Diagnosed possible SBO as a child but now having some difficulties

[moptortoise]

Hello all, I am wondering if I can ask you for advice and oppinions please.

As a very little girl I had a variety of problems around initially sitting up and then my balance and hypotonia in my legs. I attended the Child Development Centre until I was five and had physio to increase muscle tone and improve my balance and my gait as I walked with my feet turned out. I also went to Riding for the Disabled to improve my srtength and muscle tone. At the time it was decide I had SBO, I think through Xray.

There were no exteral sins although to this day I get the comment that my lower back goes in further than it should. I also have very wide feet (girls shoes were too narrow as a child I had sturdy boys lace ups) with one slightly longer than the other. I am shorter than my Mum and Sister by a good few inches, i am 5ft. I also hit puberty at 10, much younger than my sister and Mum. (I have read this can be indicative of SBO)


Throughout child hood, I used to tire easily, my legs and lower back would begin to hurt quickly. At 14 it got to the point where I was once again given physio.

At 16 we moved to a different area and the GP decided to send me for an MRI scan to see if I did indeed have SBO. The results returned as inconclusive. Although it was discovered one leg was 1/2 inch shorter and they built up my shoes.

I am now in my 30's and I have just assumed that I don't have SBO, but...

For the last 8 years I have struggled with my bowels (having to run to the loo fast and occassionally having slight accidents) I get numb legs very easily and even today I get achey legs and back easily and I am always turning my ankles over. I take pain killers most day.

My question is, should I return to the doctors to ask for clarification? I have fears around this as I am over weight and I am afraid they will say this is the main problem. But I had the same symptoms when I was slim.

Thank you for your time
Jane

[NerdaliciouS]

You know... If it's affecting you as much as you say, I'd say you should go to the doctor. I'm overweight as well, and definitely have SB! But even when I was slim, the pain and issues were still there. Being heavier isn't always the cause of things, it will put more pressure on things, but I don't really think it would affect your bowels and the like. If they try to blame it on that, be firm and explain it and don't leave until you get answers.

Nobody deserves to live life in pain, not knowing why. I say go and see what happens.
:happy065:

[moptortoise]

Thanks Nerdalicious. I do wonder though, because I have had an MRI at 16, can they be inconclusive?

[LisaJoy]

I suppose an MRI could be inconclusive -- but I'd put my money on the problem being with the MRI. They can be poorly done. I once had a myelogram CT that had to be repeated because of technical problems (that was no fun, since it involves an injection in the spine).

Definitely pursue this -- a fresh MRI, read by fresh eyes, could really give you some necessary information. Given your medical history and your current problems, you very well may have some sb-related issues.

PS Try to find a pediatric neurosurgeon who specializes in sb and takes adult patients.

[moptortoise]

Thanks Lisa Joy. I will head back to the GP's and see if I can get booked in with the nice Doctor rather than the one who just links everything to my weight.
I wish I had found this forum sooner, it is so informative!
Jane

[Dodger67]

Hi Jane
Welcome on board! :happy065:
I agree with Lisa, get a fresh MRI (of your entire spine and brain!) and try to find a good neurosurgeon. Where do you live? Someone may know a good doctor near you.
An inconclusive MRI can be very frustrating, one of our other members "Nettie", has been down that road with her daughter. But MRI technology has also improved since you were 16, so please insist on getting it done.

[Nettie]

Welcome Jane!

Yes, like Dodger said, I too have been down the road with an MRI that showed nothing. Though, my daughter's symptoms (bladder and bowel incontinence and a slight drop foot) point to a tethered cord, so it's now believed she may have an occult tethered cord. A tethered cord that does not show up on MRI.

I agree with the others. You need to have an updated MRI and see a neurosurgeon that knows about Spina Bifida. Good luck, and keep us posted?

[Mustang Sal]

Hi there, welcome to the forum!

It certainly sounds like you have quite a few issues going on there, and they really should be investigated. Bowel incontinence is not normal, and points to something being wrong with the nerves.

Do you live in the UK? If so, I can give you details on how to apply for your medical records - best thing I ever did!

[moptortoise]

Hi Mustang Sal, Yep I am in the UK. I have the notes from the Child Development Centre but not any later as we moved around the country and I am not sure which hospitals I was under. I work in an NHS hospital and when I see patients I always have to write to the GP, so I am hoping all the hospitals might be in my GP notes. (Fingers crossed)

[beth ramsden]

HI

Sounds like you are having a horrendous time and i certainly know about fighting to find out whats wrong ( i have a 12yo with sbo and problems..).. your doctors notes should have copies of letters from all the hospitals you have been to, if you speak to the practice manager of your current surgery you can make arrangements for copies of all yur doctors notes ( they will be unable to pull out letters here and there so will have to have them all) my gp here in Wales charge £50 for this service which i believe is an average fee, it takes about a week once the payment has been made to get the notes from them i believe

hope you get everything you need from the doctor and dont bacxk down if you know something si wrong keep fighting good luck and keep us all informed

[Mustang Sal]

Hi Mustang Sal, Yep I am in the UK. I have the notes from the Child Development Centre but not any later as we moved around the country and I am not sure which hospitals I was under. I work in an NHS hospital and when I see patients I always have to write to the GP, so I am hoping all the hospitals might be in my GP notes. (Fingers crossed)

Yes, getting hold of the GP notes seems like a good place to start! I've never seen my GP notes, and didn't actually realise you could get copies of these! I thought it was just hospital medical files you could request. You learn something new every day :) Good luck anyway, let us know how it goes.