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SBHA 07-22-2003 11:39 PM

We seem to be getting a lot of enquiries re people who have discovered they have occulta. Is this the case for you* and how can they be helped.

infolady 08-01-2003 05:58 PM

SBHAO*does as well.* We have a package of information on occulta and secondary conditions like tethered cord that we provide initially.* We also assist individuals in contacting medical specialists and other service providers.* We*provide a peer linking program where we try to link the individual with other members similarly diagnosed, whether is be an adult or a parent.

Hope this helps!


lucy 09-15-2003 05:59 PM

My son has spina bifida occulta and had an operation to release a tethered cord when he was 11.* He is now 19. The operation was successful but now he is experiencing severe back pain. The doctor says he does not need surgery but the back pain is causing him mental and physical distress. Does anyone have thoughts about this.* I am very concerned


I hope I am sending this correctly.* I have just registered

Jcoon2 09-23-2003 11:23 PM

Im a student in Indiana and Im a nursing major. I want to write a* paper about SB but everything I look up goes around really the feelings that people go through. I want to know what is it like to live day to day with SB. Is it any different from others? Also, if you did have surgery did it help you in any way? I would really appreciate your input. It would help me out greatly with my paper and also just to understand SB. Thank you so much,


Jcoon2 09-25-2003 10:55 PM

I was just checking back to see if anyone had posted to my message. I really dont know how this works but it doesnt look like anyone has. So I guess nevermind for your help.


Lisa Harper 06-08-2004 01:38 PM

Hi Jessica:

I am new to the forum and just saw your message looking for some ideas on what it is like to live day to day with SB - for me*I have been very lucky - although I have had my back, my feet, my bladder, my bowels, and a hysterectomy done, I am still mobile and do work a full time job.* The main issue for me (besides the day to day aches and pains) is the cost of the incontinence pads that I were 24/7.* I work full time in order to cover the costs and this is very frustrating - I do want to be a contributing member of society, but is it really worth me putting my pay into pads?

I have recently had a few bad cases of cellulitis that has slowed me down physically, but not mentally.* I am always searching/talking with others to gain an insight on how they deal with similar situations.

I hope I have helped you out a little - SB is such a broad disease and everyone who has it is affected differently - I do count my self lucky that I have an excellent network of family and friends who have helped me over the years.

Thanks, take care,

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