SBO.....fakers or what!

[sean]

excuse the flipant sarcasm........breathe.....

I know I'd feel insulted:arrgh:
Even at my "level" as I see it, a level of no outward physical obvious signs of SB. I have felt the back handed flip off? of "occulta" it's not real, it's nothing!

Couple of ultra sounds back, the report came back headed Spina Bifida Occulta!....I'm like, that's not me! Hello! I have felt the assumption many times, I guess by those who know little or something about SB....whatever...I know!...can't be bothered educating them.

(actually SSHHhh....that particular ultra sound.......he was a gay man...taken by a very secret private tattoo (that absolutely know one sees or knows about LOL) and of course my ?lol sparkle. Honestly I could tell, not a clue what he was doing!)

Seriously, the words, labels, definitions we 'know' to claim for/of ourselves or inherited along the way are so deeply knowingly personally part of who we are. Part of our precious selves.
I think we need to know as much as possible 'for sure' stuff ?=labels, general
definitions....BOXED..catagorised....numbered coloured tagged....what ever it takes to summerise and describe part of you...in general terms (I'm knackered). Get a few opinions, know it, wear it.

In my understanding and words,....well I've always understood Spina Bifida to be Latin for 'split spine'. Generally with SBO, less likely to have an actual split in the bone. As I've always thought, hence, 'occulta', hidden (and with out a doubt may I suggest, mysterious). So I guess there's an argument if you consider the continuum of "levels" of ?real SB somehow starts at the actual split in the bone.
I'm kind of thinking in reality, what has the actual de-formed/split bone got to do with anything when all we deal with is predominatey neural.............(bloody latinos...lol)
For me the continuum for SB starts way off out of sight!
How can we share so many similar/uniquely SB symptoms and not have SB as we know it. How can the same symptoms be both SB related and/or a variant of 'normal'.....where's the line!
Maybe the word "occulta" is read as suspision/doubt in medical science???
I think I can relate, my SB having been mostly hidden. A whole lot of social inuendo and expectations....maddening stuff.


SO, silly question, is SBO real?.....AAAARRRRRRRrrrrrrr.....me running away!

:happy065:

[angel]

Sean I am glad you brought this up. This subject boils my blood but I think very very highly of you, and love the way you like to ponder things and debate issues so i will be nice :)
My son has SBO. Yes it is real. He deals with every issue I deal with other than he is not paralyzed. He has the muscle weakness in the lower limbs, his legs have calf muscles but just barely. He has worse neurogenic bowel than i do and he has the neurogenic bladder. The UTI's are real. His tethered spinal cord was real, his spinal fusion was real. All of these things caused by the sbo. Unlike me there were no nerves exposed. He didn't have a sac on his back anywhere when he was born. He doesn't have a shunt but neither do I and I have myleo.
To me the walking is such a trivial issue and the least of my worries dealing with SB. Some may think he dodged the biggest bullet, so to speak, since he is able to walk but those of us who have SB usually disagree about that. The bladder and bowel issues seem to bother most of us way more than the mobility issues ever have.
So yes SBO is real. It is very real.
Let me ask you this. From what I understand your issues are not visably obvious to everyone you meet. Does it piss you off when you get the attitude of doctors or just people in general "If i can't see it then there must not be anything wrong" It drives me crazy when they do that with my son. So many times they will compair him to me. Mine is visably obvious from a mile away and standing next to me he looks like a million bucks. To me that just doesn't seem fair to disregard someone's physical issues (visiable or not) when they affect your life in the same way.

Angel

[Avocado Baby]

Well said Angel!

Just because you can't see it, doesn't mean it's not real. Not being able to walk is just another aspect of the disability. From my experience, SBO and Myelo share alot of the same issues so yes, it is real.

[Dodger67]

I think the problem is caused by how common cases of SBO without neurological damage are.
Non-specialist doctors see many of those and so tends to believe all cases of SBO are harmless. They don't learn how to deal with one that isn't.

[Nettie]

I love the way how you debate and rethink everything, Sean!

And yes, I agree with Rodger. The issue is between symptomatic vs asymptomatic SBO. Both SBO and SB has such a wide range of possible symptoms and quality of life, it just cannot be boxed. It's just too individulised, which must frustrate the more scientific-minded doctors to no end...:)

My daughter doesn't have the "benefit" of either a SBO or SB diagnoses, but struggles with the neurogenic bladder and bowel and everything that entails. Without the support of the medical community, because it's not "suppose" to happen. For example...I'm told NOT to put her in nappies. But tonight I had to comfort her because of extremely painful skin-breakdown due to being in wet panties constantly. I'm envious of the support that SB children seems to get. They're told what options they have, they're given tools and the parents are informed. I'm walking in the dark here, trying to help my daughter while everyone tells us to go home. So yes, I'm also bitter at terminology that determines help for my daughter or not...:(

[Dodger67]

Nettie
Having no diagnosis at all must be very hard to deal with. Is your medical insurance ok?
I'm making a note to do some research on idiopathic neurogenic bladder in the morning, maybe I can dig up something useful for you.

[Nettie]

Nettie
Having no diagnosis at all must be very hard to deal with. Is your medical insurance ok?
You're so sweet...:) Thanx, yes, fortunately we're on a good plan of a good insurance (Discovery - for people outside South Africa, this is the name of the insurance) which covers most of the costs (like the MRI's, etc.). And for what it doesn't, we fortunately have some savings.

Thank you also for the offer of research! Any help or ideas is appreciated. I'm still believing that it is "occult" or "minimal" tethered cord syndrome. Which is a tethered cord with the conus medularis in normal position. I think it was LisaJoy that suggested it? I have an appointment end of June for my daugther with dr Slabbert (reportedly a very good neurosurgeon in Pretoria East hospital - he was Reuben Kruger's dr (a sport legend in our country who died of brain cancer a few months ago)), which I hope may shed some light.

[sean]

Thanks guys, seriously I think it's all real, I know all about the "hidden" disability.:confused:

Angel, pissed off!...an under statement!...story of my life with SB.:kleenex:
The comparison thing.. I am screaming inside when medicos/people tell me I'm lucky!, compared to others. My neurogenic bladder and bowel....lucky!!! Lucky I wasn't born with two heads as well! (no offence to the few con-joined folk who have two heads)
It makes me crazy...pissed off! Compared to someone in an iron lung, your paralysis is 'nothing'. My SB neurogenic bladder and bowel are 'nothing!' compared to others with SB who have paralysis and or hydrocephalie. I am nothing!:(
Like that's going to shut me up!...LOL That's what the comparison/guilt thing is about, it negates you and yours, kind of oppressive....and ignorant.:arrgh:

Nettie that must be so frustrating! So glad you found this site.

Maybe if we were not boxed, 'Spina Bifida', but something Neural Tube, we would all be covered. I'm wondering are there any other neural tube conditions, other than SB that cause a neurogenic bladder. Neurogenic bladder seems classically SB to me.:)

[Lifeisgood]

This is a touchy subject for me too. I had coaches in high school who accused me of faking injuries and making stuff up because I could not run (literally) like the other kids, or when I was on the dance team do moves properly where you have to go up on your toes. I can never once in my life remember ever supporting my body weight by standing on my tiptoes on my left foot. And I used to get such grief over that by my coaches. So many people do not understand that just because I do not use braces or a crutch or whatever, does not mean that I don't have full function. My left leg has been weak practically for as long as I can remember. And don't even get me going on the bowel / bladder stuff. ;) Every time I have to pee it is a constant reminder that my spine is messed up. (So yes, this is more of an issue to me than mobility, as Angel suggested). 95+ percent of the time, having SB does not bother me, but when people accuse me of faking symptoms in order to "get attention" or "get out of something" that pisses me off. I like to live my life to the fullest with what I can do, not "get out of it." Granted, most people I meet do not know that I have a disability, so I cannot fault them if they don't understand, but for my coaches etc in high school, they full well knew about it (one was my school nurse!) and they still gave me grief. Grrrrrr.

[LisaJoy]

I agree with Roger that one of the big problems with the standard medical line that SBO is an "insignificant" finding is that most people in the medical community are not educated to know that sometimes it is VERY significant and so people with treatable problems get blown off for years.

But Sean, you bring up another iimportant aspect of the issue -- is there a kind of "class system" in disabilities, and do we have a tendency to minimize the struggles of people we see as "lucky" in comparison to us? Or do we feel ourselves minimized by others? I've even "heard" that some online support communities for SB ONLY allow people (or parents of people) with myelomeningocele b/c they don't consider other types of sb relevant. In my view, it is the experience of sb (or the symptoms associated with it) that is important. That's one of the reasons I'm so glad, Nettie, that you are still with us even though Meonie doesn't have a diagnosis! She is one of us, because she shares with us a disability that is all the more harmful for being secret/taboo -- incontinence.

[angel]

Thanks guys, seriously I think it's all real, I know all about the "hidden" disability.:confused:



Maybe if we were not boxed, 'Spina Bifida', but something Neural Tube, we would all be covered. I'm wondering are there any other neural tube conditions, other than SB that cause a neurogenic bladder. Neurogenic bladder seems classically SB to me.:)

Actually my son was first diagnosed with sacral agenesis (no tail bone) and hemi vertibra (half vertibra). Sacral agenesis, i am told, always causes neurogenic bladder and bowel. The hemi veritbra can because of the thethered cord. That is how it was explained to me. It wasn't until my son was 10 that they said it is the same thing as SBO. For years i argued that it was different than SB because it had a different name, even though the symptoms were the same. I was told by the doctors at SB clinic that it was the same thing.
He has also been diagnosed with Caudial regression syndrome and one doctor even said they believed he had Vadar anomily (sp) Both of these i researched and to be quite honest about it I don't know what the hell they were thinking because he does not even almost fit the profile of those diagnosis.
I agree with the hemi vertibra and sacral agenesis. And the fact it is the same as the SBO according to the SB clinic that is now what we go with. It is so frustrating when they can't seem to nail down exactly what is going on with your child.

Angel

[sean]

Yep, I think there's some out of control beast of a class system.
From the once Autistic child (hidden) from the world, now Asbergers (genius), practically a must have accessory in some (narrow minded) circles....to......? mental illness, seemingly actively ignored by many societies (here for sure). I think there's a big ol class system. The worst of it is, I think, that it's not neccessarily political, it's us, people. People power going mad.
Think I'm a bit sucked in too, with my ideas of promoting SB in some commercial way. Up there with the top ten trendy disabilities. Tragic attention seeking stuff, but I see the spin off of research, support and recognition, obviously not for those who don't need or want it, but for those out of reach.
Quite likely deluded ideals, but my heart bursts for those, who like "me" lived out of reach.......it's all about me, I'm not all that nice lol?



And bugger it I'm selfish!
I have nagging thoughts about my idealist promotion of SB into some spotlight.
In my wonderings of why SB isn't already up there, common knowledge, better understood, feels obvious to me (know it holds me back) "incontinence"
I may be all out and able to talk anything poo and pee and me, now.
Not being seen or known to be incontinent is what it has been about for me.
Over the last good few years now. I watched and learnt from the educational/promotional awareness campain for MS, and how well they, in a matter of fact way, discussed incontinence issues, without a fliker of taboo.
I wonder if we collectively would want our incontinence out there.......Gee I'm seeing a whole lot of misunderstandings and discriminations.....what of the person with SB no incontinence....a mind field of practical and personal ethics. What am I doing!!!

Bugger! A comedy show on TV the other night, about 20 comedians. I'd say nearly half of them had a joke or reference to incontinence.
I know I feel, I'm that joke.........me, for like a nano second!.

ps. Love (to take the piss out off) a bit of snobbery......Giddy on.

[Mustang Sal]

I think the problem is caused by how common cases of SBO without neurological damage are.
Non-specialist doctors see many of those and so tends to believe all cases of SBO are harmless. They don't learn how to deal with one that isn't.


I agree with this. Everything you read about SBO says it's 'mild' and 'common' and 'lots of people have it without realising it'. While this may be true, it doesn't help people who DO have problems aren't always given the proper investigations and treatment they need. Many GPs will simply come out with the text book answer - no it doesn't hurt and no it's not a big issue.

Having said that, it's possible that when SBO is noticed on an incidental xray, they decide not to mention it if the person is otherwise ok and hasn't complained of pain or neuro symptoms, so as to not cause alarm. I'm sure there are people who get quite distressed and anxious if they're told they have something like SBO, and some who can convince themselves they have symptoms arising from that simply because they think they should, if that makes sense?

But, perhaps there are loads more people out there who unknowingly have SBO and are suffering in silence, especially if they have bladder/bowel problems.

Anyway, whichever way you swing it, SBO is very real!

[Mustang Sal]

Maybe if we were not boxed, 'Spina Bifida', but something Neural Tube, we would all be covered. I'm wondering are there any other neural tube conditions, other than SB that cause a neurogenic bladder. Neurogenic bladder seems classically SB to me.:)

Interesting thought there! I don't know where my diastematomyelia begins and the SBO ends, so I don't know what has actually caused my neurological deficits - i'm not sure there is a way to seperate them to determine what has caused what sign or symptoms. I have the classic one-sided foot deformity and hairy patch over the lesion which is common in diastematomyelia, but then SBO can be very similar. So, perhaps classing it all under 'Neural Tube Disorder' would be more helpful? But then I guess they already are, but people still tend to divide the different disorders up anyway.

I'd actually like to know if there are any people out there with Diastematomyelia WITHOUT any other NTD. I only know of 3 other people with this condition (through this forum and another one I post on) and they all seem to have associated SBO.

[LisaJoy]

I think that diastematomyelia can occur without sb, but I think it is extremely rare (well, it is rare even with sb, but rarer without it). At least, I'm pretty sure I've read this somewhere. (I know, that's not a very "scholarly" response!)

Angel -- I always thought that caudal regression syndrome and sacral agenesis were the same thing. That is, sacral agenesis describes that physical anomaly & caudal regression syndrome describes the functional problems resulting. My records seem to use the two interchangeably. I think you may be thrown off because in the more severe forms of caudal regression syndrome, the person has no lower limbs, or their lower limbs are fused together. However -- I could be completely wrong on this.

[angel]

No lisa you are right on target. Everything i could find (and i know you shouldn't google things but i had nothing to go on) was just like that. So very severe, and my son was no where near any of that stuff. I didn't know those terms were used interchangably but it clears a lot of things up and i thank you for that!
I joined a Caudial regression group on yahoo just to learn more from those who have it or their kids have it and the same there. It was sooooooo severe that my child just didn't fit any of what they were describing.
I looked into vader syndrome as well (it is no longer called syndrome it is called vader anomily i believe) and NONE of that made sense to me either. When i moved here i told one of his doctors that another specialist said he believed he had it and he looked at me like i had bugs crawling out of my mouth. He asked why he would think that and i told him my son has no muscle in his behind and that was a symptom. My son doesn't have the muscles he should have he agreed but obviously just enough to make mobility possible, and it is unusual looking it looks like his legs are attatched to his back. He assured me that there was no way he could have that association to vader's.
Sometimes it seems like a circus but i am pretty sure we finally understand at least for the most part.

Angel

[Nettie]

Nettie that must be so frustrating! So glad you found this site.

Maybe if we were not boxed, 'Spina Bifida', but something Neural Tube, we would all be covered. I'm wondering are there any other neural tube conditions, other than SB that cause a neurogenic bladder. Neurogenic bladder seems classically SB to me.:)
Thanx Sean, I agree, I'm so glad I found this site...:) I have no idea what I would've done the past 5 months without the support and help I got from everyone here. And that's a good question...what other NT conditions can cause neurogenic bladder?

But Sean, you bring up another iimportant aspect of the issue -- is there a kind of "class system" in disabilities, and do we have a tendency to minimize the struggles of people we see as "lucky" in comparison to us? Or do we feel ourselves minimized by others?
I believe this goes both ways. For most disabilities or diseases. And yes, I do believe there's a "class system". Doesn't doctors themselves class most diseases by a grade? Usually 1 to 4, and declare you "lucky" when you're a grade 1 and not grade 4? So you take that notion home, and feel people of a lesser grade are luckier than you! Or you feel sorry for those with a higher grade than you.

I've even "heard" that some online support communities for SB ONLY allow people (or parents of people) with myelomeningocele b/c they don't consider other types of sb relevant. In my view, it is the experience of sb (or the symptoms associated with it) that is important. That's one of the reasons I'm so glad, Nettie, that you are still with us even though Meonie doesn't have a diagnosis! She is one of us, because she shares with us a disability that is all the more harmful for being secret/taboo -- incontinence.
You've brought tears to my eyes, LisaJoy...:) Thank you, to hear that Meonie belongs here, means alot to me. Incontinence and the secrecy about it, is isolating. I can't describe in words how much this site has helped me. :3a:

[sean]

We all seem to be individually a little mysterious, perhaps we could all adopt 'occulta'.

We're dealing with mad 'men' of science going mad. Seems they're all despirate to have something! named after them....Mr cordial and his mate Mr Vadar.

When I hear see 'syndrome' I immediately think, the mad scientists 'too hard' basket.
A whole lot of symptoms, no piont to pin it on. Anomily, just as grey and vague.
Too hard!, too individually complex and human (beyond science)...lets call it a syndrome! That should keep everyone baffled/dis-interested.

Caudial syndrome, is this the cause of ??mermaid something where the legs are webbed/joined together? Just guessing, neural tube defect.

I feel compelled to know at least me and mine. It's like some sort pilgrimage, treck up a mountain, trying to find out something, for sure!
Tend to think the language, medical terminology (latin) is still purposely intimidating to us pleb's...........but also think we may be in the midst of a revolutionary change.
The information highway is open to us all! We can know ourselves better than ever.

Hug a scientist/doctor...they might be feeling a little lost, questioning thier worth,lol.

[printemps]

Sean and all .


"In my wonderings of why SB isn't already up there, common knowledge, better understood, feels obvious to me (know it holds me back) "incontinence"
I may be all out and able to talk anything poo and pee and me, now.
Not being seen or known to be incontinent is what it has been about for me."

I hear ya there I was born in the way back when ... I dont think they knew what to call my SB as I guess its more like a Meningocele - not as obvious as a Myleomeningocele but not an Oculta , at some drs I saw early on they thought it was Sacral Agenesis as the lowest portion of my Sacrum is affected . I also do not like some of us have a visable disablility but oh boy the incontinence sure is an issue ! I went to an SB convention once , they thought I was a parent ... I did not know whether to pull up my pants leg to show my afo's or pull down my pants and show my depends . I would definatly not choose the latter heaven forbid I'd be known as incontinent !

All the best to everyone

[Gymp]

... In my view, it is the experience of sb (or the symptoms associated with it) that is important...

And that right there is why I'm here at this forum.

I believe too that because of the incontinence aspect of SB it isn't in the forefront,it's a hidden ugly part that nobody wants to know it's messy and yucky and best not mentioned.

To this day I'm still unsure of the type of SB I have.I do know it's caused me a lot of grief and I've had lots of surgery to correct various parts of my person and I am still here on this earth and I'm still struggling to keep it that way.SBO,SBM or just SB no matter which you have it is a struggle

Gymp

[kidsrustx]

I've even "heard" that some online support communities for SB ONLY allow people (or parents of people) with myelomeningocele b/c they don't consider other types of sb relevant.

This is true. I am grateful for this site, because on another SB site I was treated as though my son didn't have "real" SB. That his disability was insignificant compared to myelo. But I have a good friend whose daughter has Myelo and is in a wheelchair. She has told me that it would be harder for her to deal with one of her kids without SB being diagnosed with it. She says her daughter has never known anything but paralysis, so she doesn't miss it, whereas her other children would be devasted by the loss of the ability to walk.

[angel]

Yeah I have been told the same thing about my son. I have tried to point out that because I have myleo and we share almost all the same symptoms except paralysis I felt it was absolutly significant. Wierd how some of these groups work.

Angel