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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Wednesday, April 18, 2012

Headache Type #746: Lumbar Punctures the Easy Way or the Hard Way?

Two of the tykes we tried to keep from finding ways of killing themselves....

What in the world could there possibly be to laugh about with lumbar punctures, otherwise known also as "spinal taps"?   But in doing a small tour of the CFIDS/ME/CFS blogs in the last couple of days, I "ran" into a surprising number of patients who've had lumbar punctures done to rule out various scenarios or to obtain more accurate diagnoses and was really surprised to see this procedure still being used in the day of the MRI’s and less invasive procedures.  I suppose I’ve really been remiss in the last few years about keeping up with the "changes" happening in the CFIDS/ME world.  I’ve centered too much on my own little universe and not kept up with what my many doctors and I ruled out ages ago and shame on me.  But I think that this just reinforces my desire to help those out there who are going through what I went through so many years ago, hoping that I can give you the information I’ve accumulated the hard way.

Simply said, lumbar punctures are definitely no fun.  But the worst part is the headache. The procedure's over, and after being absolutely still for 24 hours and then after a few slow days, theoretically you can go back to your life, whatever that may be, according to how severely you've been impacted by this illness at this stage of your progression with the "DD."

But everyone seems to forget to mention the headaches. Yes, that surprising unpleasant little gift. And unfortunately, these headaches can last up to a year, as did mine.  Some doctors will tell you this is a rarity. Others will tell you that they are not as "rare" as some "authorities," for lack of a better word, would have you believe.

Today it's easy to google all sorts of information but when the time came for me to get one, it was back in the dark ages (era appropriately 1984) when the Internet was but a dream of some pretty super, mighty fantastic nerds. Information was hard to come by. It took me ages to figure out that I had a new "headache" because I have so many different headaches and migraines, often several at the same time, so it's hard, as well as undesirable, to concentrate on yet another "headache." I mean I worked really hard "not to notice" migraines, fool that I am! As if they could be ignored.

The irony?  This new headache was actually inadvertently caused by a migraine, the mother of all migraines I've ever had, so bad that hubby called in a favor and a friend came by the house to check me out because terrified hubby had not heard such howling since I was in labor the first time.  I had three 10-pound babies with back labor and with delivery #1 everything that could go wrong did go wrong and THAT did not hurt as much as what I had that awful memorable day of the migraine from hell.

BTW: annoying hubby here wants me to add that I'd just gone back to New York City after being away for two years in St. Louis and my very good friend hauled her babies over to her mom's house, her hubby stayed at work for a long marathon knowing I was in town, and we went "poor girl's shopping," me stopping by the place I once worked to see old friends, touring the new places - like Trump Tower, which I'd not seen nor even heard of yet, eating all the wonderful foods I'd missed - mostly from vendors near Rockefeller Center, and seeing quite a few Broadway shows, all in two or three days, plus flying back and forth.  WHY exactly did I get so sick?  I have NO idea though annoying hubby has HIS theories.  But we will all ignore him, OK?  Oh, and I was THIN!  I will grant that those Sabrette hot dogs alone were probably a shock to my system.

Only after I was stabilized with a pain medication could they pry me off the wall in order to get an ambulance to take me to the hospital, where I was admitted and had a lumbar puncture.  Told not to move at ALL for 24 hours, I listened.  And BTW: this is all information I was told after the fact.  I remember nothing because it was just that much pain.

What I realized before I noticed headache/migraine type #746 (number only an approximation, mind you, Ha!) was that I couldn't turn my head from side to side quickly, a definite disadvantage if you have little children and would like to keep them from killing themselves in all sorts of creative and unimaginable ways.  As soon as I turned that head of mine at more than a slow, dignified royal pace, I would experience nausea, vertigo, blinding pain, spots in front of my eyes, and feel as if I were about to pass out, actually very much wishing to pass out - and knocked out, if at all possible.

Consequently, a few years later, when the new neurologist in town wanted me to undergo a second LP, I said, "no way!!!!"  Was he insane???

However, because they had found elevated protein in the first LP - and remember, as first mentioned back in the post "needles in haystacks" (dated 3/21/12 post) I did say that I really did not want to let that elevated protein level in my spinal fluid to mean "yes, you have a brain tumor, you are about to die" or "no, no brain tumor, you are totally healthy and that elevated number is a complete and total fluke."  Our new neurologist in town (of the Lent burger fame) wanted to redo the LP in order to see if he could find out what that "nothing" might be.  When I cried "foul!" he said he had a good idea of how to make even me happy.

First, it was wonderful that back then they allowed you to be hospitalized.  It never even occurred to anyone to sent home someone as soon as the procedure was done.  It would have been too barbaric a thought, and rightly so.  This made a huge difference.  I can't imagine going home after an LP under any circumstances and I was horrified to read that one woman, because she had her LP done in another city far from home, went to a hotel room after the procedure.  Ugh. Don't even get me started on how sick you have to be in order to be admitted to a hospital these days.  Invasive surgery and you are sent home with drains, etc.?  Total insanity to be explored at yet another time.

Finally I was convinced to have the second LP done only after given the option of it being done under fluoroscopy. This was a HUGE difference! The key here: no leakage as the site was so tiny.  Moreover, a blood patch was performed - this enables a plug to be formed, thus further insurance against any more chance of leakage.  This time I didn't even move for a bed pan, folks.  Rinse mouth with water and spit it out, the IV fluid was enough to hold in, thank you very much.

So, if you need a lumbar puncture done, try discussing the fluoroscopy option.  You are put on a metal table that tilts so that gravity works in your favor, making the spinal fluid more accessible to the doctor.  The doctor looks at a monitor so he can thread the needle right where it needs to go, a needle much smaller than the one used in a regular LP, incidentally. Do not, if you can, just have it done lying on the side of your bed, turned away in a fetal position, a nurse holding you down so that you don't accidentally jerk away during the procedure or where the poor doctor is basically guessing where he is going.  We've all seen enough medical students and interns doing their best guessing on "ER" and other medical shows on TV with the returning resident then showing the youngin's how to do it the right way.  Guess what!  Your insurance company doesn't want you going "The Gifted Man" (new CBS medical show) route with the bells and whistles.

With an LP, material is taken out of your spine and this an incredible stress (understatement!)on your body already.  You don't need leakage adding to the problem.  You don't need "bare bones" medicine adding to your problems either.  You certainly do NOT need the very real possibility of another kind of headache appearing to haunt your life.

Talk to your doctors.  They are human.  Heck, there may very well be more advanced ways of doing it now. The message here is that talking to your doctor about advanced options which result in less insult to the body is important.  For the most part your doctors want to do what is right for you, but all too often they are stifled because of third party interference, i.e., insurance companies or Medicare.  Choose a doctor who is knowledgeable and who WILL go out of his or her way to protect you.  I just want y'all to know your options, having been there both ways, the "easy" for billing and, unfortunately, emergency/panicked way, as well as the thought-out, less invasive, but more expensive way.  It's your body.  It's your budget.  It's your option to decide what you want to do.

These are just my experiences and I'd like to save others from the "reinventing
 the wheel" approach, which is what is happening with this DD.  That's all, folks! 

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