My TN protocol MRI/MRA report stated 'possible blood vessel" impacting the nerve. So, while there was the possibility of a compression, I waited for 3 years to go ahead with surgery. Finally, after 3 years and all the medications failing, I decided to go ahead with MVD surgery.
Jan 9, 2009. Figures the day I have my surgery date, it would be one of the worst winter days in Portland, Oregon in 15 years. The Veteran's Hospital and Oregon Health and Science University are on the top of a hill. Thankfully my friend had four wheel drive. Still, we went up the hill, slipping and sliding on black ice. Looking back, I am thinking maybe I should have taken that as a sign for what was to come.
The anesthesiologist resident came in, talked to me, got into a argument with the nurse as who was going to start my IV and then walked out. Then in came the fifth year neurosurgical resident, who went over the consent forms and then walked out. The next thing I know I am being rolled off to the Or. I remember, once in the Or, and seeing all the neurosurgery tools panicking, and asking the attending anesthesiologist if all those tools were going to be used on my head. His response was he did not know, but to please suck up his O2. The next thing I remember was waking up 7 1/2 hours later. Yes, what was to be a 3 hour surgery turned into 7 1/2 hours.
The problems started right away. Though I was just four months shy of my 46 birthday, I have a wind pipe and vocal cords the size of a child's. As this was my first ever major surgery, this was not known. The attending anesthesiologist called in his boss to assist, as I was now under and needed to be intubated quickly. I ended up not being able to swallow for five days due to how badly my throat was torn up due to the hurry to get the breathing tube down my throat, once a kid size intubation kit was found
Now the neurosurgeon took over and here is where it got really interesting. Dr Eller drilled to the right spot, goes to start the decompression and was shocked to just find more bone. What was compressing my nerve was the base of my skull. Dr Eller later told me, in 13 years of operating on brain surgery patients of all types he had never seen a skull as thick as mine. Instead of cushioning the compression off, he drilled it off. This though lead to a very scary complication and one that landed me 16 days in the hospital.
Most of the time when a CSF leak happens, it will leak at the incision. My CSF leak though drained out my left nostril. The danger is this, is, if fluid is getting out, air was getting in and that put me at a very high risk for brain infections, including, but not limited to bacterial meningitis. The need for the extreme amount of bone drilling forced the CSF into my inner ear and then out my nose. I was kept in the hospital for 10 days on total bed rest, with the head of the bed, at a 30 degree angle. While the leak slowed down, it did not stop all together. Dr Eller, seeing that I was becoming badly depressed, sent me home, with the strict orders, if I started running any fevers to call 911, and if the leak was still going a week later, I would be readmitted and placed on a lumbar drain.
One week later I was readmitted and placed on the lumbar drain. A lumbar drain is placed in the lower back and left for five days. It is hooked up to a little bag and slowly drains off CSF, with the goal of lowering pressure long enough so scar tissue can form and the CSF leak be stopped. If it did not work the next step would have been surgery to place a shunt. I ended up flat on my back for 5 days not even being able to lift my head off the pillow for 23 1/2 hours a day. I was also placed on a antibiotic so strong it could only be put through a IV, as to take orally would have damaged my stomach. Thing is it was constantly causing my veins to collapse and the medication to infiltrate my skin burning badly when it did. After having the IV replaced 3 time, in one day due to vein collapse, I told the nurse, " No, more. If I have to stay on this, then Dr Eller will have to come up with another way to administer it." I was then put on a PICC line for 3 days.
I was not happy, but I also knew the team taking care of me was not happy either. We were all watching what should have been a routine surgery going horribly wrong. The one time I did cuss at a doctor was when the neurosurgery resident put the lumbar drain in my back. He hit a nerve and I got a fast shooting pain from my hip to the tips of my toes. I felt bad for calling him a sadistic s.o.b. and told him so. I did chuckle when he told me not to worry about it, that he had been called much worse. (remind me to tell you another funny story about this.)
A bowel impaction due to all the opiates I was put on cost me two extra days in the hospital and on the receiving end of a number of humiliating things in the attempt to get them moving again. Here I had a problematic brain surgery, but could do ok. Trying to get my bowels to move, left me badly depressed. Personally, I think I was at the point of feeling totally helpless and that feeling really hit me hard.
Here is the thing. Even with all that happened I do not regret having the MVD done. The pain I was getting to the nerve third branch was agonizing. I could not even have a sheet touch my chin, with out waking up due to pain. The MVD took care of it. Thing is with time the pain shifted to both the 2nd and 1st branches.
15 months ago, I had a RfR procedure done. That is the one surgery I would say I came close to regretting. While, it did treat the pain to the 2nd branch of the nerve, having to be awake for just a 2nd caught me off guard pain wise. I just wish I would have been better prepared for it mentally.
As I type this blog entry I am 13 days out from a repeat MVD, where nothing was found compressing the nerve. Honestly, as it was bone compressing the nerve, it was totally expected nothing would be found. I also had a first Internal Neurolyis. There was someone here telling me I would regret the internal neurolyis, based on what was their horrible, life changing experience with a external neurolyis. Thing is the only thing I regret is not having it done sooner. The lessons learned from my first MVD were put into play. I had the surgery 13 days ago done at Oregon Health and Science University. The fifth year neurosurgery resident, is now my attending neurosurgeon. Knowing the CSF leaks out the nose, will only get worse with further surgery, he put in the lumbar drain while I was still asleep in the Or. Yes, I ended up stranded in bed again for five days, but the nurses knew how to position me, so I was not forced to stay flat on my back the whole time. Wi/fi and my laptop became my best friends those five days. The anesthesiologist called over to the children's hospital for a children's size intubation kit, and that was used. As I have IBS, they did not wait until the bowel impaction started before I was started on a bowel regimen. Nothing grosser than Mira Lax mixed with warm prune juice and often downing senna pills with warm prune juice as well. Thing is I just held my nose and slammed it down, as what could have happened if I did not drink it would have been much worse.
Here I am from thinking at one point of throwing myself off a bridge, to pain free. It has been wild ride. I often think of it like being on a roller coaster. A lot of ups and downs. Highs and lows.
OH, that bridge I though of throwing myself off of, it is called the Vista Bridge. As I do not own a car, I often go under the bridge, as the city train goes below it. I find myself thinking every time I go under it now, " TN you tried to kill me, but guess what sucker, YOU LOSE!"
Life is good,