Rocky Mountain Spotted Fever and Spinal Tap Issues

If the doctors say it can take several weeks to get better then I wouldn't worry. Just because he had to have a blood patch does not mean the tap was "botched". Having a blood patch after a tap is very common. I do several taps a week at work and that is one of the first things I tell my patients that can happen. I have also personally had to have a patch done myself after a tap. Also, how did you figure out what he had without proper tests? I would hope you didn't self diagnose by going onto the internet.

I would suggest waiting the few weeks and seeing how he feels then.

S.

Boy, you and your husband have been through a lot! I can not imagine how frustrating it must be for both of you. My husband also had a CSF leak that led to the debilitating headaches. The solution for him was to lay flat for at least 24 hours. Only get up for bathroom breaks. It may take longer 24 hours but the important thing was to lay flat. I hope this works for you too.
E. Moss
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Cultural Care Au Pair, Baltimore
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I have had about 4 spinal taps since 2003 to figure out the severe headaches I keeping suffering from. The latest tap I received resulted in a spinal headache. To cure this I received a blood patch. I was told it would help THAT headache, but not my history of them. Oddly enough, it not only cured that particular headache, but also gave me a year of relief from the other headaches I get. So that leaves ME with the question, if I were to get the blood patch again, would it give me at least another year of relief. Let me know what you found out about other people and their experience with blood patches (if it might pertain to my situation). Thanks.

My spinal tap leak so badly that I could not stand up, and they kept me in the hospital for 5 days because my blood pressure was so low. They finally sent me up, in a wheel chair because I still couldn't stand up. I went to my doctor when he got back from vacation 5 days later and there was a lump on my back of fluid. If I laid down, the headaches were better, because the pressure prevented some leaking. I got the blood patch and within ~8 hrs, I felt better and by the next day I felt 75% better, though you still need to lay in bed to make sure the patch doesn't come off. Now, he could still have the fever and feel bad, but the blood patch should have cured the headaches quickly. It's much harder to screw up a blood patch, since they watch it go in. Good luck and feel better!!

Hi V.,

I had a blood patch done about 12 years ago because headaches were so bad (indeed very debilitating) I also had a lot of back pain. Unfortunately for me the blood patch didn't work (it didn't fill the space completely!) and I continued to have constant hedaches and back pain for several weeks. Overtime, the pain eased some but I still have lots of back pain and chronic migraines - though I was told it is probably due to the original neck/back injury I sustained that caused the testing in the first place. I would definitely look into where the "botch" occured - if there was any negligence or not. I realize it is a very sensitive procedure, but precautions need to be taken so patients don't continue to suffer through this. If you have any questions, you can contact me at ____@____.com Luck!!

Hi V.. I had the Spinal Tap leak and associated headaches. It was horrible - I couldn't sit or stand for two weeks and it took three for them to go away completely. It took awhile for my doctors to figure out what had happened (ah, HMOs) so by the time they would have done the patch it was almost healed. My doctor recommended caffeine to help with the healing. I drank a lot of caffeinated water and it did seem to help things - you might try that.

I hope he's up and feeling better soon!

V., I don't know anything about RMSF but I work as a neuroscience PA so I do know about spinal headaches, CSF leaks, and meningitis. First, any type of meningitis will cause headaches for a little while, even if he is being treated. Secondly, spinal headaches from a lumbar puncture or subsequent CSF leak are usually positional. They are worse when sitting up or standing and have associated nausea/vomiting and better when laying flat. If your husband's headaches get significantly better when he is flat in bed, he may still have the leak. If he just has persistant headaches no matter what, I would think that is from the meningitis. Either way, I would strongly suggest following up with a neurologist asap.
As for help with the kids and maintaining your sanity, I would enlist any family and friends you have in the area to help you. If you don't have any, Care.com is a good website to find a reliable babysitter, and they do background checks as well. Even if you got someone to come in for a few hours while you are home, just so you could relax or get some chores done, that might help.
Good luck to you!
T.

I am sorry that you are going through so much. I hope this can help..

My sister had RMSF a few years ago. They thought it was mono, but after a few other cases were discovered in the area they realized what it was. After her hospital visit and surgery (she developed a swollen gland from it)it was a few months before she was going to school for the whole day again, and a full year before she was back to regular energy levels. I know it sounds awful, hopefully your husbands was caught before hers so that the recovery is shorter.

And again not me, but my Aunt had a CSF leak. Hers was a while ago, so hopefully treatments have improved now. She had frequent headaches for a couple years, which she attributes to the CSF leak.

Best of luck, and hopefully your husband's recovery is quicker than my family's.