Hi I'm Here !

[lewisson]

Well I can't exactly say :signs116:, I was here about six weeks ago. I have a cousin who has SB and thought I could gain some kind of insight as to how she might be feeling ! Or maybe what she's thinking ! She doesn't talk much about it, but really gets depressed and I don't know what to say. She talks a lot about giving up, and being tried, she just turned 30 this week. This has been a really hard year for her so far. She's had three surgeries, and now has a trach tube, and a permnant GT for feeding. Does anyone have any advise for me to help her and her Mom. I'm a Geriatric Nurse, and am way out of my area of knowledge.:2aa:,
Looking forward to getting some input :3a:,

Mary

[Dodger67]

Hi Mary

Get her to join us here - if she is able to use a computer.
With a trach and feeding tube, something must have gone really horribly wrong!
Do you know what surgery she had?
Do you know where her lesion is?

[lewisson]

My cousin has SB myelomeningocele w/ Arnold-Chiari syndrome. She has paralysis on the left side of her throat which her mom tells me she has had for many years. The doctors thought that a shunt they had put in years before might be what was causing her severe headaches, she had gotten a cold in Dec. 07 and had stayed very congessed after two rounds of anti-biotics, so they ( the doctors ) decided to replaced the shunt in Jan. 2008, then two weeks later they went back in to cut a tether ( not sure of the spelling for that.) was related to her spinal sac growning to her ? Then two weeks later, they opened the back of her head up to make the opening at the base of her skull larger to relief pressure, ( still was having severe headaches ) needless to say three surgeries in six weeks caused her to become very weak, after almost dying they realized she had aspirated - pneumonia, and she nearly died before they could get her vented. Four days later she had a trach put in. During all of this the only thing she was getting was through her IV, hense she lost down to 68 pounds. They placed a NGT for the first week, then they did three swallow gag reflex tests, she didn't pass any of them, so then they put in the GT for her feedings. I came back home when they let her finally come home, she has put on some weight, she's up to 90 pounds now. Has been put on O2 prn via nc. The doctors say she looks good, lab is good, everything is checking out good and day before yesterday she had a seizure ? No one knows why !
I'm truly sorry for making this so long, but I feel so lost, I want answers to questions I haven't even thought of yet.......Does that make since, I'm scared for her and her mom. If I feel this way, I can only image what must be going on at their home. I feel like I'm on the :2aa:, and so :confused:, but I will give her the address to the site and ask her to drop in. I think maybe if she opened up and talked more about it, with others who have simliar things in common with her, maybe she'd feel better...not so depressed. :3a:, for letting me vent. Mary

[Barb]

That is the strangest reason I have ever heard to do a shunt revision.

So it sounds like it went
shunt revision
detethering
decompression
G-tube

Yikes, that is a heck of a ride. But from what I have learned and experienced it can be like that. It is sort of a domino effect. The good news is that once she does start to get stronger it may well be years before she would need intervention again.

[Dodger67]

Wow, she's really been through the grinder!
Please tell her we wish her well and a good recovery.