late detection

is it something i should be concerned about?

i was diagnosed as sb at 17 and told nothing much that its nothing to be really concerned about** and sbo at 27*was diagnosed a couple months ago now*

the only things to date that has happened by docs to date is pain medication and physiotherapy

i will be pushing to see specialist* and was wondering should i be checked to see if i did have Hydrocephalus and if* i did what damage did it cause?

and is it dangerous for such a late diagnosis?

even my gp was verry surpirsed to hear at what age it was first noticed

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Connected*

My name is Deborah. I have both Hydrocephalus and Spina Bifida. Usually hydrocephalus is connected to Spina Bifida. The "spina bifida sac" is removed from the babies spinal column and then the excess fluid has nowhere else to go but to the head........literally. Thus causing a swelled head and if not treated right away at birth the brain swells too much and thus causing mental retardation....or even death.

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Deborah

Connected k cause i only found out at the age of 17

and havent been to specialist yet

so this condition is only relevant if it was found at birth and the sac was removed?

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so, are there any penalties for late rps for this PPV? I saw a couple of slightly late RPs, and I want things to be fair.

[infolady]

Occulta is often undetected at birth and is known as the hidden form of spina bifida. It is a mild form of spina bifida and for many of those affectedand sbo does not cause any health issues. Often people become aware that they have sbo after having a back x-ray for an unrelated problem, back pain or incontinence becomes an issue. Your sbo was not diagnosed at birth, because it wasn't visually apparent like other forms of spina bifida where a baby is born with a "sac" or opening on the spine, however, for many diagnosed with sbo, even later in life there can be associated health problems. They usually arise because the spinal cord becomes tethered to the backbone. Often a person who is previously symptomless may experience difficulties during the rapid growth of adolescence. This is because the nerves of the spinal cord are stretched and the symptoms may become progressively worse. A person may also experience weakness and reduced sensation of the legs, change in hand function, bladder infections and incontinence and bowel problems.

Now that you have been diagnosed with sbo, it is important to get a referral to a neurosurgeon and have a complete neurological assessment done, which should include an MRI or CT Scan to give a clear picture of your brain, spinal column and nerves so they can advise the most appropriate treatments.

85% of individuals with spina bifida also have hydrocephalus, which is usually present at birth. However, hydrocephalus can develop at any stage of life and acquired hydrocephalus may occur as a result of a head injury, meningitis, brain tumours and unknown causes.

For more information about spina bifida occulta complications, please contact the Association 800-387-1575 or provincial@sbhao.on.ca to receive an information package.

If you think you have hydrocephalus, get your doctor to send you to a neurosurgeon for a CT scan or a MRI, that will be able to tell them if you have hydrocephalus? Or get your doctor to order these tests, if they can! How I found out that I had hydrocephalus I got the mumps when I was 37 years of age,
after that I had a constant headache and they did a CT Scan and discovered that I had hydrocephalus! I am 47 years of age and I had a shunt put in July
2008, I waited for about eight years before I had that done? Hope this helps!Take Care -Donna

I was just diagnosed with congenital hydrocephalus & aqueductal stenosis last year @ the age of 42. I have gone through many emotions in the last year from shock, relief, depression, anger, loneliness & finally acceptance. I am high functioning (according to Dr. Reddy) & do not require a shunt yet. However due to lower body strenght & balance issues will be getting therapy starting very soon. Take care.

I am sure that living with this and being undagnosed will definitely put you at a greater risk for having damage occur during the time that you weren't diagnosed, but it seems as though you were functioning very well prior to your diagnosis which is why they hadn't found it sooner. So hopefully all is going to go well for you and you experince minor complications if at all. Good luck to you and I hope you find a lot of support and information on this site.