Update on H- and a question

[meganew]

So the viral meningitis is pretty much out of his system- he’s been fever free for 48 hours! Yay! But the spinal headache is kicking his ass. They said to come back in in a few days if it didn’t go away and they’d do a blood patch. So, he’s been laying flat, crawling (yes crawling), and walking like Quasimodo around the house since it hurts so bad to stand or sit up. He hasn’t been able to work at all this week and he’s just asking when he can take his next Tylenol/Motrin every 20 minutes.

So today we went back in and the doc did another CT to rule something else out, that came back clear, so we’re waiting for the blood patch when they come in and say “JK! The needle we used for your spinal tap was so small that a blood patch would be irresponsible because it could do more harm than good! Sorry! Go home and ride it out!” Which. Wtf. I’m not about to demand my H get a procedure that the doctors don’t think would benefit him, but they presumably knew what sized needle they used when we left the hospital last time and told us to come in! We wasted an entire day of him being uncomfortable and giving more blood, more pokes, more scans- just to be told to take more fucking Tylenol!

So- anyone on here have a spinal headache resolve itself? How long did it take? Any tips for making it more bearable? Because we’re both going nuts and Vivi’s preschool graduation is on Friday and he’s so scared he’s going to miss it. : (

[knx9211]

I didn’t want to read and not respond. I know nothing about this, but I’m glad he’s on the mend but so sorry he’s having this. Hoping it passes soon.

[fivechickens]

Did they at least give something to possible help with the headache? Can anything help with a spinal headache?

I am so sorry.

[Pbj94]

Lurker here but I wanted to mention that caffeine can be quite helpful for spinal headaches. I’d also go back and tell them to call an anesthesiologist to place the blood patch. If possible, go during the day when anesthesia is fully staffed and someone on call isn’t debating if they need to come in.

[meganew]

Jun 19, 2019 19:43:17 GMT -5 fivechickens said:

Did they at least give something to possible help with the headache? Can anything help with a spinal headache?

I am so sorry.

I of course was out picking our daughter up from preschool when the doctor finally came in and relayed this news and discharged him, so he has no information beyond what they told him. I asked if he asked about other medicines? They didn’t say. Did they say what to do if you’re still in pain in a week? No. Did you ask what the next steps are? No. ::internal screaming::

And I get it, he’s in pain and he just wanted to get out of there at that point, but omg! Ask some questions!

[meganew]

Jun 19, 2019 19:47:35 GMT -5 Pbj94 said:

Lurker here but I wanted to mention that caffeine can be quite helpful for spinal headaches. I’d also go back and tell them to call an anesthesiologist to place the blood patch. If possible, go during the day when anesthesia is fully staffed and someone on call isn’t debating if they need to come in.

This was during the day- apparently they met with the anesthesiologist who did the spinal tap and they recommended against the blood patch. I just don’t understand why it was put out as a possibility if it wasn’t.

[Pbj94]

Jun 19, 2019 19:50:31 GMT -5 meganew said:

Jun 19, 2019 19:47:35 GMT -5 Pbj94 said:

Lurker here but I wanted to mention that caffeine can be quite helpful for spinal headaches. I’d also go back and tell them to call an anesthesiologist to place the blood patch. If possible, go during the day when anesthesia is fully staffed and someone on call isn’t debating if they need to come in.

This was during the day- apparently they met with the anesthesiologist who did the spinal tap and they recommended against the blood patch. I just don’t understand why it was put out as a possibility if it wasn’t.

Oh that’s the one who did the case initially? I’d ask for someone else or even go somewhere else for care. They shouldn’t have discharged him like this.

[Leeham Rimes]

I’m so sorry. I have no suggestions other than is it possible to get a second opinion?

[lauren170]

I think I had viral meningitis when I was a kid - not sure if they could officially diagnose it back then. I remember banging my head into walls the headaches we so bad. It took about 2 weeks to go away.

[lostrn]

Jun 19, 2019 19:55:12 GMT -5 Pbj94 said:

Jun 19, 2019 19:50:31 GMT -5 meganew said:

This was during the day- apparently they met with the anesthesiologist who did the spinal tap and they recommended against the blood patch. I just don’t understand why it was put out as a possibility if it wasn’t.

Oh that’s the one who did the case initially? I’d ask for someone else or even go somewhere else for care. They shouldn’t have discharged him like this.

Ditto. In the meantime, caffeine and laying flat whenever possible.

[tacoflavoredkisses]

I had a spinal headache from a spinal tap. I want to say it was 5-6 days from onset before it got better. But I was given a strong pain med (I think it was fioricet with codeine) because I suffered for 2 days before I went back to the doctor.

I deal with migraines but that was a truly horrifying experience.

[suzv]

I had a spinal headache after my epidural. I was miserable. I waited it out 4 days before I went to the ER for a blood patch. At that point my ears were ringing and i was getting no relief from pain meds and caffeine. Doctor said it was good I came in because it can eventually
Lead to chronic headaches. I hope he gets some relief soon. I’d get a second opinion.

[mae0111]

I'm with others that say to get a second opinion, or to just push for the blood patch.

I had a spinal headache after a botched epidural. The anesthesiologist used a needle that was too large and punctured several times. Her colleagues that examined my back afterward all but admitted that she screwed up. She talked me out of the blood patch, and after giving birth and with my head pounding, I trusted her. I waited a few weeks, and while it improved, it didn't go away. ("Improved" meant I could hold my head up and function slightly when upright.) Then it started to get worse again.

I wished I'd gone in sooner, because honestly, the relief was immediate. I stayed in the bed for 15 mins, and then I walked out of the hospital without a headache.

Wishing you both luck.

[isabel]

Does he have a regular doctor? Maybe you could call and they could help force the issue?

Or maybe just go back to the ER and tell them to at least fucking try it. Can a blood patch even hurt? Like why would it be irresponsible?

I'm so angry about this for both of you.

[Monica Geller]

I was wondering how he was doing! I can’t believe they’re giving you such a difficult time with getting relief!! I was going to suggest calling his PCP but if you don’t have one I’d call the hospital and get a patient advocate. Someone has to be able to help. I’m sorry he’s in such pain.

[isabel]

I'm going to tell you a really brief story, not to make this about me, but to point out that nurses and doctors aren't always right: I was scheduled for a c-section with DS2. I went into labor about 12 hours before my scheduled time. We went to the hospital, thinking they'd just go ahead and do the surgery. Well they didn't. We arrived at the hospital and I immediately asked for an epidural because I really just wanted to sleep (it was about midnight) and then wake up and have my surgery. The nurse refused. I couldn't get anyone to listen to me. DH and I both were not sure how to handle it, so we just rolled with it. I was in true labor for over 6 hours while these assholes did nothing. I was sobbing. It was fucking awful.

Fast forward to a few hours after they did the c-section... the head of the anesthesiology department came and apologized profusely to me and told me they would be opening a case with the staff that was treating me during that time. She said they never should have refused my request given the circumstances.

I just tell you that because sometimes doctors make dumb decisions. Or they just don't understand how a patient is feeling. In hindsight, I really wish my DH had stepped up and set them straight because I'm sure he could have done so. He just didn't realize that was really an option. You can advocate for your H. I think now is the time to do it. There is no good reason for him to be *crawling* around on the floor because he is in so much pain. That's insanity.

[meganew]

Thank you guys. We called his PCP today who told us to go back in through emergency, because otherwise we’d have to set up an appointment with neurology and that wouldn’t be immediate. Well now that we know they won’t do it at the hospital I think that will be our next step tomorrow. Hopefully they can get him in before the weekend for a second opinion. Or hopefully he wakes up each day feeling slightly better until he can finally sit up straight again. ::cries::

[chimera]

My platelets were too low to do a blood patch with mine. It was awful. The caffeine tabs do help. Staying flat as much as possible also helps. I get bad migraines, but this was hulk migraine on steroids. It was over a week before I could really function again.
I’d see about a second opinion on the patch.

[skidunks]

If he can tolerate it, he could do 2 extra strength Tylenol and 3 ibuprofen taken together. It’s hard on your stomach so make sure you eat beforehand.

[Deleted]

Second opinion is a good idea. Also Tylenol is a joke, is there a different pain medication he can take or get prescribed? Even ibuprofen is 100 times better than Tylenol imo.

[sparkythelawyer]

Go to a different emergency room.

And stop sending him on his own. He cannot advocate for himself well right now.

[meli554]

Get him the blood patch! I had spinal headaches after an epidural from my first kid. We tried medicine, caffeine, even an IV with fluids (?) and nothing helped other than laying flat, and there was no way I could be discharged to take care of a newborn.

Anyway, the blood patch was almost immediate relief. Like maybe 15-30 minutes I felt like a new woman. An anesthesiologist did mine.

[ssmjlm]

If you really want to know, how long it took for my DH to get over his spinal headaches, it was almost a month. It was coupled with a bad epidural for herniated discs in his neck. His spine doctor wouldn't do the blood patch. (We ended up filing with the state board b/c this doctor was so bad.)

He ended up addicted to vicodin because of the pain. It was awful. He would lay at home in the dark in pain on short term disability.

We didn't know any better because we trusted the medical people. Please continue to advocate for him.

[kath16]

Jun 19, 2019 22:59:51 GMT -5 sparkythelawyer said:

Go to a different emergency room.

And stop sending him on his own. He cannot advocate for himself well right now.

this. i don't know anything about spinal headaches or blood patches but they have to do SOMETHING for his pain. an IV of pain meds or something other than 'keep trying tylenol!" 

i'm hoping he hasn't been trying to drive himself, but either way, stay with him and advocate and make sure they know how debilitating his pain s.

[andi]

Jun 19, 2019 19:47:35 GMT -5 Pbj94 said:

Lurker here but I wanted to mention that caffeine can be quite helpful for spinal headaches. I’d also go back and tell them to call an anesthesiologist to place the blood patch. If possible, go during the day when anesthesia is fully staffed and someone on call isn’t debating if they need to come in.

Ditto. I had 2 blood patches in the hospital by an anesthesiologist and they didn't want to even do them because they said they rarely work. In my case they were right, neither one worked, so caffeine and tylenol and lying completely flat until it went away in about a week. I'm sorry he's going through all of this, it's completely miserable! I hope he's able to find some relief soon.

[litskispeciality]

I'm going to echo go to a different ER. My dad had a spinal tap last year, thankfully avoided the headache because they had him lay flat almost all day, but he ran a low grade fever that they wouldn't even treat with tyleonol. Then it turns out they didn't do the right testing and he ended up having a second one through a neurologist. Not the point, but you want proper treatment from the beginning. I know it's not easy to get time off of work and get a sitter, but either you or someone you trust has to go with him and advocate. Even if you have to be a jerk it's a serious matter. In the meantimes (((HUGS))).

[followyourarrow]

I'd go to a different ER if there's any in your area. I hope he gets answers and help today.

[isabel]

meganew, how’s your H?

[wildfloweragain]

I had a spinal headache from an epidural and for the first few days the receptionist would not let me through to a doctor or nurse because "those don't happen anymore, so that's not it "

Someone told me to drink a lot of water. I just gave birth and was breastfeeding, so I thought I was chugging water.

But then I started really chugging a lot of water and it did help a lot.

At the follow up appt for the baby I got that Dr. To get me in to see my Dr. They said if it doesn't repair itself in a week (from when it started) they'd do a blood patch. It did heal itself at right about one week. Lying flat and chugging a lot of water helped.

[meganew]

Jun 22, 2019 10:48:44 GMT -5 isabel said:

meganew, how’s your H?

He’s getting better every day- but the progress is slow. At least to me. It’s now been one week since the spinal tap and he was able to come to the park with us yesterday, but he mostly just laid on the blanket the whole time. He still needs lots of breaks and rest and he’s still in pain, but apparently this could still be part of the meningitis, too. We have an appointment with a neurologist for this week so hopefully they can give us some more answers if he’s still experiencing the head aches, but he’s saying he feels much better than he did a few days ago. So hopefully he keeps getting a bit better every day!