Spina Bifida Occulta

[Holly]

Spina Bifida Occulta refers to a group of conditions involving the spinal column—a structure made of bones called vertebrae. The spinal column is responsible for supporting the skeleton and protects the spinal cord, which is the cable of nervous tissue that transmits information between the brain and the body. Spina Bifida Occulta is a common condition, occurring in 10% - 20% of otherwise healthy people; it is often found incidentally during a radiogram (X-Ray) of the lower back. By definition “Spina Bifida Occulta” means “hidden split spine.” The term is misleading because it is used to describe several conditions. The most frequently seen form is considered harmless and is simply a variant of normal vertebral (bone) anatomy. In this condition, parts of the bones of the spine called the spinous process and neural arch appear abnormal on a radiogram. Usually, the spinal cord, and spinal nerves are not involved. Isolated bony Spina Bifida Occulta (without an underlying spinal cord abnormality) does not lead to problems with the nervous system. Some radiologists have resorted to calling this situation a vertebral fusion defect, thus taking away the reference to Spina Bifida. However, those (much less common) related conditions also called Spina Bifida Occulta that affect the spinal cord and are the ones can have potential health consequences. These conditions include:

Condition & Definition:
Tethered spinal cord
The lower end of the cord has an abnormal attachment to surrounding structures. The spinal cord gets stretched and damaged

Lipomyelomeningocele and lipomeningocele
A tethered spinal cord attached to a benign fatty tumor in the back

Thickened filum terminale
A thickening in the end section of the spinal cord

Fatty filum terminale
A fatty lump at the inside end of the spinal cord

Diastematomyelia (split spinal cord) and Diplomyelia
A spinal cord split in two, usually by a piece of bone or cartilage

Dermal sinus tract (with involvement of the spinal cord)
A connection between the spinal canal and the skin of the back that appears as a band of tissue to the outside

These conditions may occur without bony abnormalities of the vertebrae. If any of these associated abnormalities of the spinal cord occur, signs and symptoms related to the nervous system may occur.


These signs and symptoms include:
Pain (in the back and /or legs)
Weakness in the legs
Numbness and/or other changes in sensation in the legs and/or back
Orthopedic deformities in the legs, feet, and back
Change in bladder or bowel functionIndividuals with the likelihood of an underlying spinal cord abnormality should receive prompt medical/surgical evaluation to prevent the neurologic problems listed above. How can individuals who might need this type of evaluation be identified? The appearance of the skin overlying the lower back provides clues as to whether or not there is likely to be a spinal cord abnormality present underneath. About 80% of people with spinal cord abnormalities will have some type of skin abnormality overlying the defect.

These skin defects include:

Hairy patch
Fatty lump
Hemangioma—a reddened or purplish spot on the skin made up of a collection of blood vessels
Dark spots or biri the blue-black marks called Mongolian spots
Skin tract (tunnel) or sinus—sometimes noted on the back as a deep dimple—especially if it is too high, i.e higher than the top of the buttocks crease, or if its bottom cannot be seen
Hypopigmented spot—an area with decreased skin colorPeople with these kinds of skin abnormalities of the lower back, whatever their age, should seek evaluation by a physician knowledgeable in malformations of the spinal cord. Not every person with a skin defect of the lower back has Spina Bifida Occulta. This is particularly true for those with sacral dimple. Studies such as an ultrasound (only useful in newborns) or MRI of the spine may be requested to evaluate the underlying structures.
One final issue regards the inheritance patterns of Spina Bifida Occulta as well as Spina Bifida in general. Myelomeningocele (or meningomyelocele), an open form of Spina Bifida (where the spinal cord abnormality is actually visible through an open skin defect), occurs more often in families who have already experienced this condition.
The risk of recurrence in those who have a first-degree relative (parent, sibling) is 5-10 times greater than that in the general population. The risk of having other forms of Spina Bifida, when a case of myelomeningocele has occurred already in the family, is probably higher than in the general population. However, the genetic risk of recurrence with symptomatic forms of Spina Bifida Occulta is uncertain. Medical evaluations and genetic/pregnancy counseling should be done on a case-by-case basis with knowledgeable professionals. In all circumstances, all women of childbearing age should consume 0.4 milligrams of folic acid daily.

This information does not constitute medical advice for an individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.



SOURCE (http://www.sbaa.org/site/c.liKWL7PLLrF/b.2700275/k.5F64/Spina_Bifida_Occulta.htm)

[Renuka]

The information shared on Spina Bifida Occulta is good,i suffer from Spina Bifida Occulta Lipomyelomeningocele,I was been diagonsed and operated for the same in January 2001,since last year i feel a small lump bulging from from lower back just above the scar of the my first surgery.Though the size of the lump is very small as compared to what i had earlier.I am kinda scared with the idea of going under the knife again,lately while driving the car i feel my left foot becomes numb after some time.What i want to know is do these lumps keep forming after a certain time span despite of removing them surgically?:confused:

[Dodger67]

Good info. Thanks

[LisaJoy]

The information shared on Spina Bifida Occulta is good,i suffer from Spina Bifida Occulta Lipomyelomeningocele,I was been diagonsed and operated for the same in January 2001,since last year i feel a small lump bulging from from lower back just above the scar of the my first surgery.Though the size of the lump is very small as compared to what i had earlier.I am kinda scared with the idea of going under the knife again,lately while driving the car i feel my left foot becomes numb after some time.What i want to know is do these lumps keep forming after a certain time span despite of removing them surgically?:confused:

I have the same condition, Renuka, and I also have had a small lump form since my last surgery -- my doctor assures me that it is scar tissue. Mine seems to be superficial (i.e., it moves around if you touch it) and is above the defect at the end of the surgical scar. I know that deeper scar tissue, though, can cause retethering. If the numbness in your foot occurs only when you drive, it might be as simple as the car seat impinging a nerve -- you might just try a seat cushion of some sort. But if you have more significant symptoms -- more persistent numbness, pain, or a change in bladder or bowel control -- you should see your neurosurgeon to rule out retethering. They're unlikely to recommend additional surgery unless you have major symptoms, though, because multiple detethering surgeries have diminishing returns and increased risk of nerve damage (so I've been told). But if you experience changes in bladder function in particular, you should also consult a urologist, because any worsening of neurogenic bladder can cause kidney damage. My bladder function has been stable for six years but I still see a urologist and have a renal ultrasound twice a year.

[Mustang Sal]

Hi,

I've been lurking for a while so decided it was about time I said hi to you all!

I'm Sally, i'm from the UK (any other Brits on here?) and I have SB Occulta - well, a form of it anyway. My particular 'brand' is Diastematomyelia L1-S1 (complete with hairy patch and dermal sinus) with tethered cord (detethered when in 1984, when I was 3). I have quite a few bony abnormalities, and have developed various twists and turns in my spine as i've got older (lumbar kyphoscoliosis due to hemivertebra, with a reversal of the normal kyphosis/lordosis curves - so basically it curves out at the lumbar region and in at the thoracic region - something got a bit confused somewhere along the line!) I had a big op 10 years ago to decompress and fuse me, but they couldn't straighten me due to the diastematomyelia, so i'm stuck with my weird twisty spine!

Neurologically things have always been a little bit weird (my dad always told me I was just wired up strangely, like a dodgy Ford lol) but i'm lucky in that I can walk, albeit slowly. I have what is known as 'pes cavus' feet, worse on the right and foot drop on also the right, for which I wear an AFO. I have very patchy sensation below the waste, weakness below both knees and muscle atrophy (something that has recently started to get worse, along with strange nerve pains, so i'm waiting on the results of a recent MRI to perhaps shed some light on what's going on).

Anyhoo, I think i've covered just about everything (sorry for the essay). I look forward to getting to know you all :)

Oh one more thing - if any of you have, or know someone who has, Diastematomyelia i'd love to hear from you. I've only ever heard of one other person with this condition, and there has to be more people out there with it somewhere!

Thanks for reading!

[Gymp]

Hi Sally,and welcome.I too had a twisty turny back,Hunching over forward up top and my lower back curving in to the right.They installed 2 Harrington rods,top and bottom,to straighten me out.It worked great for 20 some years but one broke.The lower back is starting to veer in again and my left side lower ribs are banging into my left side of the hip.I'm still up and about though.I've also had surgeries on both feet ~13yrs old and detethering at 16yrs old.

Sorry,I don't know anyone with Diastematomyelia other than you.

Gymp

[LisaJoy]

I have diastematomyelia -- I've referred to it before in these forums as split cord malformation (that's what it is more often called now in the US -- Type I and Type II; one is diast. and the other is diplomyelia.) Plus lipomeningocele and sacral agenesis, and kyphoscoliosis secondary to all of those. I, too, have pes cavus feet (and claw toes) -- foot drop, loss of sensation, and wasting on the right, for which I wear an AFO. I did not have the typical hairy patch, though, or any skin tag except the midline dimples and very obvious bony malformations (the spina bifida) and lipoma. Had my first surgery at 2 (in 1966 -- they did not know I had split cord; it was 1998 before I had my first MRI and was diagnosed. I've had two surgeries since).

So there you go! Now you know someone else! And if it weren't for our age difference (and the minor detail of the Atlantic ocean between us), we could almost be twins separated at birth!

[Dodger67]

Wow Lisa, you're a mess! :dance2:
I don't think I've ever seen so much polysyllabic latin terminology applied to just one person!:sign0023:
If you were a car you'd have been written off and scrapped as unfixable!
But we still like you :happy065:because you're unsinkable! :2aa:

[Mustang Sal]

Hi Sally,and welcome.I too had a twisty turny back,Hunching over forward up top and my lower back curving in to the right.They installed 2 Harrington rods,top and bottom,to straighten me out.It worked great for 20 some years but one broke.The lower back is starting to veer in again and my left side lower ribs are banging into my left side of the hip.I'm still up and about though.I've also had surgeries on both feet ~13yrs old and detethering at 16yrs old.

Sorry,I don't know anyone with Diastematomyelia other than you.

Gymp

Hi Gymp,

Thanks for the welcome :) So you have SBO then? I've read a lot about Harrington rods and although they obviously served a purpose (and have helped innumerable people over the years), i'm kind of glad they never put any in me! But then I guess breakage can occur in any type of rod, although I would be surprised if it ever happened to mine as it's rather short (only a couple of inches at most). My lumbar curve is fused at whatever degree it was when I was 17 - probably about 50 degrees, but i'm not sure, so I know that will never be straigtened. I do sometimes worry that the curve will worsen as I age, because like you, my ribs grind on my pelvis, especially on the left - it would be unbearable if I 'shrunk' any more!

Just wondered, is there any sort of gallery on here? I like looking at pictures :)

[Dodger67]

The home page displays a random sample of all the gallery photos.
Your own gallery is on your profile page in a box on the right side of the page.
Click on a username to view the profile.

You can also include a pic directly in a post by using the "insert image" button to place an image that is already hosted elsewhere on the net such as a public gallery such as flikr or photobucket.

[Mustang Sal]

I have diastematomyelia -- I've referred to it before in these forums as split cord malformation (that's what it is more often called now in the US -- Type I and Type II; one is diast. and the other is diplomyelia.) Plus lipomeningocele and sacral agenesis, and kyphoscoliosis secondary to all of those. I, too, have pes cavus feet (and claw toes) -- foot drop, loss of sensation, and wasting on the right, for which I wear an AFO. I did not have the typical hairy patch, though, or any skin tag except the midline dimples and very obvious bony malformations (the spina bifida) and lipoma. Had my first surgery at 2 (in 1966 -- they did not know I had split cord; it was 1998 before I had my first MRI and was diagnosed. I've had two surgeries since).

So there you go! Now you know someone else! And if it weren't for our age difference (and the minor detail of the Atlantic ocean between us), we could almost be twins separated at birth!


Hi Lisa

Finally, someone else with it!! I have heard the term Split Cord Malformation, which I actually prefer - certainly makes it easier to explain to others as the word is pretty self-explanatory! Wow, you went a long time without diagnosis - they diagnosed me almost from birth, so I was very lucky. I think the types your describe refer to whether or not the split cords reside in a single dural sac, which is harder to diagnose and not quite so serious (type I) or two completely seperate dural sacs, with a bony or fibrous spur seperating them (type II, as I had - this formed the tether which was removed when I was 3). Diplomyelia is, I think, 'true' diastematomyelia, as the seperated cords don't merge back into a single cord, as is the case with types I and II.

I also have claw toes on my right foot - until I developed permanent paralysis in that foot, they use to cause me all sorts of problems! Blisters, corns, calluses etc. The big toe was the worse, so I had surgery to straighten it so now it's completely fused. They don't really bother me anymore, except when i'm dragging my foot around if i'm walking barefoot - I have tripped over it more times than I care to remember!

Do you have a short torso, one leg longer than the other, hemivertebrae? Sorry for all the Qs!

Also can I just ask, do you get any sort of nerve pain - numbness, burning, hypersensitivity? I used to get very bad muscle spasms in my right leg before my decompression surgery, but even now I still get them sometimes, although they don't hurt as much. I'm just a bit concerned at the pain i'm getting now as I went almost 10 years without any back issues at all, so I was effectively discharged - the last time I got weird pains like this it ended in a 14 hour operation, so i'm understandably on edge about it all. Anything you can share with me as an 'older' person with this condition (of course you're not 'old', you're in your prime, right?) I would greatly appreciate. The doctors could never really tell me what the future would hold - in fact, every step along the way for me has not been typically 'textbook', so it's always been a bit of a wait and see job - makes it hard to try to research things yourself when your condition differs so much from the 'norm' iyswim.

Anyway, i'm glad I finally came out of my hiding place - at first I thought this place was just for people with myelo-type SB, and so felt a bit of a fraud as I can actually walk, but then I saw some posts by other people with SBO so thought what the heck, i'll join in. Until 3 years ago, I never even knew what I had was a form of SB - it was a throwaway comment by my GP (when discussin UTIs, which have plagued me all my life) that I first heard the term applied to me (yes, that's even after all the surgeries, all the procedures, scans, tests and consultations through the first 24 years of my life!) That prompted me to get copies of my medical notes which was a total revelation to me! Years ago you weren't allowed access to your notes in the UK, but some government legislation meant that that all changed, and thank God it did, or i'd still be in that scary place called 'the dark' lol.

I've rambled enough for one day, so think i'll go do the washing up or something now... ;)

[LisaJoy]

Dodger - the medical shorthand for my "collection" is "multiple anomalies of the lumbo-sacral spine." As I was growing, they always just said I had spina bifida and I went to the spina bifida clinic. I was well into my 30s before I was aware of all the fine distinctions.

So, back to Mustang Sal --

We take a broad view of the term sb around here -- it traditionally gets used as a synonym for myelomeningocele, but it actually is a category of neural tube defects that includes all the other stuff that Holly describes at the top of this thread. But the imprecise terms can be confusing -- for example, I've seen SCM Type I & II used to refer to the two variants, diastematomyelia and diplomyelia, and I've seen it used the way you describe. At any rate, the differences don't matter that much when it comes down to daily living.

I do have a short torso, my right leg is shorter than the left -- I haven't seen the word "hemivertabrae" in my medical records, but I have seen "block vertebrae." I lost most of the function in my right leg below the knee after my last surgery; at that point the claw toes and high arch relaxed and the calluses went away (along with most sensation!). But then the left foot got worse; the claw toes give me no end of trouble, especially the big toe. So I'm interested that you were able to have your's fused. They told me nothing could be done about it. Does it hamper your walking at all? I, too, have a tendency to trip over the right foot if I'm walking around the house barefoot. I never go outside without the AFO on.

As far as pain -- I get burning pain in my lower right leg that I'm sure is neuropathic. I'm mostly able to ignore it. I also have constant pain in my left foot that I don't think is neuropathic (b/c it responds to ibuprofen). Haven't been able to get a diagnosis, though.

My last two surgeries have been to preserve bladder and bowel function. Since I lost a good bit of leg function after the last one (I used to require no AFO or crutch), I would be hesitant to have back surgery again unless it was absolutely necessary. From what I've read, the law of diminishing returns comes into effect with untethering surgery as you get older. But you are still quite young, so there may be additional surgery in your future. But if I were you, I'd avoid it if possible.

Lisa

[Mustang Sal]

We take a broad view of the term sb around here -- it traditionally gets used as a synonym for myelomeningocele, but it actually is a category of neural tube defects that includes all the other stuff that Holly describes at the top of this thread. But the imprecise terms can be confusing -- for example, I've seen SCM Type I & II used to refer to the two variants, diastematomyelia and diplomyelia, and I've seen it used the way you describe. At any rate, the differences don't matter that much when it comes down to daily living.

Yes, it is confusing isn't it! Ah well, horses for courses as they say :)

I do have a short torso, my right leg is shorter than the left -- I haven't seen the word "hemivertabrae" in my medical records, but I have seen "block vertebrae." I lost most of the function in my right leg below the knee after my last surgery; at that point the claw toes and high arch relaxed and the calluses went away (along with most sensation!). But then the left foot got worse; the claw toes give me no end of trouble, especially the big toe. So I'm interested that you were able to have your's fused. They told me nothing could be done about it. Does it hamper your walking at all? I, too, have a tendency to trip over the right foot if I'm walking around the house barefoot. I never go outside without the AFO on..

This sounds so much like me! I wear a heel lift along with my AFO to counteract the difference in leg length, which is due to both the SCM and the scoliosis. My motor function went as a result of the surgery, but for all I know it might have happened anyway as my nerves were being compressed. The toe surgery was done as part of a tendon transfer (to stop me walking on the lateral border of my foot) when I was 13, and was actually a relatively minor op (well, compared to any spinal ops anyway) It really improved my walking and comfort when wearing shoes - like you say, the constant calluses and blisters are no fun. I'm curious as to why you've been told nothing can be done. Sure, it's still surgery and no-one wants surgery unless it's really necessary, but it's not MAJOR surgery - I think it only took them a couple of hours to do the tendon bit and place the (removable) pins in there. If you want to research it, type 'Jones procedure' into a search engine - I think this is what it was called. Incidentally I don't actually get much benefit out of my fused toe (or any of the other surgical procedures I had done) because they were all done on the foot which is now paralysed! But they didn't know that would happen at the time, so I got a good few years use out of my improved foot :)

As far as pain -- I get burning pain in my lower right leg that I'm sure is neuropathic. I'm mostly able to ignore it. I also have constant pain in my left foot that I don't think is neuropathic (b/c it responds to ibuprofen). Haven't been able to get a diagnosis, though..

Aah ok. I get very strange 'crawling' feelings in my legs, but not really any pain. Recently the sensation in my left leg has been getting more and more dull, which is worrying. Some parts are completely numb, but then a certain amount is normal for me, so it's hard to tell what's new and what isn't! My left foot also feels weaker in dorsiflexion, but at my last hospital appointment the doctor (who wasn't my surgeon but some other underling) didn't even check my reflexes or muscle strength :mad: I am keeping an eye on this though. The hypersensitivity is over my left hip/iliac area and it drives me mad! Sometime I can't bear to even have any clothes over the area (kind of difficult when you need to go to work or the supermarket hehe)

My last two surgeries have been to preserve bladder and bowel function. Since I lost a good bit of leg function after the last one (I used to require no AFO or crutch), I would be hesitant to have back surgery again unless it was absolutely necessary. From what I've read, the law of diminishing returns comes into effect with untethering surgery as you get older. But you are still quite young, so there may be additional surgery in your future. But if I were you, I'd avoid it if possible.

Lisa

Bladder and bowel issues are something that bother me also. It got worse after the surgery, but i've never really spoken to anyone about it as I find it difficult to talk about. If you don't mind me asking, have you always had these issues or did they develop over time? It's the thing that worries me the most actually, which is why I guess I keep my head buried in the sand (pathetic I know)

The absolute last thing i'd want to go through again is spinal surgery - even at 17, it took me a long time to get over it, although it was successful in terms of pain relief and cord compression. I live alone, so I have to work to pay my bills, I need my car to get around etc so to be out of action for months terrifies me. I'm hoping that whatever is going on with me now can be easily explained and treated conservatively, with injections or physio or something. My 'nerviness' is being successfully controlled by Gabapentin (neurontin) which i'm happy to keep taking as I don't get bad side effects from it. It's a scary time, but what can you do? Just keep on keeping on I guess :)

Thanks for answering all my nosy questions!

[LisaJoy]

You'll find that we talk a lot about bladder and bowel issues in this forum -- it is something that we all share, although we've all been affected in different ways. So this is a safe place for you to share your concerns and experiences.

I always had neurogenic bladder; I've developed chronic constipation over the last 5 years or so, but it is manageable through diet. I've not had fecal incontinence. Bladder issues were always a source of trouble for me growing up -- I used Creed's maneuver to empty it (pressing on it), but I often had accidents. It didn't do much for my social life or my confidence! I began to have greater difficulty emptying my bladder about 10 years ago; that led to the first surgery. Stabilized, then got worse again. FINALLY, after the 2nd detethering surgery (and I wish I'd done this years ago), the urologist had me start self catheterizing and then later I also started taking Ditropan XL (oxybutinin extended release). This has revolutionized my life. I sleep all night without getting up. I can go 3-4 hours without cathing. I can swim without problem. And I'm not having to go to the bathroom every hour and constantly think about the availability of bathrooms. I really feel like I am almost "normal" in that regards now.

Do you cath and/or take any meds? If you don't and you are having problems, I would encourage you to see a urologist and investigate your options. It will really improve your life.

[Gymp]

Hi Sally,this may sound stupid but I'm not even sure anymore which type of SB I have.When I first signed on here I thought I had Meningomyelocele but now I'm not so sure.I've not seen a doctor for anything directly related to SB since I was 18 years old (32 years ago).I've not seen any of my medical records from when I was a child,I'd like to but am at sort of a loss on how to go about finding something from that long ago,I don't know if they even exist anymore.

I do know I was born with a big lump right above the crack of my butt.That lump was of a sort of a translucent colour and if I was tapped there I'd be temporarily paralyzed from the waist down but the feeling in my legs would come back within a few hours.My left leg is considerably thinner than my right one esp. from the knee down. My feet have what I'd call hooked toes.My pinky fingers are hooked as well.I started walking at about 4 years old and I walked on my tip toes,my feet it seemed had no up and down movement and were frozen in the down position.I have no control over bladder or bowel.I was also born with a floater left kidney and it was removed at around 4 years of age.I also had heart problems, my heart had 3 holes in it and was patched around the same time as when my kidney was removed.I also had Scholiosis and the Harrington rods were put in at around the age of 18.The lump above my butt was removed before the back surgery,detether?At the time Harrington rods were all the rage and was quite common in the 1970's for someone in my predicament,I've since found out that their breakage rate is 7 to 10 percent and not a common thing anymore.They did work out well for me for the 20 some years and living with a broken one isn't impossible.I do experience a burning pain in my feet on a regular basis and have a big problem with caloses which keep growing and growing but they're kept in check with the various tools available in stores and sandpaper.

There you have it,my medical history from memory,I may have forgotten one or two things but that's pretty much it.If somebody here could enlighten me to what form of SB I may have I'd appreciate it.

Sorry for babbling on so much.

Gymp

[LisaJoy]

Gymp, I'm guessing meningocele -- maybe lipomeningocele, but since you said the skin covering lump was translucent and the sensitivity to touch, I'll go with meningocele.

I tried get medical records from my first surgery at age 2 at the University of Oklahoma's children' hospital -- they couldn't find any. But I was able to get copies of everything from Scottish Rite, where I started at age 4.

[Mustang Sal]

You'll find that we talk a lot about bladder and bowel issues in this forum -- it is something that we all share, although we've all been affected in different ways. So this is a safe place for you to share your concerns and experiences.

I always had neurogenic bladder; I've developed chronic constipation over the last 5 years or so, but it is manageable through diet. I've not had fecal incontinence. Bladder issues were always a source of trouble for me growing up -- I used Creed's maneuver to empty it (pressing on it), but I often had accidents. It didn't do much for my social life or my confidence! I began to have greater difficulty emptying my bladder about 10 years ago; that led to the first surgery. Stabilized, then got worse again. FINALLY, after the 2nd detethering surgery (and I wish I'd done this years ago), the urologist had me start self catheterizing and then later I also started taking Ditropan XL (oxybutinin extended release). This has revolutionized my life. I sleep all night without getting up. I can go 3-4 hours without cathing. I can swim without problem. And I'm not having to go to the bathroom every hour and constantly think about the availability of bathrooms. I really feel like I am almost "normal" in that regards now.

Do you cath and/or take any meds? If you don't and you are having problems, I would encourage you to see a urologist and investigate your options. It will really improve your life.

Bladder control was always fine when I was a child, but I had constant UTIs. I now know it's because I don't empty properly because the nerves down there can't tell if there's urine left or not, and the leftover urine gets infected if it's left for too long. I just kind of put up with the many trips to the docs and courses of antibiotics adn figured I was just made that way. However, control-wise things got worse after my decompression surgery. For the first few months post-op I had very little control of bladder and bowel, although I too developed constipation which I still suffer from (I put it down to the years I spent taking codeine for pain relief, but i'm not so sure now as I seem to have bowel urgency - if I feel the need to 'go', I know I don't have long to get to a loo because I just can't hold it in). But in a way the constipation makes this easier to deal with because I don't feel the need to 'go' very often (I know this is not good for me, but it's been this way for so long i'm used to it).

My bladder issues are the hardest to deal with. Sometimes it's fine - I feel the need to go, I can hold on for a bit then seem to urinate normally, but most of the time I get a sudden urge to go and it's all-consuming - I can't think of anything else except getting to a loo quickly. I also press on my bladder in order to empty it - I had no idea this had a name! I've done it for so long I guess I thought that everyone does this sometimes. If I don't press, I can sit there for ages and then only a bit comes out, really slowly - there's no real force there at all. I've had more accidents than I care to remember - the worst one than stands out in my mind was in a busy street in San Francisco when I was on holiday with my mum, I just couldn't hold on and once I started, it just all came out. I've never felt so ashamed in all my life. Mum was great about it though, even though i'd never told her about my troubles before then (I think she already suspected though). I've also had accidents in the night, even though I make sure i've 'emptied' as best I could before going to bed. This is just awful and I don't understand why it happens - surely only kids wet the bed?! It makes staying away from home really difficult, but I can't tell my friends so I just go places and hope the worst doesn't happen.

I don't cath or take any meds for it, simply because i've never seen anyone about it because i've been too embarrassed. But i'm slowly realising that I don't have to suffer in silence. I will be seeing my surgeon soon (hopefully) and I think i'm going to have to say something to him, even though the thought terrifies me. Oh but being able to go out without wondering where the nearest loo is, or staying over someone's house or in a hotel without worrying about accidents must be amazing! Time to dig my head out of the sand methinks...

Thanks for helping me express myself on this issue Lisa - i've never told anyone any of this, so it means a lot. It's also comforting to know that i'm not alone :)

[angel]

You are not alone. you are DEFINATLY not alone. I think anyone with SB of any kind will say the bladder issues can be one, if not the hardest problem to deal with.
I have always thought that no matter what type of SB or the location of your leasion we are all pretty much in the same boat! I have been told on an online message board (not this one) once when i was discussing my son's problems with SBO (which the only thing he DOESN"T deal with is paralysis)that he didn't count because SBO isn't the same. The hell it isn't!!!!
I have never discussed a lot of issues with ANYONE that i have discussed on here. I was talking to a friend of mine tonight on the phone that i met at National SB conference and sometimes you just can't fully talk about some of these things with people that aren't affected by it.

Angel

[LisaJoy]

Mustang Sal,

I absolutely guarantee you that your neurosurgeon will NOT be even a little surprised by what you tell him -- he may be surprised that you've suffered so long without saying anything, or that you've never seen a urologist. Also, from a neurological standpoint, it is important for him to know about your bowel and bladder symptoms.

But here is my advice -- don't wait until you see the surgeon. I don't know how your system works over there, but you need to see a urologist. The surgeon's probably going to send you to one anyway. Are you required to have a referral? Then pick up the phone and call your GP and ask for one -- or call the surgeon and ask for one -- right away. Don't phrase it just as a lifestyle problem for you -- point out that you clearly have neurogenic bladder, that you've never seen a urologist and you are concerned about possible kidney damage. Chances are you don't have kidney damage, but I'm trying to think of a strategy that will get you in to a urologist fast.

Seriously, your life can get better very soon, probably with very simple intervention. You'll probably have to undergo some tests, such as a urodynamic study. It isn't painful, but it is very weird -- it checks your bladder capacity and the pressure at which your bladder stores urine, as well as checking for any signs of reflux to the kidneys. A renal ultrasound is likely -- not a big deal at all.

Urologists deal with these problems ALL the time -- there is no need to be embarrassed. You might ask about the availability of a female urologist if you're bothered by the idea of a male doctor for this problem. (Although female urologists aren't exactly a dime a dozen).

Please don't wait -- I would give anything if someone had given me this advice when I was your age! And let us know what happens.

[LisaJoy]

PS If you are nervous about talking to the urologist (or the surgeon or GP), print out post #17 above (quoting me and then your response) and just hand it to him/her to read.

[Mustang Sal]

Angel and LisaJoy, thank you so much!

I know what you're saying about SBO being belittled on other conferences - I have seen this happen too. I think the fact that statistics suggest that a certain amount of people out there have a degree of SBO that has never been diagnosed, and some people are therefore unaware that they have it, that can bring about this attitude. There are definitely varying degrees of SBO - some have it very mildly where they might have a sinlge odd-shaped vertebra that causes no pain and no neuro problems, while others have quite significant problems. Whatever the degree, what one person considers to be hard to deal with, another will breeze through it -we are all unique, with a unique set of challenges.

Lisa - everything you say makes perfect sense, and I know my life could change for the better if I just talk to someone about it. The thing is, I don't actually have a neurosurgeon. I had one when I was little, but after the detethering, I sort of crossed over into orthopaedics. My last back op was a joint effort between my ortho spinal surgeon and a neurosurgeon who had travelled from Cambridge (about 80 miles away - there's a big neurosurgical centre at Addenbrooke's Hospital) to assist him, but I only saw him once before the op, so he's not exactly 'my' consultant. He was a very nice man though, and very highly respected, so it would be nice if I could see him again.

As for getting to see specialists over here, yes you do need a referral. If I do mention all this to my spinal surgeon, i'm pretty sure he would refer me on if need be, although the neurosurgical referral would be trickier as he would be referring outside the Primary Care Trust, because the nearest neuro centre is in a different county (that can make things very long and drawn out, trust me!) Although my local hospital is quite large, and deals with most specialties, neurosurgery is unfortunately not one of them. It's not impossible, as i've found in the past, but it is difficult. I will definitely ask though.

I must say i'm not too enamoured with the idea of urodynamics - I can see from my notes that I had something like that done when I was little, which came out normal, but obviously things have changed a lot over the years. I had a renal ultrasound as part of my pre-op tests 10 years ago, which I assume was normal. I do worry about kidney damage though as from what i've read it can be quite insidious. I like the way you suggested I put it to them - I could probably talk about if it was in a matter-of-fact way and not a 'poor me' way.

Once again, thanks so much for taking the time to reply - I will let you know how I get on :)

[LisaJoy]

Urodynamics may not be necessary, if they do an ultrasound and determine that you have no sign of kidney damage. It sounds like we have very similar urinary problems and, at 44, I have perfectly normal kidney function.

The orthopedist won't be any more surprised than the neurosurgeon would be, so no worries there.

I sometimes forget how fortunate I am to live within 20 miles of a major university medical center. And also, being in the US, I am very fortunate to have excellent employer-provided health insurance (I work for the state of Tennessee). I actually don't even have to get a referral to see a specialist.

We will be waiting for an update!

[Brandy0215]

I have a problem typing my SB.My Mother took care of most of my medical history for the doctors and I never really had too discuss it with anybody.The most I know is that I was born with cyst inside the spinal colum and it was not found until I was about 1 or 2 years old.They also found out I had sacral agenesis and later on they found out I had a neurogenic bowel and bladder when I was 6 or 7.The bladder problems I have I deal with by catherizing and the bowel problems by diet.If anybody can tell me I would really be thankful.

[naomi6896]

HI LisaJoy,
you have perfect kidney function? that is great my son is twelve and he does not have bowel control he takes miralax and he says that he feels when his bladder is full and he goes and empties it out the urologist said he would benefit from catherization but he screams that it hurts we are going to see another urologist that deals with Pediatric SB patients hopefully we can get some answers. His bowel situation is about the same miralax and sometimes an enema but he says that he knows if he has to go to the bathroom......I just wonder is that possible? I know he doesn't want to cath or do the enemas but I don't want him to get sick either.....I guess we'll see what the urologist says he sees him next week.....

[LisaJoy]

I have a problem typing my SB.My Mother took care of most of my medical history for the doctors and I never really had too discuss it with anybody.The most I know is that I was born with cyst inside the spinal colum and it was not found until I was about 1 or 2 years old.They also found out I had sacral agenesis and later on they found out I had a neurogenic bowel and bladder when I was 6 or 7.The bladder problems I have I deal with by catherizing and the bowel problems by diet.If anybody can tell me I would really be thankful.

If it was only discovered when you were 1 or 2, it is probably a lipoma or lipomyelomeningocele. That's what I have, with sacral agenesis, too.

If your mom is not still living, perhaps you could request your medical records. I think it is a good idea for you to be fully informed about your own condition, since you have to be your own advocate. About ten years ago, I wrote to various hospitals and got all of the records I could for myself (the earliest ones no longer existed).

[LisaJoy]

HI LisaJoy,
you have perfect kidney function? that is great my son is twelve and he does not have bowel control he takes miralax and he says that he feels when his bladder is full and he goes and empties it out the urologist said he would benefit from catherization but he screams that it hurts we are going to see another urologist that deals with Pediatric SB patients hopefully we can get some answers. His bowel situation is about the same miralax and sometimes an enema but he says that he knows if he has to go to the bathroom......I just wonder is that possible? I know he doesn't want to cath or do the enemas but I don't want him to get sick either.....I guess we'll see what the urologist says he sees him next week.....

Yeah, but my urologist worries about it a lot (I think he just doesn't quite believe it). I cooperate and go every six months for a renal ultrasound, but they have never seen a problem. I'm very fortunate with bowels too.

[Brandy0215]

If it was only discovered when you were 1 or 2, it is probably a lipoma or lipomyelomeningocele. That's what I have, with sacral agenesis, too.

If your mom is not still living, perhaps you could request your medical records. I think it is a good idea for you to be fully informed about your own condition, since you have to be your own advocate. About ten years ago, I wrote to various hospitals and got all of the records I could for myself (the earliest ones no longer existed).

Thank you For your advice LisaJoy.I'm going to start requesting my medical records as soon as i'm able.

[printemps]

I think what I have is called Meningoecele , I have a small hole right at the top of my butt. I was born in 58' and Ive also heard it call sb occulta or even sacral agenesis as one of my sacral vertebra is missing or incompletely formed . I use afos because my feet will droop and I have a neurogenic bladder , no bladder control - thats the worst part sometimes .

[angel]

I have a problem typing my SB.My Mother took care of most of my medical history for the doctors and I never really had too discuss it with anybody.The most I know is that I was born with cyst inside the spinal colum and it was not found until I was about 1 or 2 years old.They also found out I had sacral agenesis and later on they found out I had a neurogenic bowel and bladder when I was 6 or 7.The bladder problems I have I deal with by catherizing and the bowel problems by diet.If anybody can tell me I would really be thankful.

my son and I both have sacral agenesis as well.

[angel]

HI LisaJoy,
you have perfect kidney function? that is great my son is twelve and he does not have bowel control he takes miralax and he says that he feels when his bladder is full and he goes and empties it out the urologist said he would benefit from catherization but he screams that it hurts we are going to see another urologist that deals with Pediatric SB patients hopefully we can get some answers. His bowel situation is about the same miralax and sometimes an enema but he says that he knows if he has to go to the bathroom......I just wonder is that possible? I know he doesn't want to cath or do the enemas but I don't want him to get sick either.....I guess we'll see what the urologist says he sees him next week.....

I have to second what your son says it does hurt!!! That is what i had the hardest time with. I am in my 30's and i still hate to have to cath because it is still uncomfortable. Now that i am older i can tolerate it better plus after you have a child pain takes on a whole new meaning and the cathing was much less of an issue to me after going through that. I have told parents before in the SB group i facilitate at shriners when the kids say it hurts listen to them because they are telling you the truth and may be a reason they seem hesitant to do it at younger ages.

Angel

[LisaJoy]

Make sure your son is using the right size catheter -- he may also find that using a lubricant helps.

My experience has been different from Angel's. I've never founding cathing painful, and I don't use a lubricant. It may be that I simply lack sensation in just the right place (except that it does hurt if it's the middle of the night and I try to put the wrong end in!).

[Dodger67]

You could also get a lubricant that contains an anaesthetic to numb the urethra.

[Gymp]

I never ever experienced pain either when I used to cath.The first few times it felt really weird but didn't hurt!Definitely use lubricant ,I don't think a guy should cath without lubricant it's got farther to go. Get the right diameter cath. as well.

Gymp

[angel]

Maybe i am just wierd but it still hurts when i do it. My mom was told that my urethra had a lot of scar tissue when i was little. I had a scope done when i was small. Not sure what the scar tissue would be from. Maybe that is why it hurts when i do it or maybe it is a nerve issue. Not sure I have to say i am glad it isn't like that for everyone. I remember when i was little and i was envious of the people who couldn't feel it. I remember thinking to myself that it would be worth it to me to not feel anything below that level if i didn't have to go through that. I hope that doesn't sound bad but that is how i felt when i was a kid. After having my son (the pain i will NEVER forget) it wasn't such a big deal anymore.

Angel

[Brandy0215]

when i first started to cath i used a 14 french and i had to use lubricant.It hurt alot in the begining but pretty soon i didn't feel anything when i would cath.Now i don't even have to use lubricant.