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tgal
09-14-2010, 06:55 AM
OK everyone. I got the call from the newest neuro this morning and my LP is set for Friday morning. Of course I have read up on the LP and how it is done but I would really like to hear from some people that have gone through it. Does everyone have the horrible headache? How long does it take for you to feel normal? What did you experience?

Please don't try to spare me the details if they are bad I do best if I know the good and the bad and can plan/prepare for anything.

rob
09-14-2010, 07:21 AM
For me, the LP was not the big deal that I thought it would be. The actual procedure is uncomfortable, but not terribly painful. I layed still for around two hours I think after the procedure, and I did get a headache, but it wasn't the horrible headache from hell that I thought it would be. I had a lingering mild headache and soreness at the puncture site for about a day, then I was fine. Overall, the whole experience wasn't nearly as bad as I thought it would be.

Rob

Bonita
09-14-2010, 07:51 AM
I have never had a lp but have had many epidural injections for the last 7 years for my back. They do smart but it helps. Good luck qwith your procedure and i hope you feel better afterwards. Bonita

magistramarla
09-14-2010, 12:15 PM
I had one in June, and I agree with Rob that it wasn't as bad as I expected.
The neuro had told me that I could drive home afterward! I made him wait 'til a day when Jeff could be with me.

The doc had me to sit on the side of the bed and lean over a tray. Jeff sat in front of me, held my hands and kissed me, which helped a lot!
I felt a little shaky near the end of the procedure and spent the time waiting for the lab to come take blood lying flat on my back.
Jeff brought me home and I stayed flat on the couch with the cats, watching TV for most of the afternoon.

I felt sore all day, but I didn't get even a hint of a headache! The worst thing was putting up with Jeff's cooking that evening.
So, I think that the key is to stay flat on your back for a long time, even if the doc doesn't think it is that important.

I hope that it gives you some good information. Mine was all negative, so the neuro told me that I shouldn't be having any neurological symptoms - Hah!
Hugs,
Marla

Angel Oliver
09-14-2010, 01:51 PM
Goodluck Tgal for your LP on Friday.Glad everyone helped you out as ive never had one.Thinking of you.xxxxxxxx

tgal
09-14-2010, 04:46 PM
Thanks everyone! My neuro said that I had to bring someone with me to drive and be prepared to be there for 4 to 5 hours. I guess that is the "laying down time" he wants to get. The hospital is about an hour away (if no traffic) so I guess they want to make me lay there before the drive home. I will admit that I am more nervous about this one then any test that I have had. I will keep positive though and "not borrow trouble" as my mom use to say.

Thanks again!

tgal
09-17-2010, 06:00 PM
Hey Everyone,

OK, LP was today and although it wasn't as bad as I expected I don't want to do it again. I was prepared to have a headache tonight but what I wasn't prepared for was the horrible pain in my lower neck and at the top of my spine. That started about an hour ago when I went to get up off the couch. That sucker hurts so bad it took my breath away. Soooooo I am back to laying down and I am drinking fluids. Hopefully it will go away soon.

Gotta love all these tests!

red246
09-17-2010, 06:19 PM
Sorry your back is hurting! That stinks. Gentle ((hugs))! :)

Nonna
09-18-2010, 05:35 AM
Hugs and good thoughts from me also. The residual pain from tests sucks but we do endure

hugs, nonna

Saysusie
09-18-2010, 09:27 AM
Hi Tgal;
Today is Saturday and I was just wondering how you were feeling today? Has the pain in your neck and spine subsided? Let us know how you are doing.

Peace and Blessings
Namaste
Saysusie

tgal
09-18-2010, 11:20 AM
Hi Susie,

No improvement. Actually it is the top of my head (behind my eyes and on the sides) and my upper neck now. It is fine if I lay completely flat but if I try to get up it is horrid. The light seems to make my stomach upset so off the puter I go. Will check in later;

Love to all

pandagirl
09-18-2010, 07:42 PM
Keep a check on it...if no improvement, I would call the doc. I had a cervical epidural once...omg....horrible headache for days..same thing..had to lay flat only. It did eventually subside on it's own.Feel better :)

magistramarla
09-18-2010, 08:36 PM
Hi Tgal,
I'm so sorry that you are having such a hard time with the LP. If you're still feeling that bad, call the doc. I've read that some people have had a problems where the puncture didn't seal up correctly and they had to go back for some sort of a "patch". Sorry if I'm not too clear on this. Hopefully, someone who knows more about it will come along.
Keep us informed of how you're doing!
Gentle hugs,
Marla

rob
09-19-2010, 05:12 AM
How are you doing today Tgal? Any improvement?

Saysusie
09-19-2010, 11:10 AM
My friend, who had the same procedure and same type of pain, suggested that when you try to get up, roll completely onto your stomach..pull your legs up beneath you, tuck your head under slightly and slowly roll up until you are in a sitting position on your knees. from there, try to get up, one leg at a time..supporting your head if necessary.
She thought that this helped her because she was not using her neck muscles to rise up from a lying position. I don't know if it will help you, but I thought I would pass it along.
I do hope that you are better today, from what I hear, it does eventually subside, it just takes some time.
I agree with Pandagirl, if it does not get better, call your doctor!

Peace and Blessings
Namaste
Saysusie

tgal
09-19-2010, 06:16 PM
Hey Guys,

OK, I have to tell you that this post lumbar headache SUCKS! Today is the worst day yet. I have not been out of bed until now (8PM) except to lay in the bathtub 3 times because laying in the hot water seemed to help. Actually, laying down anywhere helped but lifting my head was out of the question. I have decided if I am not better tomorrow I am going back to the doctor so they can fix it. I usually deal with pain well but this one is tough.

Thanks for checking on me

red246
09-19-2010, 07:00 PM
Tgal,

So sorry to hear you're still not feeling good! Hope you wake up feeling better - if not call the doctor! ((Hugs))

BonusMom
09-20-2010, 07:50 PM
So sorry that you're having so much pain after the procedure. I haven't had a lumbar puncture, so I can't relate or offer any advice on how to deal with the side effects, but can empathize with the horrible headache.

Know that we're thinking about you and wishing you well.

Hillbillie
09-20-2010, 08:32 PM
oooouch! Just thinking about it is making me hurt. I sure hope you are feeling better real soon. Billie

tgal
09-21-2010, 10:11 AM
Stopping by to leave everyone a hug. I am currently in the hospital going through what can best be described as a comedy of errors. I am hoping to have the blood patch soon and go home but I am not counting my chickens! Love to all

red246
09-21-2010, 10:26 AM
Gotta love hospitals! Hope you get to go home soon!

rob
09-21-2010, 01:13 PM
Stopping by to leave everyone a hug. I am currently in the hospital going through what can best be described as a comedy of errors. I am hoping to have the blood patch soon and go home but I am not counting my chickens! Love to all

Just take care of you, and get better.

tgal
09-22-2010, 08:43 PM
I'm FINALLY Home! Thanks for all those that were checking on me in here, and on facebook. Love each of you!

rob
09-23-2010, 03:22 AM
I'm glad you are home! Did they figure out what the problem is?

BonusMom
09-23-2010, 08:37 PM
So glad you're home from the hospital Tgal and am hoping that you're feeling better. When are you expecting to get the results of the LP?

tgal
09-27-2010, 03:23 PM
Well, I just got the results from all the testing and I am back to square 1. I should be happy to know that I don't have MS but I am not. At least if they had said I had it then I would be diagnosed with SOMETHING. No one can figure out what is wrong and one of my doctors even wrote it his report that my issues may be depression related. Am I depressed? You bet your a** I am. I have dealt with this for so long and I have lost everything from my house to my car to my job and I can't get out of bed some days so yes, I am depressed. Did the depression cause all of this? No, it came from it. From what you ask? Who knows! Still no diagnoses which is going to mean no disability which means we will continue to live on 300 dollars a month. I would gladly go back to work if I could but there is no way right now. If someone could find out what is wrong then maybe we could fix it and I could have my life back. Until then I am stuck.

My insurance runs out on Oct. 31. I am really tempted to stop all my meds so my body can go back to the state it was in before the first doctors saw me and maybe then they would get results that they want. If I am going to do that I need to do it soon because it will be several weeks before the effects of no meds would show and I have a very short widow of time. I hate doing that because some of the meds (like the plaq) keep me from the rashes and the major joint pain. Who knows.

Thanks for letting me vent. I am very happy that I all of you to whine to.

Bonita
09-27-2010, 04:14 PM
Glad to know you are home from the hospital but not so glad to hear that you still have no answers. Sometimes it takes so long before things come into light and we find the answers we need. So glad it was not ms. Love Bonita

Linda From Australia
09-27-2010, 04:17 PM
That is such a good strategy to get your doctor's attention!!!!!!!!!!

But I am wondering if you will really do that. There are pros and cons, and all I can think about are the cons. But then again, I am not as sick as you, I have a job, an income, and good medical insurance. The other reason I wouldn't go off medication is that your body might be worse off in the long run, you could do some really serious damage. Another problem that might go against you is that the doctors could say that you are that depressed that you have started to harm youself and rush you into some form of intensive psychiatric therapy.

Like I said I am not in your situation so I really do not know what you are going through. My best advice would be to:
Wait until you are not so upset
Block this whole situation out of your mind
Leave a period time for your thoughts to settle down
Wait a little more time

Then think about what you are proposing. If you still feel that going off your medication is worth the pain and suffering, do some research and find out what damage you could possibly do to your body. If you still think this is the only answer, be BRAVE and CLEAR OF MIND so the doctors don't send you to a psychiatric ward.

I hope you don't think that I don't care about your suffering. I am just really, really, really worried that you might end up in a worse position.

magistramarla
09-27-2010, 09:03 PM
Tgal,
Your results are EXACTLY like mine. Do some research on Sjogren's. I learned a lot when I went to that conference, and I learned that it can mimic MS. The problem is that so many docs don't believe that it has any symptoms but dry eyes and dry mouth.
You might find this article helpful:
http://www.sjogrensworld.org/mandel.htm

Hugs,
Marla

jmail
09-27-2010, 11:41 PM
Wow, tgal, good news in the one sense, yet no answers, which ain't good. The answer is def out there, just where? Perhaps like magistramarla suggests? We're praying for you, and I know what that "insurance" thang hanging over your head can do for the frustration factor...