How many of us here with Spina Bifida? - Page 2

JessRyan · 10-20-2009, 09:11 AM

I have SBO as an incidental finding on CT scan at the age of around 30 if I remember correctly.

I'm currently being worked up to rule out MS after 10 years and brain lesions with most recent attack started this past August at the age of 39.

petemancw · 10-20-2009, 06:05 PM

i have had sb myelo all of my 23 yrs. with hydro

Trout Bum · 10-22-2009, 12:23 AM

I have SB. Losing my ability to walk...

Keiser · 10-25-2009, 01:04 AM

yup, I have Spina Bifida along with Hydrocephalus and *Chiaris Malformation which was only diagnosed about 3 years ago*... wheelchair user since birth... no real problems other than the chiaris diagnosis, with exertion headaches. Hasn't gotten worse or anything just stagnated... Must admit i am not educated on these issues, other than how they affect me (very little really) - kinda wish i was, kinda thankful I am not.

Le Type Français · 10-25-2009, 05:13 AM

I was born with the closed form. You can see the curve where the opening would have been, but fortunately, mine closed and protected my cord.

Little Ali · 11-01-2009, 11:35 AM

Hello,

I've just joined and I have Spina Bifida Myelomeningocele (the most severe form) and Chiari 2 (but minimal/no hydroocephelus) I have kyphoscoliosis. My lesion is lumbar but my sensation/function goes at about T6ish.

It'd be good to get to know some other people!

ARNOLD_1978 · 09-05-2011, 09:04 AM

here i'm 33 years old man with spina bifida in wheelchair, i would like to know if there is here someone that have find a definitively solution for impotence......any sugestion to resolve problem???? thank you in advice

JimD · 09-05-2011, 10:49 AM

Hi Arnold - you'll get far more responses if you post your question in the Relationships and sexuality forum. Also - are you interested in achieving erection or ejaculation/orgasm - two different issues, oddly enough.

BlueEyedVAGirl · 09-07-2011, 07:54 AM

I was born with SBO, fortunately the skin closed and protected the cord. There are bones missing at L4&L5. I've known about it since I was five, when a hairy patch started growing on my back. Over the past four to five years, been dealing with severe back pain, sciatica, and gradual reduction of reflexes in my right leg. FINALLY convinced a country bumpkin doctor (who told me, oh you're fine, it'll work itself out in 4-6weeks

)to refer me to Duke in NC, and seeing a pedi neurosurgeon now who dx tethered cord (very visible from their MRI).

Having detethering surgery on the 19th *crosses fingers*

Sorry didnt' realize this was an old thread

JimD · 09-07-2011, 06:33 PM

Quote:

Originally Posted by BlueEyedVAGirl

Having detethering surgery on the 19th *crosses fingers*

Sorry didnt' realize this was an old thread

Doesn't matter if it's old - good luck on your surgery! Let us know how it goes for you.

09-07-2011, 07:54 AM	#19
BlueEyedVAGirl Junior Member Join Date: May 2011 Location: Southern Va Posts: 21	I was born with SBO, fortunately the skin closed and protected the cord. There are bones missing at L4&L5. I've known about it since I was five, when a hairy patch started growing on my back. Over the past four to five years, been dealing with severe back pain, sciatica, and gradual reduction of reflexes in my right leg. FINALLY convinced a country bumpkin doctor (who told me, oh you're fine, it'll work itself out in 4-6weeks )to refer me to Duke in NC, and seeing a pedi neurosurgeon now who dx tethered cord (very visible from their MRI). Having detethering surgery on the 19th crosses fingers Sorry didnt' realize this was an old thread Last edited by BlueEyedVAGirl; 09-07-2011 at 09:48 AM.

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10-20-2009, 09:11 AM	#11
JessRyan Junior Member Join Date: Oct 2009 Posts: 3	I have SBO as an incidental finding on CT scan at the age of around 30 if I remember correctly. I'm currently being worked up to rule out MS after 10 years and brain lesions with most recent attack started this past August at the age of 39.

10-20-2009, 06:05 PM	#12
petemancw Member Join Date: Aug 2009 Posts: 46	i have had sb myelo all of my 23 yrs. with hydro

10-22-2009, 12:23 AM	#13
Trout Bum Junior Member Join Date: Oct 2009 Location: Salt Lake City, Utah Posts: 12	I have SB. Losing my ability to walk...

10-25-2009, 01:04 AM	#14
Keiser Senior Member Join Date: Jul 2008 Location: Brisbane, Queensland, Australia Posts: 272	yup, I have Spina Bifida along with Hydrocephalus and Chiaris Malformation which was only diagnosed about 3 years ago... wheelchair user since birth... no real problems other than the chiaris diagnosis, with exertion headaches. Hasn't gotten worse or anything just stagnated... Must admit i am not educated on these issues, other than how they affect me (very little really) - kinda wish i was, kinda thankful I am not.

10-25-2009, 05:13 AM	#15
Le Type Français Senior Member Join Date: Dec 2005 Posts: 25,860	I was born with the closed form. You can see the curve where the opening would have been, but fortunately, mine closed and protected my cord.

11-01-2009, 11:35 AM	#16
Little Ali Junior Member Join Date: Nov 2009 Location: Newbury, Berkshire. UK Posts: 3	Hello, I've just joined and I have Spina Bifida Myelomeningocele (the most severe form) and Chiari 2 (but minimal/no hydroocephelus) I have kyphoscoliosis. My lesion is lumbar but my sensation/function goes at about T6ish. It'd be good to get to know some other people!

09-05-2011, 09:04 AM	#17
ARNOLD_1978 Junior Member Join Date: Sep 2011 Posts: 2	here i'm 33 years old man with spina bifida in wheelchair, i would like to know if there is here someone that have find a definitively solution for impotence......any sugestion to resolve problem???? thank you in advice

09-05-2011, 10:49 AM	#18
JimD Senior Member Join Date: Dec 2001 Location: Long Island, NY Posts: 2,052	Hi Arnold - you'll get far more responses if you post your question in the Relationships and sexuality forum. Also - are you interested in achieving erection or ejaculation/orgasm - two different issues, oddly enough.