Author Topic: Having a lumbar puncture (spinal tap) done on Thursday..so scared (Read 21703 times)

Ac75088 · « **on:** May 11, 2011, 12:44:49 am »

They have to check to make sure I don't have neurosyphilis..I have never had this done before and am dreading it..I am not suppose to eat anything after midnight tomorrow night..I've heard that people drink caffeine beforehand to not get the headache after..but if I can't drink anything I don't know what to do..Has anyone ever had this procedure?

mikeyb39 · « **Reply #1 on:** May 11, 2011, 12:57:48 am »

hi AC, sorry to hear about that. what makes them think you might have neurosyphillis? I'm sure you will do well, just doesn't sound too comfortable

Ac75088 · « **Reply #2 on:** May 11, 2011, 01:01:11 am »

Because I've had to be treated for syphilis before with penicillin..and even though I'm asymtomatic, it is still showing up in blood tests..so they have to go for my spinal fluid

Matty the Damned · « **Reply #3 on:** May 11, 2011, 01:36:34 am »

Quote from: Ac75088 on May 11, 2011, 12:44:49 am

They have to check to make sure I don't have neurosyphilis..I have never had this done before and am dreading it..I am not suppose to eat anything after midnight tomorrow night..I've heard that people drink caffeine beforehand to not get the headache after..but if I can't drink anything I don't know what to do..Has anyone ever had this procedure?

Don't drink anything. The best way to avoid the headache that often follows a spinal tap is to lay flat on your back (no pillow) for a few hours afterwards. It's until the pressure in your spinal column and skull returns to normal.

You'll probably still get the headache, but it won't be as bad.

I do feel for you. I've had a tap and it's horrible. Of course I sat up afterwards and suffered the consequences.

Syphilis is complicated beast and difficult to treat amongst our kind. I hope your CSF is clear of the bug.

MtD

aztecan · « **Reply #4 on:** May 11, 2011, 03:43:21 am »

Quote from: Ac75088 on May 11, 2011, 12:44:49 am

They have to check to make sure I don't have neurosyphilis..I have never had this done before and am dreading it..I am not suppose to eat anything after midnight tomorrow night..I've heard that people drink caffeine beforehand to not get the headache after..but if I can't drink anything I don't know what to do..Has anyone ever had this procedure?

As Matty said, don't drink anything and laying flat is definitely a good idea.

I have had this done. I didn't enjoy it, but it wasn't as bad as a root canal.

Having a lumbar puncture (we used to call them spinal taps), are standard operating procedure for anyone who has been treated for syphilis but still shows an elevated titer when tested later.

Please believe me, while not fun, this is very important. Syphilis and HIV go together like turkey and gravy.

Normally, it takes years for neurosyphilis to develop. But we who are virally enhanced can see syphilis go from initial infection to neurosyphilis in a year or maybe less.

So, I am sorry you have to go through this, but, should they find syphilis in the spinal fluid, they can treat you and get it gone.

In the short run, it sucks. In the long run, you will be grateful.

HUGS,

Mark

seriously · « **Reply #5 on:** May 11, 2011, 04:42:14 am »

Argh. Let me share my lumbar puncture experience from December. It's a bit rambly, and you'll probably wish you didn't read it...

I had been having some severe aches and pains through the fall, a rash on my chest, and by November I had significant decreases in my vision... I was in and out of the Dr's, playing ignorant to the 900 pound gorilla in the room, but eventually, they did an RPR to test for syphilis, and it came back positive with a high titre (with the HIV DX to follow directly...)

Having my vision deteriorate due to a long ignored syphilis infection is the reason I faced my HIV.... so I guess you could say, syphilis saved my life.

The eye doctor confirmed that my decrease in sight was due to ocular syphilis, and the ID insisted that I get a spinal tap to look for other neuro- involvement. I scheduled with radiology to have the lumbar puncture done, no food/drink the night before... I enjoy technology and the lead up to the procedure was actually interesting, they had my abdomen up on the fluoroscope screen and I could watch as the radiologist decided where to place the needle (good thing I couldn't see the needle go in though, it was BIG)... they numbed the area with some lidocaine and he guided the needle into the appropriate space, at which point they tilted the table up and "drained" out the needed amount of spinal fluid. The whole process took about 15 minutes, and it wasn't bad at all. They tilted me back down, removed the needle, transferred me to a gurney and had me lie down in a recovery room for an hour, at which point, I had a friend pick me up.

My head hurt, but I had read/been told that headaches were normal for this procedure for maybe a day or two. I drank a few caffinated drinks, as everyone said this helped... by the next morning it was clear something was very wrong, I could not stand up for more than 10 minutes without the most excruciating pain radiating throughout my skull, then I began to lose my hearing, and I was incredibly nauseous. When I laid down, the pain went away and my hearing came back. I took a few days off for bedrest, but the situation deteriorated, at which point, I called my doctor and she admitted me to the hospital. They ran a barrage of tests, but the neurologist diagnosed that the site of my lumbar puncture was probably leaking, and every time I was upright there was a pressure differential as the spinal fluid leaked out which was causing the pain, hearing loss, and nausea.

They put me on some drugs to help increase spinal fluid production/retention and wanted to give that a few days to see if the hole would close on its own. Again, caffeine is one of the drugs used to treat this condition, so they had me on IV caffeine, 500 mg every 8 hours. Let me tell you, having a nurse come in at 3am and pump 500 mg of caffeine into you in 20 minutes is one of the most horrifying experiences I have ever endured. I had the most incredible night terrors. After 4 days of this, there was no improvement and the doctor agreed to do an epidural blood patch procedure. Basically, they take some of your own blood and inject it into the epidural space, and this blood clots up and clogs the hole that was caused by the lumbar puncture needle... The next day, they wheel me down to the ICU to perform the procedure, and 15 minutes later my headache is gone, and two hours later, I'm up walking around... Problem solved.

All in all, 6 days in the hospital, $35,000 paid by insurance, $2,500 out of my pocket. All for a complication from a "routine" lumbar puncture... To top it all off, the results from the spinal fluid analysis showed nothing out of the ordinary!

My treatment for ocular/neruo syphilis is another story for another day (and still ongoing)...

Ann · « **Reply #6 on:** May 11, 2011, 07:43:46 am »

Seriously, I have to wonder if the fact that you were only able to lie flat for an hour didn't contribute to having a leak. The increased pressure that being upright created may have contributed to the hole not closing successfully on its own. I've always heard the recommendation that the patient remain flat for at least three hours. I'm glad you got it sorted though, but it's a shame it wasn't a very pleasant experience. ((((Seriously)))) Hope you get the ocular/neuro sorted out quickly and successfully.

Ac, please don't let Seriously's experience scare you. While there are always various risks associated with any intrusive medical procedure, problems like Seriously experienced are relatively rare. Just make sure you lie flat for a few hours. Take a good book (or an iPod or something else you can do while flat on your back) with you so the time doesn't drag too much. Good luck!

Ann

J.R.E. · « **Reply #7 on:** May 11, 2011, 08:27:19 am »

Ac,

I have never had it done. Known a few through the years that have though. Just wishing you the best.

Ray

Ac75088 · « **Reply #8 on:** May 11, 2011, 10:02:06 am »

Thanks so much everyone for your replies (especially you Seriously, even though I wanna throw up right now after reading yours) tomorrow is the big day..I'll have to let you all know how it goes..I'm pretty confident with the hospital that I am going too..After all they did bring JFK to this same hospital, even though he died, it's an awesome facility..I just keep that in mind..hopefully no complications

WillyWump · « **Reply #9 on:** May 11, 2011, 10:27:27 am »

I've had a LP. The procedure was a cake walk, I didnt feel a thing, except for the numbing agent. I was also given a tranquilizer which was vvery nice, I could have done the LP all day

They will tell you not to move your head afterwards for awhile...please listen to them. I did not and sat up in bed shortly after the procedure and a severe headache occured shortly afterwards, I'm talking a crying screaming headache. I had to be given morphine for about a day or two.

It should be a breeze provided you take care not to move your head afterwards.

-Will

Ac75088 · « **Reply #10 on:** May 11, 2011, 10:35:50 am »

I'll remember that Will..Thanks a bunch

older-wiser · « **Reply #11 on:** May 11, 2011, 10:46:12 am »

And, then, there is the possibility that your neurologist is so skilled that you won't feel a thing. It is important to lie flat for as long as you are told to do so after the procedure.

liketheboat · « **Reply #12 on:** May 11, 2011, 11:30:29 am »

I have also had an LP done, and did not like it, but did not hate it as much as i thought i would. I also review medical bills for workmans comp and have to read all of the medical records for each service and one of the things i do a lot of in the office is spinal injections and asperations. they alwyas use lidacane to numb it and a lot of the time (espically with needle-phobia) will sediate you.

Bloodpatch headaches are rare, but they do happen. the procedure to fix that is to go back to the hospital, they take blood from your arm and inecect it back into the interspace that they punctured your lumbar.

Wishing you the best, hope it all goes well.

mikeyb39 · « **Reply #13 on:** May 11, 2011, 07:05:30 pm »

good luck AC! Sure you will do fine. i learned something new today for sure.

Ac75088 · « **Reply #14 on:** May 11, 2011, 07:48:01 pm »

Quote from: liketheboat on May 11, 2011, 11:30:29 am

I have also had an LP done, and did not like it, but did not hate it as much as i thought i would. I also review medical bills for workmans comp and have to read all of the medical records for each service and one of the things i do a lot of in the office is spinal injections and asperations. they alwyas use lidacane to numb it and a lot of the time (espically with needle-phobia) will sediate you.

Bloodpatch headaches are rare, but they do happen. the procedure to fix that is to go back to the hospital, they take blood from your arm and inecect it back into the interspace that they punctured your lumbar.

Wishing you the best, hope it all goes well.

thanks a lot..sounds like you know your stuff..I'll be fine as long as I don't actually SEE the needle

Matty the Damned · « **Reply #15 on:** May 11, 2011, 08:33:42 pm »

AC,

Whilst the prospect of a spinal tap is scary consider the alternative. Neurosyphilis is one of the most horrible diseases out there. It really is worth the minor inconvenience and potential discomfort you go through.

I won't list the gruesome details of neurosyphilis but please believe me, it's not something you want to go through.

Best wishes,

MtD

Ac75088 · « **Reply #16 on:** May 12, 2011, 03:37:17 pm »

Hey guys..I had the LP done today..Back home now..Just gotta wait for results

Matty the Damned · « **Reply #17 on:** May 12, 2011, 04:34:26 pm »

Quote from: Ac75088 on May 12, 2011, 03:37:17 pm

Hey guys..I had the LP done today..Back home now..Just gotta wait for results

No big deal?

MtD

Ac75088 · « **Reply #18 on:** May 12, 2011, 04:47:00 pm »

It wasn't as bad as I thought..I did have two instances where an electrical shock went thru my leg during it but the doc said this was harmless..I stayed on my back at the hospital for 2 hours afterwards..drinking sodas..and now I am home in bed..Having a little back pain now

Matty the Damned · « **Reply #19 on:** May 12, 2011, 05:14:00 pm »

Quote from: Ac75088 on May 12, 2011, 04:47:00 pm

It wasn't as bad as I thought..I did have two instances where an electrical shock went thru my leg during it but the doc said this was harmless..I stayed on my back at the hospital for 2 hours afterwards..drinking sodas..and now I am home in bed..Having a little back pain now

Good good. Just rest up and you'll be right as ninepence.

MtD

anniebc · « **Reply #20 on:** May 12, 2011, 06:54:20 pm »

A little back pain is to be expected, as Matty said all will be well, just rest and you will have no problems, I've had two with no after effects.

Aroha
Jan

BigDaneDogs · « **Reply #21 on:** May 13, 2011, 01:56:47 am »

Thanks for this entire thread since I am looking at having to have one of these done to detect the level of HIV in my brain. Needless to say -- I AM NOT LOOKING FORWARD TO IT!!!!!!

seriously · « **Reply #22 on:** May 13, 2011, 02:06:45 am »

Quote from: Ac75088 on May 12, 2011, 04:47:00 pm

It wasn't as bad as I thought..

Glad you made it through okay, hope you wake up pain free in the AM!

Ac75088 · « **Reply #23 on:** May 13, 2011, 09:16:23 am »

Thank you Seriously...so far so good..Still having some pain at the needle site..Hoping Ill be able to work normally tonight (Im a retail mgr..on my feet for 8 hrs) but I can still rest up before it's time for work

mikeyb39 · « **Reply #24 on:** May 13, 2011, 05:51:18 pm »

Hi AC,,
glad you are doing ok...hope you take it easy though, dont work too hard

Ac75088 · « **Reply #25 on:** May 13, 2011, 11:49:27 pm »

On my god..things turned horribly...Awful awful awful headache all day..I went to work at 3pm today and was back home by 4:30..It feels like the worst hangover I've ever had times 100..I so hope this can pass without me going back to the ER

Matty the Damned · « **Reply #26 on:** May 14, 2011, 12:01:45 am »

Quote from: Ac75088 on May 13, 2011, 11:49:27 pm

On my god..things turned horribly...Awful awful awful headache all day..I went to work at 3pm today and was back home by 4:30..It feels like the worst hangover I've ever had times 100..I so hope this can pass without me going back to the ER

Yairs. I meant to say you shouldn't go into work.

Try and rest. If the pain gets worse (or you start throwing up or become really dizzy) go to Casualty.

MtD

Ac75088 · « **Reply #27 on:** May 14, 2011, 12:09:59 am »

The way it happened was so weird..I was in the shower this morning and didn't feel anything..Then I sneezed and all of a sudden it was the sharpest horrible sudden onset of a headache I've ever had

Matty the Damned · « **Reply #28 on:** May 14, 2011, 12:25:08 am »

Quote from: Ac75088 on May 14, 2011, 12:09:59 am

The way it happened was so weird..I was in the shower this morning and didn't feel anything..Then I sneezed and all of a sudden it was the sharpest horrible sudden onset of a headache I've ever had

Yup. It's like that. It's the sudden movement of your head what does it.

You have my sympathy.

MtD

mikeyb39 · « **Reply #29 on:** May 14, 2011, 01:43:36 am »

awwwww...i'm sorry AC i'd come over and rub your head if i knew where u lived...hope u feel better. hopefully they give u some good drugs to take

Ac75088 · « **Reply #30 on:** May 14, 2011, 09:03:44 pm »

Headache has subsided a little this evening...At least I can stand up now..been drinking tons of fluids and caffeine all day..I just hope it doesn't flare up again..Am being VERY careful how I cough or move my head :p

Ann · « **Reply #31 on:** May 15, 2011, 09:11:27 am »

((((((AC))))))

Aw, sorry to hear about the headache. You have my empathy - I sometimes suffer from migraine. How are you feeling twelve hours on? (I see you're online right now) Hope you're better now.

Ac75088 · « **Reply #32 on:** May 15, 2011, 11:52:39 am »

Quote from: Ann on May 15, 2011, 09:11:27 am

((((((AC))))))

Aw, sorry to hear about the headache. You have my empathy - I sometimes suffer from migraine. How are you feeling twelve hours on? (I see you're online right now) Hope you're better now.
[/quote

Ann,

I just got sent home from work an hour ago after almost falling out..It came back in full force, plus I found out that my spinal fluid tested positive for infection..I'm gonna have to go into hospital tomorrow..but at least I can get treated

komnaes · « **Reply #33 on:** May 15, 2011, 11:58:25 am »

Hey AC,

Don't worry scare you.. but the last time I had my tap the headache afterward least for 4 days.

The good news is in almost all cases it will go away soon. If not, just rest.. give you the excuse for a long break.

Take care my friend, Shaun

Ann · « **Reply #34 on:** May 15, 2011, 12:17:00 pm »

AC, so you're saying your spinal fluid tested poz for syphilis? At least now you know and can get it treated. Good luck! I hope your head starts to feel better soon. You should probably stay off work until you have a whole day without the headaches.

wolfter · « **Reply #35 on:** May 15, 2011, 03:10:08 pm »

Glad the procedure went well. The mental anticipation of the procedure is worse than the procedure itself.

Good luck!
Greg

Ac75088 · « **Reply #36 on:** May 15, 2011, 05:22:26 pm »

Quote from: Ann on May 15, 2011, 12:17:00 pm

AC, so you're saying your spinal fluid tested poz for syphilis? At least now you know and can get it treated. Good luck! I hope your head starts to feel better soon. You should probably stay off work until you have a whole day without the headaches.

Yes my fluid tested positive..I'll have to be admitted to hospital..but my family doesn't know I am poz nor do they know I have syphilis so I am hoping the hospital will cooperate with me not wanting anybody to know what I'm being treated for

Ann · « **Reply #37 on:** May 15, 2011, 05:41:15 pm »

Ac, you have that right for your medical issues to remain confidential. Make sure you make it clear to the nurse in charge of the ward you go on as well as your doctor(s).

I believe you're covered for this kind of thing under the HIPAA act. You can read a summary of the privacy rules. I tried reading through it just now but I have a bit of a headache (ironically!) so it's not making a lot of sense to me right now.

But regardless of HIPAA, the doctors or nurses cannot give out any medical information to anyone other than people to whom you have given express permission to have that knowledge. You should not have to "hope" that the hospital will cooperate, they are bound by law.

phildinftlaudy · « **Reply #38 on:** May 15, 2011, 06:09:50 pm »

Hey AC -
Glad that you made it through the lumbar puncture and that you are getting this treated.
Pre-hiv I had the syphillis and got the two "cement butt" shots - that felt like golf balls in each butt cheek...then when I tested positive it reoccurred - ended up having to get three weeks of the double cheek butt shots done and doc had to monitor the titers for about 9 months to make sure they were going down.

Definitely not something to play around with --- during my initial infection with the syph it actually caused me to go deaf in one ear until I got it cleared up.

Once again, glad that you are getting this taken care of. Best wishes for a speedy recovery!

Matty the Damned · « **Reply #39 on:** May 15, 2011, 06:33:45 pm »

Quote from: Ac75088 on May 15, 2011, 05:22:26 pm

Yes my fluid tested positive..I'll have to be admitted to hospital..but my family doesn't know I am poz nor do they know I have syphilis so I am hoping the hospital will cooperate with me not wanting anybody to know what I'm being treated for

Oh honey.

Well if it's any comfort, you've joined a large company of syphilitics in this place.

Matteh included.

We're thinkin' of ya.

MtD

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Author Topic: Having a lumbar puncture (spinal tap) done on Thursday..so scared (Read 21703 times)