18 replies to this topic

[strawberry71]

I love the statement on a previous page that says this site is full of members that have the t-shirt and the wheelchair.......I am getting the t-shirt, I have the walker, the sock-aid to put on my socks, the reacher to put on my underwear, the telescopic shoe horn to put on my shoes, the bed-side toilet to lessen accidents, pads/liners to help with the accidents, the transfer bath bench (that insurance won't pay for b/c bathing is a luxury), laxatives, stool softners, prune juice, and a tool that resembles bar-b-q tongs to wipe my backside. My mom has always told me that there is someone out there that has life worse than me and there is not a day that goes by that I don't tell myself that. I thank God that I hurt and that I am alive....things could always be worse. Going thru this special kind of hell, I have questioned if death is really worse and with a strong faith in God, a hunger for life, and an undeniable sense of humor, I believe that I will become stronger (at least mentally) and own my new sexy freak walk (I look like a fat frog walking on my hind legs) LMNAO (Laugh my numb a@# off).

Okay, I really do have questions........Cauda Equina Syndrome (as explained to me), is where the horsetail of nerves (outside of the spinal column) has been compressed by something and usually either limits mobility but sensation/feeling exists or vice versa, which is what my condition possesses. I have no feeling in the saddle area, the back of my thighs, back/front of my calves, heels, toes, outside, and most of the top of both feet. The Doctors and Physical Therapists all have said to give it time. Is there anyone out there that has had some or all sensation/feeling restored after 6-8 wks? Do I need to be concerned with my bowels dying, since my bowel movements are now once or twice a week instead of every day? Is there some type of disability supplement that I can apply for to help with medical bills and living expenses? I used to work two (very stressful) jobs, one job was 45-50hrs a week and the other was 20-24hrs a week and now I have started back with 20hrs total and am exhausted. Is Arachnoiditis definite with Cauda Equina Syndrome? The emergency surgery that was done was pretty much just the removal of the disc and the fragments of the disc that were in my horsetail, no fusion was done. Will I need a fusion or should I have a fusion or a replacement disc inserted later on? Is it possible to become pregnant and carry children safely? What can be done about embarrasing gas that never has a warning, but just happens? Again, I have no feeling in my saddle area, so I am concerned, scared, worried about intimacy. Does the feeling ever come back in the good areas? Am I at risk of losing all sensation/feeling below the waist or paralysis? Any answers, advice, encouragement, and/or kind words are welcomed. Thank you! Dianne

[greybeard]

You probably won´t want to hear it, but it is likely that any answers you may get are likely to be of the wait and see variety.

Your description of CES sounds about right. My understanding is that spinal nerve roots are capable of some regeneration some of the time. But every case is different. There is no set pattern. Others will be able to answer with their own experiences regarding the points you raise.

[Tatiana]

Hi, im certainly no expert, at this point im 10 weeks post emergency op.Nothing has changed for me but i guess its early days.
If im being totally honest i dont expect any of the numbness/loss of sensation to come back.This way i can get on with things and adapt.

Another factor is wether you was operated on in time. There is a 48 hour window where the damage has a better change of healing and recovery is higher to what degree i do not know.

I was numb for over 2 weeks before my op in similar areas to yourself so i figure i was well over the time frame. My surgeon explained that at the point of surgery his job was to prevent further damage not to repair existing damage.

I cant answer many of your questions but my understanding of CES is that loss of sensation goes side by side with the damage to the spinal cord from being compressed and all ties in with the impaired mobilty.

My OH and I had sex just a few weeks after my op, prob too soon but hey? I was very worried about having intercourse and how it would feel/not feel. I knew when i passed urine i never felt anything so i didnt expect it to feel the same.
Unfortunately i didnt and dont feel anything (penetration wise), its a strange sensation but after saying that, it was very comforting being intimate and close with my partner.I was very worried that he would not find me remotely attractive but this was my issue and not his.

I wear pads everyday on my knicks, its the only way to stay clean for me and i use baby wipes all the time. I bleed often at the back when i clean myself, i think im maybe over cleaning..i dont know but i do have sores there (sudocream is great), i think from wearing nappies in hospital.

Thankfully i do know when i need the loo and i can generally get there in time. I do take a lot of lactulose and senna morning and night.

I think for you, as i did and still am, you will learn about your body every day.Your sense of humour is your saving grace and strength of mind.I believe we are only given what we can cope with in life.

My advice is be strong and live each day as it comes. You will get down and its natural, its not a sign of weakness, we are only human after all.

Take care and all the best...message me anytime for a 'chat'.

jeannette x

[mcjane]

The psychiatrist in the hospital told me "Nobody can tell you because they don't know." The spinal cord is a mystery. Every case is different. When I told a friend with a C level injury that I had to use pads because my bladder was leaking she said "Ohhh, it works", like she was envious! She has to use a catheter but has bowel accidents. It's all perspective.

[esslouis]

Hi i have CES as well. It is a case of how long a piece of string is when you can't see the end!! Not what you are looking for but that is the case. I had my surgery a week before xmas 2010 and i've still no feeling in my feet, my legs with feeling depends it seems on how i am when i get out of bed!! I can walk only with the aid of a four wheeled walker and splints on my feet to stop me tripping over them. Like you no feeling in the saddle area so can't orgasm and can't feel much of anything. I can usually tell when i need to go but do have accidents. I just take it as part of life - if it happens it happens!! The one thing i'm really proud of is that with a lot of effort i can walk my dog in the woods for about 30 mins. I have one day a week rest when the dog walker comes and does the job but the rest is all mine. esslouis

[madhouse73]

Hi I am another with CES and has been 3 months for me now .in hindsight my symptons started over 3 months prio it was not till I lost ability to pass urine that someone listerned and within 6 hrs had lost all feeling and ende dup in surgery .I can sort of stand with help few seconds but with some ablity to move my left leg makes it easier to transfer .(right leg has no movemnt or feelin g )

And like many i was told that he could not epair the damage all he could was prevent more.I have to learn to self cath and have bowel program and i do use a wheelchair but that by no account means you will be the same .( i had other complications due to a seperate condtion ~)

It is so hard to just wait and see and when someone says it you want to yell scream how long .But i got my head round accepting the worse and anything else is a bonus .

Just one day at a time and chat away on here .It has been my lifeline while i got my head round it all and there are quite a few of us with ces on the incomplete board

Tatiana can you get referal to a incontienace nurse to discuss your options ? i have now learnt to self cath and means less accidents and we are working on a bowel program to

[Tatiana]

Thankyou for the message madhouse73, ive just replied .

[Ginny]

First of all, I laughed so hard when I read your post that I swallowed down the wrong pipe. So funny, really and I suppose it is because it sounded so familiar. I also have CES along with an L1 and L5 injury. I was injured 10 months ago. I thought you might benefit from hearing how it went with me, although you have probably also heard that no one is the same.

After my accident, which was caused by a tornado, while camping last July, I could barely feel my legs, couldn't pee or poop, couldn't feel my feet and ankles. The front of my legs had more sensation than the backs and my butt had none at all. Really, it felt like someone else's butt. In addition to the SCI, I had other broken bones, internal injuries all of which required surgeries of various types.

During the first few months of recovery, I regained a lot of sensation in my legs. Certainly not normal, but I had a lot of electrical type of snapping. Gradually, I started having better sensation, still with the front of my legs improving first.

After three months, I could suddenly pee again. Have no idea what happened. Then poop returned. I consulted a PT to get some exercises to strengthen the pelvic muscles. It's been getting better all the time and now, at 10 months post injury, I'm almost good as new in that regard.

Feeling kept coming back to my legs. I can now feel a razor on the back of my calf. My hamstrings started working at month six. I have more feeling in the bum area than before. Now, I know if I'm sitting on the dog, although I might not know it's the dog right away.

Feet may be the last to return. I could not go barefoot for the longest time because my feet couldn't tell if they were on carpet, wood floor or standing on the dog. Now, I can sense those things. I have a lot of sensation in the feet, both top and bottom, although it's not normal sensory yet.

Balance has been a problem because a lot of what we read for balance comes from our feet and ankles. It's getting better, though.

As you recover, you may not notice huge jolts of returned sensation and motor skills. Rather, you may notice little things and you might question whether they are even improvements or not. Then, one day, you suddenly realize that you can do a hamstring curl. Recovery from this type of injury is slow. I've been told that what you get back in two years is likely what you'll live with. It sounds like a lot of time in front of you, I know. However, you will improve as you go along. Things will get better.

Keep a journal, if you can. It will come in handy on days when you are just convinced that nothing has happened in ages. When you page back, you'll be able to see the progress. Keep a PT journal, too, so you can follow your strengthening and rehab progress.

I wish you the best, really I do. I know how hard it is to suddenly be derailed by something as traumatic as an SCI. However, you have a wealth of humor to keep you company. Use that humor and keep your head pointed to the positive.

[Tatiana]

Hi ginny, your progress is very positive and reassuring.

I hope/wish we are all able to improve in the same way?

Just wanted to ask how soon you were operated on after the injury occured, this seems to be an important factor in the potential recovery of the nerves.

thankyou

[Ginny]

Hi Tatiana, my surgery took place 48 hours after the injury. We were in a remote location when it happened and had to be transported to a hospital with a spinal surgeon. I also had to wait for things to settle down because they didn't know if I'd make it at first. CES has so many causes and some of them sneak up on you. I feel for the folks that have a gradual entry into the problem and end up having surgery much later.

Based on what everyone has told me, I thought that the recovery process would slow as time has gone on. However, I've found that not to be the case. I think my biggest gains have come within the last two months. It was really slow to start and I waited a long time for anything to happen. I was finally able to stand at 4.5 months, however for only a half-minute at a time and keeping a death grip on the counter. Two months later, I was making cakes in the kitchen and standing at the counter to do cooking and cleanup. Now, I don't even think of it.

Yeah, having that 'no two people are alike' is kinda hard because I'd love to be able to tell people, "This is how it'll go for you". I can only relay my own experience and hope that others have recovery kickins that get them moving along.

[Ginny]

Hi Jeannette, just a suggestion on the B&B side of things....if you have any abilities or sensation at all in that regard, make the most of it. When my function began to return, very small changes at first, I consulted my rehab doctor for advice on anything I could do to help things along. He told me, "Nope, there's nothing to be done but wait and see what happens." Well, I went to a urologist and found that there's a lot that a physical therapist can help with. There are large muscle groups and then refined muscle groups that work the pelvic area necessary to 'go'. I started doing exercises for the large groups because I didn't have any refined sensation. What started as a 'tinkle...oops...what was that?' became, in time, stronger and more controlled. I could actually get by pretty well with just the large muscle group doing the work. Then, I had a glimmer of sensation on the refined muscles and started working them in a different way. If I don't do my refined exercises daily, I have accidents. However, if I do them, I'm in pretty good shape. Just a thought for you. Not sure of your situation but there's a lot that can be done just a glimmer of muscle return.

Tatiana, on 10 June 2011 - 07:42 AM, said:

Hi, im certainly no expert, at this point im 10 weeks post emergency op.Nothing has changed for me but i guess its early days.
If im being totally honest i dont expect any of the numbness/loss of sensation to come back.This way i can get on with things and adapt.

Another factor is wether you was operated on in time. There is a 48 hour window where the damage has a better change of healing and recovery is higher to what degree i do not know.

I was numb for over 2 weeks before my op in similar areas to yourself so i figure i was well over the time frame. My surgeon explained that at the point of surgery his job was to prevent further damage not to repair existing damage.

I cant answer many of your questions but my understanding of CES is that loss of sensation goes side by side with the damage to the spinal cord from being compressed and all ties in with the impaired mobilty.

My OH and I had sex just a few weeks after my op, prob too soon but hey? I was very worried about having intercourse and how it would feel/not feel. I knew when i passed urine i never felt anything so i didnt expect it to feel the same.
Unfortunately i didnt and dont feel anything (penetration wise), its a strange sensation but after saying that, it was very comforting being intimate and close with my partner.I was very worried that he would not find me remotely attractive but this was my issue and not his.

I wear pads everyday on my knicks, its the only way to stay clean for me and i use baby wipes all the time. I bleed often at the back when i clean myself, i think im maybe over cleaning..i dont know but i do have sores there (sudocream is great), i think from wearing nappies in hospital.

Thankfully i do know when i need the loo and i can generally get there in time. I do take a lot of lactulose and senna morning and night.

I think for you, as i did and still am, you will learn about your body every day.Your sense of humour is your saving grace and strength of mind.I believe we are only given what we can cope with in life.

My advice is be strong and live each day as it comes. You will get down and its natural, its not a sign of weakness, we are only human after all.

Take care and all the best...message me anytime for a 'chat'.

jeannette x

[Tatiana]

Thankyou for replying to my comments Ginny. I work very hard at working towards progress/improvements and i like to think im very positive.

My life is beginning to take some pattern of normality, just with adjustments and more planning.

Spent some time this afternoon with my horses and as i sat in the sun watching my ponies in the field,there was lovely warm breeze blowing across my face and i thought to myself...im so lucky to able to enjoy this.

[Ginny]

Just wanted to post an update here. I've had another weird improvement at the 10.5 month mark. I don't have good sensation in my feet. In fact, in the beginning, they were quite numb. Sensation has been returning and this morning I realized that on one foot, I can now feel different pressures in the arch and the heel. Very weird. I've had a lot more electrical snapping lately and now it's translating into something useful. This is a big improvement, even on one foot because I can now tell where my weight is distributing. Before, it was guesswork and I tended to lose balance because of too much lean in the backward direction. So, even with this many months past, I am still seeing little things that bond with other little things and become something big.

[Tetracyclone]

Strawberry,

RE disability payments from SSI you should make an application with appropriate documentation.

The Social Security Administration will automatically reject your first application and tell you you may appeal. They do this because many people will get discouraged and not try. Make your appeal, and then they tell you they cannot pay unless you will be disabled for a year. Keep at it, and use a local representative as it means a lot for them to see you and talk to you. A human will believe you.

there are significant delays, but once you are approved they will pay you retroactively. I think to 5 months post injury.

Your stamina may improve- I hope so, but it does take time.

[dmuir.slc]

Hi, New to forum. I had L4/L5 slight herniation that led to full Cauda Equina arrest of B&B with severe numbness in legs and significant loss of strength in both legs. I lived with my initial back problem from 03/2001 till 12/2009 without significant issues. The first year (2001)saw a orthopedic Dr who wanted to do a lamectamy - but I wasn't in any significant prolonged pain, so I waited. My right leg did have significant numbness and I walked with a limp for 8 years. Late in 2009 I finally had significant back pain, difficulty walking, but never saw a doctor because I had managed for 8 years. It finally brought me to my knees after a week of severe pain. The day I decided to get an appointment (12/09/09) I did not have any CES symptoms, but later that night, the numbness began. By morning I was in full CES. Luckily for me, by 7:00 pm I was being prep'd for surgery. Surgery was very successful, Surgeon said my back was 100%, only partial disk removal (clean-up). Fully catheterized for 2 1/2 months and told after testing (at 2 1/2 mos), that they had no hope of me regaining normal Bladder function. I self-cathed for another 6 months or so, but then started to function fairly normal (still retaining 150, so not fully draining). My legs have been fairly weak, but seem to be getting better. My balance is still poor, but certianly better than the first 1/2 of year or so. Diet and sitting each time - are essential to having as frequent B&B movements as possible. For a long time - I wouldn't sit and it would create significant blockages and difficulty. My main issues today are: The rehab people only wanted to work on my back strength - no one has ever suggested or encouraged working on my leg strength or doing any type of "electrical stim" to help recover more function. Do any of you have experience or a suggestion on this? Second, I saw a Urologist recently and he wanted me to take Flowmax to relax my bladder to help me empty - I do not have current incontinence issues and do not want to start having leaking problems - so I'm a little nervous about starting on Flowmax to relax the Bladder. Lastly, my pounding of my heels on my feet as I walk is a real pain and I have to rest alot - Is the lack of strength in my legs and the pain of "prolonged walking" justify a "handicap" parking permit? I would probably only use it when I knew I would be out a long time or doing a lot of walking. I do count myself lucky at this point. I have also been watching another FORUM: CESSG@yahoogroups.com and I feel very blessed to have as much mobility and normal B&B function as I have. Any practical suggestions are welcomed. Thanks, Dave

[Kwag_Myers]

strawberry71, on 10 June 2011 - 02:30 AM, said:

What can be done about embarrasing gas that never has a warning, but just happens?

That's a little something I like to call "Booty Tourette's". And yeah, it seems to happen at the most inopportune times.

[strawberry71]

dmuir.slc, on 29 June 2011 - 08:51 PM, said:

Hi, New to forum. I had L4/L5 slight herniation that led to full Cauda Equina arrest of B&B with severe numbness in legs and significant loss of strength in both legs. I lived with my initial back problem from 03/2001 till 12/2009 without significant issues. The first year (2001)saw a orthopedic Dr who wanted to do a lamectamy - but I wasn't in any significant prolonged pain, so I waited. My right leg did have significant numbness and I walked with a limp for 8 years. Late in 2009 I finally had significant back pain, difficulty walking, but never saw a doctor because I had managed for 8 years. It finally brought me to my knees after a week of severe pain. The day I decided to get an appointment (12/09/09) I did not have any CES symptoms, but later that night, the numbness began. By morning I was in full CES. Luckily for me, by 7:00 pm I was being prep'd for surgery. Surgery was very successful, Surgeon said my back was 100%, only partial disk removal (clean-up). Fully catheterized for 2 1/2 months and told after testing (at 2 1/2 mos), that they had no hope of me regaining normal Bladder function. I self-cathed for another 6 months or so, but then started to function fairly normal (still retaining 150, so not fully draining). My legs have been fairly weak, but seem to be getting better. My balance is still poor, but certianly better than the first 1/2 of year or so. Diet and sitting each time - are essential to having as frequent B&B movements as possible. For a long time - I wouldn't sit and it would create significant blockages and difficulty. My main issues today are: The rehab people only wanted to work on my back strength - no one has ever suggested or encouraged working on my leg strength or doing any type of "electrical stim" to help recover more function. Do any of you have experience or a suggestion on this? Second, I saw a Urologist recently and he wanted me to take Flowmax to relax my bladder to help me empty - I do not have current incontinence issues and do not want to start having leaking problems - so I'm a little nervous about starting on Flowmax to relax the Bladder. Lastly, my pounding of my heels on my feet as I walk is a real pain and I have to rest alot - Is the lack of strength in my legs and the pain of "prolonged walking" justify a "handicap" parking permit? I would probably only use it when I knew I would be out a long time or doing a lot of walking. I do count myself lucky at this point. I have also been watching another FORUM: CESSG@yahoogroups.com and I feel very blessed to have as much mobility and normal B&B function as I have. Any practical suggestions are welcomed. Thanks, Dave

[Madwilf]

Hi all,
Just thought I'd give you an insight into 6 years post op! Fastest recovery was definitely in the first 6 months and very slow progress in the following 18 months, but nothing new since then, so what they say is pretty much right.
I still have problems walking far, but it's more muscle fatigue than anything else. Balance is pretty poor if my rhythm is interrupted (not good in crowds or trying to avoid obstacles), but the main thing that I have found with regards to this is, if you have movement, then you need to practise everything over and over and, eventually, you will get it right. For example, 2 years on, I got a job which involved exercising with the elderly...I hadn't realised at this point that the only movements I could make at all were 'one foot in front of the other' and pushing pedals in the car (which still causes problems with pain in the thigh in slow moving traffic)! However, with much perseverance, I got it - spent a lot of time laughing at myself for my pathetic attempts to do a 'step to the side', but you've got to have a sense of humour!
I have no sensation of hot and cold or touch in the majority of my left leg or foot, but it's also often quite painful...I imagine a lot of you know what I mean. Saddle has very limited feeling on the right and nothing on the left. My bladder was badly damaged because I was finally taken seriously when it was holding 2litres of urine and I couldn't pee! I now use ISC due to retention causing recurrent bladder infections and I've started using the Peristeen system for bowel issues, which doesn't resolve everything, but makes it all much more bearable! Wind is a problem I believe there is no answer to (I, personally, think this the one thing I would fix if I had ONE wish...everything else can be managed or adaptations made, this is just embarrassing!).
I can't dance (but I never could anyway), I can't ride a pushbike or a horse any more and I can't dig the garden (either standing or bending over a bed with a trowel) and many other things are difficult, but most are not impossible if you're determined and willing to adapt! I had a baby 3 years ago, which was a bit of a risk, but I wore a back brace throughout the pergnancy and suffered very little all things considered! I'm now learning to ride a motorbike...not easy due to the lack of feeling, but I refuse to be beaten, no matter how long it takes!

The best advice I can give is to have a positive mental attitude, make the most of what you've got and don't dwell on the things you haven't...not a day goes by that I'm not grateful that I can walk (regardless of its limitations and frequently bizarre fashion), that I'm not in horrendous pain any more and, ultimately, that I'm alive and able to spend time with my family and friends...it could all have been so different!

[Ginny]

Madwilf, I was so glad to see your reply! What you describe is so familiar. I'm 1 year post now and can walk pretty well, without much pain, with canes or hiking poles. I'm very grateful for that.

I related, also, to your comments about repetition. I've found that to be the most helpful tool. Doing things over and over until they feel 'normal' is the key. I'm working hard on a treadmill now, practicing walking motion over and over. I also do sidesteps and backwards walking for the same reason.

It's nice to know of your progress and the things you've been accomplishing in life. This sure isn't an easy road but with determination and a good attitude, the best can be made of it.