diastematomyleia

[arungolla]

i am residing in Chennai (INDIA)
I am writing this letter with a tons of pain in heart
i was blessed with a daughter on june 24th 2006 (2years and six months as of now)
one month back a pediatrician suggest for a MRI Scan suspecting some spinal disorder
due to hair growth on her back side (hip)
hence we consulted neuro physician with an MRI Scan
I am enclosing the report details for your reference
1.SPINAL CORD IS LOW PLACED ENDING AT L5 VERTEBRAL LEVEL WHERE IT APPEARS TETHERED
2.THERE IS DIASTEMATOMYELIA AT L1 TO L3 LEVEL.
3.SMALL SYRINGO-HYDROMYELIA AT D11,12 LEVEL.
4.PRE AND PARAVERTEBRAL SOFT TISSUES ARE NORMAL.

Doctors said surgerical treatment is a mandatory in this case
but as of now my baby is absolutely fine
we met Urologist he suggested all the tests
1.Urine test,2.Urine culture3.Ultra sound scan
in all the test results are normal
baby is running,playing,dancing with out any difficulty

No doctor is confident in post surgical recovery
some are telling usually baby will be all right but even it is not
in a confident manner
i am really worried a lot and running from post to pillar
whether to go for a surgery or not?
her mother literally crying from the past 15 days
i have no clue about what to do?since baby is all right.

My doubts are:
1.Can i wait till the symptoms due to the above said problem arises?
2.In such case what type of problems will arise?and how can we identify at the earliest?
3.Will those problems will be overcomes after the surgery?
4.If we go for a  surgery now what is the percentage of risk involved in this surgery ?
5.Will a 2and half year old kid can tolerate the pain after the surgery?

PLEASE SUGGEST US IN THIS CASE PLEASE.

regards
arun golla
chennai.
INDIA

[margypops]

I hope the consultation goes well and you get more information regarding the surgery for your daughter,let us all know how it goes.

[arungolla]

thanks a lot for your concern and help
today i consult one neuro physician-(ped) he also suggested for a surgery
i will be getting info from the above mentioned site
thanks a lot again

[margypops]

I have just googled and there is a lot of information you may want to read that seems helpful and http://www.asap.org  is a site to go to. So put  distematomyleia   in  and take a look, let us know if you get some help and good luck to you.

[margypops]

I am so sorry for all the pain you are feeling, I can imagine how hard this is for you,I cannot answer your questions there may be someone here who can ,I also suggest you put this in to the Doctor Forum , click onto forums and it is the column on the right  scroll down there is Pediatric endocrinology or Family Medicine , someone will advise you . You can also put into your search engine' Diasematomyleia'  and it will give you information and you may be able to get help that way. I will also go there and see what I can find out,