Hi Everyone, hope you're well.

Sorry if this is a bit long!

I had my appointment with my Neuro the other day who decided we're going to go ahead with an LP shunt since Diamox, Furosemide AND now Topamax have all failed. Before we talk more in depth about surgery he wanted me to have another Lumbar Puncture to see where the pressure was. It was at 42mmHg, the same as it was 8 weeks ago.

They had problems getting the LP done, had to give me 8 anaesthetic injections and tried four times with two different types of needle.The anaesthetic didn't really work so I felt the whole thing, which was excrutiating and I'm not normally one for complaining about pain. They kept hitting nerves and I was getting shocks and spasms down my legs and in my back. Normally I don't mind needles but I'm reluctant to let them near me again without being sedated!

That was two days ago and I've been lying down, drinking water and lots of caffiene since. My back is agony and when I lift my arms up high, I get an electric shock feeling up my spine. I get a 0radiating pain in my legs and my spine and it's really difficult to walk or stand up straight. Have they irritated the nerve roots or something? Will it go away?

For months now I've also had constant pusatile tinnitus which was breifly gone for an hour after the LP but then soon returned. However about 2 hours ago, I started to develop a low-pressure headache and noticed that my tinnitus spontaneously dissapeared. Is this because of the headache? I'm hoping it won't come back but I know that it more than likely will.

Should I tell my doctor about the back pain/tinnitus or should I just give it a few more days? Not really sure what to do here.

Thanks!

I am so sorry that I am only just replying to this, and I know you must have anxiously been awaiting a reply from someone. I think that you should tell your Doctor about the pain and the tinnitus, and more importantly mention the electric shock feeling you have when lifting up your arms so he can check it out. As for the tinnitus going when you developed the low pressure headache your Doctor might be able to explain it.

IF you have already seen your GP by the time you see this reply, please let us know how you got on, and once again I apologise for the late reply, but as we too have IIH, I'm sure you understand that we also have our off days.

Heidi [You must be registered and logged in to see this image.]

As I just recently joined the group I wanted to share my experience with an LP (lumbar puncture) gone wrong. The procedure went well, but even though I had mentioned that I'd be flying to Florida the next day, they didn't mention anything about taking it lightly or maybe moving the trip a couple of days or cancelling altogether. Two days in FL and I had the worst headache ever. The only way for me to be was to be laying down. Asking around (online) I found out that I had too much cerebral spinal fluid taken out and I had a lumbar headache. The only cure is a blood patch, a procedure like a lumbar puncture but your own blood is injected to replace the csf. I went to the ER in Orlando, where I was given pain pills and told to go to a bigger ER (this after almost 10 hrs where the ER chief resident was trying to locate an anesthesiologist to perform the blood patch). The pain pills worked, so I decided to wait to fly back home and come to the ER here in town (Louisville, Kentucky). I HAD to convince the doctors that I needed a blood patch. Because they were afraid insurance wouldn't pay, they let me spend the night, and then did the patch. Headache was gone. It was a horrible experience. I hope yours resolved and wasn't as traumatic as mine.

I am so sorry to hear that you both have had horrific lumbar punctures. Mine haven't exactly been peachy either... and now I refuse to let them do it without sedation. I have an LP shunt, but the VP shunt ideal is out on the table still because I have had no resolution to any of my issues in well over a year. I have several friends I have made that have the VP shunt, and I am interested in seeing how well it works for them before I give it much more consideration. Honestly, I'm a bit tired of being a pincushion. We all get that way. I think, we have expectations for results or tests - and when it doesn't go the way we wished it would, we tend to be a bit put off about things. The best thing I have found, and believe me, I'm more than guilty of blaming the medical profession, is that we cannot blame them. They are capable of mistakes, accidents.... and unfortunately, with LPs... it's pretty hit or miss. The one time, I felt fine immediately after, and once my bit of time had passed with no occurrences, they let me up to use the rest room. I took a couple steps, then ended up in the fetal position on the floor screaming from a low pressure headache. While these tests are a necessity for the most of us, they are not particularly enjoyable. I hate hearing about others having them, I wish that I could everyone, because bleh, I just don't like LP's. At any rate, let us know how things are going! We love to see how everyone is doing, and how they are being treated!

<3 C

Since I was diagnosed a month ago I've had 3 LP's done... The first one went smoothly! No problem at all. The 3rd one was ok as well (the anestesiologist only had to try two times)... But the 2nd time i had the LP done was a NIGHTMARE! It took an hour and a half, and god knows how many diferent needles, before they got it right. My pressure was so high that they couldn't messure it with that ruler-thing they use - it simply ran out on the floor.
Luckily I haven't had any complications afterwards... Other than a very sore back, and a slight headache.

I don't know if the LP-procedure is the same whereever you guys are as it is in Denmark. But I have been promised that from now on it will always be a skilled anestesiologist doing my LP's, so we can at least minimize the the chances of a nightmare-LP.

As for what you're saying claudiasu:

Quote :

they didn't mention anything about taking it lightly

I am really surprised! How can they not have told you that?? After my first 2 LP's the kept me in the hospital for observation for at least a couple of days - just to be sure that I didn't have a bad reaction... Now I know what it's all about, but they still make sure that I'm ok and give me an emergency number to call if something is out of the ordenary... (This is one thing i LOVE about the danish health care system)

I hope all of get to smile every day - That is what means the most to me rigth now!

Hugs from rainy DK

There are a couple of things you can do to improve your experience, but there is always a risk of permanent damage & human error. It makes me furious to hear stories of multiple taps in short periods of time. These needles tear through tissue & muscle. They come into contact with nerves & bone. Your body needs time to heal in between punctures. I was told very early in treatment that you should wait at least six weeks between punctures, eventhough many specialists will push you through because they don't know what else to do. They're supposed to be used as a last resort, and if needed on an ongoing basis then a shunt should be considered. You definitely need to know why it's being done & if it's a necessity.

Ok, I'm off my soap box now..lol. You can request LP by fluoroscopy. It's done by trained radiologist under an x-ray, so they can track the needle & guide where it's going. If you have a shunt, you shouldn't be getting them any other way. Also, make sure you request no students or residents. If you don't have a weight or health issue like arthritis that can interfere with the tap & they had to make multiple attempts, chances are they're new. Remember they are "doctors" & will introduce themselves as such..I learned that lesson the hard way. Stay hydrated before & after the tap..it helps with fluid flow, flushing toxins, & healing. Lastly, remember to keep breathing & relax your back muscles as much as you can. Holding your breath increases muscle tension& tension causes resistance.

A diagnostic specialist once told me that no one knows my body better than I do, so I should never stop asking questions until I find someone that's listening & willing to help me find the answers..that's the best advice I've ever been given! Every body is different, so you just have to learn to read your own cues. If you still have a headache after a couple days, go to the doctor. Pay attention or log your symptoms before & after your tap. Ask for the opening & closing pressures..it's all information your doctors will want to know & will only help you advocate your needs. It's taken me 15 years to get to this point & I'm continually amazed by the things I learn on a daily basis. I hope that helps.

Wishing you a pain-free day!
Julie