I have so many questions but will start with these and truly appreciate your answers.
1. lumbar puncture - any horror stories out here...I would like to know worst case scenario and best also.
2. Had 3 MRI's in past two months, now neuro wants spinal tap - sound par for the course? Anyone else followed this path?
3. MRI without/with contrast - My MRI (1st) without contrast showed the lesions when met with neuro after MRI with contrast (2nd), he said that the lesions did not take the contrast. What does that mean? Is it a good thing or bad? Indicative of ms?
Okay, three a day is enough for now.
Please help as I am in that scary freak-out mode where I don't know what is wrong with me.
Hey, Pat. It's so understandable to be scared, but still do your best to calm down. The thing to do now is to educate yourself as much as possible, and that's what you're doing here. Some of us have really good technical knowledge, and others (like me), just have experience, but many will chime in here to help you.
I think it's just fine that your neuro is ordering a number of MRIs. He or she is being proactive, something we see all too little of here, believe me. Other tests such as LPs routinely follow suspect MRIs, so that's not a big deal. Other kinds may be ordered too. Be glad.
As to lumbar puncture, mine was a best case scenario. It didn't hurt much and I had no after effects. Some people on this forum have had a harder time by far, but from my reading all got over it within a day or two. You need this test, so just follow the instructions they give you.
MRIs with contrast show whether lesions are active when the test is done. For a really good explanation of this, see Quix's thread called MRIs, Symptoms and Lesions. I bumped it up earlier today so it should be no further down than the second page of this forum. I highly recommend it since it will answer many questions you might have.
Thank you very much....I genuinely appreciate your understanding...I actually printed out that thread and when I get out of work will read it. I am definitely in "education" mode and am grateful for having found this site.
I have another post on here where I typed the part of the report for my first mri which showed the lesions if you wish to check it out and offer your advice.
Sounds like the Dr. is looking for other indicators of MS--hunting for O Bands in the spinal fluid. If you get a spinal tap--lay down for hours and do not raise your head as you will learn what a real headache is. Good luck!!
LP isn't as bad as you think. I'm a total wuss with needles. I've actually passed out just from having my blood drawn, so for me the LP was like the atomic bomb of needles. BUT, it actually wasn't bad at all. The whole thing was maybe 7 minutes, and the pain was minimal. I never felt the needle, really; the worst for me was that my nerves fired down my leg a few times. It just felt like my leg got shocked. But it really wasn't bad.
I did get the headache. I laid down for an hour and spent the rest of the day resting, but 48 hours later, I got the mother of all headaches. The good news is that the headache totally goes away when you're lying down. But kills when you're upright. Drink and drink and drink (and caffeine helps, too) to replenish that CSF. The doc told me that your brain is actually a tad sunken down due to the low CSF, so you're trying to fill the tank, so to speak, so the brain will float up as high as it should in your skull and not put painful pressure on the vessels that connect it to the skull. After I got my headache, I'd guzzle 16 ounces of water 15 mins before I'd get up in the morning just to keep the pain at bay.
The contrast reveals active lesions, and the non-contrast reveals older, scarred lesions.
Good luck, and don't be scared--it'll be easier than you think. :)
Thanks again. I have resolved myself to the fact that I will just go into lp with good thoughts and armed with the knowledge you guys have shared. Funny thing about the caffeine. I drink soda all day....won't be a problem there...
Another question if you don't mind. I had heard that it can be more difficult if you are a larger person which I am kind of. Any truth to that? Also, does the nurse actually hold you in place? They haven't given me much instruction or information so how will I know if they will keep me there after lp? I am going to be driving myself to appt - how bad an idea is that? Sorry, that was more than one question but I have so many at this point and guess it never hurts to ask people who know...
thx a million times
I've never heard that one's size has to do with anything, although it makes sense that the spinal cord would be more accessible in a thinner person. I'm medium-sized myself and there was no problem. A doctor will do the LP and will tell you about each step, so don't worry about that. They will make you stay there for a couple of hours, lying down, and after that will tell you what to do if you get a headache and so on. It's all very professional and they know exactly what they're doing.
I had mine done with only some local anesthesia, since I wanted to drive myself home. They don't usually recommend that but it's possible. Since you are so worried, you'd probably be better off having more anesthesia and having someone there with you who can also drive you home.
I love your calming words. Just wish I could take you with me to appt.... :)
It is so great having someone to share this with. I have not told my mom about this even and dh is not sure what to think of this whole ordeal. Wants it to just go away I think. So, this board in just the past few days has brought me more peace than I have had since this mess started a few months ago and that is PRICELESS!
When I had my LP I WAS a LARGE, large woman...over 300 pounds. I have since lost over 130 pounds. Being large is only disadvantageous, when your size prevents them from 'feeling' the vertebrae where they need to get a sample from. That's the only thing where heaviness is a burden to THEM...
NO ONE holds you down for the LP. If they do the LP with you lying down, you will be asked to turn on your side and ball up in a tight ball. This "Opens" up the area, where they need to take the fluid sample. They will give you a little shot to numb the area first. This will feel like a little bee sting. The next feeling you will feel is great pressure. Lie perfectly still and do not do any sudden movements. This way it will be overwith in minutes. When they tell you to lie completely flat, DO NOT EVEN raise your head. I am serious as I can be. There is nothing more painful than what they call a "LP headache." This results from them distrupting the fluid levels of your cerebral spinal fluid. The body needs some time to make more, to even things back out. So laying flat for as long as possible. It helps to equalize this loss of spinal fluid.
If you want to be even MORE sure of a quick tap...ask that it be done under "fluoroscopy." A kind of x-ray to guide them. This will show them the exact spot to tap and makes it alot easier on the patient. Especially if you are heavy in the back, as I was at that time.
You could take a sedative before the procedure, but it's not really necessary. It's mind over matter. It's the pressure that I didn't like. Not painful, just unpleasant...but it was over with before I could finish the Lord's prayer. I swear I am telling you the truth.
Keep us posted and please set your mind at ease. Try to keep in your head, that this LP will give the doctor's a world of information. That will make it easier to handle....knowing how helpful it will be to a possible diagnosis.
We are with you honey....don't despair....so many of us have been through this and guess what, we are still here to talk about it....LOL
Happy Thanksgiving to you and your family, in fact to ALL of our forum members.
I would have someone drive you home. Especially if you're sedated or anesthetized. They made me bring someone to drive me home even though I wasn't sedated or anything. You'll be just fine and it'll be over before you know it. :)
Have a good holiday! Everyone above gave you good advice.
I have not found LP to be that bad...and I have had several. As I am allergic to local anesthetic I have had it done without any pain meds or anything. I would say that the punctures were easier when a fluoroscope was used. I also suffer from severe unrelenting migraines and feared the headache I would get afterwards. But, actually, I think I may have felt even better. I relaxed and drank lots of fluids. Luckily, no problems at all. It was worth getting it done to get the test results.
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