Friday (8/26/2016)

Update:

It’s been a tough week.  Last Saturday, I over did it (it doesn’t take much) and my leg was painful throughout the weekend.  On Monday (8/22), I had an EMG done on my residual limb.  I had pictured some electrodes taped to my leg and them measuring the nerve and muscle responses with gentle impulses.  What I didn’t know about was the electrode painfully pushed into my leg with increasingly more powerful shocks time after time.  I’ve had worse procedures done; but that is one I hope never to have done again!  The hard part was that after each shock I was told to “Relax.  We have to increase the intensity and try that again.”  It’s hard to relax when you know what’s coming.  The second half of the procedures with needles wasn’t bad comparatively.  The doctor doing the procedure kept asking if I was okay and if I wanted to quit.  I told her to proceed because the needles weren’t that bad.  She turned around and said to my wife, “He’s got a high threshold for pain…FOR A GUY!”  Very funny, doc!

Following that procedure, everything hurt for the next couple of days.  I had PT on Tuesday and the therapist worked on my lower back and sciatic pain.  The pain at the distal end of my residual limb was pretty intense too; but he worked at getting my spine straightened out.  Of course, after that the pain continued. 

On Wednesday, the parts I was missing finally arrived so I could put on the new handrims on my wheelchair. The traditional, thin, silver handrims aren’t easy to grasp.  They work fine indoors on level floors.   Whenever I went out, I had to wear a pair of leather gloves to get the grip I needed.  My new Natural Fit rims are more ergonomic—deeper and wider—making it easier to grab.  I had to use my Dremel tool to make some adjustments on the wheel to get them to fit; but I really like them now that they are installed.  One of the best purchases that I have made!

After installing the handrims, I went out to do three quick errands.  It’s the first time since Saturday that I felt good enough to even wear my prosthesis.  It started off as uncomfortable and quickly switched to painful.  It felt good to get the leg off as soon as I got home.

On Thursday, I had an appointment with my CPO (certified prosthetist orthoptist) to get fitted for a new shoe and measured for a new orthotic insert.  It was nice seeing everyone at the shop again.  It has been awhile.  I officially let them know that after surgery that I won’t be coming back to have them make my new prosthetic limb.   I’m not having a traditional amputation revision this time, so I had to find a CPO who specializes in prosthetic legs for an ERTL amputation.  Nobody in my area has experience, so I’ll have to travel to get my leg done.  I’m sorry to end my relationship with my current CPO.  She has literally been with me every step of the way since my amputation (that amp humor was on purpose).  She has worked so hard to help me.  We’ve spent many hours together working on my prosthesis.  It feels like saying goodbye to family.  It stinks; but it is the right thing to do.  

Besides the nerve pain in my leg, my back and sciatic nerve pain is still bothering me at the end of the week.  I hope it goes away soon.  I try to avoid taking pain meds but it takes a lot out of me to “ignore” the pain all day.  My sleep suffers at night because of it.  Recently however I’ve started getting 6-7 hours per night (up from 4 hours per night—so the steroid injections have helped some).  I do better on 8-9 hours; but I’m thankful for what I’m getting.  Just a little too much pain to rest well, I guess.

Less than a month left until my surgery.  I’m eagerly looking forward to it with hope for a better outcome.  I’ve got my hotel for pre-op appointments booked.  I still haven’t decided whether to fly or drive.  Details.  Details.  Details.  I hate not having every detail ironed out right now.  I think that is a desire to achieve some sense of control in my life, when so much of my life is out of my control.  I know that it will all work out in the end…I just need to relax about it.

Sunday (8/21/2016)

Update:

Yesterday (Saturday) went well.  I felt the best that I have in some time (minimal pain & good sleep the night before), so I decided it was time to finally finish redoing a flowerbed that I’ve been SLOWLY working on.  The weather and my body both cooperated and I was able to finish putting in the last corner of the brick edging.  I have a list of about 5 major projects that I planned for this summer.  This is the second (and probably the last) that I get to cross off the list for this year.  I did decide to hire someone to reseal my deck and wheelchair ramp instead of trying to do it myself.  So three things will get done!

After finishing the flowerbed (which took about an hour at my pace) I decided to go do some errands.  Instead of using the wheelchair, I elected to continue wearing my prosthesis.  At my last stop, I realized that I had done too much and aggravated the nerves in my residual limb.  At one point I got hit with excruciating nerve pain while I was in Walmart.  I’m certain that people were wondering why I grabbed hold of a clothes rack and was hanging on a few minutes trying to catch my breath.  I bet I looked rather funny!   I took the leg off as soon as I got home.  The nerves in my leg were not happy with me the rest of the evening.

Pain in my leg woke me up in the night.  This morning the nerves are sort of throbbing.  With the pain I was having I decided not to wear my prosthesis today; I’ll go in the wheelchair instead.  The thought of putting my weight back on those angry nerves isn’t something that could face.  After church I went to my daughter’s home for lunch.  There are stairs and narrow doorways inside where my wheelchair won’t go.  So I tried out my new iWalk 2.0 that I purchased.  It is sort of like a strap on crutch that you kneel on.  I bought it with just this scenario in mind.  It worked pretty well.

This kind of back and forth with pain is what I’ve been facing since December 2015.  I cannot do much; but I have a good day and then do just a little too much and BAM!!!  I’m hurting and less able to do even the simplest task.  It’s not like I am going crazy and trying to walk all the way around the block!!!  Despite every effort of my medical team here, this is as good as it is going to get for me as I am right now.  It certainly isn’t what many amputees experience.  On a standard bell curve, my outcome after amputation is way at tail end of poor outcomes.  My limitations are sometimes overwhelming to me; instead of dwelling on them, I just try to do the best I can with what I’ve got.  However, that doesn’t mean that I won’t seek an improvement if one’s available.  That’s why in just over a month, I’m headed to Indianapolis for surgery on my residual limb.  The surgeon will take about five hours to repair and rebuild my leg.  I don’t relish the recovery time in the wheelchair afterwards (2-3 months).  That means that I’ll miss whitetail archery season this year (I hate not being able to get out into the woods).  But it’s an investment into a potentially better future.

I have a couple of FaceBook friends who have had this surgery done by my surgeon and they have had awesome results!  One of them just walked over six miles without any pain.  WOW!  That sounds like a fairy tale ending to me!  Of course, my results may vary; but their reports are so encouraging to me.

So I continue on, one day at a time, putting my best (and only) foot forward.  We’ll see where it leads me.

Wednesday (8/3/2016)

Update:

I met with the Surgeon (Dr. Ertl) and the prosthetist (Rob Pinkston--the guy who will build my leg) and I am headed towards surgery!  Dr Ertl believes he can significantly reduce my pain and get me more active again.  YEAH!!!!  

Surgery will probably be in late September after I get back from visiting my sons in LA.  I'll be in the hospital for 3-5 days.  After my six week post-op appointment, if things go well I'll be cleared to get started on my prosthesis.  

My prosthetist for this style amputation is actually located outside of Cincinnati.  I'll spend two week with him initially.  So I could be walking again by my birthday in November!!!

There aren't any guarantees but I'm excited because there is hope.  I'll be traveling back and forth to Indianapolis and Cincinnati a lot over the next year, but it will be worth it if I can walk, mow the lawn, ride my bicycle, get out in the woods, etc. again.

My son, Jon, and I are driving part way home today.  It took 8 1/2 hours to get down here with construction and the pain relief breaks I needed.  So we are driving half way today.

I appreciate everyone's prayers and kind words.

Saturday (7/30/2016)

Update:

On Tuesday (8/2), I’ll be traveling to Indianapolis for an evaluation with Dr. Ertl concerning a possible surgical reconstruction of my amputated left leg.  My appointment with him is on Wednesday.  My son, Jon, will be going with me to do most of the driving. 

I’ve had pain issues in my limb for the last two years.  Through the efforts of my medical team I’ve been able to get out of the wheelchair and spend a very limited time each day walking.  But the pain is continuing and there aren’t any viable options left here; so I’m looking elsewhere.

My amputation is a traditional transtibial style.  One of the possible side effects of the traditional amputation is nerve pain developing.  I’ve had reactions to the major nerve pain medication typically used, so I cannot get relief that way.  “I asked my doctor and found out that this drug was NOT right for me!”  I don’t have any structural issues that doctors using the traditional approach see as operable.  But the pain is real and although it starts off fairly mild immediately, it grows in intensity the longer that the leg is on.

At this point, I cannot accept that I have to be stuck in a wheelchair most of the time and then being severely limited by pain with limited activities when I’m in my prosthesis.  I’m hoping to find a solution so that I can become more active, pain-free, and more fully involved in life again.

Doctor Ertl performs osteomyoplastic amputations, commonly called “Ertl” amputations named after his grandfather who invented the procedure.  An Ertl amputation requires both bony and soft-tissue reconstruction to provide an end-bearing residual limb for the amputee.  Contrary to a traditional amputation, an Ertl amputation ends up with the end or bottom of the limb weight bearing.  That changes everything!  One obvious difference between the style of amputations is the Ertl bone bridge connecting the distal ends of the tibia and fibula.  Check out the two photos.  The first one is an X-ray of my leg currently.  The second photo is an example of X-ray of a leg after an Ertl amputation. 

When asked the difference between the traditional and ertl amputations, I’ve been using this word picture (it isn’t perfect, but it is helpful).  The traditional amputation is like rough carpentry used to frame a house.  The Ertl amputation is like finish carpentry used in detailed woodwork.  The traditional method works fine for many amputees; but it hasn’t for me, so that is why I’m headed to Indianapolis to see if I am a candidate for this more detailed surgery.

I haven’t traveled very much in the last year and a half because riding in a vehicle tends to become painful to me after a while, so I am a bit concerned about how well I’ll do riding in the truck for 8 hours.  I’m hoping that it will be very clear to both the doctor and to me whether we should proceed with this surgery. 

I really hope that I am a candidate for this revision surgery because quite frankly, if I’m not or this doesn’t work, I think I’m stuck the way I am.  I’m very excited and grateful to get this appointment so quickly.  It will be great getting a better understanding and maybe taking  a step in the right direction.

Saturday (7/16/2016)

Update:

The world's first parking meter was installed on this day in 1935 in Oklahoma City. I've given my prosthesis the nickname of "Parking Meter" because with my nerve pain I can only wear it for about three hours a day and then "Time has Expired" and I have to take it off. I'm seeking to have a revision surgery done so I can get "Free Parking." :-)

Monday (7/11/2016)

Update: 

For the last couple of years, I’ve been struggling to find a solution to my hypersensitive nerves.  They’ve severely limited my use of my prosthesis and my activities.  Switching to an elevated vacuum socket and the use of steroid injections has allowed me to get out of the wheelchair for 3-4 hours a day; sometimes I could do more but it always comes at a cost.  I easily can overdo it and then spend a week or two recovering and getting the pain back under control.  I’ve lost the ability to do so many of the things that I used to take for granted.  Sometimes it weighs heavily upon me. 

Recently, I’ve been struggling with whether I should I just accept my limitations and be content, or should I try another option.  I was told by the surgeons in Rochester at Mayo that reconstructive surgery would be the last ditch effort with limited hope for success. I’ve decided that I should try anyway.  Then if the end result is that I am still limited, then I will choose to be content.  I am considering having the surgery done in Indianapolis.  The doctor there uses a different technique (named after his grandfather) which should address my specific complaints better than a typical revision surgery.  I am currently in the process of setting up an evaluation to see if I am a suitable candidate for the surgery.  I’ve spent the day doing on-line research and communicated with a couple of other amputees that have had the same procedure done.  Their reports were very encouraging to me and have given me confidence that this is the right thing to try.  I’m not certain how soon the evaluation can be done and then how long it will take to get the surgery scheduled, but I’m excited that there is a possibility of improvement. 

Traveling to Indianapolis for the evaluation, then back for the surgery, and back for some post-op visits will be a bit of a hassle; but if it improves the quality of my life it will be worth in the long run.  I actually considered doing this last year; but I wasn’t quite ready to commit to it.  I’ve spent the last year turning over every rock nearby looking for answers and haven’t found any.  So now it is time to turn over that other rock that is farther away and will take more effort.  Hopefully I’ll find what I’ve been searching for.

Thursday (6/9/2016)

Hurd Update:

I last posted an update in April.  In some respects nothing has changed.  And yet some progress has been made—sort of.  I’m still undergoing the physical therapy about once a week seeking to encourage healing in my nerves; we are slowly making progress on the fit of my elevated vacuum prosthesis; and I’m scheduled to have more steroid injections at my trigger points (mainly at the end of my fibula and tibia).  I haven’t really done too much of anything over the last couple of months.  I usually can wear my prosthesis for about four hours each day before my nerves signal that it’s time to take it off.  Lately when I put the prosthesis on I immediately have phantom pain in the form of squeezing my toes into shoes about 2-3 sizes too small.  As the day wears on, it switches from discomfort to outright pain.  I start getting electrical shocks that shoot down the leg and out of the phantom foot.  The more active I am the quicker the pain intensifies.  After I take the prosthesis off, my nerves continue to be active and I have pain/discomfort for hours or all through the night.  My eyes continue to be resistant to treatment so I’ve continued my monthly eye injections to reduce/control swelling in the retina.  I want to be walking and riding my bicycle but the pain levels limit me to short distances (30 yards).  I am still able to go to the gym most weeks which help me feel better and promotes all around good health.  With my reduced level of activity (and my continued desire to eat), I’ve put about 15-20 pounds back on.  That is very distressing to me.  Guess what I want to do for comfort?  That’s right, eat.  Despite all this my blood glucose levels, and cholesterol levels, and blood pressure remain at good levels. 

This past week, I had a follow-up appointment with my primary doctor.  My last appointment had been about eight months ago.  Both his nurse and he commented on how good it was to see me walking and out of my wheelchair.  That actually was a good reminder to me.  Eight months ago, I had been wheelchair bound for almost a year.  No matter how much I would wish for more improvement, I need to be thankful for the progress and abilities that I am currently enjoying.  Sometimes in the day to day struggle it is hard to see that.  Sort of like, “I cannot see the forest for the trees.”

According to my records, since my amputation in December 2013, I’ve had 246 medical related appointments (including various doctor appointments, therapy visits, labs, visits to the prosthetist, eye doctors, etc.).   I’m a busy guy and my insurance card gets a little hot since I’m using it all the time!  I continue to laugh at myself remembering how I used to be frustrated because I had to take my mother to her doctor appointments about every three to four weeks.  Ha!  I got her beat; and a bit contrite over my past attitude.

I am thankful that I have the freedom to get out of the house and go on an errand or two all by myself.  I am able to do the shopping (if I plan it right) or go to the gym.  I have to be careful about how much I try to accomplish each day because I only have so much energy and time before “the meter on my leg expires” and I have to get home and ride the wheelchair the rest of the day.  I’m thankful for my wife’s constant labor and for the help that kids give me when something is beyond my ability (mowing the lawn is too much for me right now).  I’m thankful for the extra time I get to spend with my granddaughter—time spent with her is a healing balm!  I’m thankful that I get to walk some each day and am not in the wheelchair 24/7 currently.  I’m very grateful for my medical team who continue to strive to figure out the unusual medical puzzle that I am.  And I am grateful to God for giving me this opportunity to continue to enjoy life and that my life did not end on Thanksgiving Day 2013. 

Life is much different than it used to be for me.  I’ve found that it doesn’t do me any good to wallow in memories about my past abilities and the life that I have lost.  I have to focus on the good and awesome things that I have opportunity to enjoy each and every day.  I’ve come to realize that I will never probably become a poster boy for amputees showing off how I am able to accomplish amazing feats.  I may never be able to hold down another job.  There are many “normal” things that I may never do again.  All that I can do is to continue to do my best and live the life that I currently have been given.  I strive for improvements and I pray for positive change; but I am learning contentment as well.  For right now, this is me.  This is who I am.  This is my life.  And with God’s help, I choose to be okay with that.