life expectancy

[eng188]

It seems to me there are no good stats on this, and I've just been kind of curious lately about it. Spina Bifida is not treated at terminal, as, say cystic fibrosis is. But occasionally, it does seem people do pass away kind of young, as in a 21/f who was otherwise a healthy sb, due to a blod clot.

[Barb]

I wish there were good statistics on this. You would think that with all the surgeries and other diagnosis that go along with sb that it would generally be lower than the 'average' population but if you ask most medical professional they will tell you that sb does not lower life expectancy.

[trekman]

I have read a lot about life expectancy and Spina Bifida and it seems that the biggest problems one could face is either a shunt infection or renal failure. I know two girls here in the uk that sadly passed away due to both of these conditions before they were 25. However, it is not all bad news. If you eat sensibly, get regular heath checks then there really is no reason why you can't live as long as anyone else. I actually remember reading a story on a Spina Bifida website (http://www.asbah.org/ I think) and it mentioned that the longest lived person that they knew of with the most severe form of Spina Bifida lived to be 85 so I guess there is hope for us all!

[Dodger67]

I've seen the same "stats". If you
1. survive the first few days
and then look after your
2. kidneys
and
3. shunt (if you have one)

Except for these 3 "killers" there's no significant difference from the average. Each surgery has its own mortality factor (usually very small).
For the rest its the usual, heart disease, cancer, accident, etc, same as anybody else.

[angel]

I have heard and read the same thing. If you take care of your kidneys, and shunt eat right, exercise as much as you can we should live a normal life span. Blood clots can happen to anyone at any time i think everyone is subject to that.

Angel

[cheray]

Rory, my 12 year old daughter has chronic renal impairment with 25% function in both her kidneys. She is very small, but proportional. She walks and looks regular as any other kid. SHe cries at night till her face is unrecognisable and then comes out of her room and tells me how she fears dying. She says she doesnt want to be nothing. Or not exist. And I am helpless to explain or give her hope when I am so unsure myself of what lies ahead. I just say even though we all die at some stage, we all feel fears, but I tell her anyway that she will live as long as anybody else and more so as she is always at the doctors being kept an eye on. But god it is the most distressing situation sometimes................

[eng188]

I happen to be an atheist. It just makes sense to me. We shut down. But at times, I don't like at all to face that fact. I guess the trick is to just live in the moment and not think do hard about the future, or, for that matter, the past. Being 12 years old sure isn't easy. I feel for her. But we adults have our concerns as well. It's hard to know what to say without alienating a kid (or indee, not speaking UP to her level, too).

Best of luck to her, though, from an adult wondering some of the same things I did when I was 12.

[trekman]

I have heard and read the same thing. If you take care of your kidneys, and shunt eat right, exercise as much as you can we should live a normal life span. Blood clots can happen to anyone at any time i think everyone is subject to that.

Angel

As far as I am aware there is absolutely nothing that you can do in your daily life to prevent shunt problems but I do agree with you when you say that its important to exercise and eat right. If you make sure that you drink plenty of fluids then that will also help keep your kidneys healthy. As far as my shunt is concerned I haven't had any problems since I was 13 and I'm 40 now so I think I'm doing really well.

[mommy2cnj]

As far as my shunt is concerned I haven't had any problems since I was 13 and I'm 40 now so I think I'm doing really well.


Amazing.......couldn't help but notice this part and think it's wonderful! :clap2::Banane21:

Did you have many shunt issues as a child? (Not trying to gather statistics here...just wondering!) :cool:

[nanna]

SB is nothing like Cystic Fibrosis. My neice died of CF it is a degenerative disease which can become worst with colds and infections. I do not yet know enough about SB but i imagine it is more like a condition a person lives with and not an illness. Can anyone tell me if i am right?

[Dodger67]

You are absolutely correct!
SB is not a disease or illness.
It is just something you live with.

[Summer25]

You don't die from the sb. You die from the other issues such as, hydrocephalus, arnold chiari, kidney issues. Things like that. My mom just met a lady today and her husband has sb. He is 61.

[Dodger67]

You only die from HC or kidney issues if you neglect problems.

In my entire life (almost 41 years) I have had only one kidney infection.
With the sophisticated diversions and other treatment available these days, the rate and severity of kidney infections can be reduced dramatically.

If your shunt is properly cared for, hydrocephalus becomes a non-issue.

[Summer25]

You only die from HC or kidney issues if you neglect problems.

In my entire life (almost 41 years) I have had only one kidney infection.
With the sophisticated diversions and other treatment available these days, the rate and severity of kidney infections can be reduced dramatically.

If your shunt is properly cared for, hydrocephalus becomes a non-issue.

Yea, I beg to differ. I knew a little girl that died at the age of 10. She had SB and hydro. She had about 50 shunt surgeries in her short little life. Nothing could have been done for her. Also, I have had severe kidney issues. My left ureter was removed. Not due to infections, but due to scar tissue and endometriosis. My kidney function went from the normal 50% to hanging on at 30% in a very short amount of time without anyone knowing. So, sometimes it can't be avoided nor can be taken care of quickly.

[Dodger67]

Ok I'll agree that severe hc can be fatal - if shunts are unable to bring it under control. If it is brought under control with a shunt, you are not going to just keel over one sunny day at the age of 30 or whatever just because you have hydrocephalus.

Endometriosis is a nasty condition but it is not related to SB.

Kidney disease is not a necessary/inevitable consequence of having SB. Mine are in excellent condition.

Your original statement implied that hydrocephalus and kidney problems related to SB are inherently fatal.

[Summer25]

Ok I'll agree that severe hc can be fatal - if shunts are unable to bring it under control. If it is brought under control with a shunt, you are not going to just keel over one sunny day at the age of 30 or whatever just because you have hydrocephalus.

Endometriosis is a nasty condition but it is not related to SB.

Kidney disease is not a necessary/inevitable consequence of having SB. Mine are in excellent condition.

Your original statement implied that hydrocephalus and kidney problems related to SB are inherently fatal.

I never said endo was related to sb. I stated that with kidney issues you just never know. For us with sb things can and usually do happen quickly. What a "normal" person could get through, we may not be able to be. I know of a lady that has sb that just had her a kidney removed. For a "normal" person her issues wouldn't have been issues. That was what I was saying. Anything can happen to anyone. Just because you have no issues doesn't mean everyone else doesn't.

[Dodger67]

Just because you have no issues doesn't mean everyone else doesn't.

That is certainly true.
It also doesn't mean that just because you (and some others you know) do have "issues" that they are inevitable.

My original objection to your first post was that you made it seem like people with sb WILL ALL DIE of kidney failure or hydrocephalus complications.

But let's not argue about semantics. We are alive now and should enjoy it - for tomorrow a bus might run over me!

It's almost midnight here, tomorrow is Monday, I'm off to bed. Goodnight!:signs120:

[eng188]

SB is nothing like Cystic Fibrosis. My neice died of CF it is a degenerative disease which can become worst with colds and infections. I do not yet know enough about SB but i imagine it is more like a condition a person lives with and not an illness. Can anyone tell me if i am right?

I didn't intend to imply SB and CF were in any way related. I know quite well wha both are. I was just comparing and contrasting.

SB is not an immune disorder. It also doesn't directly affect lungs, pancreas, or other organs. It does usually affect mobility, learning, and circulation. The circulation seems like it's the big kicker. If not enouh blood circulates correctly through the body, skin can die or be compromised, which can require surgery. I'm not sure if circulation directly impacts all the organs, but one SB girl I knew died earlier this year at 31 from a bowel obstruction.

SB is indeed not degenerative, per se, with a certain threat of death. However, problems can occur that can lead to death. Colds and such are not an issue for us, as they are in CF. No immune-boosting meds, no surgical masks, no ports, no vests, no breathing treatments.

I did see a parallel that was relevant at the time. I was not implying that SB and CF weere the same type of condition.

I hope I didn't offend. I was just drawing a comparison because of my personal connections to SB (having it) and CF (losing a friend to it and having another with it, being treated at UPMC)

The post I wrote that you refer to:

It seems to me there are no good stats on this, and I've just been kind of curious lately about it. Spina Bifida is not treated at terminal, as, say cystic fibrosis is. But occasionally, it does seem people do pass away kind of young, as in a 21/f who was otherwise a healthy sb, due to a blood clot.

[Gymp]

I dunno about Spina Bifida not effecting the major organs of the body...
When I was born I had three holes in my heart (blue baby) and my left kidney didn't work at all,at the time they called it a floater.I had major heart surgery to patch up the heart when I was about 4 years old and the kidney was removed round about the same time,I think,I don't remember much from that far back.

Was this coincidence,I'll never know...

Gymp

[Dodger67]

Well I had a bicuspid Aorta valve. It became apparent (in a big way!) about 3 years ago. I had surgery to fix it 2 days after diagnosis.
I specifically asked if there was any connection to SB - they said definitely no, it hits about 1 in 10 000 men (about half that rate in women) and is not connected to any other congenital conditions.

[eng188]

Yeah, I can't see any cardiac connection whatsoever. Gymp, as far as kidney issues...I just don't know. I do know that folks with SB do have urinary issues. And the kidney is part of that system. However, I think the kidneys suffer over time due to the effects of SB. I don't think it's more direct than that. That is, if you are born with your kidneys shot, I think that's a separate issue. I think most kidney/urinary issues with SB are over time, and an effect of SB, not a primary part of it, like, say, the spinal damage itself.

Just an idea. I never know SB would be a lifelong education for me. :D

[susieunderpants]

My sister passed away from complications with Spina Bifida in 2001, she was 17. She had multiple shunt failures due to an infection that the doctors could not find, so she was receiving shunt replacements almost on a yearly to six month basis. They FINALLY after years found a blood infection they could treat to replace her new shunt. The night before her operation, her heart stopped and before the doctors noticed she was brain dead.

We were told her life expectancy was normal. I wish that was true. Almost one year later to the date her best friend of 15 years who also had the same form of SB passed away at 18 of the very same thing.

Looking online you see different doctors opinions, but I just don't believe that the expectancy is normal when you have bladder, bowel, kidney and/or shunt issues with SB.

I wish it was different and more awareness and research was out there for SB.

[angel]

Hi,

I am so sorry to hear about your sister. I knew a girl that like me had SB and she died at the age of 20. She had a lot of problems with her shunt and kidney issues that they never seemed to be able to get under control.
More times than not the life expectancy is normal but sometimes the ones we love are taken to soon.

Angel

[c4sb2010]

My Daughter only made in a litle over 8 years. We did take great care of her but she somehow got a hold in the stomach and got sepsis. She was recovering nicely but then her kidneys shut down and she died from renal failure and there was nothing we could do. She did not die of anything related to S.B. so as long as you take care or yourself or your child they shuld live a long life. Most people with S.B. die from infections that get septic.

[c4sb2010]

My sister passed away from complications with Spina Bifida in 2001, she was 17. She had multiple shunt failures due to an infection that the doctors could not find, so she was receiving shunt replacements almost on a yearly to six month basis. They FINALLY after years found a blood infection they could treat to replace her new shunt. The night before her operation, her heart stopped and before the doctors noticed she was brain dead.

We were told her life expectancy was normal. I wish that was true. Almost one year later to the date her best friend of 15 years who also had the same form of SB passed away at 18 of the very same thing.

Looking online you see different doctors opinions, but I just don't believe that the expectancy is normal when you have bladder, bowel, kidney and/or shunt issues with SB.

I wish it was different and more awareness and research was out there for SB.

Be thankful..my little girl only got a little over 8 years..but both are so tragic...

[Emm]

I am now 75 - 76 in August. I don't have a lot of the complications that a lot of you seem to have apart from always having had various kidney infections. I too used to be very worried about dying when I was very young and had no-one I could talk to about it. However as I got a family to look after and other events took over my time and considerations this worry went into the background. Now I find myself contemplating the fact that I may not be here very much longer and I get almost panicky about it! But it's no good , it won't alter matters unfotunately, so it's best to spend as much time doing things you enjoy instead of fretting.:26aa:

[eng188]

My sister passed away from complications with Spina Bifida in 2001, she was 17. She had multiple shunt failures due to an infection that the doctors could not find, so she was receiving shunt replacements almost on a yearly to six month basis. They FINALLY after years found a blood infection they could treat to replace her new shunt. The night before her operation, her heart stopped and before the doctors noticed she was brain dead.

Wow! I'm 34 and last had a shunt revision in 1988. I've never heard of replacements every single year or more. I know that I'm on the lucky side in that department. I'm sorry to hear the shunt was so problematic.


We were told her life expectancy was normal. I wish that was true. Almost one year later to the date her best friend of 15 years who also had the same form of SB passed away at 18 of the very same thing.

What was her situation? Repeated shunt issues as well, or other things like kidney/bowel?


Looking online you see different doctors opinions, but I just don't believe that the expectancy is normal when you have bladder, bowel, kidney and/or shunt issues with SB.

For most cases, I absolutely agree. Not everybody has these problems, but for those that do, attention needs to be paid, otherwise, terrible things may happen.


I wish it was different and more awareness and research was out there for SB.

I'm tempted to agree. It seems like all sorts of info is out there, but it needs to be brought together from time to time, and of course expanded.

Welcome. Ummm...can I just call you susie, or do you need the full name?

:signs120:

[schenry]

Great question and great answer. I have to say I agree with you when you said that our bodies simply shut down with age. We will all die at some point. This is an ugly truth to what lies ahead. It is still possible for us to delay and prevent some things that will accelerate this though. It is also important to cherish the time we do have and not dwell on what we cannot control. Control is an illusion. Our babies with spina bifida require just as much care as any other child + a few more things. It is important for all of us to make sure we are on top of their medical care and doctors. We need to be our own advocates.

[Emm]

I would agree with that.
Having had a very bad first few months of my life, so I'm told, at deaths door I have not had any other problems as regards sb. However, the problem I did have was having a heart murmur which was treated as very serious then and I was never allowed to do anything very strenuos. These days it is of very little concern most of the time.
Regarding the "dying" problem, it's something I have always been troubled with and from a very early age too. These days at my age of 75 it is even more prevelant in my mind and I have to make myself think about more positive things, otherwise I would end up going into a bad depression and what's the point of doing that to myself.
As for malfunctions of kidneys etc., now being diabetic that's a problem for kidneys and the like. Getting a good diet and sticking to it is my biggest battle.:help:

:peace:

[Vega]

I think people with SB need to take better care of their health than people without SB. But if you do eat healthy and take good care of your health, there's no reason you can't live to be an old man or woman. I always follow the mantra to live today as if it is your last.

[trekman]

Sadly my best friend for the last 28 years passed away on Wednesday. She had SB but not hydrocephalus. She had various orthopeadic problems as well as only one kidney (which she was given as a transplant 14 years ago). Apparently she developed a blood disorder and because of her anti rejection medication she was unable to fight this illness. She was 43.

[Avocado Baby]

I'm very sorry to hear about those of you who have lost loved ones. It's tragic.

I'm 28 and was generally very healthy up until about 3 years ago when I had my spinal fusion extended and moved out on my own. Now I get more UTI's. It might be down to loss of function...might be partly diet. Not sure.

My life expectancy isn't something I've worried about. I am a big worrier though and tend to worry about the things that are happening right now and the effects they're having on me.

[Bev]

Spina Bifida is not degenerative, it doesn't get any worse, unless of course like previous posters have said, you dont take care of your kidneys or shunt. Just take care of yourself and you should be able to live a normal happy life just like any other human being.

[mumtotwo]

Spina Bifida is not degenerative, it doesn't get any worse, unless of course like previous posters have said, you dont take care of your kidneys or shunt. Just take care of yourself and you should be able to live a normal happy life just like any other human being.

bev just answered the question i have ben wondering about the past while. Do the conditions of sb get worse as you get older. Alot of peopke here have been taking about being in pain, sore backs etc, r they used to be able to walk a bit but now use a chair so i thought that it it does get worse ?

[LisaJoy]

From a medical standpoint, I don't think the condition worsens (unless there's tethered cord involved or an equipment failure, like Gymp's broken Harrington rod). However, I do think the normal issues that arise as we get older are exacerbated by the sb. And tethered cord is a big question mark for all of us, because it does cause progressive neurological damage. However, for people who start out as wheelchair users, tethered cord is not as big of an issue, because the damage is already done -- you can't make paralysis worse.

There are also niggling problems that come with extra wear & tear -- my good foot has problems because it works overtime to compensate for my weak right foot. And my left thumb is always sore because of my crutch. I know that people can wear out their shoulders with crutch use, too, especially if they are totally dependent.

There really hasn't been any long term study on how people with sb age.

[Dodger67]

I'm starting to be more careful about my shoulders and arms.
I'm waiting for a new wheelchair thats half the weight of my current one so that its easier to handle, particularly lifting in and out of my car.
I'm 42, healthy, strong muscular build, fulltime wc user, myelo at L3.

[Cara]

I fell in love with a guy a while back he has spina bifida and we were talking earlier about his life exspectancey (sorry for the bad spelling a dyslexic talking here). He was saying he had looked it up and found out that he will die young. He wouldn't say what kind of age group but being me I had to look it up. I have to say from reading the posts here I feel a little better because I couldn't imagine my life without him. I personally believe that life is for living and anything can happen to any one of us at any time. I do have one major concern at the moment and that's if something happened to him how long would it be before I found out we don't live together and his family don't know about me not that I think his family should know about me just yet since we haven't even decided on where we're going yet. The only thing I do know is that I love him and I always will. I just wish I could say something to him that would stop him thinking about the length his life could be. I would love to hear any thoughts on this manor thanks.

Kind regards

Cara :3a:

[chandrick]

About the kidney thing..My daughter has an underdeveloped left kidney..The dr's never say to much about it even when I ask...anyone else ever heard of this with sb? Is it 2 seperate issues or does it go hand in hand??? I'm kinda worried about it. She gets ultrasound on the aug. 9th hopefully I find out more about it.

[dahliafaolan]

Oh I've definitely heard of it. I have it too. It's fun to watch the renal scans as they're being done. I always say that the pictures look like Popeye's face because of the smaller kidney. I'm not sure if this is a thing that's related to Spina Bifida, but for me it's never really been a big concern. I mean, I have to have renal scans at least once a year to check my kidneys' function, but I don't think that's due to the smaller kidney. I had kidney reflux for years and I still have a little bit of hydronephrosis. There was also a time when the larger kidney was doing most of the work but now that I'm older and able to take better care of myself, they're at nearly equal rates. I think the larger one does 60% and the smaller one does 40% of the work. Which I'm pretty sure is within normal limits for the average person. I'd say if the doctors aren't worried about it, you shouldn't be either as long as they're doing regular scans and stuff like that to make sure she's ok.

And just in case she's never had one, a renal scan isn't bad. All they do is inject some nuclear medicine and maybe a diuretic in whatever vein they can and make her lie still for about 45 minutes while the machine does the scanning. My doctor also makes me catheterize somewhere during the process so he can see how the kidneys and bladder react after the bladder's been emptied. The whole thing takes maybe an hour. The worst part for me was always just finding the vein, but now I have a port so that's not an issue any more. Now it's just the diuretic that's annoying. My sphincter's pretty much useless so I dribble the whole day even with the cathing, but I always plan the scans on a day where I don't have to do anything else outside the hospital so this isn't an issue.

[Selkie]

Nanna, Eng188 was saying that Spina Bifida is not like Cystic Fibrosis, in that SB is not terminal

[Dodger67]

Ummm, I hate to burst your bubble but if you look carefully you might notice that you have replied to a post that's more than 2 years old!

[Selkie]

I know that.. but this is my first time here... and like you I thought others may still frequent this site, so posted anyway. However I read more and realised someone else had already addressed the issue.

[Selkie]

Mumtotwo.....
No, Spina Bifida by nature is not degenerative.. however those aches, pains, wasting you may have heard about happen through either excessive use of one particularly body part over years (for example, at 33 I now have osteoarthritis in the spine.. have always been very active manual wheelchair user - spine probly getting old!) or at the other end of the scale - a lack of use of body parts (eg - leg muscles weaker due to choosing wheelchair more as an adult.. which is common.. I used to be able to weight bare on legs for longer).

Not only can these issues be prevented or lessened with enough exercise, and in moderation, into adulthood, but also these things arent specific to SB.. any able-body can be effected in the same way by overusing, misusing, or neglecting muscles etc.

[Dodger67]

Welcome on board! :happy065:
Hope you'll like it here.

[LisaJoy]

Welcome, Selkie!

[Lifeisgood]

Welcome Selkie! Glad to have you on board!

[Selkie]

Thanks guys

[eng188]

Welcome, and thanks for defending me, lol. I admit, sometimes comparisons can be a touchy subject, especially if done wrong.

[irisbaby1]

Rory, my 12 year old daughter has chronic renal impairment with 25% function in both her kidneys. She is very small, but proportional. She walks and looks regular as any other kid. SHe cries at night till her face is unrecognisable and then comes out of her room and tells me how she fears dying. She says she doesnt want to be nothing. Or not exist. And I am helpless to explain or give her hope when I am so unsure myself of what lies ahead. I just say even though we all die at some stage, we all feel fears, but I tell her anyway that she will live as long as anybody else and more so as she is always at the doctors being kept an eye on. But god it is the most distressing situation sometimes................
Hi my name is Eren and was very moved reading what you had posted...I am 36 have two healthy and happy children...I have spina Bifida....I remember as a young girl struggling with these same issues...it's hard with the challenges people like us face. My best advise is to encourage her and support her and keep reminding her that it's going to be okay...if you would like you can find me on facebook "diablita mosqueda" and show her that I am okay and an adult she needs to see that we can make it....it's hard to live like this but its possible to be happy and live a long time....it's rough right now but it will get better....it does get better....trust me...

[irisbaby1]

ummm, i hate to burst your bubble but if you look carefully you might notice that you have replied to a post that's more than 2 years old!

yes i know but maybe they will look at it again

[Sshdw101]

I'm 36 years old with spina bifida and always surprise doctors that I'm still here. I was wondering what the general life expectancy is. I know I have outlived all the spina bifida children who I knew growing up but other than that I know nothing. Just want some answers.

[steffi with Amaya]

Here in Germany, nobody talks about reduced life-expectancy associated with spina bifida.
A children's surgeon in Austria we first saw said: Before the kids died of problems with the hydrocephalus or kidney failure - but this isn't the case anymore as these issues are being monitored and treated nowadays.
This was the same person who tried to convince us that not having a baby with spina bifida would be an option worth considering btw.

There might not be that many really old people with SB today, because back then shunts hadn't been invented or used yet. And 60 years ago medical treatment wasn't where it is now!
But I don't see why someone being born or living with SB nowadays and sees doctors frequently would have an enormously increased risk of not getting old.
Of course there can be problems with the shunt... of course you might have to be a bit more careful but there are always risks... even if you are born healthy.
Think about the people around you...
Do you know people who died being younger than 30?
I think many people do...

[Dodger67]

I'm very surprised that your doctors are surprised.
Also that you have outlived others your age because at mid 30s most should still be alive. What did they die of?

Where do you live? A high death rate for people with SB born after 1970 is possibly an indication of low quality health care - it certainly shouldn't be happening anywhere in the "first world".

[dahliafaolan]

Here in Germany, nobody talks about reduced life-expectancy associated with spina bifida.
A children's surgeon in Austria we first saw said: Before the kids died of problems with the hydrocephalus or kidney failure - but this isn't the case anymore as these issues are being monitored and treated nowadays.
This was the same person who tried to convince us that not having a baby with spina bifida would be an option worth considering btw.

There might not be that many really old people with SB today, because back then shunts hadn't been invented or used yet. And 60 years ago medical treatment wasn't where it is now!
But I don't see why someone being born or living with SB nowadays and sees doctors frequently would have an enormously increased risk of not getting old.
Of course there can be problems with the shunt... of course you might have to be a bit more careful but there are always risks... even if you are born healthy.
Think about the people around you...
Do you know people who died being younger than 30?
I think many people do...

Of all the people I know that died before 30, none of them had SB. (The youngest SB passed away at 41, but it was from uterine cancer, not anything having to do with their SB.

[Justy Me]

I knew of only two people who passed away who had SB but from what I saw of them, negligence of their health was to blame. One girl basically refused to cath and she had constant kidney infections as a result. The other one was the same and she had shunt malfunctions as well. The former mayor of Chicago had a son with SB who passed away at the age of 2 but he also had secondary issues to contend with.

[sean]

"Spina Bifida by nature is not degenerative", I beg to differ, I think in my case it is, my ageing rate is greatly increased by Spina Bifida. This is an area yet to be realised, and currently is only debatable.
I'm knocking off at least 10/15 years because of SB.


Sean.

[Craig]

"Spina Bifida by nature is not degenerative", I beg to differ, I think in my case it is, my ageing rate is greatly increased by Spina Bifida. This is an area yet to be realised, and currently is only debatable.
I'm knocking off at least 10/15 years because of SB.


Sean.

I guess I have some "qualifications" on this subject. I'm 57 with spina bifida. Never had, or needed, a shunt so that sounds like a plus (from what I've been reading in this thread). I certainly have the same, or similar, problems that others' have: bowel & bladder issues and pains in back/legs. I was born with 1 kidney, but its doing well (as per my urologist at last visit). I get maybe 1 or 2 UTI's a year. I always have to be on-guard, though. A UTI that I don't act on, a cut or scrape that I don't feel that gets infected, sitting way too long in my chair, and other stuff are all things that I have be able to deal with quickly and properly. I know that these things can cause severe illness and even death.

Some of pains in my back and legs that I have now I see people getting that are 15-20 years older than me. So my thinking is that spina bifida can contribute to illness and be more and more dibilitating over time.

I've alway been very mobile -- able to use my upper body strength to compensate for other weakness. But, now that I'm older and experience shoulder, elbow, arm, and hand pains, I have to remind myself to cool it. Maybel I have strong arms, but arms weren't designed for walking.

When I was a teenager my mother mentioned that the doctors said I wouldn't live past 4 years. I don't know who those doctors are, but if they are still alive today, I'd like to have a chat with 'em.

[Gymp]

"Spina Bifida by nature is not degenerative", I beg to differ, I think in my case it is, my ageing rate is greatly increased by Spina Bifida. This is an area yet to be realised, and currently is only debatable.
I'm knocking off at least 10/15 years because of SB.
Sean.

Hate to say it but...I tend to agree with Sean's thoughts!
Being in my mid 50's my body rattles to no end and the rattling is becoming a lot louder by the year.

Hopefully I'll make it past my "best before date"

Gymp

[Mustang Sal]

"Spina Bifida by nature is not degenerative", I beg to differ, I think in my case it is, my ageing rate is greatly increased by Spina Bifida. This is an area yet to be realised, and currently is only debatable.
I'm knocking off at least 10/15 years because of SB.


Sean.

I'd always thought that SB by nature wasn't degenerative, so was a bit shocked when a urologist I saw recently regarding my worsening bladder symptoms told me that 'spina bifida is known to progress and evolve over time'. Also, a couple of spinal surgeons i've seen mentioned something like the 'natural development' of my condition causing worsening problems with my nerves. I don't think they're referring to my cord becoming tethered either, because it's been tethered for many years. I don't really know what any of that means for me regarding future outlook, and to be honest I don't think they do either. All my parents and I have ever been told whenever a particular problem has reared is 'we don't know' and 'we'll just have to wait and see what happens'. I know they don't see people with my particular anomaly every day, so I guess i'm a bit of an oddball who 'broke the mould' :-P

[Dodger67]

I can only speak of my own experience. My general health is still good, SB has not affected it.
I supose the fact that I don't have HC or Chiari is significant and also that my kidney checks over the years have always been the same too - good. I've only ever had one kidney infection.
I'm not as fit and physically active now as I was in my childhood and teens - but that's a common complaint for fourty-something people and not specifically SB related either.