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Can anyone help me please? I think I have a CSF leak from todays inj's??

EMTgoneNUTZEEMTgoneNUTZ Posts: 321
edited 06/11/2012 - 8:29 AM in Spinal Injections
I had my regular 8-12 weeks injections today only he did bilateral this time instead of just the left side because of more right sided pain recently.

Anyway, here's the deal. Immediately when in recovery I began to develop a massive headache-I was bawling and squeezing my head with both arms it was absolutely awful. I told the nurse and she talked to the Dr and came back and gave me a shot in the butt of Toradol and said it should work w/i 1 hour, if not I should call (naturally that was after they closed..how convenient).

Anyway, I had to go to the pharmacy to get my meds because they changed me to Methadone and Dilaudid (no more MS Contin or Oxycodone), so while there the pharmacist who knows me by name by now asked me what was up cause he could tell how much pain I was in. I explained it to him and he told me that the Toradol should've helped by then (it had been 1/2 hour at that point) and he recommended I go to the ER, which I didn't want to do, so he then told me to go home and take a methadone & dilaudid and that if after 1/2 hour it wasn't any better or if it was worse that I really needed to go to the ER because it could be a CSF leak and I could need emergency surgery or blood patch or something?

It feels like my head is about to explode my brains thru my ears and my eyes right out...yet it's like it's in a vice at the same time. It "eases" slightly when I lay down, but when I sit or stand it gets soooooo much worse again. Now I'm starting to feel dizzy and shake because I've been sitting up long enough to get on here and type this to see what you guys think.

I know there's probably posts about this on here and I will do a search for them, but I thought I might get more accurate (for me) responses by asking you guys if anyone has experienced this or knows about it, etc. I can't take it much more....I seriously am in pain. The meningitis headache I had for 18 frickin days back in 2003 was NOTHING compared to this and that was bad! I have NEVER had a headache like this ever and I get migraines quite often. I can't stand noise at all and am VERY light sensitive. I've also taken 800mg of ibuprofen.

Do I really have to go to the ER? If I do wait, how long should I wait-meaning what's the longest possible before I could like die or something? Cause I seriously feel like I'm dying but I've got kids and all that....

Any advice, experiences, etc would be GREATLY appreciated! (and yes I'm well aware that noone can diagnose me...I'm a Paramedic and I'm not even diagnosing myself LOL) I just need info, reassurance, just something...cause I'm freaking out here...

Thanks guys so much....luv ya all!


  • You need to go to the ER, the sooner the better. This happened to me after an SCS trial and it was horrible. All I could do is lay totally flat for the headache to be bearable. I couldn't even raise my head without feeling like my head was hit by a brick. Then I would get nauseated and have projectile vomiting. Throwing up is the worst when your back hurts- I'd rather give birth again.

    I went to the ER and they performed a blood patch because I was leaking spinal fluid. They did perform a spinal tap to see if I had an infection, I guess. I felt immediately better, but the next morning I was screwed up again with the same problem. So, I went back and this time my doctor pulled out the leads and performed another blood patch and I was sent home. I told them I still had a headache and they said it would get better. When I got home I puked again and spent the rest of the week recovering from this mess. I felt like I was away at sea for a year. I was so dizzy and my hearing was diminished in my left ear. Well, it took 2 weeks for all of this to clear. If it went any longer, they would have had to operate to repair that tear.

    So please go to the ER and get this taken care of. This is a serious matter and the pressure in the CFS fluid is too low and it spells trouble. Let us know how you are and hopefully that awful headache will be long gone. Take care EMT
  • Yes, I concur w/ Meydey...& I sent you a PM.

    I hope you are NOT reading this & are in the ER..a CFS leak is VERY serious (check out my "signature").

    Let us know how you're doing! Don't neglect this!!!

  • Thank you both for your responses and your caring! It's nearly 3 am and I'm so pumped full of stuff that I'm gonna go try to sleep while I can, but wanted to let you know that I did go in, and I am home...long story short, there is no night staff to run the MRI and the ER bitch, oops I mean Doc, said to me "there is absolutely no way this headache can be related to your injections today, nor do I believe it is as bad as you are telling me"....In the 4 hours I was there I had 8 vials of blood drawn, a CT scan of the head, a shot in the butt of dilaudid (after 2 hours!), a shot in the other side of the butt of phenergen (with the dilaudid), a shot in one thigh of benedryl and a shot in the other thigh of solumedrol (those were another hour after the first two shots). My pain is now down to a 9/10 instead of a 10/10, but as soon as I got home I took my dose of methadone (10mg 4 x p/day is the script he gave me and this was my first day starting on it) and a wimpy 5/325 norco, along with 1 of my xanax's....so that's why I think I might be able to get a little bit of sleep. I've at least been able to stop crying for the time being so at least there's that.

    In the morning I will call every doctor I have to until I can get an order for a stat MRI because I am still concerned that it IS a spinal headache...I don't care what she said....

    I'll update again tomorrow...again, thanks for the concern & know that I did take your advice and go in (isn't it always interesting when your Dr tells you to go to the ER and the ER tells you to see your Dr?) Always the run around....now ya know why I didn't wanna go...and of course they didn't even do an IV and I can tell you that I'm dehydrated-gee, ya think that might have even had a partial chance of easing some of my pain had they just run a bag of NS thru me, and maybe even helped those meds they gave me IM work better if they'd done them IV instead? Oh well....it's done now-on to tomorrow. Outta be fun if I still have the headache, cause the day after injections is always the first of 3 miserable days with my back/leg....I pray this headache thing is a freak thing that's gone when I wake up in 2 1/2 hours!

    Sorry, got off on a tangent there....anyhoo, I'll get on later probably and let you know the rest and how things are going, etc. Thanks again....I really do appreciate it! =)

    Hope you both were able to sleep well! Have a nice day everyone!

  • The IV meds work quicker. But the IM meds work longer and slower usually over 4 hours so more steady keel. But for instant relief IV. Alot of ERS can't even move for the pain meds without Dr. I'm sorry you had to go through that. I work in an ER not that that matters since I've been away 1 year. I'm sorry you still have the headach. I'm nervous about ESIs next 5th one April 4th. I hope you're doing better. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • First, thanks Charry for your explanation...I "know" about meds, but didn't think about the longer duration of the IM over IV, ya know? I've been out of the field for almost 6 years now so I'm quite rusty myself...you seem pretty up on it still =) I wish you luck with your next set.

    So as to not alarm anyone who's having first ESI's....just know that I've been having these done for 3 years now and I have NEVER had any kind of a headache or any bad complications, so please don't take this experience verbatim-plus I don't have any medical "proof" yet that this is even from the ESI's, but I do suspect so. They do help me with my pain, they just don't last more than a week-10 days anymore-but I still endure them because it's a week that I get to enjoy my children and life a little bit more than "usual". If you've not tried them and are offered the option, please do...but personally, I always recommend sedation. That, however, is a personal choice for each of us to make.

    Another update for everyone...still haven't slept-head pain is about 19 hours now with very minimal relief for about an hour after I last posted. Put in a call to the PM Doc but he is in his office that's an hour away today so the RN said she would put in a message to him and hoped to have a reply asap...I hope I'm not left here all day waiting! I did tell her that if he wants I'm sure I can call my PCP, but that I know the PCP is going to want me to check with PM Doc first since this began in recovery following yesterdays injections. She said she'd try to get an answer quickly for me so I can try to get something going this morning.

    I just can't believe how bad this hurts and that it's not letting up. It's very reminiscent of when I had viral meningitis in 2003 except this pain is worse, believe it or not! Plus I don't have the "flu achy" symptoms and stiff neck that accompanied that. That was an 18 day headache from hell-anyone who's ever had meningitis can understand! I so hope I don't have to deal with this all weekend! And I'm still baffled at what else it could possibly be if not a "spinal headache"? Odd coincidence, wouldn't it be? But at least the head CT was clear so I know it's not like a brain bleed or anything like that.

    Anyway, I'll post again as I find out something-thanks again for your concern everyone and I do hope you're all able to enjoy the day and weekend!
  • Hi Tanya,

    I just had to come out of "lurker-mode" when I saw you had been posting. Always used to love your posts when I first found this site and have missed them. I felt horrible when I read your post a few months ago in - I think - the Depression forum and I really hope you're doing better (other than this horrible set-back). I'm in Michigan too - Okemos. Have you been enjoying the weather? Suppose to be in the 50's this weekend. Woo-hoo!

    I have never had a headache from my shots and I did have bilateral ( 10! ) before. They gave me a shot of something right after - probably what you got - and told me it would make me feel awesome for the rest of the day and it did absolutely nothing. I gave it a few hours and then just ended up taking my own meds. Speaking of which - are you happy about your new meds? Did they seem to help your back pain better at all yesterday and today?

    Hoping your headache gets better and that Spring is good to you. Oh - and if you do find out you needed a blood patch - I really do hope you go back to that ER and blast them for that. They need to be told.

    See ya,

  • I am mortified at your treatment at the ER. How can it NOT be a spinal headache if you had an ESI prior to this? Also it is listed as a warning on the discharge paper and you need to seek help for this. I can't believe this s&%t.

    This is how you should have been treated- I went in to triage and I was crying because I couldn't sit and have my head raised. I told her I had internal leads from an SCS trial and my headache started the morning after. She asked me a little about the trial and got the number to the doctor who installed it. Right away I was wheeled back and taken to a room. Five minutes later the doctor arrived and after I described my symptoms he said, You have a spinal headache and I'm giving you medication to get you comfortable; I'm also paging an Anesthiologist who can deal with this. I was like huh? Apparently they can do blood patches and are the ones that deal with CFS leaks. He came down ASAP after I've been given IV Morphine and had my blood drawn, and he had to sit me up to perform the blood patch and spinal tap. My headache went away and I was told to follow up with my regular doctor in 2 days. It didn't go that way because my headache came back the following morning.

    If you can't get a hold of your doctor ASAP, go back to the ER or go to another one with less idiots. TELL them you have a spinal headache that way they don't screw around with you and get you the desperately needed care. It is easy to diagnose and you don't really need a CT-I didn't have one. If your head hurts like bloody hell when you raise it, it's a spinal headache. There is also nausea, vomiting, dizzyness, and diminished hearing accompanying it. Don't take no for an answer, and demand the charge nurse if things aren't going the way they should.

    Please don't wait too long, CFS leaks aren't nothing to sniff at and they are dangerous. If you can't take yourself, call an ambulance.
  • I don't understand why the PM didn't do a bloodpatch there in recovery room? I had a wicked headache and it ended up being a sinus infection. I would want antibiotics at this point. Not hearing from you Tanya by now hope you're getting some pain relief. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Tanya,

    Geez, it really bugs me how crazy things were at the ER, especially as you were told to go there!!! I've had a spinal headache and didn't realize it- just thought I had the mother of all migranes for a few days. I actually waited 5 DAYS, believe it or not! Finally I was at the point where I could no longer put my head down on my pillow it hurt so bad, so I checked the sheet and had all the symptoms. My doctor had me in first thing in the morning for a blood patch, which was just how Meyday discribed.

    It worries me that you had a headache so quickly...and if you're still hurting extremely bad now with all the drugs in you and not snoozing, it is even more nerve-wracking! Can you possibly call your doctor's office now? I know my pain clinic doc's phone refers after-hour problems to either call later or if it's an emergency, go to the ER. That really doesn't leave you much help if in the same conditions.

    Hey, just thought of something- after I had called my doctor and after the patch, I was told to lay down as much as I can and drink a lot of caffeine, like Mountain Dew. Laying down helps close the hole, and somehow I think the caffeine helps the headache. I wish I could help more. Also, I too have missed your posts, your friendliness and openess stood out to me on both this board and one other, and I'm happy you posted even though it's not the best day. Take good care.

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