I Will No Longer Trust A Doctor To Do It, Unless It Is Done In Ir

Hi J.,
I have to give the truth on some things. Many people here know me, and I give the best advice I can. I am dieing from the complications of CIDP as the various treatments failed me. And have been through ALL the tests prior to diagnosis, and ALL the protocol of treatments, so I can comment on most anything here.
I’ve had about 4 or 5 LP’s.
But I must comment here, that I do NOT trust a doctor to do it,
unless it is done in IR (Interventional Radiology).
I had a HORRIBLE experience with my first LP, about 9 or 10 years ago.
First, I was scared to death to have one–when I was a child about 11 or 12 years old, I was in the hospital for a kidney infection. This was back when they had all pediatric patients in one large room. There was a girl in the bed next to me that I got to know, about my same age. One day they took her for, (what I know now), an LP. It was done down the hall in one of the examination rooms. I could hear her screams and cries coming from the room!!! I went down to see what they could be doing to her, and they had left the door open, and I watched them stick the HUGE needle into her back.
She screamed for at least an hour.
I remembered this, when I was told I was going to get an LP. I told this to the neuro, and told her I was PETRIFIED and very nervous about getting it, and told her about when I was a child, watching it and hearing the screams.
She told me there was nothing to worry about, and brought me to the room where it was to be done. She had someone assisting her, that I later found out that the hospital I was in, was a teaching hospital.
She did the numbing of the area first.
Then…here goes…
She kept missing the spot where to go into the spine. Everytime she would miss, a leg or both legs would jump, or an arm would move, as she was hitting different nerves in my back. It was as if this was her first LP and she didn’t know what she was doing. FINALLY, AFTER THE SIXTH TIME OF GOING IN, AND BY THIS TIME, YES IT WAS HURTING, she got the damn needle in the right spot, and got the spinal fluid out. (By the way, you are lying on a bench bed, in a fetal position, so they can get at your spine.) So, they had me lie down flat. Suddenly, I yelled out to her, something was wrong! All of a sudden, my legs started shaking, then my whole body was shaking and my eyes rolled back in my head. She yelled to the assistant to call a CODE BLUE, since she didn’t know what was going on, and of course, I CERTAINLY didn’t know what was going on. The tiny room filled with doctors. My lifepartner and a close friend were outside in the waiting area, and heard the “Code Blue Neurology” and saw the doctors running. They were starting to panic, since they knew I was in there.
After about 10 minutes, the whole body shaking subsided. They rolled me out and down to the ICU quickly, right past my waiting partner and friend, to the elevator. They decided it was some type of seizure from either her poking different areas, or the high anxiety of having it done. They hooked me up to machines and gave me sedatives. They watched me through the night and I left the next day. Because of all the shaking with my head, I had MASSIVE headaches. They gave me Dilaudid for the pain, thank you very much.
—
Needless to say, I NEVER went back to that hospital, that doctor, and even switched health care groups, (my health insurance is done in groups of doctors).
I did find a good GP, and a new neuro. About a year later, they wanted to do another LP. I said either you put me out, or find another way of NOT letting a doctor do it.
Well, it turns out there IS a way that it CAN be done, that I think ALL LP’s should be done this way. I happened to be a patient in the hospital at that point, due to the CIDP, and they told me where it can be done in Interventional Radiology. They use an on-going x-ray, to know EXACTLY where the needle is supposed to go in. And the needle in hooked to a machine, so that it goes straight in, gets the liquid, and quickly out.
So, I laid down on the table, flat on my belly. He injected a local anesthetic,
(I couldn’t see what was going on, since my face was down in the pillow).
A few minutes later, I said to them, so when are you going to start.
They replied–“IT’S ALL OVER!”…WOW–I didn’t feel a thing. One-two-and it was over.
—
So, when I am asked to get another LP, I will ONLY get one if they have Interventional Radiology do it. If a doctor tells me no, that he would do it, I then DECLINE getting the LP. Do it the way it should be–to me, it should ALWAYS be done by IR, and NOT by a human/doctor doing it.
—
Sorry-I had to give you a “con” note here, but see it you can get yours done with IR.
Ken
(KEDASO)