I have questions on my future health.

[Pennie220]

Hello, I am a 59 year old woman who was born with sb. I guess it would be called sb occulta. I can remember having open holes on my upper and lower spine which made my bandages wet all the time. They finally closed up when I was two years old. Never gave it a second thought until now.
I am humbled to all of those who have sb and I know that my problem sure isn't a problem compared to ones I have read on this sight. I am writing to ask anyone here if this could be a cause of concern to me as I am getting older.
To explain - My son was diagnosed with pancratitis and lived a very painful five years (from 13 to 18 yrs. of age) with every attack a possible death. I got on a web sight and talked to people who told me the truth that the doctors wouldn't tell me, and found a new doctor. He eventually cured my son. This is why I am here. It is very good people as yourselves who care enough to be honest.
Thank you in advance for any of your help, Pennie

[Dodger67]

Hi Pennie
Welcome to the forum.
I don't really understand what your question is. (There isn't a single actual "?" in your post.)
I also do not understand what your son's pancreatitis has to do with anything.
The part about 2 separate open wounds on your spine don't add up, because SB Occulta does not involve wounds. In fact it usually shows only slight external signs such as an unusual dimple or a discoloured spot.
It sounds more like some kind of septic wounds which are probably not relevant at all.
You want to know about your future health but you don't say anything at all about your current state.
Do you have any continence problems?
Do you have any loss of sensation in your feet or legs?
Do you have any weakness or difficulty walking, standing, etc?

[Pennie220]

Sorry I wasn't clear about my situation. I wrote to find out if my past condition can cause health problems in the future. Or is it just in the past. Not knowing what I truly had, is also my question. I only guessed at occulta because I read it was not as severe as the rest. Mentioning my son's condition was only to show that I truly believe that speaking on these forums has been truly helpful to me in the past.
Since birth till I was 2, I had two open holes on my spine (One by my neck and the other below my waist) which leaked fluid. The doctor back then explained to my parents that the fluid also contained spinal fluid. He did not expect me to live past mid-teens (I am now 59) and I would definately not grow above 4' (I am 5'4 1/2"). In the past I had to have chiropractic work done on me due to numness and pain in my hand and arm. He said as he went down my spine he could feel a 'dimpling' in two spots. Both spots were where the holes were.
As far as my health is conserned: 5 years ago I was home-bound with contenance problems for a month and a half. I got on medication am doing pretty well.
I feel very foolish having bothered you if this was not sb. I plan to reitire in the near future so I guess I was just wanting some peace of mind. God bless you all and thankyou again. Pennie

[ollieholmes]

You are not bothering us. We will do our best to help, im sure none of us mind the questions.

[Barb]

Sorry I wasn't clear about my situation. I wrote to find out if my past condition can cause health problems in the future. Or is it just in the past. Not knowing what I truly had, is also my question. I only guessed at occulta because I read it was not as severe as the rest. Mentioning my son's condition was only to show that I truly believe that speaking on these forums has been truly helpful to me in the past.
Since birth till I was 2, I had two open holes on my spine (One by my neck and the other below my waist) which leaked fluid. The doctor back then explained to my parents that the fluid also contained spinal fluid. He did not expect me to live past mid-teens (I am now 59) and I would definately not grow above 4' (I am 5'4 1/2"). In the past I had to have chiropractic work done on me due to numness and pain in my hand and arm. He said as he went down my spine he could feel a 'dimpling' in two spots. Both spots were where the holes were.
As far as my health is conserned: 5 years ago I was home-bound with contenance problems for a month and a half. I got on medication am doing pretty well.
I feel very foolish having bothered you if this was not sb. I plan to reitire in the near future so I guess I was just wanting some peace of mind. God bless you all and thankyou again. Pennie
Hi Pennie,
I would request as many of your past records as possible. I am surprised by how many people in your age range know so little about the conditions that affect them. I think years ago people did not question doctors the way we do now. You should go to your primary care doctor and ask them to order an MRI to check for spina bifida and explain why you are unsure if you have it. If you had continence issues, you should have no problem getting them to approve an MRI. Then you will know for sure what you are dealing with and we can be of more help :)

[Dodger67]

I have never heard of SB with 2 separate lesions - but I can't think of any reason why it shouldn't be possible either.

If the lesions were leaking CS fluid then it is more serious than occulta - but with little nerve damage - seems like it is meningocele, which as far as I know is the rarest type of NTD.

I agree with Barb, try to get hold of as much of your early medical records as possible; then have a proper evaluation of your current status - have them check particularly for tethered cord.

There are no dumb questions, only dumb answers.

[angel]

I agree leaking fluid doesn't sound like occulta to me. My son has occulta and although many of his vertibre didn't completly close he hasn't leaked anything. The only noticable thing on him is what looks like a little red birthmark right above his butt. His actual bone problems are not visible without an x ray. If i had not known he had occulta from birth i would have just thought it was a birthmark.

Angel

[Pennie220]

Being previously clueless, thanks to each one of you, I am feeling a little better or at least a little more informative. thanks. As far as my records go, our family doctor was also a friend of the family's. He died many years ago and his nurse sent each member of the family their medical history. A lot of information was left out or not readable (you know how a doctor's hand writing looks).

I will be getting in contact with the hospital where I was born (in the area), and see if they have any records that go back that long. Dodger67, what is NTD? I have to go to the doctor's in the fall for a colonoscopy and will talk to him about the MRI. Thank you again, you all are wonderful people and I appreciate every posting I receive. God bless you and your families, Pennie

[Dodger67]

Neural Tube Defect
They range from Anencephaly - Open skull - underdeveloped brain, live only a few days after birth, if they make it to birth at all.
Then the various forms of Spina Bifida, with Occulta being the mildest.
BTW: Wikipedia has a fairly good article on Spina Bifida, go take a look.