Question:
Can anyone help me prepare for this spinal tap?
My neurological history is quite crazy. In July of 2000 I started seeing crazy flashes of light in my eyes all the time. I went to my optometrist, who immediately referred me to an opthalmologist. He indicated that I had the symptoms of a brain tumor, but suspected it may be pseudo tumor cerebri. The MRI was not conclusive. I continue to have the flashes and kind of got used to it, until December, then came the headaches. Terrible throbbing headaches, that nothing could cure, not Advil, Tylenol even migraine medicines like Imitrex. My PCP sent me to a neurologist, who again suspected it may be pseudotumor, yet there was very little swelling of my optic nerves for such serious symptoms. He sent me to an opthalmoloist in New York who specialised in pseudo tumor, who said that it is highly unlikely that I have it. So back to the neurologist, who puts me through lots of tests including an EEG and Sleep Deprivation study which both turned out abnormal, but not to the extent that epilepsy was indicated. So now the headaches have gone, occaisionally I get them and I'm knocked out for the day, but now I've started passing out, and have since moved to Michigan. So back to a different neurologist, who I refer to as "insensitive pig." I have never met a more awful doctor. He told an entire waiting room full of people that a spinal tap would be incredibly difficult on me, as I was "obscenely overweight." So he ordered a spinal tap under fluoroscopy, and mntioned at least ten times how horribly hard it would be for him to do on someone my size and made a huge scene out of telling the radiology department on the phone, that they would need to have an extra large needle, as he was dealing with a very obese patient. He also stated that he did not trust the radiologist to do this, so he would do it himself... ooh I get the pleasure of his company at an already traumatic moment. So I went home and after thinking abou it, I said no, why the hell should I put myself through that when I haven't had a bad headache in months, I'm used to my visual symptoms and I'm really not uncomfortable in any way AND besdides, I would be getting WLS soon, and theoretically if it was pseudotumor, it would clear up with weight loss. So I called his nurse, said I would not be having a spinal tap, nor would I ever come back to his office. And that was all over a month ago. But then on Tuesday when I went in for my physical so my PCP could write that I was medically sound for surgery, I had told her about the spainl tap and neurologist fiasco before, and she seemed fine with it. Yet the other day she had changed her mind, and wants me to have the spinal tap. Now if you know me, you would know I am the biggest chicken about such things... (People always say why aren't you scared of WLS then, and I say because I'll b asleep) but seriously I pass out every time I go for my OB/GYN check-up or even an MRI, I am so nervous about things like that. I will shake vomit and probably eventually pass out. When the neurologist was going to do it, he said they could sedate me, but my PCP says that would affect the opening pressure, which is what they need to get. And also it's going to be the radiologist doing it, which the neurologist didn't feel comfortabel with. So I'm freaking out, because of this. I know if they could just sedate me I'll be fine. But the way I get when these things need to be done, they'll never be able to do such a delicate procedure ith me screaming and squirming and freaking out. I know it sounds so childish, but that's just the way I am. So how can I keep calm... I know everyone is going to write back and say they're not that bad, but that won't help me, I just need to know how to calm myself down and get through this without ending up with a gant needle coming out my chest!!! :) Any help would be so much appreciated! Sorry for the longwinded post! Love to all! — Deborah W. (posted on August 23, 2001)
August 23, 2001
I had a spinal tap done when I was 13 and let me tell you it was not fun.
First off my doc should have done it under x ray but insisted that it would
be just fine. After 7 failed attempts I finally told him to quite. Since
then I ahve had severe back pain in the area. If the problem will go away
after the surgery I would wiat . OR Go to another nero doc and let him do
it.
— jenna F.
August 23, 2001
Deborah,
This is just a suggestion. I have Polycystic Ovarian Disease and I suffer
fro severe headaches. I found a Doctor in Tn that was treated me for both.
He suggested a spinal tap also. I freaked out just like you. I never went
through with it because we found some meds that worked (for awhile). He
suggested that obese people (with PCOS) sometimes have extra spinal fluid
and that causes pressure in the spinal column which in turn causes the
headaches.If you lived here in TEnnessee I would tell you to go see him,
but the spinal tap isn't much different than an epidural( if you have had
one of those.)I know this isn't much help .
Good luck,
Jennifer FOgg
— Jennifer F.
August 23, 2001
I had a spinal tap under flouroscopy before. It was such a piece. They
initally tried to do it the traditional way, but the neurologist got really
frustated and couldn't get the needle in (because I was fat).. it hurt like
heck while he was trying. However, under the flouoscopy, it was so easy,
quick and almost painless. Try to relax as much as you can. The only bad
part of the whole procedure is that they didn't cover my big butt and it
was hanging out there exposed to the breeze!
— BethVBG
August 23, 2001
Well when I had one done (at the instance of the neuro doc)
because of headaches--it was dr who did the tap--and if I remember
correctly--I was scrunched up in a ball like a pill bug--they drew from the
base of the spine and they told me to hold very still--I was just praying
to God that I wouldn't cough or fart!! It was slightly painful but very
scary--and the tests came out ok-RELIEF!--It almost sounds like your PCP
and former neuro are playing "CYA" if insurance is paying why not
go to another neuro and get the tap--then you will know for sure there are
no problems in that area--PS I still have the "bad headache" and
do not know what causes them after 20 years and every test in the world--I
am hoping the WLS may have some effect--good luck to you whatever you do!!
— [Anonymous]
August 23, 2001
Deborah, I feel for you. If I were in your shoes I would tell my PCP that I
decline the spinal tap. If he/she decides not to give you the referral
because of this, then I would find another PCP and I would NOT mention my
headaches when asking for the referral. Your PCP and neurologist sound like
the biggest PR*CKS. You do not deserve to be treated so badly. You really
should file a complaint against the neurologist who humiliated you. Please
don't let him get away with that lousy unprofessional behavior.
— artistmama
August 23, 2001
LOL, I just reread my response and realized I left out a couple of words.
I meant to say that it was "a piece of cake!"... guess I must
have had my mind somewhere else??? :o)
— BethVBG
August 23, 2001
Hi: Just thought I;d share my experiences...I was diagnosed with the
pseudo tumor cerbri. HORRIBLE terrible headaches that nothing could cure,
blurred vision, shadowing, ect. I also went to a neurologist who ordered
the spinal. I believe a radiologist did it (I had thought they were the
ones who have the expertise in this?) Anyway, over the course of time I
have had 2. THe first was horrible...I'm not gonna kid you. HOwever, it
did help releive the pain. Then when it was time to have another, I was
petrified. I told my opthamologist and neuro docs I did NOT want the same
doc to do the tap. I researched and found one that I thought was very
experienced. I'm not gonna kid you, it hurt, but nothing as bad as my 1st
experience. I do believe a lot has to do witht the fear of the unknown.
Anyway, I defiantely think you should go ahead. If it is pseudo tumor
(which any good opthamolgist should be able to diagnosis for sure or not)
even if you don't have pain, it doesn't mean that your eyes aren't
suffering. I dealt with it for about 10 years, and each time my optic
nerve got flatter. (I could have gone BLIND) Anyway, had WLS 6 months
ago, and I haven't had a pseudo headache since!! (have lost 110 pds) I will
be going to see my opth., for regular follow-up, and hope to hear good
news. Good luck to you!!
— Karen A.
August 23, 2001
i just want to say i have been dealing with PTC for 7 years the preferred
term now is idopathic intercranial hypertension....my concern is that if
you are currently having visual disturbaces you could conceivablie wake up
blind at anymoment i would have the tap "dochole" or not (this is
a term for a doc that is a A hole) get ythe tap for you and to protect your
vision.....weight loss is NOT a garentee of a cure for this disease...and
the loss may not come fast enough to protect your vision!!! and once your
are blind you will not be able to correct this!!!...HAVE the as sooon as
humanly possiable!!! increased pressure can also cause hearing problems as
well as memory and retention problems it is also common for fluid to build
around your heart with this disease....if you would like to know mare e
mail me [email protected] dont mean to scare you but this disease is not
a MINOR thing and time is of the esence..are you monitoring you vision with
feild visuals at least evert 3 months? i lost my vision from the outside in
and if not for the field visuals i would not have known it till it was to
late!!!!! PLEASE TAKE TaAAAAHIS SEROUSLY !!! HAVE THE TAP DONE !! UNDER
FLOUROSCOPY ISNT THAT BAD AND IT COUL SAVE YOUR VISION!!
— bekka K.
August 23, 2001
I see that you have gotten a lot of responces on this. I too am a PTC
sufferer. I have had it all from headaches, nausea, blurred and double
vision, loss of hearing and vertigo. I thought all of that was bad until my
neurologist suggested I have a lumbar puncture to confirm the diagnosis and
relieve the pressure. It was the worst. I usally take pain very well but I
cried like a baby. The most dangerous damaging thing about PTC is permanent
loss of your vision. I could not imagine not seeing my children again so I
went through with them four times. My pressure was so high I consented to
have a lumbar shunt surgically placed. This provided relief and was
wonderful until it caused horrible disabling pain in one or both of my
legs. My prayer that the wls is going to provide some relief. I suggest
that you have it done at least once. You will get over the pain but don't
let fear take away something so precious YOUR SIGHT. There was no easy
answer, I hope the truth helps. God Bless!
— Vanessa H.
August 23, 2001
I don't know how much of help I can be, but I have had spinal menigitis(sp)
twice and therefore had two spinal taps. The first time I did not know
what to expect and I was more afraid of the procedure than I should have
been. The second time I knew what to expect and it was not as bad. The
easiest thing for me was to curl up in a ball like they say, I prefer
sitting up and leaning over the bed rail. You know it is going to hurt -
so expect it, but try to think about anything that will take your mind off
of it. Have the person doing it tell you what they are doing efore so you
know it is coming - Surprises are no fun to me. Try to have a friend or
someone with you to hold your hands and comfort you - it helps. Grin and
try to bear it - the good thing is it is over fairly quickly. Good Luck to
you!!!
— Melissa T.
August 24, 2001
Thank you all for responding! You've all been so caring and wonderful... I
am feeling a little better, yet still scared, but to know that so many of
you have been through it and survived (not that I wouldn't but you
know...:) is just reassuring. I really appreciate you all being so open!
Thank you!
— Deborah W.
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