Spinal Tap Horror

[smilee922]

My sister had a spinal tap on Monday, and she has been to the E.R. twice, admitted for one night and let go. The doctor's don't want to do a Blood Patch, because they say the way she is describing her severe headaches is not consistant with a spinal headache. They are suggesting physical therapy for her back pain, and sorta dismissing the headaches.  She is in tremendous pain, her head, neck and back, and having to sit home watching her cry in pain is just too much. Should I get a second opinion, and insist on the blood patch? Please help. She is having severe headaches, neck pain, feeling very weak, severe back pain. She had an, MRI, Cat-Scan, and examined by a neuroligist, all normal.  Thanks for any help.

[Lulu54]

Does it stop hurting when she is lying down flat?  If so, that is the LP and a leak from the spinal tap.  If it doesn't stop when she is down, then it is something else probably.  I hope that helps.

Lulu

[steph74]

I had a horrible post-LP headache.  Lulu is correct, if it feels better when lying down (mine did not completely go away) and unbearable when upright, it is almost certainly related to the LP.  I had a horrible dr who wanted me to just "wait it out"--also two trips to the ER and was supposed to be admitted on the first one, but there were no beds and I finally decided I could be cared for better at home.

Another symptom I had was bad nausea and couldn't eat anything.  I lost 8 pounds in the 5 days I waited to get a blood patch.  I was also extremely dizzy and unstable--I needed a lot of assistance to stand up and walk to the bathroom even.

If you think it is related to the LP, I would persist.  The relief from the blood patch was nearly instantaneous.  I wanted to kiss the anesthesiologist that did the procedure, such wonderful relief.

I can imagine how you must feel watching your sister, since my family had to watch me the same day.  (BTW, I got my blood patch on 12/23--I was just strong enough to go to church on Christmas Eve--I still can't believe the dr made me wait so senselessly.)

HTH and I hope your sister is feeling better soon.

Stephanie

[smilee922]

Thanks for the help, I am almost certain it is from the LP as well, and I am going to get a second opinion. Hopefully she can get the blood patch done.

[HVAC]

My back hurt so badly the first two days I cried. I had the LP headache as well. It did get a little better everyday. I stayed flat as much as possible and drank lots of caffine.

[halah29]

I had the LP headache..four days before I couldn't take it anymore..I mean how long was I suppposed to lay flat???  I had the blood patch..relief.  I am never getting another LP..ever..!

[Weakandfalling]

Smilee, I'm so sorry to hear what your sister is going through - it brings back memories of my spinal tap nightmare!!

Yes, insist on a blood patch.  Insist!!!  However, insisting probably won't work.

What I suggest is, ask the doctors to describe exactly what they think a spinal tap headache is like.  You write down their very words:  Then have your sister repeat back to those doctors the very words they used to describe an "acceptable" spinal tap headache.  Yep, she is going to have to lie to get what she needs - a blood patch.
See, I needed a blood patch and I didn't even have a headache!!!

My first visit to the ER post spinal tap, they just couldn't make the connection between my misery and the spinal tap - must have some kind of bug coming on they thought.  I had no headache - but was very very sick with roaring in my head.  I knew it was caused by the spinal tap.

On my second trip to the ER post spinal tap, I wasn't going to take "no" for an answer. I was in such bad shape I had to go by ambulance!   And I demanded a blood patch.  So they took me down again to the scene of the crime (the radiology department).  The radiologist was about ready to begin when it came to his attention that I did not complain of a headache.  He started to walk away saying, "You don't have a headache." to which I falsely responded:  "Oh, yes I do, and its the worst headache of my life!!!"  So then he did the procedure.  Within 20 minutes of receiving the blood patch I was feeling better and total relief came fast after that.

The point is, serious repercussions and misery following a spinal tap may not even involve a headache!!  And I think it's about time our doctors figured that out!

WAF