beginning, every day I could not understand how that I could not be dying and really wanted to dig out the nerve and kill it myself.
Over 2 months or so I researched and reviewed all the options, when I met the neurosurgeon I immediately decided (note all decisions were made with input/discussions with loved ones) to schedule the Glycerol Injection. I had a 50-75% chance to provide some level of relief within 48 hours with any major invasive surgery (outpatient ie no ICU required). Had that done on Oct 19th and I received aprx 30-40% pain reduction which was HUGE for me and was able to cut my med doses nearly in half and was able to return fully to work and crush my 2011 objectives.
Unfortunately, a side effect was that muscles in my temple area were torn (think that surgeon cranked open my mouth much further than I had ever opened it) - I was referred to Physical Therapy, which I thought was a bunch of BS, but after 2 weeks of doing my tongue exercises they temple pain subsided. It did help me learn a great deal about how I physically responded to stressful events (including a massive painful TN episode)
I am 42 years old, have a 4 yr old daughter and a 7 yr old son and helped start a business that we sold to a Fortune 50 Company in 2010. I am a key executive for this business and helped grow it by 150% in the first year inside the new much larger company. My objectives to deal with TN were to identify the paths that led to some amount of pain relief with the shortest/least invasive recovery. My plan is that the Gylerol Injection + now the Gamma knife along with sporadic acupuncture + massage therapy (not limited to myofacial) along with the fact I am building a *real* happy place - not some made up place in my mind, but a room in the house with all my fav things and a place were I can go during a major pain episode or when I just need a few minutes to myself. That last one alone has helped a GREAT deal.
I am fully away of the limitations of my initial procedures and do realize through out this journey of life that most likely I will require additional TN procedures in order to cope with this pain. Should the timing be right and I can carve out enough to time to recover from a major surgical procedure I would do it, but til then I am going to try everything under the sun to help cope and keep my wife/kids/business on track in the coming years.
Ill keep you updated on my progress and recovery. I really appreciate and encourage the dialogue on this topic.
Cheers,
Albee