Hyrocephalus & Syringomyelia

[sumairakhan]

I have both syringomyelia (including syringobulbia) and hydrocephalus from childhood. I am 46 now. I have cerebellar dysfunction, can hardly walk now, have difficult deglutition with frequent small aspirations.
A ventriculo-peritoneal medium flow shunt failed to bring an improvement 6 years back. I have been given the opinion of third ventriculostomy as a shunt in spinal syrinx is thought not to be a good option. I want to ask if this surgery is performed for this complex neurosurgical condition at your center ?

[selmaS]

I answered ur post in the chiari forum....again my deepest sympathies for your loss.


"selma"

[calinden44]

My daughter passed away at 18 months from a fall where she it her head. She had a subdural hematoma, which they fixed, and while waiting for her BP to come back up, to my horror, they could not get it to return. We were completely unaware there was anything wrong with her as her pediatrician had sent her for a CT scan at 9 months due to a rapid growth in her head circumference. the result was benign hydrocephalus, bilateral hydrocephalus of the subarachnoid space. They told us it would resolve by age 2, and not to be hyper or follow up as it would just miraculously go away. It was the numebr one children's hospital in Texas, so I listened like an idiot.
When she hit her head while trying to walk, they believed she seized and that the subdural hematome was intensified by the enlargement of the subarachnoid space. Her autopsy showed, fatty filum terminale, syringomyelia, tethered cord, and a large central cavity, also chronic subdural hematoma, chronic subdural hygroma.
I spoke later with the neurosurgeon who operated on her and he said that her fall should not have caused such an injury and that her preexisitng condition was her ultimate downfall. Preexisting condition?? I was floored. I asked about a Chiari malformation, and he said there could have been a slight one, and if he had followed up with her 3 months after the first CT then he would have been able to help her more efficiently in the ER.
Do you believe that the doctors should have caught this?? Are there symptoms I should have seen. She was a preemie due to me having HELLP syndrome, but made a full recovery with no lingering ailments. She was not walking fully by herself at 18 months ( 15 months uncorrected), but we were told this is just a delay preemies have. I took her to a geneticist b/c the head size and not walking worried me immensely. She also ahd torticollis at 6-8 months which resolved, and I was todl this was b/c preemies were less mobile and more stiff from there birth, and since it resolved we were ok.
DO all of these symptoms above have a relation to the probelms they found after she passed, and do you think any of the numerous doctors we saw should have put these clues together and sent us for further testing??
I cannot find peace until I know if I missed some large sign that could have saved her.
I am pregnant again now, and am worried that there are thigns i should be looking for. Teh preinatologist I see says he will cover all bases, but doctors have let me down so miserably, I am afraid they will kill this baby too.
Please help me with any information or answers you may have.
Thank you.
calinden44

[sumairakhan]

Thanks Salma for guiding me. No I do not have a chiari malformation or a tethered cord, in which case the decision regarding type of surgery would have been easier. I am told that it is probably a low grade obstruction of brain fluid flow at the exit at its base (2 or 3 foramen there).

Thanks again ! I will choose an appropriate forum for my question

Sumairakhan

[selmaS]

HI, sorry u r so debilitated with ur condition.
It appears u r under the impression that this is a medical forum....it is a support forum....some drs may respond to ur post. There r expert forums here as well....click on the balloon "forums" on the toolbar....


May I ask, do u also have chiari or tethered cord?....U may want to look at a chiari/syringomyelia specialist....depending where u live will depend on how far u will need to travel.
I invite u to join our chiari/syringomyelia forum here on medhelp.

Godspeed
"selma"