Tag Archives: Disability

Exercise, Exercise, Exercise

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Exercise.

Easy to say, many times hard to do…

Especially when you have CES.

Bowel problems, Bladder Problems, Constant Pain, Numbness, Drop Foot, Decreased mobility, Partial Paralysis, etc. These are not issues that make it easy to actually get any kind of healthy exercise on a daily basis.

When I got CES in 1999, one of the after-effects was that I instantly became home bound. Many days, I was bed bound.

This resulted in my gaining weight. A lot of weight.

When I was much younger, I ran Marathons at 155 lbs.

A few years after CES, I was at 300 lbs.

I tried various forms of exercise with little results.

I tried walking around my neighborhood but the strain on my legs and feet was too great. For much of the early years, I wore AFO braces on my bad foot and these braces just tore up my foot if I walked any great distances.

I purchased an expensive treadmill for in my home. I figured the cushioned walking pad of the treadmill would put less strain on my feet and legs. Well, the pad was cushioned, but the walking was still difficult and painful.

I was at Physical Therapy one day for one of my myriad of CES-related issues and the Therapist had me ride an upright stationary bicycle. The only hard part was climbing on and off the thing, otherwise, riding it was extremely easy.

I found that if I rode the bike fast enough, and far enough, I would break a good sweat and would get my heart rate up. I climbed down off the bike and found that my legs were tired, but not hurting. I had found a way to exercise!

I bought myself a Stationary Bike and set it up in my living room at home.

I started riding it in January of 2011.

I rode as much as I could when I did not have something better to do while trapped here at home. With my health issues, there was many days and weeks when I could not ride, especially when having bowel difficulties, and I was usually only able to ride about 6-7 miles at a time before needing a break, but I would climb back on that bike whenever I could not find anything to keep me occupied.

I ended up riding over 11,000 miles in 2011 and 2012 combined.

Within 6 months of starting riding, I had dropped 40 lbs of weight.

Of course, when the CES issues would keep me off the bike for any extended periods, much of that weight would come right back, but I was able to stay much healthier when I was able to use the bike.

***I use a step stool in order to help me climb on the bike, and have stirrups on the pedals in order to hold my numb feet in place. My butt is numb, so seat comfort is not an issue, but you do have to wiggle around a good bit in order to get properly balanced while riding. Riding for extended periods does put a bit of a strain on your lower back, so I tend to not ride much more than 20-30 minutes at a time.***

In order to avoid boredom on the bike, I always ride with my IPOD blasting my favorite music, and I started doing “virtual” rides around the US and CANADA.

Basically, I picked a starting point on the map and then started pedaling. At the end of the day, I checked to see where I would be on the map and then blogged about my current location, with pictures of that town, on my humor blog that I wrote at the time.

Each day, I rode in my living room, while I was “virtually” riding from town to town across the US and Canada.

This year, I decided to fly my Exercise Bike over to the United Kingdom in order to start a tour of Europe that will take me all year. I started in Scotland and hope to visit as many countries as possible before years end. I am hoping for 10,000 miles this year, as long as the CES will let me stay on the bike.

I used to be a runner, but CES stole that from me.
I also love the activity of Hiking, but CES has stole much of that from me.
I used to love long walks around my town, but CES has stole much of that from me.

When CES allows me to climb on the bike, I CAN and DO beat the CES for as many miles as I can pedal. My family looks at me like I am crazy. I will pedal for 20 minutes or so, climb down, do other things, take a few hours off, then will climb back on and pedal another 20 minutes, with this being repeated during most of the day. Why do I do it? Because I NEED to do it in order to try to stay somewhat healthy and to keep my weight down, but also because ALL THESE MILES ARE MILES THAT CES HAS NOT STOLEN FROM ME.

A Doctor with no clue about CES might look and say “Well, how can you ride over 11,000 miles if you are disabled with this so-called terrible condition that no one has ever heard of?”

I would answer that by saying….. “Yes, I rode over 11,000 miles in two years on an exercise bike, with CES, but without the CES, maybe I could have ridden a REAL bike twice that distance”.

Out of the 730 days of the last two years, I was able to ride on about 300 of those days. As you can see, CES won the majority of the days by far and kept me off the bike. But, for those 300 days, I WAS THE WINNER.

What forms of exercise have YOU found that are possible with CES?

Please share other forms of exercise in a comment so others can give them a try.

Any exercise is GOOD exercise.

I urge you to try to find what exercise your body can tolerate with your CES issues and try to do that activity as much as possible.

I am tracking my “virtual” progress across Europe on a new blog that is here. My European CES friends might want to watch outside their windows because sometime this year, this Idiot from Texas, on a Exercise bike, might come pedaling down your street.

A Question about being born with CES

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**The following comment from reader “Cloud” appeared on another of my CES posts and I thought it might be useful to make this comment into a post so this reader might get some answers to his question. This regards something I have not read up to this point about CES, the horrific prospect of actually being born with the condition. If anyone out there has any information related to being born with CES, please let me know. Thanks.

I was born with spinal issues – numbness waist down , I did not walk, crawl, sit alone until age of 5. Then age of 12, I had my first bout of legs going numb, peeing on myself etc. This occurrence has occurred off and on for years.

I’m 50, so you can imagine how many years I’ve dealt with this.

In 2003, TWO Neuro-Surgeons said they would NOT put me through the risk of being paralyzed. It was 110% chance I would end up paralyzed, 75% it would occur on its own. They chose to let nature take its course.

They diagnosed me as being born with Cauda Equina Syndrome .

In the past 8 years I haven’t been able to work beyond 30 hrs due to pain. Then this year – June, after a 3 hr road trip, worse pain imaginable just from sitting. (The first), and then August-Sept I ruptured L5-S1 , not sure if it occurred at work or home. The New Neuro-Surgeon seems to be all gung ho – about doing surgery.

My Gut Tells me don’t do it……

Has anyone else been born with it?

A Cruel Dream that I Have……….

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There is a cruel dream that I have…….

That I am sure most of you have also shared.

Whether you have CES, another Chronic Illness, or whether you are in constant pain on a daily basis….

We have all had these same thoughts on many occasion.

A little backtracking before I get to the dream.

Whether it be CES or Chronic pain…

Whether it be in the USA, Canada, the UK, or some other country…

The truth is that we treat damaged cars better than damaged human beings.

Case in point:

In most countries, you have Auto Insurance to protect your vehicle.

Your car gets in an accident.

You call your Insurance carrier.

You tell them your car is damaged.

They arrange to have the car quickly inspected by an adjuster.

The adjuster determines that your car is indeed damaged.

The insurance company then pays for you to have your car repaired, or even replaced, often within 1-2 weeks after your accident.

Then we have actual human beings.

Something happens and you end up injured. You now CES, another Chronic illness, or now am in chronic pain.

You see Doctors.

The Doctors determine you are indeed injured.

You go to whatever agency in your Government that handles benefits for the disabled and injured. You apply for those benefits.

In most cases, you end up waiting MONTHS or even YEARS before you finally are awarded benefits, if you are awarded benefits at all.

I have read countless comments from other CES sufferers out there, no matter what Country they reside in, that are having nightmares in trying to get the benefits they deserve from their own Governments.

We will pay to fix a damaged car, seemingly in the blink of an eye, but will drag our feet forever before paying to take care of a damaged human being.

Why?

Well, in the case of CES or Chronic Pain, it is because we have an invisible monster lurking over our shoulders at all times.

We are like the young child who wakes up screaming in the middle of the night, screaming for his/her parents, telling them that there is a scary monster living under the bed, and that the monster wants to eat the child…

The parents, of course, look under the bed, see nothing, and then calmly tell the child that everything is alright, go back to sleep…..

The child continues to wake up screaming every night.

The monster is real. They see it. They know it wants to eat them. Why do the parents not understand this?

Because, the parents cannot see the monster.

We CES and Chronic pain sufferers are saddled with an invisible monster that most people cannot see. The vast majority of our symptoms are invisible to everyone but us.

We go to our Government agencies, seeking assistance for our disabling symptoms, we list all these disabling symptoms, and then we are met with a huge “PROVE IT!!” type response.

Many of our symptoms, pain being the main culprit, cannot be proven.

We spend the rest of our lives spending endless days trying to PROVE to the outside world that our monsters do indeed exist.

Like I have said on many occasions, like many of you, I look pretty normal, health-wise. I have a limp due to my foot drop, my left leg is atrophied due to nerve damage, but other than that, I look HEALTHY. Like most of you, my problems are all internal, hidden from public view. I have hidden monsters.

For the benefit of all these people and agencies that question the existence or disabling characteristics of our monsters….

I have my cruel dream.

To the person, agency, or Doctor that is thinking over the question as to whether or not I am truly disabled, and whether or not I should receive benefits…

I would wish that they live ONE WEEK in my shoes.

Just ONE WEEK.

ONE WEEK of near constant pain in the back or in the legs.

ONE WEEK of sleepless nights due to the pain.

ONE WEEK of going to stand up from a chair, only to lose control of your bowel or bladder.

ONE WEEK of being out in public when you lose control of your bowel or bladder.

ONE WEEK of wanting to be intimate with your partner, only to find that the “sexual areas” of your body are completely numb.

ONE WEEK of hobbling around on a bad foot, or two bad feet, that are crippled with the effects of Foot Drop.

ONE WEEK of having many parts of your lower body completely numb. A WEEK of not being able to feel your feet or your shoes, your butt, your groin area, your lower back, etc.

ONE WEEK of crippling Depression brought on by the fact that you are constant pain, are constantly worried about losing control of your bowel and bladder, you have difficulty just walking across your home, and the belief that most people probably think you are just a whiner and complainer who is exaggerating everything since they cannot see most of the symptoms you CLAIM to have.

If only these people could walk in our shoes for ONE WEEK!!

Then, maybe…. just maybe…..

We could get treated as well as damaged cars.

We could be injured with CES, have this verified by a Doctor, and then have our Government agencies pay us the benefits we DESERVE…..within 1-2 weeks just as if we were a damaged car…..rather than dragging out our cases for months, or years, and without making us go through miles and miles of red tape and paperwork in order to prove that our monsters are indeed real.

We like to say that we would NEVER wish CES or Chronic pain on anyone….

Well, I’m changing my wish…

To all those that doubt us, I do WISH they would spend a week living in our shoes.

I seriously doubt that they would enjoy the experience.

That’s my dream!!

A Question: Venous Insufficiency and Blood Clots

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Does anyone else out there in CES-Land suffer from Venous Insufficiency as a result of their CES?

In all my surfing of CES-related materials, I have found very little mention of this condition in relation to CES patients.

My CES nerve damage has affected my left leg and foot much worse than my right leg and foot. Ever since I woke up from the surgery that crippled me, I have had limited movement in my left foot and ankle, resulting in immediate foot drop, and I have also had numbness and nerve pain issues to quite a severe level in that foot and leg. Right from the moments after the surgery, it was obvious that the circulation had also been damaged in that leg and foot. My left leg and foot were always purple and swollen, whereas my right side appeared pretty much normal.

I got my first blood clot (DVT) in my left leg about 1 month after my surgery. I spent a week in the Hospital undergoing blood-thinning treatments while worrying myself sick that any slight movement might dislodge the clot, travel to my lungs, and kill me.

After that first clot, I was put on daily doses of blood thinning medications AND was prescribed anti-embolism stockings to wear in order to help the circulation in my legs.

I got my SECOND blood clot in that same leg three months after my surgery, and after I had been on medications and wearing the stockings for two straight months. Back to the hospital for another week, and another week of worrying that any slight movement might kill me. The Doctor was shocked I had gotten that second clot, considering I was taking every precaution, including medications, in order to prevent another clot.

Most worrisome with both clots was that due to the CES symptoms, I was unable to recognize many of the symptoms of the clots themselves. Clots in the leg are usually very painful, whereas my legs were basically numb most of the time due to the CES. The pains I did get in the leg were due to the nerve issues courtesy of the CES, I never felt the pain from the clot itself. The clot will often cause your leg to swell noticeably, and also the leg will turn red, but I had those symptoms from the moment I woke up after the surgery.

This ended up being the main factor that killed me ever being able to work again. I was told to stay home, rest, and hope that my condition improved, meaning the circulation would have also improved, and that I could hopefully then resume my career. My condition never improved. All the CES symptoms persisted, along with the horrible circulation in my left leg.

** A specialist relayed to me that the nerve damage to my spine was so severe in the nerves that lead to the left leg that the leg was not getting the necessary inputs from the brain to pump blood back up towards the heart, resulting in the blood tending to pool in my left leg and foot. **

I have been taking large amounts of blood thinning medications every day since that first clot in 1999. I have been on these medications for nearly 14 years now. Taking high doses of blood thinners is fun in itself. The smallest bumps into an object turns into massive cuts and bruises. Just brushing my teeth often makes my gums bleed. Getting an injection of any kind often results in a good deal of bleeding that still freaks out all my nurses. Any type of surgery requires that I be off these medications for at least a week in advance so that I do not bleed to death on the operating table.

I’ve resigned myself to the fact that I’ll be on these medications the rest of my life. I have not had blood clot #3 YET, and have not had a clot since June of 1999, but I like to think that the current high doseage of the medication, along with my practice of frequently laying down during the day has allowed me to beat clot #3 thus far.

My left leg is still crap, is still frequently swollen and discolored, and is the cause of all my walking difficulties thanks to the severe drop foot.

Has anyone else out there run into any problems with their circulation since getting CES? I know mine is directly related to the CES because I never had a circulation problem in my life prior to that surgery.
Have any of you also suffered DVT blood clots in your legs due to the CES?

I’m just curious.

How are you feeling today?

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How are you feeling today?

Probably the single most important question that I wish family members would ask me on a daily basis.

Do you ever have days when you are hurting, or are battling other aspects of your continuing CES nightmare, where the only people to ask you how you are doing that day are your online CES friends or other friends outside of your family?

If you have been battling CES for years, do you sometimes feel like people in your family have somehow forgotten that you are hurt?

Do you sometimes get the impression that your family is somehow annoyed with your continuing health problems?

I’m no Psychologist, but I get these feelings all the time in my own battle with CES.

Like most of you, my days are a constant, never-ending struggle. Whether it be battles with chronic pain, difficulties walking, bowel issues, etc… it truly never ends.

I cannot remember the last day that I felt 100% completely “normal”. This is most likely due to the fact that I have been like this since 1999.

Most days, during the school year, I am home alone for the majority of the day while my wife is at work and my son is at school. As such, I fight my daily CES battles alone. Most days, my family will come home and we will discuss the wife and kids days as we eat dinner. I usually have nothing to add to the conversation, in that most days I do nothing of note other than trying to keep the house clean, pay bills, do laundry, etc. My daily “job” is fighting the effects of CES. Talk about a depressing job!

Most days, no one asks me how I am doing physically, or mentally.

They all know that I am in near constant pain, that I have bowel problems, that I have trouble walking, and that I have battled crippling Depression for years.

Yet most days, the only inquiries I get as to how I am doing, come from my fellow CES sufferers or from a small group of online friends who have been reading my humor blog for years.

I’m a walking contradiction.

On one hand, I’m a very private person when it comes to my health issues. I really don’t like talking about them in person, with anyone. I don’t really walk around just volunteering information about what particular health issues are giving me problems on any particular day. Bottom line: I don’t like talking about my CES.

On the other hand, I have a tremendous need to know that people still care about how I am doing. Even though I don’t like talking about my CES struggles, I want those around me to at least ask me how I am doing. This at least reinforces the knowledge that people care.

I know my family loves me more than anything. I know they care about my health and about how I am doing.

I think that after so many long years, they have just gotten NUMB to the whole CES nightmare. Day after day, week after week, month after month, and year after year of the same old nightmare, just gets old after awhile.

They can ask me how I am doing on any particular day and they would most likely get the same answer. “I’m hurting”.

There is nothing they can do to alleviate my pain, nothing they can do to help me walk better, and nothing they can do for the bowel issues.

I would bet this leads my family members to feel totally powerless.

So, after so many years, my health is just what it is. I believe they think there’s no need to ask me how I am feeling every day. They already know what the answer will be.

But, that doesn’t mean that I still don’t desperately want loved ones to ask me.

CES is lonely enough as it is. It does help us immensely to know that people in our families still care about how we are feeling on any given day.

So, how are YOU feeling today?

Freedom from CES

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** This post is actually a wonderful comment that CES friend Michelle left in response to my earlier post about hiding from CES. This was such a beautifully articulated and thoughtful comment that I thought it would make a great post in itself. In this comment, Michelle lays bare some thoughts and feelings that we should all keep in mind when it comes to our daily battle with CES. Thank you so much Michelle! **

Freedom!

Ahhhhh- Freedom from the nightmare that is CES!

It’s more than a wish- it’s a daily goal! ANY little “reprieve” we can get we savor as if it is the most buttery piece of steak on our fork to bless our palate.

Take that freedom EVERY minute you CAN and do NOT apologize for doing so!!!

Though I am CONSTANTLY reminded of the chains that bind me to CES physically (because of the incessant and extreme physical and neurological pain) I STILL can “escape” the Demons of CES mentally at times.

The psychological “damage” that CES does to us- from reminding us of our limitations and driving us into the depths of severe depression- is so relentless and extreme at times that we often feel we CAN’T escape our shackles.

The chains bind us to it so deeply that at times, and I shudder to think of this because of the TRUTH involved, some of us may consider (or even just “think about it”) that our only “real option” for relief and escape would be death- a permanent solution for “freedom”.

But there is ONE area where we CAN have the freedom we crave (and SO deserve!) because WE can have control over our thoughts, feelings and emotions. This is not to say that depression should be minimized or thought of as to be our “fault” IN ANY WAY because we didn’t “control” it. NO!!! On the contrary, we CANNOT control depression mostly because there is a chemical imbalance within our bodies that “helps” to push our negative, helpless and hopeless feelings even further down.

When we are NOT suffering from the evil Demon of depression, we CAN control how we respond to ourselves. And we CAN learn to LOVE the “new us” that was created (out of our will and control) by CES. For example I can learn to LOVE myself despite the fact that I CAN’T run. I CAN learn to love that I have a very creative mind and I can use it -and that is something CES CAN’T take from me.

THOSE are my moments of “freedom”.

They may be short lived at times but they ARE tangible, sought after, cherished. My freedom is in my mind where I can rock climb, run, go caving and hiking without any problems.

In my mind I can do anything I’ve ever WANTED to do.

In my mind I can find peace and contentment at times.

In my mind I CAN be FREE- even if it is for only a moment.

In my mind.

Hiding from CES

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I know the title of this post is misleading and false. You can’t hide from CES. You can try as hard as you might, but CES will always follow you without fail.

That doesn’t mean that we can’t TRY to hide from our CES on occasion. Sometimes, hiding from your CES can give you back a small piece of the life you once enjoyed. Rest assured though, these periods are brief, because no matter how hard you try, CES will always succeed at resuming control of your life.

I have been hiding under my CES rock for quite awhile now. I figured if I hid long enough, maybe the CES Demons would give up waiting for me to come out and would then go away and leave me alone.

As most of you know, I am dealing with the continuing saga of my severe foot drop that has made simply walking into a real chore. After a failed surgery and after trying every kind of brace on the planet, my Surgeon wants to fuse my lower leg, ankle, and foot together. Given my poor circulation in my bad leg, this would require two months of bed rest after my surgery. The prospect of being trapped in the bed for two months, with the horrendous bowel problems that CES has “blessed” me with, is just too much for me to bear.

Like many of you, I have quite a few bad days where my bowel issues control seemingly every waking minute of each day. I do NOT want to endure those bowel nightmares while confined in my bed. I know this surgery is my last hope of saving the foot before amputation becomes my only alternative, but I just can’t force myself to give the Surgeon the OK to schedule the surgery.

A few weeks ago, I went into my closet and was shocked to find a brand new pair of shoes that had never been worn. I had bought them quite a while ago, right before one of my recent foot and leg nightmares, and had never got a chance to wear the shoes. I put them on. I was able to walk fairly well because the brand new shoes still offered a great deal of support. I knew that within weeks, the shoes would start to break down as my ankle and foot struggled to roll over as I walk. I figured I had maybe three weeks of walking with these new shoes before I would be back to hobbling along like a crippled 100yr old man.

I then thought that maybe I could just buy a new pair of shoes every three weeks or so. I could look at it as a new medical bill that had to be paid each month. I was just putting off the inevitable, but at least I could walk fairly well for a few glorious weeks each month.

I wore the new shoes and happily walked better than I had walked in months.
It was heaven to go out and walk and NOT be constantly reminded of having CES.

I tried to block CES from my mind and life completely.

I stopped visiting the CES support groups on Facebook, stopped reading about CES on the Internet, and basically just did everything in my power to keep CES out of my mind.

Those bowel problems? “Must be something I ate..”
Those constant pains in my back and legs? “Must be that truck that hit me”

I’ve tried to pour my energy into new posts on my humor blog, using the one trait that CES has not damaged, my warped sense of humor.

But, like I said before…. you can try as hard as you want, but CES will not let you escape. The bowel or bladder problems will come screaming back, the nerve pains will strike, the walking difficulties will hit you, and the Depression demons will again track you down.

That’s not to say that I don’t highly recommend trying to escape CES whenever you get a chance. Enjoy your brief periods of freedom and brief episodes of happiness.

I’m a realist. I know the new shoes will break down on me in ever quicker fashion, and that my foot drop issues will soon make it so that NO shoe or brace will help me, thereby making this radical fusion surgery my only available option.

I know that at some point, I’m gonna have to just face the fact that I will have to endure the two months on the bed and that I can’t escape that.

I know that if this surgery fails, the only option left is amputation.

But, until the day comes when I break down and schedule the surgery for the fusion, I’m gonna limp around fairly well on these fairly new shoes, and I’m going to continue to try to hide from the CES demons that are looking for me.

I thank all my CES friends out there and apologize for suddenly disappearing off the face of the planet. I totally appreciate how much we all need the support and understanding that only fellow CES sufferers can offer us. Hopefully, someday, in our lifetimes, Medical Science will find a way so that we CAN outrun our CES Demons, hopefully allowing us to have our old lives back. Until then, I’m still going to have the occasional episodes where I try like mad to hide from my own CES.

One day I will win.

As will you.

CES Specialists… Do they even exist?

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You know, I bet you could probably count the number of Doctors that solely specialize in Cauda Equina Syndrome, and nothing else, on one hand. And that is worldwide. I really think that so-called CES Specialists do not, for the most part, even exist.

The closest I have ever found, in my case, was a Neurosurgeon in Indiana who treated many CES patients, but CES was NOT the main focus of his practice.

If you are like me, you have CES, and you also have a pretty substantial list of Doctors that you see for the myriad of symptoms that CES has given you.

In my case, I have a primary Family Doctor. She sees me for all Non-CES related health issues, and also treats my CES bowel incontinence issues and monitors my blood-thinning medications.

I have an Orthopedic Surgeon that deals mainly with my Foot Drop issues, and with the two fractures in my feet and my ankle that I have gotten as a result of my CES-impaired gait.

I have a Pain Management Specialist that monitors the Spinal Cord Stimulator that was implanted in my back, in order to reduce the constant pain related to my CES, and he also monitors my pain medications.

I have a Neurologist that deals with all the issues related to my chronic nerve pain. When needed, he has given me Epidural Injections in my spine to try to aleviate some of the electrical-shock pains which frequently drive me insane.

I have a Dermatologist that treats the Skin Cancer I have been afflicted with for the past decade. The Skin Cancer is not related to the CES, but when cancers have to be surgically removed from my legs, which have poor circulation due to the CES, certain additional precautions have to be taken.

I have a Urologist who sees me for Bladder-related issues due to the CES.

I have a Psychologist who I see for Depression related to my ongoing battle with CES.

That’s 7 different people I go to. That does not include the Physical Therapy folks I see after each surgery.

I bet most of you probably see multiple Doctors as well in order to battle your CES.

Like many of you, I seem to spend most of my time each month bouncing from one Doctor to the other.

Each Doctor knows that I have CES, but for the most part, they really know very little, if anything, about the condition, aside from what they have learned from me.

I would bet that I am the only CES patient that they currently treat.

Each Doctor just concentrates on their one area of specialty. The Surgeon deals with the foot drop. If the foot drop suddenly starts causing new neuropathic pains in my foot and ankle, then I have to go see the Neurologist. If one of the Doctor’s prescribes me something that causes Diarrhea, which is bad when you have incontinence issues, then I get sent back to my primary Doctor to deal with the incontinence.

It’s a non-stop routine of bouncing from one Doctor to the other.

Apparently, we are “lucky” enough to be saddled with a condition that is so rare, that even today, their are not really CES Specialists where you can go and be seen for ALL of your CES problems, in one office.
You can look at the directory of a major Medical Facility and will see Doctors specializing in every condition under the sun, including many that you have never heard of, but I doubt you will find a “CES Specialist”.

You might have such a Doctor if you live in a large city, but if you are like me, and you live in the country, you are up a creek. I’ve had CES since 1999 and have been bouncing around from Doctor to Doctor ever since.

I don’t think that will ever change.

Have any of you been lucky enough to find a CES Specialist? Someone that focuses most or all of their practice solely on treating CES patients? If yes, if you don’t mind listing the name and location of the Doctor, it might be useful to other CES sufferers in your area that might be looking for such a Doctor.

Where I have been hiding….

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Where have I been hiding lately?

Well, for the better part of a month, I have been hiding in my CES Nightmare Cave, lost in the dark, because like an idiot, I came in here without a flashlight.

Many of you fellow CES sufferers deal with foot drop issues. Foot drop is totally different in each patient. I think there are probably no two foot drop sufferers that have exactly the same issues with the condition. Some folks can’t lift their foot up, some have a foot that wants to turn to the outside, others have a foot that wants to curl inward, some have a foot that flops around like a broken cart wheel, etc.

My drop foot issues with my left foot has reached the end of the line after a battle lasting the past 13 and a half years.

I have tried three different AFO braces, all with no success.

I had a tendon transfer surgery to try to re-position my foot into a more normal position so I could walk somewhat “normally”. Not only did the surgery fail, but it actually made the foot drop problems even worse.

I have a Surgeon who wants to permanently fuse my ankle and foot together. This would “hopefully” fuse my foot into a frozen 90 degree angle to where the foot would be sticking straight out and would lie flat on the floor if I were standing in place. Walking up or down any type of slope will be “different” seeing as how the foot will never again bend, thereby it will not be able to adjust to walking on hills.

In theory, fusing the ankle and foot will keep the foot drop demons from making the foot roll over, thereby improving my walking. As with any surgery, there is the risk it will not work. My already atrophied and weakened left leg may precipitate the foot fracturing at some point. There is the risk of infection, which is high with me given the poor circulation in my left leg, a leg that has already gotten two blood clots since my injury.

The surgery will require at least 2 months of bed rest, given my poor circulation, and the extra care needed to make sure the fusion heals properly. Months of Physical Therapy will follow. The Surgeon says I should have the surgery “quickly” if I want to be up and walking around by Christmas.

My only remaining option, aside from the surgery, is amputation.

I have waiting all Summer for an appointment at the Mayo Clinic, one of the finest medical facilities in the world, so that I could be evaluated to see if there are any other options for my foot. Maybe there is a surgery, procedure, brace, or treatment that my Doctors here are not aware of. If anything can be done for the foot, the Mayo Clinic would surely know.

Last week, I got a letter from the clinic. They will not see me. They reviewed my case and determined that there is nothing different that they can offer as far as treatment.

So, it’s have this fusion surgery and then lay in bed for two months…

Or continue to try to stumble around on a worthless foot that won’t even allow me to walk to my mail box without great difficulty.

Normally, the two months of bed-rest would not be all that bad of an ordeal, but as you CES folks know, CES will make it into a nightmare.

Having bowel and bladder episodes while confined to the bed is bad enough. Add on top of that the fact that my wife is working and my son is now back in school. Five days a week, I am now home alone for most of the day. If I have a bowel or bladder “issue” and need assistance, I am out of luck.

So, needless to say, this whole nightmare with my worthless foot has really brought out the Depression demons, another aspect of CES that most of you also deal with. I am just tired……….. Tired of dealing with this crap. For most of the many years since 1999, I have always been stronger than this condition and could always fight my way through these bad episodes. I could always write my way out of the Depression episodes, seeing as how CES could not alter my love of writing. Now, the CES has even taken that from me. These treatments and surgeries are supposed to be happening so that I can achieve a better physical condition afterwards. So far, none of them have worked. I am so tired of being told that “this will help you….”, only to be told months later… “You are one of the few that it did not work on…”.

This surgery will probably NOT work. No other treatment for my foot has worked, why would this one be any different? This surgery will just create a two month nightmare where I am trapped in my bed dealing with all my other CES crap. I’ll go through that nightmare two months, months of rehab, and then will find that the fusion did not work. That’s just how it is with me.

I just want them to quit delaying the inevitable and just chop my foot off right now. Chop it off and give me a prosthetic. I would bet my house that I will have a prosthetic within 2-3 years anyway, so why delay the inevitable?

Of course, the Insurance company will probably not pay to have the foot amputated, until I have tried this latest surgery and then had it fail.

I am looking for another surgeon to give me a second opinion on the surgery. I want a surgeon who is open to the idea of amputation and who can give me the pros and cons of having this fusion surgery or just going forward with the amputation.

I have to do this quickly because the clock is ticking. If I want to be recovered by Christmas, I need to act fast. I have spent the last two Christmas’ home alone with physical issues related to my CES, while the rest of the family went off on our normal Christmas tradition of going to my In-Law’s home for Christmas. I don’t want to miss three Christmas in a row.

Today, the CES demons cost me a puppy.

For the past couple years, I have wanted a small puppy that could follow me around the house and keep me company during the day. Our two cats would not be keen on the idea and would probably end up pooping and peeing all over the house in protest, so I decided I would hold off and wait on getting the puppy. Today, one of my wife’s co-workers was giving away free Yorkie Puppies. My wife, who has never been real keen on the idea of a puppy, actually sounded excited when she called to ask me if I wanted one. For a split second I was prepared to scream YES!!!

But then the CES Demons reared their heads and I came to my senses. I am looking at spending two months in bed. I can’t care for a puppy. I can’t even take the thing across the house to let it outside to go to the bathroom. Shoot, I have enough trouble just getting myself into the bathroom after a surgery. So, no puppy.

So, this is where I am today. I just wanted you all to know what was going on and that I have not fallen off the face of the earth. I’ll post again soon. Best of luck to all of you in your continued battles with CES! Keep up the fight!!

Mark’s Story

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I remember the moment that my back problems started – I was 30, playing cricket, mistimed a shot, and twisted to the ground with my bat. I didn’t feel anything then, but when I woke up the next morning, I couldn’t get out of bed.

My first experience of chronic pain, not pleasant.

Things subsided after a year or so – chiro and frozen peas helped – and I led a normal life for about 15 years when my lumbar/ sciatic pain came back in spades. Doctors/physios gave their usual pat diagnosis that surgery versus doing diddly gave equal chance of recovery. So, no point doing an MRI or surgery, just live with it, take lots of painkillers and plenty of mind over matter.

I ended up taking 16 pills a day, but alcohol and codeine were really the only things to touch it. Indeed, on a memorable 36 hour flight, I spent 12 hours standing at the galley with an ice pack on my back, drinking gin and tonics, just to get down to a bearable pain threshold.

Things ultimately came to a head on New Years Eve 2010 when the lumbar pain went through the agony threshold into suicidal.

A few days later I was back down to semi-bearable chronic pain, so I went shopping.

Waiting for the wife, I leant back against a post. Walking off, I noticed the pain had disappeared and walked home with a mixture of relief and foreboding. Sure enough after taking a nap, without pain – bliss – I noticed a strange numbness on my thighs. When I went to take a pee I couldn’t feel the old todger, plus it was an effort to get anything out despite being bloody desperate to go.

Panic?

I would have crapped myself if my bowels were fully functioning, but they were gone too.

I sped to my local A&E, ignored the prominent sign that advised those with back problems to bugger off and consult their GP, and waited to see a medic. Of course being a back problem it was not classified as urgent so it was 4 hours before a very young student medic examined me, probed me, and discovered I had no perianal feeling – at which point I pointed out that in some cultures we were now officially wed. Despite this fairly obvious red flag he still debated whether to let me go home take an aspirin and see if it got better (perhaps he thought he had healing hands – I wouldn’t know, couldn’t feel them) or consult his superior.

Thankfully he decided on the latter, who immediately diagnosed CES, rushed an MRI scan and transferred me to a specialist neurosurgery hospital in Liverpool where I was operated for an exploded L5/S1 disc.

From first loss of pain to surgery was about 32 hours. I was lucky, very lucky.

Waking up I was thankfully completely pain free, but the saddle numbness and bladder retention were full on. Not being able to pee was really awful, I’d have swapped it for the pain. My anxiety was not helped by the cheery nurse who first catheterised me then suggested I might try doing it myself next time as CES tends to be fairly permanent.

Fortunately my bladder started to function about a week later, my bowels took a little longer – about a month. After a few more months the numbness receeded and after 18 months it is residual. I walked like a gimp for a few months but have worked hard to correct it and my gait has improved.

Overall, I would say I have achieved about 80% recovery, for which I am exceptionally thankful, particularly when reading the experiences of others. Having endured years of back pain culminating in CES it is clear that the classic red flags are redundant. Unless you happen to be leaning on an MRI with a surgeon in the room, they are too late, Damage is done. If you do happen to be in the room make sure it’s with a neurosurgeon, they understand nerves, not an orthopaedic, who understands bones and power drills. Finally, I thank my stars for the NHS, it’s much maligned and not perfect but when the chips are down and an emergency is diagnosed, the medics swing into action with remarkable speed and skill, no questions asked and irrespective of who you are and size of your wallet.

It has given me a chance of a fairly normal life.

Priceless.