This is about how my head feels right now. Too many things going on in too many new places that I never dreamed of.
Now I love all 3 of the characters listed in the title above, but Van Damme is by far my favorite! I would like to meet him and get an autograph one day, even have him autograph my head since it feels like he is responsible.
No, I was not actually attacked by any of them, or anyone, unless you consider my surgeon's use of drills and scalpels a threat. But man it feels like it. I have more war wounds over my body than I can shake a stick at. But at least I hope I can move on.
For those of you that have followed my blog so far, it has mainly been about the Dementia and Advocacy side of what I've been dealing with. For this blog I'm going "over to the other side" and talk more about the NPH and what I just went through in the last 11 months. I will be back to the dementia portion next time, hopefully with some really BIG news, possibly on 2 fronts. We'll see.
I'm going to back up and give you a bit of history for those who don't want to read all of the other blogs.
My son was born at 25 1/2 weeks because my first wife's appendix ruptured and they thought it was a stomach bug. The poison got into her system and within 12 hours our son was born. 2 lbs 5 oz, 18" long. No other baby had been born that early and lived, so we only had UP to go from here. 8 days old he was sent to another hospital for a heart surgery. My wife was in ICU with no reality of making it. My mom and her mom went down with our son to keep us updated. At one point during his stay, and after the surgery, he was removed from life support. NO ONE gave permission for this to happen. My mom realized what was happening and they hooked him back up immediately when she threatened. BUT. The damage was already done.
Because of the swelling it was decided at 5 weeks that he would be moved to another hospital and a possible shunt surgery. In 1984 these were still VERY new, so we didn't have much to go on. Remember, there was no internet at the time so we couldn't do a lot of researching either. So the surgery was done, he returned back to our hospital and after 3 1/2 months in a hospital from birth, he was released into our care.
Fast Forward to April 1981
I'm stationed in what was West Germany at the time in a Field Artillery Unit as a mechanic. We were on a training mission in the southern region of Bavaria and I was riding in a 2 1/2 Ton Truck that we converted with wood to a mobile garage of sorts. The driver lost control and the truck went into the ditch, flipped, and my spine and headed landed against one of the boards that braced the plywood exterior.
Couldn't move and was unconscious at first, then transported by field ambulance to the nearest hospital. Mental capacities returned quickly, but mobility was limited, so I was given an Honorable Discharge under Medical Conditions after serving almost 3 years.
My health wavered and at one time I was in a wheelchair. But mentally I seemed to be ok, or so I thought.
Fast forward to 2018. Specifically the month of May.
The pressure in my head is excruciating. I'm sitting in the office of a Neurologist for the first time in decades. Questions that I can't seem to find the answers for are being tossed at me, one after another. Tests are being scheduled, including an MRI at a local facility there in town. I feel lucky through all of this though. A dear sweet friend of ours is an RN at this office and was able to get us in to see the neuro the next day after the attack on my brain. We believe I had a seizure, though there is no record of one previously. The MRI of the head was conducted and a second one of the entire body was also scheduled just to rule out any other possible problems, especially with the spinal cord injury. Enlarged ventricles were noted on the MRI, the pressure had not subsided in my head, so a Lumbar Puncture (Spinal Tap) was scheduled to see if it would help. Also, some of the fluid would be tested that was removed for other diseases.
Then came June 25th. I am sitting in one of the patient room's at the neuro's office with my wife awaiting all of the results. The Lumbar Puncture did help a lot so we knew that we were on to something.
Then she was in front of me talking some gibberish and some half speak that I only partially understood. MRI, Dementia, Hydrocephalus, Pressures, Parkinson, and other words that seemed to float around the room without anywhere to land.
When it all was gathered, Normal Pressure Hydrocephalus and Early Onset Dementia were the diagnoses given. NPH (Normal Pressure Hydrocephalus) can have symptoms similar to Parkinson's but yet the patient will not have and may never contract the disease. I had a constant expanding and contracting in my hand and feet muscles, mainly on my right side. When the tap was performed for the Lumbar Puncture, the pressure was 13 and 32cc's of fluid were removed, confirming the NPH.
The dementia diagnosis really deflated me. It's bad enough to have to fight one of the diseases, let along both at one time. I was able to pass most of the memory tests, with short term loss being my biggest deficit.
Options were discussed including shunt placement and more lumbar punctures. The neurologist felt that shunts were too risky and was hoping that infrequent lumbar punctures would alleviate the problem.
Problem was that the lumbar punctures became more frequent. I would undergo a total of 5 in less than a year, with the last one only helping for less than a total of 5 weeks.
So now I am at another Neurologists office. I've already seen a Neurosurgeon after being referred during an ER visit where the pain had become too much once again, and having another MRI done to compare any changes. Both of these doctors seem to think that a shunt is the answer and do not understand why I have waited so long. Sometimes when you're scared and trying to figure out what is best, you do what you think is best, whether it really was or not. I was still working at the time and a Friday Lumbar Puncture meant losing only 1 day of work and returning to my regular schedule by Monday. Minimizing lost (reduced) wages was a HUGE priority at the time. We had just opened our shop less than a year earlier and were not in the black yet, so my paycheck not only covered our household bills, it helped keep the shop afloat in the early days.
Anyway, both docs conferred and a decision to operate was made. The Neurosurgeon preferred to work with another General Surgeon that he had tag teamed many times previously when doing shunt placements. I would have to wait 3 weeks for the surgery, but at the time it seemed doable. Then 11 days out, I lost the ability to speak once again. This had become the common theme for me right before each time the lumbar puncture was performed. Calls were furiously flying back and forth between us, between surgeon offices and medical facilities. 2 days later I was to report to the hospital for pre-op testing and paperwork. The following day would be my surgery date. The Neuro preferred to use a non-programmable shunt. That is what my son has (he is on his 3rd one now after 34 years).
So that is what he went with. A medium pressure valve is what he went with and I survived. Well, I think so. By the next day after the surgery I was ready to strangle someone. I wanted to reach down someone's throat, sucker punch them in the side of the head and remove their gonads through the swollen, narrow channel that I had just created in their ear canal.
Instead I asked for pain meds. Morphine was a joke and I don't do the Norco's of the world.
Fioricet seemed to be the answer. I had taken it previously for the headaches and so I was switched to that for a few days, finally able to wean off to extra strength Excedrin.
2 days in the hospital and I made my escape back to my house. That was on Saturday and by Tuesday I felt like I could start to move around and try to find some sort of normalcy. 2 days later and I'm sitting here in my recliner writing this blog, and only having taken one dose so far of the Excedrin, so I figure I'm doing ok.
My biggest thought now is to see where this leaves me with the dementia. I'm hoping that it will be better. I'm sure when I go to the neurosurgeon to get my stitches/staples out that they will test me again as they do at each visit.
I don't like what I've had to go through one bit. This has sucked THE BIG ONE all the way, from the pain to the stupid crap that I do from the dementia. But if just 1 person is helped through me writing about my experiences then at least a greater cause was served. Not to mention that no matter what, I was still able to serve my country for several years before the injury stopped me in my tracks. I would be there with my brothers if at all possible, but my prayers and thoughts can definitely continue to move along with them as they go about their duties protecting our nation.
I see a lot of people talking bad about our country, our President and his family and their neighbors in general.
As a Veteran, it makes me sad. While I do not agree and will not agree with every action that is taken on behalf of our nation, I still believe that this is the best possible option available to us. If you're foolish enough to think otherwise, just go live in another country for a few years and see if their benefits outweigh ours.
There are things that I hope will change, but I also know we have to let go of the past at the same time. If you lost a war, admit defeat, evaluate all mistakes made, then move on. Armies are never successful if they quit at the first battlefield loss. Our nation will never be successful if we continue to live in the past that still haunts us today. And I will be more successful if I choose not to reflect on the pain that I have come through and the damage left to my body and instead choose to finding a new way to conquer the challenges, refuse to live a defeated and regretted life, and make sure that "The More You Know" becomes my mantra about any form of Dementia and Hydrocephalus from this day forward.
Sorry for the long spiel, but I wanted to put everything together in one piece. I hope if you haven't read the rest of the blogs, you will take the time to read the rest of my writings, leaving comments as you go to let me know your thoughts too.
And until next time: #AlzSux, #EndAlz, #HydroWarrior4Ever
