Dh's 2nd / 3rd EBP Today!

[LauraL840]

We'd love all the prayers you all can muster! My Dh is having his second (recent) EBP today at 11 EST. It's actually his 3rd, but the first was 9 months ago, so we don't really count it since it was SO long ago!

We're hoping to get complete relief from symptoms with this process!

Thank you all for your encouragement, articles, messages, help, etc!

We now have a 'plan' for what we will allow (procedurally) and what we will pursue thanks to all your input and advice!

Will write more later when I have time, but don't look for me anytime real soon! LOL

Laura
<------ married to a leaky man!

[Tamaretta]

We are definitely praying! Let us know how the patient is doing.....

[guineapig]

Laura,
do follow up w/ how the procedure went. how many ccs and location(s) any adverse symptoms (eg leg neuropathies from nerve roots being squeezed by blood) which hospital?
all the best
guineapig

[Concerned Gal]

We are all with you!!!!


Sorry I haven't been around lately. Been having problems accessing the website.

Keep us updated

[LauraL840]

The first EBP 3 weeks ago went like this: 20 cc's between L3 & L4 produced MUCH pressure/discomfort. He had some improvement of symptoms, not total relief.

Yesterday's EBP ... when they injected the very first CC, he said it felt like it did when they reached '20' last time :( Doc managed to get only 7 cc's in this time. They also (per my request TWICE) finally gave him Fentanyl post procedure for pain! Doc thinks there's still some clotting/patch effect from first EBP, has great concern about amount of pain and radiating pain down R leg, concern with doing additional damage, etc. Would only do another EBP (dh says they're NEVER doing that again...) if neuro really feels it would benefit. Is open to using fibrin or other 'foreign' aide if, through consultation with other specialists, if they feel it will benefit, but he's never personally used it. He's never had a case like this and he's been around a while (KWIM?). We're in NC, we're being seen at UNC Chapel Hill and in our area of the country, UNC CH is a HIGHLY regarded university hospital. He's open to consulting with other doctors around the country so now I've got to find the one's who are most likely going to have the information we need! He wants us to follow up with our neuro, so we go Friday, and he also wants to consult with spinal surgeon. We're hoping, in meantime, that this produces total relief, but it's 'early' as it goes for EBPs for DH and so far it seems to have a little effect, but backpain is paramount to anything else right now and DH is taking nothing for pain relief so it's a miserable thing to watch.

He reports this morning that the pain is better, his headache is low and pain in back is better, but he's still horizontal!

I've likely left something out, but that's all my fried brain can muster. I'm taking 'Leakies' 3 leakless offspring to a friends house all day so that we can give him some peace and quiet and space to heal! So it will be later before I can update again.

Does anyone know if Mokri or Schievak (I probably butchered the spelling on these, but it's from memory and that ain't firing too well right now!) would consult on a non-spontaneous leakers case?

THANKS

Weary Wife ;)

[guineapig]

Laura,

i take it from the immediacy of neuropathies during last blood patch, that no fluoroscopy was used? of my six ebps, 5 went swell, each high volume (which was necessary and good for me) all of which were done with fluoroscopy. the 6th intended only to patch the catheter hole, no fluoroscopy during the ebp, went poorly, very low cc -5- and pain/numbness down a leg which lasted a good day for each cc.

fluoroscopy during ebp is not only used so the anesthesiologist doesn't inject the blood to close or onto a root nerve, perform an LP, it is also, i suppose amongst other reasons, used to place the tip of the needle in the best location, proximate to the leak site, which can receive the greatest amount of blood. so even if your doc is experienced in ebps, i would wonder if w/out fluoroscopy she could place in the best location for the conditions of the particular leaker.

note on spinal surgeons: i was informed by one that they are most responsible of all surgeons for causing csf leaks due to surgery. i would place the dr's who perform LPs up there too (hah, hah for the obvious).

away with your kids from your leaking husband. ah, your own medicine. use it. use it often. but with three kids, don't see how you could relieve stress in that situation.

last i know of schievink's office, they say he will consult. check for prices! (come on, laugh a little). seriously, his office policy on that changes. i think it usually entails sending him all the usual documents and images, then follow up with Cherry (she's so sweet) his admin assistant. if you don't see him, distance consultation is a good idea. if he stays true to form, he'll give you a good amount of time; prepare with your questions and be familiar with the medical details of your husband's leaky past.

ahhhhhh, leaking, who would of thought of that?

[LauraL840]

Guinea ... flouro was used in both EBP's :(

Still a little unsure why this one was not as successful. Doc thinks it's 'possible' DH still has some clot left from previous EBP, but I'm very doubtful. Having a 'little' medical background makes me a BIG skeptic ... blood is a big fat irritant to tissue so when you have blood introduced into a space it's not normally found, the body doesn't really want it hanging around. Hence the pain from a simple bruise. A SMALL simple bruise is completely gone in a matter of a few days to a week. A VERY large bruise doesn't take much longer to go away, although surrounding tissue can be irritated for a while longer.... anyway, I'm on a tangent. I just think it's more likely that the anesthesiologist ran into a complication OTHER than 'lingering' clot from a previous EBP that was done 25 days prior to this one. He did say that even with flouro and xray imaging that they are unable to determine if surrounding tissue contains 'clotted' material or other soft tissue material.

See the Neuro tomorrow. Thinking that it's time for another MRI with gadolinium of head AND for his first of his spine. Would like to see a comparison done with MRI from February to see if there's any changes one way or another to meninges. Also am hopeful that spinal MRI can sort out any abnormalities that might explain why we aren't having resolution.

Right now we are totally against myelography or any other invasive-to-dura testing as we feel we've established a 'history' of leak and slow-to-heal membrane and there's no real benefit to a myelogram in his case. We KNOW where his leak 'should' be. We've been 'told' that it's pretty unlikely that he'd have developed a spontaneous leak from a different site (although I'm not convinced they'd really know for sure on that one since causes of SIH are still relatively uncertain). So as it stands, he either has a larger tear than they 'think' he should have following an LP, or something else is complicating issues, or he does have a leak elsewhere.

Rambling ... grasping at straws..... it's hard to watch someone you love be in constant pain for so long and there's nothing you can do to make it better ... and it's hard to live with someone you love who's in pain and a pain to live with because of it! LOL

We're on the East Coast, so anything between 'us' and Dr. Schievink will really be between DH's primary neuro and Dr. Schievink. I don't give a rat's gluteous max how much it costs.... we've already exceeded several thousands of dollars of bills, so it can't be much! LOL

Gotta love modern medicine, modern health care and the evolution of modern lawyers all running around in a modern 'system'.....
<----- cynic

[eman]

Does the blood truly clot? My understanding was that it is absorbed very quickly. Scaring takes weeks to months, if I remember correctly. It makes me wonder. I see it more like the blood creates a temporary intracranial pressure increase, allowing the dura to actually snap closed, like a rubberband being released. Wouter told me people who don't heal from punctures/spontaneous leaks have a less elastic dura that doesn't snap shut like it should. In my case, for a trauma leak to reoccur would suggest that my dura never truly closed, even though I was completely asymptomatic for 8 mo. My thoughts, nobody really knows how/why EBP work, or don't.

eman