Questions about CT myelography

[Blue skies]

My DH now has 2 choices for his spinal leak - further 'blind' patching, (he's had 5 already) or CT myelography to try to find the exact site so his patch can be targeted.

His symptoms are not as extreme at the moment (but still debilitating) so he is wondering whether he should 'risk' the myelogram.

Have any of you had lasting symptoms from the procedure e.g .new leak from the myelo site? We feel we're peering into the unknown and worried about doing more harm than good, yet waiting and waiting (3 years, now) just doesn't seem to heal...

B

[Robbysmom5]

Hi B -
We have not done the poke for the myelogram - but understand what you are going through. There are several forum members who had lasting issues with their diagnostic pokes. But, there are even more that ended up healing their myelogram poke within normal time. We were prepared to do the poke/myelogram for Rob's testing because it is important to confirm location for treatment when "blind" blood patches fail. Some things to discuss with your doc:
- location of the new poke (not sure if there are any current stability issues with your husband's spine, but if this diag poke does not heal with EBPs, then it might as well be at the most sensible place if it needed a surgical seal/laminectomy)
- treatment of the new poke (will they give targeted EBPs? if headache worsens?)

The hope for you is that the current leak is high and perhaps has not been hit with your EBPs. Then targeted EBPs will seal the original leak (and the new one if it needs an EBP). I think this sounds like a good plan of yours.

Good luck in making your decision.

[forevan]

I have had 2 CT myelograms, first one was Nov. 07 and 2nd was Nov. 08. I did not have any problems with the 1st one however with the 2nd I did develop what we think was another acute leak (I had a directed fibrin glue patch after the myelogram was done to an area we saw on that myelogram that wasn't a clear looking leak but did look abnormal and therefore suspicious---it is possible that with the 1st, since I had a high volume blood patch done afterwards, that a "new" leak from CT may have healed quickly due to blood patch). While I had leak symptoms prior to the 2nd myelogram anyways, it was pretty clear that I had an acute leak because I did well for about 24 hrs post fibrin glue (no headache) but then seemed to rapidly develop very acute leak symptoms. I had a follow-up appt. with Dr. Schi the next day and they offered for me to stick around for a few days so they could do another blood patch or I could go home and wait it out to see if it resolved on it's own. We opted to go home (even though it was excruciating to fly home) b/c we were weary of more instrumentation. Luckily that leak seemed to heal on it's own about 1 week after I started having the more intense leak symtpoms and actually did pretty well headache wise until around 3 1/2 wks post glue (and around the time the glue get's reabsorbed by your body as it is not meant as a permanent patch) when I started experiencing my more chronic leak symptoms.

I opted next to pull the trigger and have surgery. I am glad I did b/c despite the fact my leak never imaged well it was rather large according to Dr. Sch and was completely obvious the second he opened me up (on myelogram it appeared to be more like a bubble that seeped/weeped fluid----and we thought he would maybe even have to have them hold breaths of anesthesia during surgery, which increases your spinal fluid pressure, and allows him to see the seeping), irregularily shaped (probably a rent from the attempted spinal portion of my combined spinal/epidural anesthesia from childbirth), and probably would have never healed on it's own or without surgical intervention (he both sutured it and patched it with muscle affixed with fibrin glue). And while I too had non-severe symptoms (seemed to lessen from when my leak was newer or perhaps I just learned to put up with it and somewhat function as much as I could???) they were very debillitating and interfered with my life to a good degree. Dr. Schi was shocked that I was not in more misery with the size of my leak. Wish my leak had imaged more clearly as I wish I would have just had surgery sooner but sometimes you just don't get to that point until you have exhausted the other methods of treatment.

Not sure what the advice of my post is as it can be a tough call and I do think the more instrumentation you have done, is something to consider (some here have been told post-surgery that their dura didn't look "normal" so you may be at an increased risk to not heal appropriately without knowing it). I can't remember if they "know" where his leak(s) are (and didn't see it on the new leaker roll call). Sorry if I just forgot (my memory isn't great these last 2 month) If not, they are going to have to do a CT at some point to know which area to target for surgery. If they do it now and pinpoint a leak, you can have the doc determine whether with how the leak looks whether fibrin glue or surgery would be recommended as the next step. Good luck!

Holly
P.S. Sorry for the ramble today

[sis2831]

My DH now has 2 choices for his spinal leak - further 'blind' patching, (he's had 5 already) or CT myelography to try to find the exact site so his patch can be targeted.

His symptoms are not as extreme at the moment (but still debilitating) so he is wondering whether he should 'risk' the myelogram.

Have any of you had lasting symptoms from the procedure e.g .new leak from the myelo site? We feel we're peering into the unknown and worried about doing more harm than good, yet waiting and waiting (3 years, now) just doesn't seem to heal...

B

My husband got a new leak from his myelogram, causing that THUNDERCLAP headache////does not mean that would happen with your DH....and keep in mind it was an INTERN, not that we knew that at time.....who did the injecting....and it was done under flouroscope???? SO, it is a chance you take,that is all i can say! But you run the same eisk, not as much, but still the blood patch can cause a leak. Michele

[Blue skies]

Thank you all for the replies. There's no easy answer, I guess. Any intervention or treatment involves risk and we just have to decide if we're prepared to take it....
B