Tag Archives: Personal Stories

Update – 18 Months Ago… My Journey with Cauda Equina Syndrome Began

18 Months Ago…

On Feb 11, 2013, I had never heard of Cauda Equina Syndrome (CES).  That changed the next day.  This very day, 18 months ago, I awoke with no feeling below my waist.  Something very wrong was going on with my body!  I didn’t know it then, but I was beginning the journey called Cauda Equina Syndrome.

On this blog I’ve chronicled the first year of that journey.  I have been very blessed in my recovery, especially given that it took 14 days to have my decompression surgery and not having ANY feeling below my waist.  I won’t cover the details of what has been written before, but this update gives a quick look at my progress since the one year mark. 

Many neurosurgeons and other physicians say that nerve regeneration only occurs for 12 months, while others say 12 – 18 months is the time in which what healing will happen does happen.  My physical therapist told me 18 – 24 months.  I don’t know if this is “frontline” info or whether she was just trying to motivate me further than I already was. 

For me, the months since my 1 year anniversary have been challenging with some minor regression – but, I am still seeing spurts of significant regeneration taking place.  I went through a period of frequent nerve pain in the top of my right foot.  This seemed to be aggravated by my evening commute, which is usually around 1 hour 10 minutes.  The last 10 – 15 minutes of the drive I would get the “electro-shock” feeling so familiar from other body parts earlier in my recovery.  

These were so painful I almost became a dangerous driver.  I fell back on my flight training skills – ABC – Aviate (Fly the plane, in this case, drive the car – make sure you don’t run into someone or something), Navigate (Don’t get lost and for the car it means make sure you don’t miss a turn while distracted), Communicate (In the air, we’d get help from controllers on the ground, in the car, this just means Comfort – try to find a position where the pain subsides.  Those pains left me about a month ago.  As they left, they presented me with a going away present of more feeling in my feet.  I now only have impaired feeling in a ½ - ¾ inch band around my foot, beginning about ½ inch above the bottoms of the feet (my toes excepted as they have had feeling for some time.) 

 My legs have feeling back except for the backs of the legs and inner portion of the buttocks, but only the lower ½ of that and the corresponding front area.  That too is a recent improvement.  I am now able to walk without assistive device for over 100 feet, but my legs and hips are completely exhausted by the effort and are in moderate pain by the end.  But I am improving, slowly but surely, I continue to strengthen and improve.

 I still cannot stand for more than 20 – 30 seconds, nor sit for more than an hour without problems.  This limits my ability to travel and is sorely missed (no pun intended.)  I keep pushing to improve.  If I don’t, I won’t know how much I can improve.  So I work full time, with 2 hours round trip commute time.  And I walk whenever I can, to the point of not being able to any more.  By the time I get home I am exhausted.  I still have not had to have surgery on the torn tendon in my right foot. 

 Despite that, God has allowed me to lead small groups and classes at church.  I am truly blessed.  None of us who are afflicted with CES want to stay as we are.  We learn to deal with the injury and we fight to overcome as much of its affects as possible.  It is easy to look around, seeing people who do not appreciate the simple act of being able to walk.  Or run.  Or stand for a few minutes.  Or travel 6 hours to visit with old friends or many other things.  Looking at these will surely lead to defeat, depression, and a downward spiral.  Look at what we can accomplish instead!  Life is different, not over.  It isn’t fair, but then we’ve known that for a long time.  I choose to let my disability strengthen me, rather than define me.  I challenge you to choose your goal and work for it!

 

A Real Shower while Living with Cauda Equina Syndrome

Cauda Equina Syndrome Finally Singing in the ShowerI've reached another milestone!  This week I was able to take a full shower while standing!

That doesn't sound like a big deal to some, but to us who deal with Cauda Equina Syndrome standing for any length of time is not an option.  One of the things CES takes from you is leg strength.  Even if feeling returns, strength may not.  So to stand in the shower for the few minutes it takes to shower, and adding the physical exertion of showering, is a major milestone for me!

One letdown though is that it did take so much strength that I can't do it every day, or even most days... yet.  But the future is before us and we shall see what it brings, but for now I cannot ditch the shower seat.  I am currently passing Month 13 with CES, so I've really got to get busy on my Month 12 and Month 13 reports!  Hope to have them up this weekend.

Cauda Equina Syndrome – Unforeseen relief

I really didn't want to believe it...

But today it is for certain.

Last week, I had increased problems with my balance.  Now that really helps when I've also got a torn peroneal tendon on the right ankle!  Anyway, Thursday evening my Cauda Equina Syndrome upped the ante - I got increased pain in my right foot/ankle (nerve pain, muscle cramps, imaginary pain - all of it).

ps21v14So imagine my surprise when late on Saturday, just before bedtime, the balance returned along with greatly decreased pain!!  I went to bed thinking it to be a fluke.  I didn't mention it to my wife because I thought it was just one of those transitory things we get when we suffer with CES.

Well Sunday morning, the pain was still very low.  We went on to church and came home.  I waited for the pain to increase...   After returning home from church Sunday evening I was very hopeful that a permanent change had occurred, but still I waited.

On waking this morning, my feet felt like I could run on them again if not for the tendon.  Of course my legs wouldn't let me run anyway, but it had now been over 36 hours - long enough to declare that my foot pain has dramatically changed for the better.  All of this just after the 1 year mark.  In fact, as I post this, tomorrow marks the 1 year anniversary of my decompression surgery.

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I've also regain some feeling in the back (hamstring) area of my left leg - that's new feeling too!  So progress continues.   God has a wonderful sense of timing - just when you think you need encouragement in one area, He gives you encouragement in another.   And that encouragement reaches out and stretches itself right into the area you need it to go.  So that is a double blessing!  Thank you, Lord!

Continuing the walk...

D.V.

David

 

CES | Month 11 with Cauda Equina Syndrome

Month 11 has flown by (as has Month 12 so far, thus this late post).

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Month 10 ended with some bad things happening in my personal life.  These continued through most of Month 11 as well.  I was dealing with the feelings caused by my family member and also a friend.   Of the two, the broken friendship hurt far more.  The relationship with my family member had been on a long slow descent with an abrupt, but short, cliff at the end.  The broken friendship is something that I didn’t see coming… a total surprise and shock.  We’ve all been there before, but it has been so long since someone I held that close in my heart has done such a thing.

 

.unknowingI don’t want the friendship broken, but it remains that way to this day.  For almost a month, I didn’t know how I would feel should my friend ask for forgiveness.  Eventually, the hurt receded.  This allowed me to align my feelings with my caring for this person.  I am now at the point where I can forgive my friend should they ask for it.  I can also continue the friendship; however it would not be as close as before… I’m not at a point in my life where I am willing to trust liars enough to allow them into my circle of close friends.   Perhaps I never will be.  The really sad part is that I don't think this person has the first clue that they've done anything to hurt me.

 

 

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Christmas came and went during Month 11.  We had a nice, quiet time - but the older I get, the more I miss having a family that loves one another.  We don’t have children and that puts us in a lonely place too.  I come from a very dysfunctional family.  Perhaps that is why I have such revulsion for liars.  My family’s holiday gatherings (Thanksgiving & Christmas) were always big shows where everyone put on a mask and lived out a lie that we were all normal, caring family.  The rest of the year told a different, sad story.  I survived, but not unscathed, by getting out.  2014 marks my 21st year of living hundreds (sometime thousands) of miles from family.  If you rule out the “visits” when they were just bringing my Mom to see me, or pick her up, I can count on the toes of one hand how many times my family has visited me in those 21 years.  I, however, have visited them at least a dozen times.

On to my CES…

While I was walking like Frankenstein and unable to feel my ankles, it seems I had such a poor gait that I tore a tendon in my right ankle.  Now that I have some feeling there, I knew something other than the nerve pain of Cauda Equina Syndrome was going on.  The Doc said only surgery will fix it, but for now I’m only wearing an ankle brace.  Had I noticed this earlier last year I would have had the surgery, but it’s a new year, with a new insurance deductible.  And of course I’m on a high deductible plan (not by choice – it is all my employer offers).

I have regained feeling in a lot of areas.  The results of the nerve conductivity tests showed most of the L4/L5 damage has healed.  This was the level at which the disk blew out, so I happy with that finding.  However the points below L4/L5 still show significant injury and the jury is still out as to what will happen with those areas.  I do have more “electric shock” type feelings, mostly in my right foot.  The backs of my thighs and lower buttocks are still numb as is most of my genital area.  B&B is still an issue that takes a lot of management (that’s Bladder & Bowel, not Bed & Breakfast).

I have been encouraged, as Month 11 closed, by the small group Bible study we’re doing in our home.  Between that and studying for my CMA exam in February, I haven’t had much time for other things or maintaining relationships.  I’ll be so glad once this exam is taken.  I’ve had to give up some things – things I love doing - on the schedule in order to concentrate on these.  After the exam, I have a couple of other projects on my ready list, so I will continue to stay busy.

Does my Cauda Equina Syndrome affect all of this?  Definitely!  Does it help shape my life?  Absolutely!  Is it defining me?  In some small way… it is a part of me, just as my arms or legs are.  Yes, I have bad days, both physically and emotionally – hopefully not both at the same time!  Through it all I rely on God’s love to see me through.  In His love He knew that my back would be injured and He used that event to prod me to grow closer to Him.  He has sustained me, nurtured me, and lifted me up.  I am a better person, at a better place in life because of God taking the lemons of Cauda Equina Syndrome and helping me make lemonade out of them.  Where that will lead I do not know, but what an adventure I am on!