LauraL840
04-30-2007, 05:50 PM
I bet you get LOOONG posts like this all the time LOL ... I'm going to TRY and make a long story short and leave out all the DRAMA, but I'd love to hear opinions and advice once you've read it!
July 11, 2003
DH contracts viral meningitis on vacation in No VA. Confirmed by LP and labs as 'enterovirus' through ER. Expected recovery 10-14 days. Hospitalized next day for 4 days, in bed for 2 weeks, too weak to make 5 hour drive home. Has 'meningitis' headache constantly for 2.5 months then has an HOUR without headache. Takes over 3.5 months before headache resolves. We later determine he likely had encephalitis (had total memory loss of 3 weeks and short term memory loss for 4 months or longer), AND a CSF leak from his LP site.
September 1, 2006
DH has headache. Says it feels the 'same' as the headache he had 3 years ago and goes to bed early. Next day it's worse (add low-grade fever and nuchal rigidity), I get online to review his symptoms and it's back to the ER with what looks like meningitis AGAIN! All tests reveal he does have meningitis again, however it's not classic viral, aeseptic or bacterial. It turns out to be r. rickettsia bacteria from a tick bite. Diagnosis - bacterial meningitis caused by Rocky Mountain Spotted Fever. This confirmed by LP and labs (titer for RMSF). Follow up with ID doc (Infectious Diseases) who says after his 10 day course of antibiotics he should be good as new. 3 weeks later he still has the meningitis headache :(
We go for a blood patch and he gets a little improvement, but not complete relief. The EPB was NOT done with flouroscopy (of course we didn't know anything about anything at the time, so we didn't know this wouldn't be 'as' effective). When he didn't get total relief we assumed (please, no jokes lol) he didn't have a leak, plus it was so darn painful (like a horse kicked him in the middle of the back) that he had no desire to go for another one. Since it took him so long to recover from meningitis 3 years earlier, we figured it was just going to take some time.
By DECEMBER his headaches were worsening and 'new' symptoms were appearing (visual disturbances, ringing in ears) and we became concerned that he'd suffered damage from the rmsf disease process to his brain. RMSF causes vasculitis, which is why there's a spotted rash, and he never had any of the classic symptoms so we were concerned that the vasculitis had damaged his brain. We ended up at a neuro (1/07) who was hyperfocused on this being 'something' else not related to his illness plus rebound from months of tylenol, tramadol, and ibuprofen ... so the idiot prescribes indomethicin and some other analgesic pain med, both of which ALSO cause rebound! I begged for an MRI w/ contrast and he sent us off for that (2/07).
We never went back to see him and called UNC neuro for an appt, had to get referred in and seen immediately! MRI showed damage, but that damage would not be causing his symptoms and is likely benign (although we won't know until we clear this darn headache up). Another LP performed to rule out chronic meningitis, Lyme's disease, and coinfection of other tick-borne diseases all came back clear, however opening LP pressure was 15 mm Water (I think it was H20 and not mmHg). So he's low pressure and the whole 'it might be a leak' theory pops right back into play.
Forward to now.... He had another EBP last Friday, VERY VERY slow gain of some relief occurred Friday (pain scale that day started at 6, was a 5 by PM), a little more gain Saturday although headache was still up and down (5 to 4 to 5 to 4 to 3 by days end), Sunday (2 to 3 to 2 to a .5 -lowest since 9/06 and in a small area at back of skull), Monday ... the whole darn thing blew within two hours of him moving about the house. Went from a 1 to a 9 by Tuesday night!!!!! Now he's leveled off a bit between 2's and 3's which is a little better than pre-patch. The NEURO had to CONVINCE the anesthesiologist to patch him, the anesth. was NOT convinced that DH has a leak, yet no one really wants to do a myelogram to find out for sure.
We need a 'game plan'. I need help finding out what's the best plan for us. Here's what I am convinced of:
My DH's dura is slow to heal. First LP in '03 took about 4 months for complete healing and likely caused scar tissue to build up. This puts him at a 10% risk of developing meningitis again.... Second LP in '06 is done while he's infectious and dura is under increased pressure from meningitis infection and when the doc 'popped' him, his dura tore under pressure. So now it's 8 months later and he's still leaking, still greatly increased risk for meningitis (which he's now survived twice), and there's scar tissue that isn't helping matters.....
I don't really want him to have another LP for myelogram but for crying out loud, we need resolution! He's 49, we have 3 kids under 8 who are worried constantly for their daddy, and on July 1 he becomes police chief of a medium sized department of 160 +/- people. We can't go endless rounds of EPB's if they aren't going to work. We're praying this next one brings complete healing, but it can't if the blood's not there long enough. Anesth. is Prof and Dept Chair at UNC and hasn't used fibrin, so I'm not sure if we'd even be a candidate for that. Plus I'm not sure he's 'sold out' on the leak theory as it seems everyone he treats is 10 days post LP or epidural puncture....:rolleyes:
Thinking we should ask for a spinal MRI don't know if gadnolinium will help or not, to try and go least invasive to most invasive for determining leak size, but do any of you know if any of the 'studies' can determine the 'size' of the dural opening? I've read scads of studies, but obviously my dh is very ATYPICAL ... (darn it, if you have to be 'good' at something, could you have picked ANYTHING else!)
Advice, opinions, anything????
Thanks! I'm sorry this is so long, but I think it's (mostly) pertinent stuff!
SIGN ME ------->
Laura
(Weary Wife of Leaky Lover..... )
July 11, 2003
DH contracts viral meningitis on vacation in No VA. Confirmed by LP and labs as 'enterovirus' through ER. Expected recovery 10-14 days. Hospitalized next day for 4 days, in bed for 2 weeks, too weak to make 5 hour drive home. Has 'meningitis' headache constantly for 2.5 months then has an HOUR without headache. Takes over 3.5 months before headache resolves. We later determine he likely had encephalitis (had total memory loss of 3 weeks and short term memory loss for 4 months or longer), AND a CSF leak from his LP site.
September 1, 2006
DH has headache. Says it feels the 'same' as the headache he had 3 years ago and goes to bed early. Next day it's worse (add low-grade fever and nuchal rigidity), I get online to review his symptoms and it's back to the ER with what looks like meningitis AGAIN! All tests reveal he does have meningitis again, however it's not classic viral, aeseptic or bacterial. It turns out to be r. rickettsia bacteria from a tick bite. Diagnosis - bacterial meningitis caused by Rocky Mountain Spotted Fever. This confirmed by LP and labs (titer for RMSF). Follow up with ID doc (Infectious Diseases) who says after his 10 day course of antibiotics he should be good as new. 3 weeks later he still has the meningitis headache :(
We go for a blood patch and he gets a little improvement, but not complete relief. The EPB was NOT done with flouroscopy (of course we didn't know anything about anything at the time, so we didn't know this wouldn't be 'as' effective). When he didn't get total relief we assumed (please, no jokes lol) he didn't have a leak, plus it was so darn painful (like a horse kicked him in the middle of the back) that he had no desire to go for another one. Since it took him so long to recover from meningitis 3 years earlier, we figured it was just going to take some time.
By DECEMBER his headaches were worsening and 'new' symptoms were appearing (visual disturbances, ringing in ears) and we became concerned that he'd suffered damage from the rmsf disease process to his brain. RMSF causes vasculitis, which is why there's a spotted rash, and he never had any of the classic symptoms so we were concerned that the vasculitis had damaged his brain. We ended up at a neuro (1/07) who was hyperfocused on this being 'something' else not related to his illness plus rebound from months of tylenol, tramadol, and ibuprofen ... so the idiot prescribes indomethicin and some other analgesic pain med, both of which ALSO cause rebound! I begged for an MRI w/ contrast and he sent us off for that (2/07).
We never went back to see him and called UNC neuro for an appt, had to get referred in and seen immediately! MRI showed damage, but that damage would not be causing his symptoms and is likely benign (although we won't know until we clear this darn headache up). Another LP performed to rule out chronic meningitis, Lyme's disease, and coinfection of other tick-borne diseases all came back clear, however opening LP pressure was 15 mm Water (I think it was H20 and not mmHg). So he's low pressure and the whole 'it might be a leak' theory pops right back into play.
Forward to now.... He had another EBP last Friday, VERY VERY slow gain of some relief occurred Friday (pain scale that day started at 6, was a 5 by PM), a little more gain Saturday although headache was still up and down (5 to 4 to 5 to 4 to 3 by days end), Sunday (2 to 3 to 2 to a .5 -lowest since 9/06 and in a small area at back of skull), Monday ... the whole darn thing blew within two hours of him moving about the house. Went from a 1 to a 9 by Tuesday night!!!!! Now he's leveled off a bit between 2's and 3's which is a little better than pre-patch. The NEURO had to CONVINCE the anesthesiologist to patch him, the anesth. was NOT convinced that DH has a leak, yet no one really wants to do a myelogram to find out for sure.
We need a 'game plan'. I need help finding out what's the best plan for us. Here's what I am convinced of:
My DH's dura is slow to heal. First LP in '03 took about 4 months for complete healing and likely caused scar tissue to build up. This puts him at a 10% risk of developing meningitis again.... Second LP in '06 is done while he's infectious and dura is under increased pressure from meningitis infection and when the doc 'popped' him, his dura tore under pressure. So now it's 8 months later and he's still leaking, still greatly increased risk for meningitis (which he's now survived twice), and there's scar tissue that isn't helping matters.....
I don't really want him to have another LP for myelogram but for crying out loud, we need resolution! He's 49, we have 3 kids under 8 who are worried constantly for their daddy, and on July 1 he becomes police chief of a medium sized department of 160 +/- people. We can't go endless rounds of EPB's if they aren't going to work. We're praying this next one brings complete healing, but it can't if the blood's not there long enough. Anesth. is Prof and Dept Chair at UNC and hasn't used fibrin, so I'm not sure if we'd even be a candidate for that. Plus I'm not sure he's 'sold out' on the leak theory as it seems everyone he treats is 10 days post LP or epidural puncture....:rolleyes:
Thinking we should ask for a spinal MRI don't know if gadnolinium will help or not, to try and go least invasive to most invasive for determining leak size, but do any of you know if any of the 'studies' can determine the 'size' of the dural opening? I've read scads of studies, but obviously my dh is very ATYPICAL ... (darn it, if you have to be 'good' at something, could you have picked ANYTHING else!)
Advice, opinions, anything????
Thanks! I'm sorry this is so long, but I think it's (mostly) pertinent stuff!
SIGN ME ------->
Laura
(Weary Wife of Leaky Lover..... )