David's Syrinx Experience  

Call me Sir Ringo My Ale Ya (syringomyelia)


 

HISTORY

While not knowing the actual cause of my syrinx, I can share many reasons. We can start a age six 1967 with my first car accident resulting in whiplash. I had to wear a neck brace for several weeks.  Around age 8 I cut a flip off the monkey bars and landed on my head (my three sisters say that explains a lot). Second MVA I was around 10 or 12 years old I don't remember (One of those sisters driving). Between my MVA's there were several bicycle and snowmobile accident and this was before people dressed like football players to ride.

Then it starts to get really bad!

Christmas night 1979 I was riding behind the seats while my two friends sat in the seats we flip a Fiat Spider, that's a two seater convertible, and it landed on top of me. I spent eleven days in intensive care with a cracked liver and more. Two months later I started my martial arts career. Then I really got stupid and I bought a motorcycle in 1981. I did good for the first six months. Then I wrecked it nine times within the next year. Once I even passed a semi (tractor trailer) on my butt at 75 mph in the freezing rain. I started competing in martial arts tournaments in that same year. In 1985 I landed on my neck on a hard tile floor during a competition. The next day I had trouble controlling my left arm. The hospital (to remain unknown) told me, I had a pulled muscle and sent me home. I went to my regular doctor on the following Monday and  he diagnosed me with a pinched nerve (good pain meds). Then MVA after MVA, rear ended, pulled out in front of, rear ended again, ect... OMG I've used up my nine lives and several others.

 

David Sisson at age 26 

DIAGNOSES

February 2004 I coughed so hard that both pinky fingers went numb. I called my primary care physician and he set up an X-ray. He told me there was some bone spurs in my neck and that's what caused the numbness. Yeah, yeah that's what they told me when I went to the orthopedic surgeon in late 1985. You really can't tell much from an X-ray, I now realize. In November I called him up and said the numbness in my left pinky is gone but I now have three fingers on my right hand that are numb. He sent me for my first MRI, I fell asleep, twice. He called me up two days later and had scheduled me for another one (?). He said you shouldn't be walking much less running. I run several days a week, only a few miles or so. 

So, what'd they find? Three bulging disc pressing on my spinal cord, enough to need surgery, and a syrinx. 

 

 

 

 

 

 

 

 

  

A syrinx! What the hell is that? It's basically backed up spinal fluid in your spinal cord. So I go to the neurosurgeon in February of 2005 and he says we need to remove these three disc's (between C3-C6). What about the cyst (as it was referred to at the time)? Reply: "It's probably been there twenty years and we'll only deal with it if we have to". May 25th 2005 he removes the disc's. I can't do any exercise but walk for six months. I gained over 20 pounds during that period. Oh, after that I went nuts with my own rehab. I went from 207 pounds to 160 in four months. I worked out as hard as I could and then built a Koi pond in my back yard with a pick and shovel. I mixed 80 pound bags of concrete in a wheelbarrow after carrying them to the back yard on my shoulder.

Well I was fixed and people that new me called me a machine, not quite. I had a follow up visits with the PA from the neurosurgeons office. Call us if you need us. OK! I was doing pretty good. I had an X-ray (remember my previous comment about X-rays) of my fusion and they said all was looking good. I flew through 2006 without a problem. 2007 I notice my right hand is getting worse. Ignore it I say, just a bad day. I started having pains in my chest and my right leg started feeling numb. I'm no wuss I said and sucked it up until my annual physical in July. I mention to my PCP (primary care physician) about my symptoms. I also mentioned that I had not had a follow up MRI. Well sense that comment I've been MRI'd from my brain to my butt. I've been to a neurologist and back to the Surgeon who is now ready to deal with the syrinx. The one that we would deal with if we have to. But am I ready to deal with it? Well, there's no choice, do it or get worse.

WHAT'S NEXT? 

The neurosurgeon wants to go in and implant a stent in my spinal cord. I now know this is referred to as a K-Tube in the medical field. This will drain the spinal fluid out to where it's suppose to go (supposedly). Some people say they don't work. If you have stumbled upon this web page looking for answers. You need to go to asap.org where a lot of us who live with this meet. Good people with support and answers. This is the beginning of the next stage of my journey. I will ad more as my journey unfolds. Surgery April 9th 2008 (possibly).

My Tribute To The Opponent

(Above picture created using POSER 5)

Syringomyelia, my own private hell where the weight of an invisible world weighs heavy upon my shoulders. The fire burns yet no one can see its flames. The burden slowly crushes me beneath its weight and again no one can see through the clouds of this mystical world. The violent storms shatter my nervous system with constant bolts of lightening. Others can only see a glimpse of this world  through my anguished expressions. Though I have always, as well as others, believed myself to be a man of steel. Like Superman I have met my cryptonite and continuously fight to escape my weakness. Modern medicine is limited as to its capabilities to enter this world. I will not give in to what has not yet beaten me. I am a fighter and a survivor sharing this world with others who I hope will join me in this fight.

David Sisson

 UPDATE

     It's time for an update so here it is. I had a K-Tube inserted into my spinal cord a approximately 6:00 pm on Wednesday April 9th 2008 as planned and for the first few days most of my syrinx symptoms were gone. They basically threw me out of the hospital at 10:00 am Thursday morning. I was back in the hospital by 5:00 pm Thursday evening via ambulance, not a fun ride. They sent me back home that night after a CT scan and said I was ok. I had my doubts after passing out and falling on my head. Now four days later all of my previous symptoms are back along with a lot of neck pain from the surgery.


I am slowly weening myself off of the hydracodone and flexaril. They don't help that much anyway. I am starting to sleep better at night and taking less naps during the day. Finally my bowels starting to function again, still not quite normal. 

May 8th 2008, I go back for my follow-up tomorrow. I will see the PA, not the surgeon, even though he does think he's the surgeon. I might as well be seeing the receptionist. This at least cuts my questions short. The surgeon told me before the operation that I could go back to my normal activities in two months. I figure June 9th I will start trying a few things and will take it from there. I will keep you all posted on my progress.