Saturday (9/23/2017)

One year ago today had a life-changing surgery done.  I had a revision done to my below the knee amputation by Dr. Janos Ertl.  Before the surgery I was basically wheelchair bound because of intense nerve pain in my residual limb.  My constant nerve pain went from the bottom of my stump all the way up to my lower back.  I couldn’t sit in a chair or ride in a car for more than an hour without terrible pain.  I was using opioids to help make the pain bearable.  With a lot of work, my prosthetist fashioned a leg that I could wear for up to an hour a day, but then the pain was too great to stand any longer.  I was sent by my local doctors to the Mayo Clinic in Rochester, MN; but even there the doctors had no answers and said there was nothing they could do for me.

                                                                                        

Fortunately a FaceBook friend had been politely pestering me to see Dr. Janos Ertl in Indianapolis; and I had nothing to lose so I went to see him.  I am so glad that I did.  I will admit that I was a bit skeptical when he quickly told me he could help me.  I had the surgery done and he delivered more than he promised me.  All I really expected was for a reduction in my leg pain so I could walk again.  Not only did the ERTL revision take away all my leg pain, all the pain in my lower back disappeared as well!!!!  Dr. Ertl gave me my life back!  I’m so grateful to Rob Pinkston for encouraging me to seek Dr. Ertl out.  And I’m so very thankful that Dr. Ertl for doing something completely different than the standard style amputation. 

Here are a couple of articles to read for more information about the ERTL procedure: 

https://opedge.com/Articles/ViewArticle/2010-10_02

http://www.ertlreconstruction.com/2015/07/osteomyoplastic-amputation-reconstruction/

I’ve had a number of other issues in the past year that haven’t allowed me to get back to doing everything that I have wanted to do; but the constant, excruciating nerve pain in the residual limb and lower back is not one of them.  I’m walking today because Dr. Ertl is willing to go well beyond the limits of a standard amputation. 

My original amputation was done on December 3, 2013.  

Sunday (8/20/2017)

Update:

On Monday (8/14) I went to the ER with chest pains.  They did a lot of tests and concluded that I did not have a heart attack.  So I was sent home and scheduled for a follow-up with my primary physician.  I was told to get a cardiac stress test as soon as possible.

On Thursday (8/17) I went back to the ER with chest pains again.  Once again they said I had not had a heart attack.  This time they admitted me to the hospital for observation and further testing.  Lots and Lots and Lots of testing.  

On Friday (8/18) I took the stress test and they found that I had one small area in the lower left chamber that wasn't working correctly (ischemia).

 On Saturday (8/19) I had a heart catherization.  They did not find anything that could be stented, fixed or repaired.  My arteries are all clear.  They are attributing my chest pain to Small Vessel Disease, a common issue with those who have had diabetes.  So they prescribe medicines and discharged me on Saturday night.

Whew!  What a life-changing week!!!  

I am extremely grateful for the care I received.  My Hospitalist and nursing staff were outstanding!!!!  Thank you Sarah, Kendall, Emily, and most especially, Dawn.   I had a three hour episode of chest pain on Saturday and Dawn was with me for almost every second, getting me the care I needed and helping me through it all.

This week ahead, I have two medical appointments to go to and otherwise I am staying home and doing absolutely nothing!!!

I'm scheduled to fly to St. Louis next Monday (8/28).  My brother is getting married Labor Day weekend and I am performing the ceremony.  So I plan on being "good boy" and not take any risks this week so that it actually happens.

I'd appreciate your prayers for the medication to work well with minimal side effects, and that I do not have any repeat episodes of chest pain.  Hopefully, we'll get the med levels balanced and I will be able to resume more of my "normal" lifestyle soon.

Sunday (8/13/2017)

Update:

I've made good progress in reducing the amount and the intensity of headaches, dizziness, and foggy thinking that I've been experiencing; however I still am facing problems and limitations with it.  One of my disappointments is still not being able to attend church.  Puts me in sensory overload.  :-(

Physical Therapy focused upon pinched nerves (especially in my neck) seems to have reduced my symptoms.  I'm able to get out and do more things; but I still have moments and days where I'm in pain. 

Friday (7/28/2017)

Update:

Since the beginning of May, I’ve had constant headaches, mental fogginess, dizziness, stiff and painful neck, buzzing tightness around the head, etc. which has severely limited my activity and ability to function.  I’ve undergone numerous doctor evaluations and tests (around twenty appointments so far in the last 2 ½ months) trying to determine a cause and a cure.  I’m pleased to say that in the last week, we may have stumbled onto something.  It may not solve all my problems, but it has helped some already.  I’ve even had two days where I was able to get out and do more activity than I’ve been able to tolerate at any time in the past three months.  I have a long way to go to get back to normal; but this is encouraging and gives me some hope.

What seems to have helped me is a combination of some exercises for vertigo, a steroid nasal decongestant, and most importantly, physical therapy on my neck.  Apparently I have some impinged nerves causing a lot of the problem.  I’m hoping with continued treatment that all of the symptoms will eventually fade away and I can get back to my normal life (household chores, exercise, volunteer work, driving distances, etc.).  It’s been tough not feeling well enough to do anything but sit around doing nothing.  Hopefully all that changes beginning from right now.

Monday (6/19/2017)

Update:

I got the results of my brain MRI back...and the doctor said they didn't find anything!

Well what he actually said was that there was "no evidence of stroke, tumor, or other structural cause" for my symptoms.

So, I guess they did find a brain.

So that is good news since the only thing they could have found is life-threatening serious stuff. Although it doesn't put me any closer to knowing what the cause is, it does relieve some anxiety.

Like a game of Clue, I don't know who done it yet, but I have been able to cross a few suspects off the list.

My symptoms continue and I would like to find a treatable answer and resume my "normal" lifestyle.

Wednesday (6/14/2017)

Update: 

Since the beginning of May I haven’t been feeling well.  At first I thought it was just because I was out of shape and had been aggressively working at getting back into shape since the beginning of April.  While I enjoyed working out six days a week, I was extremely tired and worn out all the time.  I figured that I’m just older and I haven’t been able to be too active over the last four years, so it was natural that it would take a lot out of me to get back into shape. 

I would feel so worn out after exercising that I had to sit in the truck for up to an hour to feel good enough to drive home from the gym.  But then I started getting dizzy and almost passing out and I knew that something was going on and I needed to be checked out medically.

So far I’ve worn a heart monitor, had an EKG, and had a ton of blood work done.  And so far everything has come back normal; but that’s not the way I feel.  I have a constant headache.  If I do the slightest activity I become a bit dizzy or become mentally foggy (thinking slows down, etc.).  I feel a constant pressure on my head like I’m wearing a tight stocking cap that’s too tight.  Pain meds don’t help.  Sitting still in my recliner reduces my symptoms somewhat, but the moment I get up they come right back.  I usually can do one or two short things a day and then I’m done.  I haven’t even been to church for the last month because I wasn’t feeling up to it.  I actually made it to the worship service one week; but had to leave immediately because the music was so overpowering loud to me (my wife told me it was no louder than usual).  I’ve stopped going to the gym and curtailed most other activities, some of which I dearly miss. 

 I was just seen by a neurologist and I’m having a MRI of my brain done in the morning (6/15).  After his exam, he told me that he thinks “the MRI will show that I have a ‘normal’ brain.”  Ha! Ha!  He’s in for a surprise—I’m definitely not “normal”.  He obviously hasn’t heard any of my jokes or seen any of my memes on FB!!!

Right now, tentatively, my symptoms line up with something called “New Daily Persistent Headaches”.    The good news is that for some people the symptoms go away after a few months to a couple of years.  Of course, for some people the symptoms continue for years or decades.   Most of the time medication has little to no effect.  The doctor told me the best thing to do is to minimize the things that trigger the symptoms and take it easy.

Who knows?  Tomorrow’s MRI might show some other cause for what’s going on.  Or if nothing shows up on the MRI, another test that my primary doctor lines up might pinpoint a diagnosis. 

At first, I really figured it was something wrong with my heart.  Then I figured my arteries must be blocked.  Those don’t seem to be the problem, so now we are checking out the head (tumors, cancer, stroke, etc.).  The neurologist doesn’t think we’ll find any of those things wrong with me either.

I really don’t know where this is headed.  I don’t have any answers right now.  I’m just trying to make it through each day as we search for a diagnosis and hopefully a solution. 

The past month and a half have been hard on me emotionally.  My doctor has been taking good care of me but the medical system seems designed to test your patience.  Like most of us, I want answers right away and I want my problem solved quickly.  I also know that after I get this resolved that I am headed to surgery for my carpal tunnel and cubital tunnel (in both arms eventually).  So I feel like my summer is already gone.  This certainly isn’t the summer that I had planned.  And yet I can still say that life is good!

 I appreciate your thoughts and prayers.

Saturday (5/27/2917)

Update: 

I got my results back from my heart monitor.  My heart is fine and looks normal.  Yeah!  Thank you, God!

I am still having episodes of dizziness and mental fogginess, so next Wednesday I’m having an ultrasound done of my carotid arteries to check for blockage there.

I am tired of having to wait a week or two after one test is done before the next one; but as a friend reminded me, that is a good thing.  It means that the doctors aren’t worried about a serious condition that requires immediate emergency treatment. That is so true!

I am looking forward to feeling 100% again and being able to fully resume my activities without concern.

Unique Encounter:

I went to Walgreen’s today and as I got back to the Pharmacy, another customer got very excited and starting talking to me.  The lady was very personable and pleasant.  Everything she said should be in ALL CAPS and Italics because that is the way she talked.  “Oh my!  I love your prosthesis!  I’ve never seen one like it before!  Why does it look like that?”  (I was wearing shorts). I patiently explained how flexible the foot was and how well it worked on uneven ground, etc., etc. etc. 

It was all a bit strange.  I’ve never had an encounter quite like that before.  She seemed genuinely happy and pleased for me.  My wife asked me later if it made feel uncomfortable.  I told her that surprisingly it did not.  Some people would have freaked me out coming on so strong; although she was a stranger, she made me feel very comfortable to talk with her.  The Pharmacist witnessed it all and she gave me a big smile afterwards as if to say, “You handled that very well”.