Spinal tap next week..... a bit nervous

[KerriC1]

NS is suspecting hydrocephalus and I’m scheduled for the dreaded spinal tap and also to have my eyes dilated to rule in/out papilledema....

Had one years ago way before chiari diagnosis which caused a CSF leak and had blood patch. But knowledge is power so I’ll be sure to tell them to draw slowly.

Will post results after. Just wanted to vent

[selmaS]

How are you doing Kerri....did you have your tap yet?...Thinking of you.

[KerriC1]

Hi Selma. I had it done yesterday. Pressure wasn’t high (good news!) it measured 12 so I’m guessing that’s normal. Yet gave no insight as to why I feel so crappy....

And I felt decent after the procedure but this morning couldn’t stand to be upright even for a few minutes.... seems very familiar. So  laying down drinking lots of water and coffee and praying no blood patch will be needed

[selmaS]

Hmmmm wish I had answers for you.....but sending healing MoJo that you get a natural seal, I agree, you don't want to get a patch if you don't need one.

Please keep me posted on what you find out.

[KerriC1]

Ended up at the ER. Deff csf leak. They started me in a caffeine drip (strange) but didn’t help. The ER doc wanted the blood patch, radiologist wanted me to wait 4 more days... so my husband called the NS who called the hospital. Needless to say I received the blood patch. Finally feeling some relief. And also was told by NS that 12 was pretty low so I guess that’ll be investigated.

Just wanted to update. Thank you for thinking of me

[selmaS]

WOW....goodness , glad you are feeling better...sorry you required the patch.From what I understand they use your blood for them now? Am I right on that?

[KerriC1]

Yes ma’am you’re right. They had to have a sterile IV and arterial blood. Blew the first vein so had to go to the other arm. Then used fluoroscopy and dye and injected it. Little painful but I already felt sooo bad that it was the light at the end of the tunnel.

Now just the usual unusual headaches and such. Hope to find the cause soon

[selmaS]

Glad you are feeling better....I pray you continue on that path and find the cause.

[KerriC1]

Thank you Selma. I think they’re suspecting s leak since I have that small pseudo

[selmaS]

Well that would make sense....but is tht another leak in addition to the one from the LP?

[KerriC1]

Yes from the surgery. I have a small pseudo and NS went off symptoms suspecting hydrocephalus. That’s been ruled out so now it’s too little pressure and possible leak.

Guess it makes more sense to me. Blah!

[selmaS]

To me a psudeo is the one true sign of a leak.....but sometimes they resolve....but like with the LP leak, you are to keep hydrated and lay flat....not easy to do, I know I had a leak from an epidural when I had my daughter, I had to lay flat for 5 days....it was horrible.

Good luck and keep me posted.

[KerriC1]

That was my impression too....
And those leaks sure are miserable aren’t they?

[selmaS]

Yes indeed they are...I could not stand light, sound or to move....ugh the worst.

[KerriC1]

Just a little update. NS said the spinal tap confirmed the CSF leak and wants me now to have a high volume blood patch. Didn’t even know there was such a thing. But I’m currently having problems finding anyone in my area that does this procedure..... hoping I don’t have to go all the way there for it but if I have to then I’ll do what I need to do I suppose. And if I can avoid another surgery then it’ll be worth it

[selmaS]

I never heard of it either.....what is it?

[KerriC1]

From what I gathered it’s kinda like a normal blood patch only they use like 60ml of blood and inject it with the hope that it will reach the leak in my head..... and they have to keep drawing blood while doing it because it will clot. Something like that anyway

[selmaS]

Hmmm sounds odd....when do you have to have this done?

[KerriC1]

It does sound odd. And prob why no one in my area does it.... so the NS sent my info to the doc in their area who will do it. Gotta travel to get it. Waiting to schedule now.

I’ve seriously never heard of this so I don’t have much info to know what the chances of this working would be. I’m hopeful though. Just don’t wanna have another surgery. But man I’d love to feel good again!

[selmaS]

Sending prayers, good vibes and healing MoJo your way.

[KerriC1]

The blood patch went well. But the dr who performed it said not to get my hopes up that it will help and most times it’s a surgical repair. It’s been 2 weeks and I’m only getting worse.....

I have a brain MRI next week so we shall see....

[selmaS]

Oh no, I m sorry to hear that...sending you Good Vibes, and Healing MoJo...
Prayers will continue until I hear you are well <3

[selmaS]

Hi Kerri......I know how stressful it is waiting on testing and especially a tap......sending love , hugs and prayers that the tech istens and does a slow draw.....

Will look for the results.....Good luck.

[KerriC1]

Thank you Selma. I appreciate it more than you know