posted
Scheduled for an LP next Thursday. Don't have a copy of what the neurologist is testing, but I have a list that my "main" doctor wants tested.
Does anyone have some sort of a "master list" or any guidelines to follow? I don't want to have to do this again ----- it's taken a lot of courage for me to even schedule this.
I know that a lot of you will say "Don't get one!," however I have 3 doctors who say it's way past time for me to do this LP for some answers ------ or to at least narrow down a few things, hopefully.
I'm trying to be optimistic about the whole thing, even though my neurologist has warned me that she feels certain I will be dealing with the after-effects of it.
She's referring to the massive headache, the leak, etc. She's told me to block out at least a full week to have NO OBLIGATIONS and to be able to rest and lay flat. She's been very frank about believing I will be in the small percentage of people who suffer these sx afterwards.
All this being said, she promises me that she wouldn't be doing it if she didn't think it was necessary. I DO trust this doctor. I've FINALLY found a neurologist who actually cares; speaks to my other doctors; calls me in the evening to discuss labs, etc.; and basically wants to help me find some answers.
Any advice from any of you would be wonderful! Hope you all are having a Happy 4th of July!!!
Thanks so much, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
| IP: Logged |
posted
I had one... it did not hurt as bad as I thought it would but it did hurt... never had a headache...
It was tender for about 2 years after words. If they are using it to diagnose something that could be bad... then do it. If they are doing it to try to diagnose lyme disease. Run! Posts: 458 | From Miss | Registered: Mar 2009
| IP: Logged |
bettyg
Unregistered
posted
best wishes, and glad you typed WHY this lumbar is supposedly needed.
as you stated, many folks have had them; did NOT help them and the severe migraines they get afterwards.
Most spinal headaches -- also known as post-lumbar puncture headaches -- resolve on their own with no treatment. However, spinal headaches lasting 24 hours or more may be treated.
Treatment for spinal headaches begins conservatively. Your doctor may recommend bed rest and oral pain relievers. If your headache hasn't improved within 24 hours, your doctor may suggest one or more of the following treatments:
1. Epidural blood patch.
Injecting a small amount of your blood into the space over the puncture hole will often form a clot to seal the hole, restoring normal pressure in the spinal fluid and relieving your headache.
2. Intravenous caffeine.
Delivered directly into your bloodstream, caffeine helps relieve spinal headaches -- usually within a few hours -- by constricting blood vessels within your head.
3. Epidural saline.
Injecting a saltwater solution into the space outside the membrane that covers your spinal cord may put pressure on the lumbar puncture site and stop the cerebrospinal fluid leak. But because saline solution is absorbed so quickly by the body, spinal headaches often recur after this treatment. _______________________
Terri, if you get a headache that lasts over 24 hours be sure to ask your neurologist to do a blood patch to fix the CSF leak...be prepared!
The epidural blood patch can be as painful as the LP.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
posted
My 12 yo daughter had an LP. She was very scared, but she did really, really well. I stayed in with her and held her hands and talked with her. I could tell it hurt initially, but she said it wasn't as bad as she thought it would be.
After the procedure, try to stay flat for as long as possible and drink caffeine afterwards--I gave her Mountain Dew which has tons of caffeine. We had her lie on her stomach--NOT her back--to prevent leakage. This was via our LLMD's expert advice. You obviously follow what you feel makes sense and what your LLMD suggests, but lying on her stomach made more sense to us, and it seemed to work.
Also, we were told that as a Lyme patient she should NOT get a blood patch to fix the CSF leak due to the risk of introducing Lyme into it if it isn't already there--the Dr. doing the LP told us this.
Try to get it done by a MD who is highly experienced in performing them and at a hospital under fluoroscopy.
She had only one brief spinal headache (spike in pain in her already ongoing constant headache) the following day, which I think was due to her feeling better than she thought she would so she overdid it too quickly. But that was it for the spinal headache.
She also had some slight back pain at the puncture site for about a week, but massage helped a lot with that.
Good luck. I hope it is painfree for you.
Posts: 648 | From northeast | Registered: Feb 2009
| IP: Logged |
posted
Thank all of you for sharing your experiences and your words of advice. I feel a little more at ease about doing this LP.
Laying on your stomach DOES seem to make the most sense to prevent (or minimize) a leak! I'll check with my doctor about that ------- I do know that she had mentioned laying on my side would be okay as well, so........?
I'm having it done at the Neurological Institute at the Methodist Hospital here, and they do have highly experienced personnel performing these and use best equipment/tools to make this as easy on the patient as possible.
I feel certain that I'm in great hands for this LP, but I'm just scared because of the horror stories I've heard. I need to forget about that and focus on the positive.
Did any of you know of a "list" of certain things that you should make sure they check you for, since I don't plan on having to do this again! Like do you have to request SPECIFIC things on the Viral titres, etc., or do they automatically go down the whole list?
That's the kind of thing I'm wondering about. I know my neuro has a list of what she's checking for (which I need to get a copy of), and my immunologist wrote down a whole page of things she wants included in the testing. (She didn't have the neuro's list in front of her though.)
Just curious. I want this to be done CORRECTLY the first time!!!! Any suggestions are appreciated.
Hope all of you are doing well, and thanks for your valuable help!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
| IP: Logged |
I'm a mom of 2 boys that have had many LPs. My sons have pseudo-tumor cerebri (intracranial hypertension). PTC is diagnosed by an LP. The opening pressure is taken and the normal range is under 200. My sons latest pressures were at 450. An LP would reduced their intracranial pressure and lower their constant, severe headache.
Do you know why the neurologist said you would take longer to recover? It does take my kids a long time to recover, anywhere from 1 to 3 weeks. The neurosurgeon drains fluid to lower their pressure. He has drained up to 50 ml, which is a lot.
My kids are sedated during their LPs. They are given pain and anti-nausea meds in their IVs. Their neurosurgeon does the LP.
My kids can have an IV with caffeine after the procedure. They have to lay flat for 4 hours before they can go home. At home, they lay flat for 24 hours. Most off the time they get a low pressure headache about 36 hours after the LP.
My kids have a long recovery because of the amount of fluid drained. Normally your brain floats in the CSF fluid. The weight of the brain is supported more by the ligaments after fluid is drained, and that's what causes the pain.
My kids did not have any leaks, so they didn't have any blood patches. For them, they needed the time to recover.
You can lay on your back, stomach or side. You just need to be flat. You should drink a lot of fluids. My kids drink water and Mountain Dew (for caffeine).
My kids use their Nintendo DS's, ipod Touches, and TV a lot during recovery.
Good Luck!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey Terri,
I am one of those who did NOT do well with my LP. I remember reading later here that one can request a smaller guage needle. Sounded like a really good idea to me!
Best to you, M
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
quote:Originally posted by Melanie Reber: Hey Terri,
I am one of those who did NOT do well with my LP. I remember reading later here that one can request a smaller guage needle. Sounded like a really good idea to me!
Best to you, M
It's called a Sprotte needle.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
I'm not sure why my neuro said it would take me longer to recover or why she felt certain I would just basically have a hard time afterwards -----
Maybe because I weigh about 93-94 lbs, and they're taking an extra tube of fluid to freeze? Maybe 2 tubes is a lot to take? I don't know......since this is my 1st one, I just don't know.
Maybe because I have a lot of health issues going on? Who knows? I don't think she would be so adamant about me blocking out a chunk of time where I had NO obligations, and that I could do nothing but rest..........no driving kids around, etc. I don't know.
I wonder if you can use one of those deflated balloon things they use in physical therapy that supports your head? It makes your head weightless. It takes all the pressure off your head. You're basically flat, too.
I think I'll ask about that. Otherwise, I think I'll check on the caffeine IV. Sounds like a good idea. Thanks!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
| IP: Logged |
I'm not sure why my neuro said it would take me longer to recover or why she felt certain I would just basically have a hard time afterwards -----
Maybe because I weigh about 93-94 lbs, and they're taking an extra tube of fluid to freeze? Maybe 2 tubes is a lot to take? I don't know......since this is my 1st one, I just don't know.
Maybe because I have a lot of health issues going on? Who knows? I don't think she would be so adamant about me blocking out a chunk of time where I had NO obligations, and that I could do nothing but rest..........no driving kids around, etc. I don't know.
I wonder if you can use one of those deflated balloon things they use in physical therapy that supports your head? It makes your head weightless. It takes all the pressure off your head. You're basically flat, too.
I think I'll ask about that. Otherwise, I think I'll check on the caffeine IV. Sounds like a good idea. Thanks!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I had no time to read the posts. I had one done but would not do it again. They found nothing at all and this is most of the time.It is unnecessary in my opinion and still a risk. I had no lidocaine and it is not necessary. Just told the doctor to stop when I need to breathe. No pain. Afterwards I got vertigo but only because I bent my head down to my boots and I looked down.Do not bend and not look down. If you want no headache stay very flat in bed, head not on pillow for the first day.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with Karenl. I have not had a LP, but have read enough to know that if you have LD, the chances are very slim that they will find anything proving it.
If you are looking for something other than LD, then it might be a worthwhile test.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
The LP is being done to look for many other things, however they'll check for Lyme since they will have the CSF anyway. I've already been clinically dx'd with when I had the bulls-eye rash, symptoms and positive lab work. That was back in Aug. '07.
BUT, it's NOT the reason for the LP. I'm hoping that we'll gain some OTHER useful info from doing this. I've got a lot of things going on and it would help to possibly rule in or rule out certain things.
Thanks for the feedback!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
| IP: Logged |
EtherealGirl
Unregistered
posted
Just gonna throw my two cents in.
I had one done about 5 years ago. I had severe neuro-lyme so "they" thought it was warranted.
I had a great anesthesiologist so the actual LP was no problem.
I did get a bit of a headache and backache, but was fully recovered in about a week.
However, like others have said, they found nothing. I had a positive WB, but negative on the LP, so a waste of time.
I know you are going through with this, but just don't expect to get a positive Lyme test.
Take good care of yourself after and I hope they find or rule out what they are looking for!
IP: Logged |
posted
Thanks, EtherealGirl! I'm sure they won't find Lyme, because the chances are slim to none that they'll "catch" it in the spinal fluid. I'm not expecting a positive result from the LP.
I do hope they are able to find or rule out SOMETHING, so we can narrow down the playing field. I'm tired of this "hit or miss" strategy and all of these tests and doctors.
I don't want to go through this for no reason, either ------- but it IS something we haven't done and MAYBE it will help us in some way!
Thanks for your good wishes. Take care!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic