Spina Bifida

[aligator]

I learned the cause of my neurogenic bladder. This is spina bifida S1. As far as I can, as I wrote before, there is no complete loss over the controller. Currently, I do not need surgical intervention. I prefer diapers because the drugs only fight the symptoms and have side effects. Are there still people with this diagnosis? Are you getting worse? Are there periodic deteriorations with improvements. I understand that this is not a medical forum and I receive consultations from my doctor.

 

[warmfeeling]

I learned the cause of my neurogenic bladder. This is spina bifida S1. As far as I can, as I wrote before, there is no complete loss over the controller. Currently, I do not need surgical intervention. I prefer diapers because the drugs only fight the symptoms and have side effects. Are there still people with this diagnosis? Are you getting worse? Are there periodic deteriorations with improvements. I understand that this is not a medical forum and I receive consultations from my doctor.

Hey sorry to read of your problems, its good that you can talk about things, feel assured you can talk here, I’m no Dr, but I will listen to anyone, sometimes just talking ease things

 

[CrossfireHurricane]

To be honest I don't know enough about spina bifida S1. I've been IC when I was a very young kid. And I don't consider myself as ABDL. Regardless your diagnosis, apparently you are also a DL. I'm sure that your "diaper interests" might have directed you to using a diaper rather than any other intervention. Despite any deterioration that might happen, using a diaper should still be a last resort. I would think a good physician would help you make the best choice for you. Whether its a diaper or other intervention. Good luck.

 

[mickdl]

I guess you mean spinda bifida oculta. Many people have this without knowing and without any problems. How ever - if you start to develop symptoms then this means that something changes and the question should be why. In general problems are caused by changes in the lower spine (e.g. disks or malpositions) and there corresponding muscles that not have directly to do with spinda bifida but cause together the problems.

Often the same approach is take for therapy as for lumbar problems. This means first a conservative treatment with physiotherapy and functional workout is taken. Sometimes also a surgical procedure is necessary. The surgery is in cases necessary when nerves are directly affected (myelopathy) or palsy occurs

The problem with this is - that things will become worse if you don’t do anything against it. As long as there is no myelopathy you should try to stabilize the lower spine with functional workouts and PT - how ever - it’s pretty important to have an eye on that and if something changes to consult a neurosurgeon immediately. Nerves that are damaged once couldn’t repaired and in a really worse case you can end up in wheelchair if in such a case a surgery isn’t done fast enough.

 

[Edgewater]

The very important information provided by mickdl (above) is very important in understanding this specific area of the spine!

Your having a clear understanding of what can cause problems there and using functional workouts can provide strength in this area to avoid problems. Finding and having as part of your Medical Team a Neurosurgeon is crucially as noted above, time is critical!

 

[L2Sci]

I also have spina bifida oculta. This resulted in a lipoma and tethered spinal cord from l1-l4 and severe compression on cord in multiple places. I ignored worsing symptoms (urinary, bowel, and physical) until at one point my leg would not move mid stride.

Had surgery now in wheelchair trying my damnest to walk distance again. have to Cath to empty bladder and have incon bowel. Rule on thumb is once you loose it, its likely gone. Get an mri every 1-2 years, make sure nothing has changed.

 

[CptKirk]

I also have spina bifida oculta. This resulted in a lipoma and tethered spinal cord from l1-l4 and severe compression on cord in multiple places. I ignored worsing symptoms (urinary, bowel, and physical) until at one point my leg would not move mid stride.

Had surgery now in wheelchair trying my damnest to walk distance again. have to Cath to empty bladder and have incon bowel. Rule on thumb is once you loose it, its likely gone. Get an mri every 1-2 years, make sure nothing has changed.

Best wishes getting back on your feet. I wound up incapable of standing or walking 8 months after life as I once knew it came to a really rough end (severe autoimmune issues, 24/7/365 frequently INDESCRIBABLE headache (to this very day I have not had a minute "headache" free since Jan 18 2004)) and my lower spine took much of the joint destruction inherent with certain autoimmune diseases, giving me a 2nd source of sometimes indescribable pain.

I was incredibly strong though (was a dedicated drug free power-lifter from the age of 12 until 6 weeks shy of my 34th birthday) but still had to get a pain pump implant in order to go from a wheelchair to a walker and then to the cane I use to this day. You have to keep fighting and never surrender. The instant you give up you lose.

CptKirk

 

[diapernh]

About 10 or so years ago i developed a pain starting in my lower back, down my hip and spiraling down my leg. Sitting was unbareable. The constant pain seriously changes you mentally. I did pain meds for the nerve, spinal epidurals, physical therapy, chiropractor, you name it.

I got an X-ray and mri and when viewing the mri my chiropractor stated he saw Spina Bifida occulta in my lower back, a ton of arthritis in my lumbar section. And the cause of it a herniated disc in L5-S1. I had a surgery which stopped the pain, but since then I seriously think has changed my bladder and bowels. Often getting the urge later than preferred, frequent bathroom breaks.

 

[Edgewater]

About 10 or so years ago i developed a pain starting in my lower back, down my hip and spiraling down my leg. Sitting was unbareable. The constant pain seriously changes you mentally. I did pain meds for the nerve, spinal epidurals, physical therapy, chiropractor, you name it.

I got an X-ray and mri and when viewing the mri my chiropractor stated he saw Spina Bifida occulta in my lower back, a ton of arthritis in my lumbar section. And the cause of it a herniated disc in L5-S1. I had a surgery which stopped the pain, but since then I seriously think has changed my bladder and bowels. Often getting the urge later than preferred, frequent bathroom breaks.

Sadly, in that region, such a result of surgery is fairly common.

Surprised that a chiropractor provided you the review of your MRI and not the involved Surgeon.

 

[diapernh]

Sadly, in that region, such a result of surgery is fairly common.

Surprised that a chiropractor provided you the review of your MRI and not the involved Surgeon.

Oh my surgeon did as well. When I asked what other option besides surgery he said I dunno, witch doctor r voodoo. You’ve done all their is.

 

[aligator]

The doctor told me that the operation is not necessary yet. Bladder problems are not critical. Medicines are only symptomatic. I work from home most of the time, so going to the toilet is not a problem. So I have a penchant for DL so far I choose diapers. Since I still have some problems with the liver, this is a rational choice. I need diapers if I go somewhere. For example, the road to the office and back home. I periodically wear it at night for better sleep. In Ukraine, we have many shops near the house. Therefore, in 20 minutes I have time to do all the shopping. Fortunately, I'm still on that thin line when it's still possible to keep everything under control. I was told about training the muscles of the urinary system. I do this workout. I will undergo periodic examinations. But diapers help to keep up with the modern rhythm of life.
Thanks for the support. Still, it's useful to share information.
P.S. This is just communication, the doctor should handle the treatment

 

[Adri]

I have the same problem. Neurological bladder due to a spina bifida occulta. It took the doctors years to find this well hidden defect in my spine.
It hasn't really changed over the years. Sometimes I am losing more urine, but then oftentimes I have an infection or other temporary illness. When the illness is over I will return to minor urine loss. Also I have bowel issues. But it is all still manageable.
I am a bit older, 50+. And the incontinence is still on the same level as it was in my teens. Hopefully it will be the same for you Aligator. Not to much problems in the years to come.