31 replies to this topic

[enigma2]

Hi everyone. I'm new and have been reading all the great stuff everyone talks about. I truly relate to the physical, social, family and emotional aspects of this life changing event.

When what was is no more and what will be is yet unknown, the courage and bravery of all survivors of a SCI as they face incredibly challenging struggles show the true strength of the human spirit.

Thank you all for your inspirations. Is there anyone out there like me?

I am 14 years partial paraplegic L5 S1 incomplete with cauda equina syndrome, work injury, left with some mobility. I have been told many things about my condition and I'm looking for information and advice. I experience many problems from incontinence to spastic legs. Is it a degenerating condition? At this time I have no doctors to go to for advice. I am concerned because of the changes to my symptoms which are worsening. I am very fit and flexible for a 51 year old female with my history but the issues are neurologic as are the changes.

[nomis]

Hi enigma2
You say you had a work injury so trauma to the spinal cord is not normally degenerating.
However, you are getting older and will take on the same aging processes as anyone. So, such things as bladder control may worsen with the combination of spinal injury plus aging.
No doubt your lower limb joints have taken some punishment so maybe increasingly you have osteoarthritis issues.
You should get any concerns checked by a doctor.

[enigma2]

nomis, on Dec 8 2007, 08:57 PM, said:

Hi enigma2
You say you had a work injury so trauma to the spinal cord is not normally degenerating.
However, you are getting older and will take on the same aging processes as anyone. So, such things as bladder control may worsen with the combination of spinal injury plus aging.
No doubt your lower limb joints have taken some punishment so maybe increasingly you have osteoarthritis issues.
You should get any concerns checked by a doctor.

Thanks for responding. I have had CES for 14 years and the physical problems have always been a part of it. The only changes are nuerological/mobility etc. but seem to be worsening at a faster rate. There are no doctors available where I am. This is Canada EH! So much for Michael Moores movie "SICKO". I have no medical or access to any meds. or treatments. Thanks again for your kind response.

Edited by enigma2, 09 December 2007 - 08:41 PM.

[nomis]

enigma2, on Dec 10 2007, 09:39 AM, said:

Thanks for responding. I have had CES for 14 years and the physical problems have always been a part of it. The only changes are nuerological/mobility etc. but seem to be worsening at a faster rate. There are no doctors available where I am. This is Canada EH! So much for Michael Moores movie "SICKO". I have no medical or access to any meds. or treatments. Thanks again for your kind response.

I appreciate the characteristic complexities that often come with CES - there can be much uncertainty and variation. But I can't get my head around continuing degeneration unless there is something causing further trauma to the nervous system, such as a nerve being pinched as in sciatica, etc.

I'm very surprised that the Canadian medical system does not give you a reasonable service. I've always thought of you lot being that bit more civilised than ourselves. The bigger countries are always pinching our doctors so who's got them all?

[enigma2]

nomis, on Dec 9 2007, 02:16 PM, said:

enigma2, on Dec 10 2007, 09:39 AM, said:

Thanks for responding. I have had CES for 14 years and the physical problems have always been a part of it. The only changes are nuerological/mobility etc. but seem to be worsening at a faster rate. There are no doctors available where I am. This is Canada EH! So much for Michael Moores movie "SICKO". I have no medical or access to any meds. or treatments. Thanks again for your kind response.

I appreciate the characteristic complexities that often come with CES - there can be much uncertainty and variation. But I can't get my head around continuing degeneration unless there is something causing further trauma to the nervous system, such as a nerve being pinched as in sciatica, etc.

I'm very surprised that the Canadian medical system does not give you a reasonable service. I've always thought of you lot being that bit more civilised than ourselves. The bigger countries are always pinching our doctors so who's got them all?

Thanks for the laugh! It was nice to hear you are aware of CES. Yes I have permanent sciatica and other issues left over from two surgeries in 1993/94. Thanks again for the chuckle. I could get into quite a discussion on our medical system but that's off topic. I had excellent physiotherapists and doctors who took great strides with me. Then I went to another part of my country and felt like I had entered a foriegn land. Now I have very little source for information on CES and and am hoping some one can explain certain feelings and changes to my body.

[Avocado Baby]

Hi,

I have CES due to Spina Bifida.

[enigma2]

Pink Ali, on Dec 13 2007, 10:16 PM, said:

Hi,

I have CES due to Spina Bifida.

'Pink Ali'
thanks so much for responding. will you be willing to answer questions for me about your CES and how that in particular might relate to mine. i understand your conditions are much more complicated so my ignorance might show with a stupid question here and there, but that might bring you a giggle now and again too. if you would talk to me about these things i would appriciate it. i like laughing a lot too and enjoy people. i am told i'm an extrovert. are you too? Enigma2 "Wendy"

Pink Ali, on Dec 13 2007, 10:16 PM, said:

Hi,

I have CES due to Spina Bifida.

'Pink Ali'
thanks so much for responding. will you be willing to answer questions for me about your CES and how that in particular might relate to mine. i understand your conditions are much more complicated so my ignorance might show with a stupid question here and there, but that might bring you a giggle now and again too. if you would talk to me about these things i would appriciate it. i like laughing a lot too and enjoy people. i am told i'm an extrovert. are you too? Enigma2 "Wendy"

[dom]

hi enigma,yeh i've got it too

[Avocado Baby]

Hi there,

Of course I'd be willing to answer any questions. I wouldn't say I'm an extrovert but I'm definately a people person

[enigma2]

Pink Ali, on Dec 14 2007, 03:03 PM, said:

Hi there,

Of course I'd be willing to answer any questions. I wouldn't say I'm an extrovert but I'm definately a people person

Thanks 'Pink' Ali', Some of the things I was wondering was how varied and severe your different symptoms are and if pain is the worst. I looked up spina bifida and see there are different degrees of this condition. How did yours contribute to your CES? I have partial paraplegia L5 S1 with CES and I have severe leg spasms/contractions, bladder/bowel problems, leg weakness, drop foot, fatigue and a lot of pain but I am able to walk some. No stairs though. Mine was caused by surgery. Do you have any of these problems too from the CES? Thanks for sharing: enigma2

dom, on Dec 14 2007, 02:50 PM, said:

hi enigma,yeh i've got it too

Hello "dom" Can you share with me your experience and how CES affects your life? It totally rules my time and ability and I'm looking for confirmation that what's happening to me is CES related. I was diagnosed in 1995. Leg weakness,incontinence,spasms,severe pain and other issues. Thanks: enigma2

Edited by enigma2, 15 December 2007 - 08:45 AM.

[BGaudi]

Hello to everyone...... I am a 27 yr old partial para with ces and let me say that I can relate to everyone here. I was diagnosed 2 years ago and I am still in transition of accecpting 'phase'. I would love to meet other people who have this especially women. I am currently in a spinal cord injury group but I have never spoke to another woman who has the same probs as I do, so I would like to hear from anybody out there.

[Avocado Baby]

Hi BGaudi

[Avocado Baby]

Hi,

I re-read this last night and saw that you'd asked me questions, Enigma. Sorry I only just realised!

Well, my CES is caused by my Spina Bifida so it's kinda one and the same thing I guess. I am completely paralysed from the waist down and have contracture of my left leg, both feet and my hips. I went to see the neurologist the other day and found that I don't really have any sensation below the T6 level, although my Spina Bifida is Lumbosacral. I also have the bowel and bladder problems, which are rubbish!!!

I've had neuropathic pain for about 5 years now and from some research I did, I think it might be due to worsening CES, although I don't know if this is right? What kind of pain do you have? I'm trying to piece things together at the moment.

Hope you're well

[kobesgamma]

enigma2, on Dec 8 2007, 07:09 PM, said:

Hi everyone. I'm new and have been reading all the great stuff everyone talks about. I truly relate to the physical, social, family and emotional aspects of this life changing event.

When what was is no more and what will be is yet unknown, the courage and bravery of all survivors of a SCI as they face incredibly challenging struggles show the true strength of the human spirit.

Thank you all for your inspirations. Is there anyone out there like me?

I am 14 years partial paraplegic L5 S1 incomplete with cauda equina syndrome, work injury, left with some mobility. I have been told many things about my condition and I'm looking for information and advice. I experience many problems from incontinence to spastic legs. Is it a degenerating condition? At this time I have no doctors to go to for advice. I am concerned because of the changes to my symptoms which are worsening. I am very fit and flexible for a 51 year old female with my history but the issues are neurologic as are the changes.

Hi engima2,
We could be a mirror image of each other, my CES and paralysis was also caused by surgery back in 1979. I am now 59 years old and everything seems to be getting worse with age. I take 1800 mg’s of Gabapentin a day, maybe more, and sometimes Vicodin along with Excedrin. I think we all are searching for something we will never find.

[Kwag_Myers]

kobesgamma, on May 15 2008, 01:30 AM, said:

Hi engima2,
We could be a mirror image of each other, my CES and paralysis was also caused by surgery back in 1979. I am now 59 years old and everything seems to be getting worse with age. I take 1800 mg’s of Gabapentin a day, maybe more, and sometimes Vicodin along with Excedrin. I think we all are searching for something we will never find.

Welcome kobesgamma. We CES' have another thread going in the General Discussion forum. You're welcome to join us (click here). Sorry, no free T-shirts.

[kobesgamma]

Kwag_Myers, on May 15 2008, 03:46 AM, said:

kobesgamma, on May 15 2008, 01:30 AM, said:

Hi engima2,
We could be a mirror image of each other, my CES and paralysis was also caused by surgery back in 1979. I am now 59 years old and everything seems to be getting worse with age. I take 1800 mg’s of Gabapentin a day, maybe more, and sometimes Vicodin along with Excedrin. I think we all are searching for something we will never find.

Welcome kobesgamma. We CES' have another thread going in the General Discussion forum. You're welcome to join us (click here). Sorry, no free T-shirts.

Thank You Kwag_Myers
How did you know I wanted "free T-shirt?"
I will start checking the other thread in the General Discussion forum, not that I can add anything of importance, LOLOL.
I get so lost in these threads, I can never find where I've been.
I went into that CES support group website and never got a reply back.

[stecurtis331]

hiya enigma22
im an incomplete paraplegic,i also have ces
due to surgery aswell as complications in surgery and i too am getting worse month by month
so i know what you are going through.
take care
ste

[Kwag_Myers]

kobesgamma, on May 15 2008, 01:15 PM, said:

Thank You Kwag_Myers
How did you know I wanted "free T-shirt?"
I will start checking the other thread in the General Discussion forum, not that I can add anything of importance, LOLOL.
I get so lost in these threads, I can never find where I've been.
I went into that CES support group website and never got a reply back.

If you go to my post in the other thread, I have some sites that I think are informative.

[kirsty]

Hi, I was in a car accident when i was 17 which was in 2001, seems like only yesterday! I fractured my spine at L1 and L2 and was diagnosed as an incomplete paraplega with cuadia equina syndrome.
I am now 25 years old and going strong, keeping positive is the only way i get thru!! I am in alot of pain all the time in my back, i have screws and pins in there, I can still walk, most people that dont know me wouldnt even know theres anything wrong, i have on going bladder and bowel issues, thats the annoying part, but i have found the best cure for that which is what i want everyone with incontinace to know, its not a permanent cure but it works while it lasts. When the uroligist told me that getting BOTOX in my bladder could help i thought how could something that paralises your muscles help in this situation?? well i wish i had of got on to it right then! About a year later when nothing else worked i thought ok well ill give it a try! So i did and i recomend it to every one with incontinance!! it worked within days!! i could sleep the whole night without getting up! i could go out on a boat for 4 hours and not worry about going to the toilet!!! FREEDOOM!! So i suggest anyone who is having toilet troubles to ask their doctors about it!! I have to get it done every 6-8 months but hey it works for me and i hope it works for everyone else that gives it a go!! So i hope i can help with your bladder troubles, if you can do it you should!
kirsty

Quote

I am 14 years partial paraplegic L5 S1 incomplete with cauda equina syndrome, work injury, left with some mobility. I have been told many things about my condition and I'm looking for information and advice. I experience many problems from incontinence to spastic legs. Is it a degenerating condition? At this time I have no doctors to go to for advice. I am concerned because of the changes to my symptoms which are worsening. I am very fit and flexible for a 51 year old female with my history but the issues are neurologic as are the changes.

[dom]

kirsty, on May 23 2009, 10:08 AM, said:

Hi, I was in a car accident when i was 17 which was in 2001, seems like only yesterday! I fractured my spine at L1 and L2 and was diagnosed as an incomplete paraplega with cuadia equina syndrome.
I am now 25 years old and going strong, keeping positive is the only way i get thru!! I am in alot of pain all the time in my back, i have screws and pins in there, I can still walk, most people that dont know me wouldnt even know theres anything wrong, i have on going bladder and bowel issues, thats the annoying part, but i have found the best cure for that which is what i want everyone with incontinace to know, its not a permanent cure but it works while it lasts. When the uroligist told me that getting BOTOX in my bladder could help i thought how could something that paralises your muscles help in this situation?? well i wish i had of got on to it right then! About a year later when nothing else worked i thought ok well ill give it a try! So i did and i recomend it to every one with incontinance!! it worked within days!! i could sleep the whole night without getting up! i could go out on a boat for 4 hours and not worry about going to the toilet!!! FREEDOOM!! So i suggest anyone who is having toilet troubles to ask their doctors about it!! I have to get it done every 6-8 months but hey it works for me and i hope it works for everyone else that gives it a go!! So i hope i can help with your bladder troubles, if you can do it you should!
kirsty

Quote

I am 14 years partial paraplegic L5 S1 incomplete with cauda equina syndrome, work injury, left with some mobility. I have been told many things about my condition and I'm looking for information and advice. I experience many problems from incontinence to spastic legs. Is it a degenerating condition? At this time I have no doctors to go to for advice. I am concerned because of the changes to my symptoms which are worsening. I am very fit and flexible for a 51 year old female with my history but the issues are neurologic as are the changes.

would'nt botox injections obstruct the natural filling of the bladder? i am worried that when it is time to go to the loo,it would be ignored leading to overfilling and possible damage to the kidneys,i don't know as i am not a doctor

[kirsty]

Hey, I forgot to mention that i use a disposable catheter every time i go to the toilet, so i have to make sure that i go to the toilet before my bladder is too full otherwise I will leak, but if i go to the loo every 4 hours and empty my bladder with a Catheter I have no leakage, unless im drinking alcohol! It works for me anyway its the best thing ive done that works since my accident!!




would'nt botox injections obstruct the natural filling of the bladder? i am worried that when it is time to go to the loo,it would be ignored leading to overfilling and possible damage to the kidneys,i don't know as i am not a doctor
[/quote]

[fatdave]

um...ok. Thanks?

[jerrytal]

enigma2, on Dec 8 2007, 10:09 PM, said:

Hi everyone. I'm new and have been reading all the great stuff everyone talks about. I truly relate to the physical, social, family and emotional aspects of this life changing event.

When what was is no more and what will be is yet unknown, the courage and bravery of all survivors of a SCI as they face incredibly challenging struggles show the true strength of the human spirit.

Thank you all for your inspirations. Is there anyone out there like me?

I am 14 years partial paraplegic L5 S1 incomplete with cauda equina syndrome, work injury, left with some mobility. I have been told many things about my condition and I'm looking for information and advice. I experience many problems from incontinence to spastic legs. Is it a degenerating condition? At this time I have no doctors to go to for advice. I am concerned because of the changes to my symptoms which are worsening. I am very fit and flexible for a 51 year old female with my history but the issues are neurologic as are the changes.

[jerrytal]

Hi All, Just registered! I am a partial paraplegic from severe CES compression on the lumbar area. Had back problems since injury at 14 years old and suffered off and on chronic pain until the big one hit me at 53 years old! Was told I was a paraplegic and might never walk again! Needed a laminectomy to relieve the severe compression on my nerves----alas, the permanent damage to my nerves had already been done prior to the operation and I was in therapy and rehab for 7 months! Went from zeroed out----no strength in lower body, no urination (catheter)----difficult bowel movement, etc.----completly paraplegic after operation! Started rehab on parallel bars-----could not take 1 step----week later I was up to 5 steps----and on and on----after 7 weeks in hospital rehab I could walk with a walker for 15 minutes------went home and to outpatient rehab for next 6 months----progressed to quad cane----then to regular cane---after 7 months was able to urinate near normal----went back to work after 13 months off-----continued to rehab at Fitness USA where I spent hours on the stairstepper and other machines! Returned to playing table tennis on my first day back at work----but, continue to walk with limp and have continuing bladder and bowel problems-----but, have managed to restore myself to 85% to 90% of former life!! Still have foot spasms----toes and ankles are pretty much paralyzed, but can walk without cane for long periods, drive a car and do most everything! I thank God every day for what he allowed me to recover from such a devastating injury! I totally empathize with all suffering spinal injury.

[chickadee]

Welcome, Jerry! Glad to hear about your recovery and progress. Glad to see you here.

[fatdave]

Welcome Jerry! I am happy to hear of your recovery.

[jerrytal]

fatdave, on Aug 18 2009, 11:28 PM, said:

Welcome Jerry! I am happy to hear of your recovery.

Thank you, Fat Dave, the recovery is still an ongoing work in progress-------hope, you are doing OK!!

[jerrytal]

chickadee, on Aug 18 2009, 10:17 PM, said:

Welcome, Jerry! Glad to hear about your recovery and progress. Glad to see you here.

Thank you, Chickadee, for the warm welcome! Hope all is well with you! I am quite impressed with website, already!! Jerrytal

[jerrytal]

enigma2, on 09 December 2007 - 02:09 AM, said:

Hi everyone. I'm new and have been reading all the great stuff everyone talks about. I truly relate to the physical, social, family and emotional aspects of this life changing event.

When what was is no more and what will be is yet unknown, the courage and bravery of all survivors of a SCI as they face incredibly challenging struggles show the true strength of the human spirit.

Thank you all for your inspirations. Is there anyone out there like me?

I am 14 years partial paraplegic L5 S1 incomplete with cauda equina syndrome, work injury, left with some mobility. I have been told many things about my condition and I'm looking for information and advice. I experience many problems from incontinence to spastic legs. Is it a degenerating condition? At this time I have no doctors to go to for advice. I am concerned because of the changes to my symptoms which are worsening. I am very fit and flexible for a 51 year old female with my history but the issues are neurologic as are the changes.

[Pete Anderson]

Hi There.

I have CES due to a hang gliding accident. I fell 150 feet and lived! I had an epidural hematoma and damaged my spinal cord, among other damages. Fortunately, with braces, I can hobble. Fortunately, I have no bowel or bladder problems. Unfortunately, I think my paralysis is permanent.

I have never met any one that has CES, with my disability. Everything that I have read tells me that I'm very lucky to be walking. If I have my leg braces off, I can lock my knees and walk stiff legged around the house.

As far as I know, there is no cure. Oh well, I could be dead. I'll take what I can get!

Pete