|
Hey...
Speaking of Craig hospital ... after 4-5 yrs of not having a clue what was wrong with me by abdominal cramps/pain ... I had every ab test done (gi series, ultrasounds, ct scans, x-rays) which were all negative. Then the extensor spasms. It wasn't until one day where I musta moved wrong ... and the cyst musta expanded causing my right pupil to dilate and stat that way - fixed for a week.
I then said THAT'S IT! Being over in new york state in small town ... I called Craig telling them my symptoms. Some neuro (maybe Falci.. can't recall) said "get an MRI" to see if you have syringomyelia.
I had NO IDEA what SM was. I did 6 months of research on it. Mostly through the American Syingomyelia Alliance Project... they give out huge info on it and people from all over who have it. But the majority of people, I found, have the other kind (chairi formation - from birth but usually undiagnosed until symptoms appear later in life).
WE have post-traumatic SM - after an injury. Some neuros feel it may have been there at the time of injury but didn't show up via symptoms yrs later. Guess it doesn't matter. I've found more & more quads who have it though. Before I knew I had it ... I was reading a PN magazine in abt 1993. I remember seeing a big article on some condition (it was SM but I skimmed it - unaware) but the first sentence said that post-traumatic SM happens in only 5% of the SCI population. So I thought - can't be me! And never read the whole article or even a first paragraph.
I got 3 opinions after my diagnosis. (Oh... being so far from Craig and unable to fly or travel easily ... they were out). One was to have the shunt put into the abdominal cavity (local neuro). Another said he'd go with putting it the lung cavity (NYU). And the last ... was the butcher in Brooklyn who had his own "baby" (his arrogant words) whereby they drain it into a river of other CSF ... being more natural and logical since it's draining CSF from the cord ... same stuff.
Besides that ... this dude has a national reputation and renowned for doing a lot with SM... research to designing his own surgery. He spent more time with me, his shunt to the base of the brain to more CSF ... made me put my trust in him. HUGE mistake!
The surgery went ok & I went back home (5 long hrs) after a week feeling ok. In a month ... one day I was a bit upset and my vision blurred and my hearing dropped - only for a few seconds but I knew something was mighty wrong. After that my bp kept going up & up. I was scared. I went to my local ER but no one would touch me since I had surgery by another neuro within a month after surgery.
I finally called down to Brooklyn. My neuro didn't think it could POSSIBLY be the shunt (arrogant ass) but to come on down like it was right down the road. I was so sick w/ my bp unstable. When my ex & I got there they did an immediate MRI - sure enough ... a blood clot had plugged the shunt. He thought that since we went that far for my relief .. he'd just revise the shunt to a syringo-pleural one (lung lining). I agreed.
After a night of hell he operated the next morning ... taking out the plugged shunt and put in another to drain into my lung cavity. (Same one I have today). But I did not bounce back like I did the 1st surgery a month prior. My autonomic nervous system kept going haywire ... from a fast fast toooooo fast heart beat causing monitors to go off to CSF leaking out the back of my head to high bp again with pounding headaches from the AD.
For 2 weeks the ass kept sending in his residents to put in suchers every time (nearly daily) a leak was present. After doing that, my bp would rise astronomically. Long story - short -- when taking out the plugged shunt he didn't sew up the burr hole it left.
I can now look back objectively and see he was hoping I'd die. Why? He did research on cadavers who've had SM! I saw one article in a newsletter at some point where he was studying 200 cadavers. DING DING! If SM is rare ... where'd he get all these cadavers? Dead drunks in Brooklyn alley ways? Highly unlikely.
I was his 1st failure (which he denied in his own mind no doubt) and I'm sure and I was almost a victim! After getting meningitus FROM CSF LEAKING FOR 2 WEEKS and going comatose ... my ex finally said GET THE GODDAMN DR IN HERE FROM HIS JULY 4TH VACATION AND DO SOMETHING!
I went into surgery again to close the hole. SUPPOSEDLY bur holes close themselves but mine didn't. Those 2 weeks I was on death's door but WE were clueless as to WHY I had a leak so we were at their mercy. I felt better except for a rapid heartbeat for 3 days but no one was doing anything but giving me heart pills so I got up & checked myself out & never looked back.
I tried to sue but when lawyers heard WHO the Dr was (he's seen as a King down there) ... they shied away. "Not feasible."
Again, looking back... I remember Craig's neuro saying they'd never go above the injury. Which my surgeon's "baby" did - it drained UPHILL to the base of the brain. And I called Craig once abt something after coming home ... telling them of my experience. B4 I even told them his error they asked "Did he close the burr hole?" THEY KNEW!
To add more insult... I found out too late that he knew nearly nothing of SCIs! He mostly did research on SM and surgeries on those with chairi form of SM (successful) but he was mostly a brain surgeon.
When my pain began (spinal) and stiffness set in around 1998 (3 yrs after surgery) to an unbearable point ... I called Craig numerous times. They suggest untethering my cord but, as always, only a 50% chance of relief.
My rehab Dr had me try Neurontin. Oh my God! W/ that drug ... one has to get up to abt 3500mgs before REAL relief. By 2800mgs for me ... I found no difference and DID NOT want to be on a med that always needs to be increased. So I weaned off of it AFTER ONLY A SHORT TIME ON IT. It was THE hardest thing to do! I easily got down to a measely 300mgs but it took me A YEAR to get off THAT! IT WAS HORRID. Spasms like never before. I'll never go on that med again!
Backing up in time again -- Strangely, the neurosurgeon who operated on me wanted me to try amitriptyline before having surgery as a route to TRY instead of surgery. What it DID (and still does now) is help me sleep VERY well. The script was at bed time (50 mgs). In fact ... it worked too well because I began unconciously pushing my knuckles into my bed while I slept. My one knuckle began getting getting very pink. Having had pressure sore experience we began trying to wrap my knuckles to protect them. But my forefinger got out of control REAL FAST and beyond the point of no return. It had to be amputated from the 1st knuckle. Fortunately it's on my useless hand and I can't use my fingers anyway. It's unnoticable but shouldn't have happened.
Even though I chose surgery I stayed on the amitriptyline. At one point (1997) I went to 25mgs and was sleeping just as good but can't recall now why I went back to 50. Still at bedtime.
Since my hard sleep, I've worn a brace overnight to protect my knuckles. And abt a yr ago ... I thought I'd try going back to 25mgs. But I was in more pain and couldn't so it's doing SOMETHING. I just hate taking meds if unneeded. Also... many people (MANY) gain a significant amount of weight as a side effect. I didn't at first but after turning 34 I began to spread out in the hips more and was bloated for a period of nearly 2 yrs. I think it was sodium in my diet.
The best relief from pain, stiffness and overall feeling shitty that began 2 yrs AFTER that surgery ... was moving to the southwest! Never thought I'd get out of the freezing, drab weather opf the northeast but I re-married and my husband's job was relocated. I'm so relaxed here with the warmth yr-round. I look and feel like a different person! In the north I was constantly tense 8-9 months of the year. More clothing doesn't help me.
One last thing ... Abt 2 yrs ago I thought (being a bit closer to Craig in CO) I'd get an overall checkup at Craig. 3-day in-patient. And consider cord untethering. Now I can't recall why ... but I didn't fit their criteria or insurance or both. Can't recall. And now I have not the desire.
With a 50/50 chance of total help .... my cord has been traumatized enough. The Oxycontin, amitriptyline and AZ weather makes it bearable. My pain is worsened by typing to much or moving wrong. If I cry ... I'm in pain over a week. It must aggravate my CSF pressure.
Bottom line ... SCI doubled with SM SUX!
Beware of neurontin. Try amitryptiline.
Lori
| 
