Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Wednesday

I bucked the system and skipped the spinal tap



A multiple sclerosis diagnosis can be a sticky widget, so to speak. This identification is rarely simple, and it tends to take multiple forms of evidence to determine.

Generally, neurologists will rely on magnetic resonance imaging (MRI), along with the possible additions of Sensory Evoked Potentials (SEP) testing, visual exams, anecdotal and symptomatic information, an in-office neurological examination, and perhaps a spinal tap (also known as a lumbar puncture).
What is a spinal tap / lumbar puncture?

This test involves the collection of cerebrospinal fluid from the patient’s spine, using a large hollow needle, which is inserted directly into the lower back. A lumbar puncture may be performed to diagnose any number of neurologically related conditions, including multiple sclerosis.

The test carries multiple risks, such as:

  • Back pain
  • Bleeding (external or epidural)
  • Brainstem herniation
  • Dizziness
  • Headache
  • Infection
  • Nausea and vomiting
  • and more.

Plus, a lumbar puncture can be downright uncomfortable, to say the least.

I basically cross-examined my neurologist about the lumbar puncture, when she brought up the idea. At the time, I’d already undergone multiple MRIs, the SEP, a host of neuro-ophthalmology tests, and several extensive medical histories.

Our discussion went something like this.

“So the lumbar puncture is both uncomfortable and potentially risky, right?”

“Yes, that is so.”

“And I could experience a horrific headache and possibly some dangerous side effects?”

“Yes. But we could follow up with a blood patch, if you have the post-procedural migraine.”

“Will the spinal tap change the treatment plan you propose?”

“Not really.”

“Will it lead to a more definite diagnosis?”

“Maybe not.”

“Would the lumbar puncture offer conclusive evidence of MS?”

“Probably not.”

“Please tell me again why I need to go through the procedure.”

Maybe I just developed a strong backbone.

I opted out. And I still received the same diagnosis.

That may not be true for everyone dealing with possible MS.

Certainly, not all MS diagnoses can occur without this test.  And I would find no fault with anyone else’s medical testing decisions. The choice is between patient and doctor.

But I learned an important lesson in this process.

The patient is his or her own best advocate, when it comes to medical care. And, in my own case, I chose to take a pass on the spinal tap.

Hey, I already have enough killer headaches without upping the ante with an invasive central nervous system procedure.

Image/s:
Vintage painting by Walter Crane
 late 19th C
public domain

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1 comment:

  1. Finally...found one of your blogs where comments are possible. Took 4 clicks. First the google+page, then I made my way though several of your blogs, before getting here. I'll change the link to your blog to this one, since you're not using the other one and you have several with comments closed. Sorry I didn't realize you were doing the a-z elsewhere. I always ask the doctors if I were your wife, or when I was younger your daughter, would you tell me to have this procedure. Funny, how that often changed their answers. Good for you!

    ReplyDelete

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