Monday, June 04, 2012

Staying Alive Staying Alive

Unlike Robin Gibb that is..

So ya.. having a spinal tap sucks.  At one point in the needle insertion, the doctor nicked a nerve which sent one of those electric shocks down into my scrotum and into my right testicle.

My testicles are very important to me.. and they are fabulous, just ask anybody who has seen them (which is quite a few people I think).

I haven't written a description of the last visit with the neurologists that lead up to this.  It was unusual, so I'll just describe it now.

I walk into his office with a stack of documentation on what's known as "second-half-of-the-day headache as a manifestation of spontaneous cerebral spinal fluid leak".  You can google that to see an abstract of the study if you want.  So, I explain to Doctor Turban (not his real name, and he doesn't actually wear a turban, at least not in the office) that in our last visit we would attempt to discontinue the nortriptyline and the diazepam.  That was a staged discontinuation.  A few days after the last diazepam, the tinnitus exploded back into my ears with ferocity.  It was so intense that if that were my normal state 24/7, I would have to be institutionalized and put on a thorazine drip.  It was bad.  I got back on the meds and to my current generally okay-but-ears-still-ringing state.

From there, he is basically at a loss for words.. disagrees that I have a CSF leak, and after I ask him how much time must pass before he determines he can't solve the problem and has to consider "long term" solutions.  He says he "doesn't like to think of it that way", and suggests I get a second opinion.  He also says that a radiologist wouldn't consider doing a blood patch (injecting blood into my spinal canal in order to plug any leaks) without there being a positional component to my headache.  In other words, because the headache does not go away when lying down, and comes on when standing up (the CSF leaves the brain in that situation), then the radiologist wouldn't do a blood patch.

Great.  I just handed him documentation that demonstrates that not all CSF leaks have a positional component to the headache, explain that to him, and he says the radiologist still wouldn't do the blood patch. If the leak is slow, the headache may not be positional and an MRI may be normal - both true in my case.  What I'm proposing to the neurologists is a rare condition, but it is a condition that is documented and studied.

Keep in mind, this is a neurologist that has not done a single diagnostic test on me in nearly 6 months of having this condition.

He sensed that I was clearly becoming annoyed and decided that we would try a 1 month course of prednisone, which is a steroid.  I had tried a 10 day course when I saw my PCP the first time after the onset of the symptoms back in November.  They didn't help.

I thought that would be fine.. I'd do the one month course of 'roids and Dr. Turban would, in the meantime, find a neurologist who has an interest in headaches and tinnitus to send me to.  I dropped all attempts to teach him about slow CSF leaks, their symptoms and how they match up pretty damn close to mine, and just agree.. and left.

2 days later, on a Saturday afternoon, Dr. Turban calls me up and explains to me that he doesn't feel like he's given me the "level of care that I deserve".  Duh.  So he orders the lumbar puncture (spinal tap), with opening and closing pressures... which means the radiologist that conducts the test measure my CSF pressure before draining some CSF off to be sent to a lab for tests, and after.

During the course of getting setup to drill into my spine, the radiologists engages me in chit chat where I explain my theory of my problem.  He was an affable guy, and clearly caught a bad case of Teh Gay in his youth.  Guess what he says after he measured the opening pressure;  "the pressure is low".


The rest of the procedure went fine.. I had to lay on my back for 4 hours before I could go home, which is not comfortable for me.. but whatever.. and now I'm in front of my computer when I'm supposed to be laying in bed.. but whatever, I'm fine.

The low pressure does not prove my theory about the slow CSF leak, but a normal or higher pressure would have dis-proven it.  It'll be interesting to see if the lab results on the fluid show anything abnormal, but at least I have another piece of info.  I want them to do a fucking blood patch on the chance that I'm right.  It would fix everything.  But you know what I found on Wikipedia?  The average duration from symptom onset to diagnoses for a CSF leak is 13 months.  13 fucking months!  I know exactly why that is.

The fix for it, is basically what I had done today, but instead of drawing fluid out, they take some of my blood and inject it into the spinal column.

Anyway.. that's the update.  I'll send Dr. Turban a message tomorrow to let him know the test was performed and he should be getting results soon.

Otherwise, I'm doing okay.


Kor said...

I feel the most important question I can ask right now about the procedure is... did they turn it up to eleven?

Steve said...

Glad you're doing ok and at least somewhat closer to a diagnosis and a fix. I can't imagine having that kind of issue for so long w/ no one capable or willing to diagnose and fix me.

Keep us posted, the lack of political posts or posts about Doug leaves us all needing updates on your medical status and the magnificence of your balls.

Take care.


Tom said...

This one goes to 11.