'nother update #27. Update #16. Lumbar puncture/spinal tap recovery

[petesgirl]

Has anyone had a lumbar puncture that could tell me how recovery went? The Dr office told me that I would be down for a good 24 hrs with headache and sore back,
So I'm trying to gage how much help I will have to arrange for the kids.
On another note, does anyone here happen to have MS? That's what I'm being evaluated for. :/ between some symptoms like extreme dizziness and blurry vision, a grandfather who died of MS and some abnormalities on an MRI there is a good chance I have it.

[trcy]

No advice, but I couldn't read without sending P & PT.


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[lalasmama]

I had a LP for MS about 8 years ago. The recovery was bad that first 24 hours, but my sister and her mama were here to take care of both DDs (hers and mine). I remember getting woozy standing up afterwards, and getting a heck of a headache. They gave me a narcotic for the HA, and that had me sleeping for like 6 hours. Somehow, I couldn't walk well (because of the narcotic) and my sister and the nurse shoveled me in the car to go home. No idea how Sis got me in the house, lol. Worse HA the following day due to a CSF leak (dang it!). So, I was down the better part of 2 days.

At work now, can post more later.

[petesgirl]

I had a LP for MS about 8 years ago. The recovery was bad that first 24 hours, but my sister and her mama were here to take care of both DDs (hers and mine). I remember getting woozy standing up afterwards, and getting a heck of a headache. They gave me a narcotic for the HA, and that had me sleeping for like 6 hours. Somehow, I couldn't walk well (because of the narcotic) and my sister and the nurse shoveled me in the car to go home. No idea how Sis got me in the house, lol. Worse HA the following day due to a CSF leak (dang it!). So, I was down the better part of 2 days.

At work now, can post more later.

Thanks, this gives me a better idea of what to plan for! Also, what symptoms led to your MS evaluation, if you dont me asking? You could pm me if you would feel better discussing it in private.

[petesgirl]

No advice, but I couldn't read without sending P & PT.


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Thank you! :)

[chlobo]

Have you been fully evaluated for lyme? I have a cousin who was diagnosed about 10 years ago with MS. Just this past year she found out she has lyme. I've heard the symptoms can be very similar.

[jren]

I was diagnosed with MS 11 years ago based on MRI and symptoms. I had peripheral neuropathy, Lhermitte's sign, fatigue. I mostly have always just had spinal lesions. But I've been very stable for past 10 years.

Now am having other issues, mainly spinal pain and back/shoulder pain, shooting nerve pain down left arm, swallowing issues, weakness in left arm. Recent ANA test came back positive, so not sure what that means, maybe a new autoimmune issue along with MS? Honestly it feels like broken back and shoulder and pinched nerve, so not really typical MS symptoms! No help from ER, MRI on Sunday.


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[boogiemom]

Has anyone had a lumbar puncture that could tell me how recovery went? The Dr office told me that I would be down for a good 24 hrs with headache and sore back,
So I'm trying to gage how much help I will have to arrange for the kids.
On another note, does anyone here happen to have MS? That's what I'm being evaluated for. :/ between some symptoms like extreme dizziness and blurry vision, a grandfather who died of MS and some abnormalities on an MRI there is a good chance I have it.

I did have a terrible headache for several hours afterward. Definitely expect to be down for at least 24 hours. As I recall, I was not up for much for 48 hours or so. No chores. No cooking. No driving.

I went through a similar experience several years ago. My diagnosis ended up being pseudo-tumor cerebri. I was very relieved. Best of luck to you!


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[bisous]

It sounds like you'll want some help for at least 2 days. I hope you can find it. I really wish I was closer and could help you out!

[petesgirl]

Have you been fully evaluated for lyme? I have a cousin who was diagnosed about 10 years ago with MS. Just this past year she found out she has lyme. I've heard the symptoms can be very similar.

The Dr ordered a Lyme test also, and a few other tests so hopefully one of them will yield the correct diagnosis!

[pinkmomagain]

No experience. Just sending you healthy vibes and wishes for a smooth process and recovery!

[carolinacool]

No experience. Just sending you healthy vibes and wishes for a smooth process and recovery!

Same here!

[Melbel]

My white matter lesions/intensities on brain MRI and neurological symptoms were caused by Lyme Disease, which is often overlooked by doctors or they rely on fallible tests. For anyone with a MS diagnosis, I would recommend consultation with a reputable ILADS trained physician. All MS symptoms are also symptoms of Lyme, but the treatments are much different.

http://www.columbia-lyme.org/patients/ld_spinal_fluid.html

[MSWR0319]

The Dr ordered a Lyme test also, and a few other tests so hopefully one of them will yield the correct diagnosis!

Happy to hear this! I was also going to suggest a Lyme test due to the fact that symptoms are similar. Sounds like you have a good doctor!

[BDKmom]

No experience to share, but I wanted to send P&PT for a quick recovery and some answers soon!

[petesgirl]

Well I had my spinal tap yesterday and the actual procedure was quick and relatively painless. I had a mild headache last night that turned into a full blown spinal headache today and I've nothing but lay flat in bed. Even a 2 minute trip to the bathroom gives me a killer headache and neck ache. I'm pretty sure I have a leak so tomorrow I'll be trekking back to the ER (somehow.. Since I can barely stay upright...).

[robinsmommy]

Sorry to hear things aren’t going well. Here’s hoping for an easy resolution and a speedy recovery.

[Philly Mom]

Ugh. Feel better. Update when you can.


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[bisous]

Oh NO! I'm sorry. Can you contact the persons who performed the procedure versus the ER? I'm hoping you'll get faster and better service that way. I hope you have good people helping you out. Feel better!

[California]

That sounds awful! So sorry you are going through this. And you will get through it. It will get better. But for this very intense moment that must feel like a long way away. Hugs and hoping for some TLC for you from the hospital staff.

[petesgirl]

Oh NO! I'm sorry. Can you contact the persons who performed the procedure versus the ER? I'm hoping you'll get faster and better service that way. I hope you have good people helping you out. Feel better!

I did call my Dr and he said he would send over orders for the blood patch to fix it, but when I called a few hours later the radiology dept hadn't received them yet. I'll call again first thing tomorrow but if they still don't have orders I may just go to the ER. I had to harass this Dr a few times about sending over the original LP order so I don't have the greatest confidence in their ability to get orders out and I'm not waiting around any longer than I have to!

[newnana]

many spinal headaches resolve within 24 hours on their own. Fingers crossed for you yours does.

If not and you end up in the ER, try not to eat tomorrow before an ER trip so that you can get anesthesia for any procedure they might perform such as a blood patch. Have someone drive you. Good luck to you!!!

[essnce629]

Well I had my spinal tap yesterday and the actual procedure was quick and relatively painless. I had a mild headache last night that turned into a full blown spinal headache today and I've nothing but lay flat in bed. Even a 2 minute trip to the bathroom gives me a killer headache and neck ache. I'm pretty sure I have a leak so tomorrow I'll be trekking back to the ER (somehow.. Since I can barely stay upright...).Definitely push hard for the blood patch!!!

I had viral meningitis in college and 3 spinal taps. The first one they screwed up and I ended up with a severe spinal headache that lasted 6 WEEKS!!! I thought it was just a symptom of my meningitis, which the doctors said would last 7-10 days. NO ONE ever mentioned "spinal headache" or "blood patch" to me, even after ending back in the ER weeks later still dealing with a severe headache that felt like my head was going to explode. I ended up having to take the rest of the semester off because I had missed so much school. I laid flat on my back in bed for 6 weeks, only getting up to take a quick shower which would leave me exhausted. My mom would come home on her lunch break to make me lunch and I dropped down to 112lbs! To this day I'm still pissed that no one mentioned a blood patch! I would have graduated on time if I had had the blood patch!!!

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[petesgirl]

many spinal headaches resolve within 24 hours on their own. Fingers crossed for you yours does.

If not and you end up in the ER, try not to eat tomorrow before an ER trip so that you can get anesthesia for any procedure they might perform such as a blood patch. Have someone drive you. Good luck to you!!!

It's been 40 hrs since the LP so I don't think it's going away on its own. :/

[icunurse]

It's been 40 hrs since the LP so I don't think it's going away on its own. :/

We perform blood patches at the clinic where I pick up hours. It's relatively easy and quick (and usually the pain decreases a lot quickly, too). We do not make people avoid food or drink (only for procedures with sedation, which I have not seen with a blood patch in my clinic). We do, however, suggest trying to drink caffeinated beverages. The extra fluid and caffeine can help a bit with the headache.

[Cam&Clay]

I had to have a blood patch a few years ago. The headache was unbearable, but the blood patch relieved it quickly. I hope you find relief soon!

[petesgirl]

OK, so I am now post-blood patch and the headache is much better ( though not fully gone, ironically it hurts more laying down now). However I have a killer back ache! It starts about halfway down my back and goes down to my tailbone. When I lay flat on my back like he told me to I can feel my kidneys throbbing and my stomach even starts to hurt. Does this sound familiar to anyone? He said my back would be sore but I wasn't expecting it quite this bad. He did inject a full 30 cc of blood which, according to Google, the norm is about 20.

[Simon]

I'm so sorry you only found partial relief, no advice here, but I'm hoping someone chimes in soon!