Saturday, September 6, 2014

A VERY Long Day

Yesterday was a VERY long day. Start with a 4 hour drive to Gainesville VAMC. Add in a 2 p.m. Neurology appointment that didn't start until 3:30 - and didn't finish until 5:30. Then spend 4 hours driving home through a thunderstorm most of the way. My Broken foot (the one I'm supposed to stay off of) wasn't happy about the almost 1 mile of walking to get around the VA hospital - I wasn't happy, either ... for various reasons.

The appointment was delayed because there were new Doctors for everyone (The VA Hospital in Gainesville uses the Students from Shands for a lot of routine things - like follow-up appointment). I DO like my new Doctor (actually a 1st Year Neurology Resident), and he did a good evaluation and was receptive to suggestions about my treatment from me. He agreed that I could taper off of the medication I was taking for Neuropatic PAIN - because I have no pain in my lower extremities. Once he was through and had a tenative plan in place, he had to get it cleared by his supervisor - a Neurologist on staff at the VA Hospital.

After a relatively long wait, he returned - with the on staff Doctor. The Staff Neurologist asked a LOT of background questions about my Active Duty time. Was I exposed to yada yada (Yes to Asbestos, Ionizing Radiation and probably Agent Orange) and then detailed questioning about those. Detailed questioning about my other conditions (Cardiac, Pulmonary, Migraines, Ménière's, etc.).  Then he said,

  • My lack of sensation in my lower extremities and foot drop was probably due to a problem in my Lumbar Spine at the L1 through L3 levels (narrowing of the spinal canal - AKA Spinal Stenosis) and there was nothing they could do about it. It would get worse with time and there was nothing they could do about that, either;
  • He wasn't happy AT ALL about the number of falls (and near falls) I have been having. More on this later;
  • The CT scans of my Lumbar and Thoracic spines were worrisome, and I would be consulted to Orthopedics for that;
  • There were some concerns about some of my lab work, so it is back to the vampires for more blood letting;
  • He wasn't happy about the fracture in my foot (and some of the CT Scan findings on my spine), so he was going to order a DEXA Scan (Dual-energy X-ray absorptiometry) to check my bone density;
  • He wasn't impressed by the walker I have to use to take the weight off of my broken foot when I have to walk - so he is adding that to the Orthopedics consult and suggesting I should be placed in a wheelchair ... because of my foot and all of the above reasons.
It's easy to see why my appointment took 2 hours - and why I'm not real happy right now. This is far beyond what I expected, and far from the news I really wanted to hear.

Friday, August 22, 2014

Just what I needed

As previously blogged, I have no sensation in my feet. Yesterday, I stepped onto an uneven surface - but the lack of sensation didn't warn me that it was uneven ... AND that my foot was NOT firmly planted. Therefore, I almost fell - when my left foot twisted under.

I knew it was injured - because for the first time in years I felt pain ... LOTS of it. I applied ice packs and hot compresses and had no swelling or bruising - initially. I sent a secure message to my Primary Care at the Tallahassee VA just to cover myself, but didn't expect to need any further contact.

This morning, I could barely walk and the least amount of pressure was excruciating. There was also some swelling and bruising - therefore, I called the Tallahassee VA and left a voice mail for my Primary Care.

I was called back within a few minutes - X-rays were ordered; come over right now.

You know it isn't good when the X-ray Tech tells you to wait and brings a wheelchair because - Your foot IS broken!

Now I have this:

and a walker ... and orders to stay off of it!

For those interested, I have a 'Jones Fracture'.

Wednesday, August 20, 2014

Wow ... just, wow!

The temperatures have been crazy hot; it has rained almost every day; it REALLY hasn't been a good time to try to train on my handcycle ... SO! I got a special deal from SportCrafters on an Overdrive Handcycle Trainer.

What's that, you ask? It is a roller trainer that increases resistance just as if you were rolling down the road.

I got everything set up - including the Garmin Ant+ Speed Sensor - and went for a short trial run. It is MUCH harder than I anticipated ... partially because I went "faster" than I anticipated.

How fast did I go? Average was a little over 6 MPH - which is NOT fast. HOWEVER, I hit a PEAK speed of ... wait for it ... 62.3 MPH!

Yes, it was a VERY short peak, but it shows what the new gearing is capable of. Going down a hill will put far less resistance on the wheel - and me. Going up the hills is still going to be a workout, but going down the hills is going to be a LOT of fun!

Monday, August 11, 2014

Good News ... and not so good.

I saw the Chief of Neurology today, and had some EMG studies.

They had baselines from 2010 to compare to ... My nerve conduction, etc has dropped 50 - 60% in the last 4 years - not so good. He said everything indicates progression of my previously diagnosed condition - and it's going to keep progressing. At some point, I will be stuck in a wheelchair.

The good news - he doesn't think the CT Scan results are contributing to the neurological deficit; I'm NOT a candidate for surgery, so there will be no invasive procedures (such as a myelogram) done.

He ordered some more lab work, will do an in depth review of my case and leave notes for the Doctor I see in September.

St. George Island Sizzler 5K

Late Saturday afternoon, I rolled the St. George Island Sizzler 5K ... and it WAS Sizzling! It was over 100°! There are more photos on the way, but here's what I have so far ...

Lined up at the start ...

In the lead!

It was HOT!

Just over 1K to go ...

Rocking my tutu and 1st Place Wheelchair ...

Wednesday, August 6, 2014

One more time

I hadn't heard from my 'New' Neurologist by 1:30 PM, so I called the Neurology Department at the Gainesville VAMC ... and was told:

  1. You have an appointment in September - as if that was supposed to answer my immediate requirements;
  2.  The Neurology Doctors (Fellows or Residents from Shands) are only here twice a month, that's why you haven't (and probably won't) be contacted by your new Doctor before your appointment in September. Only twice a MONTH - Really? This is the ONLY Neurology Specialty Clinic in the VA System in the North FL/South GA Region. It covers North Florida from Ocala. north to the FL-GA Line and from the Atlantic Coast to the Apalachacola River. It extends into Georgia up to Valdosta. You are telling me you only have the Clinic open TWICE a MONTH? They should be open AT LEAST once (if not twice) a WEEK!;
  3. I then asked to speak to the Chief of Neurology - he wasn't in, yada yada;
  4. I then asked to be put through to the direct line to the Patient Advocate (not the voice mail line) - suddenly I was put through to the Chief of Neurology that wasn't in o/O;
  5.  He took my information, said he would review my file and call me right back;

It was more than a few minutes, but he told me he had reviewed the past few YEARS of my chart so he would have a better understanding of my case. The CT Scans needed to be followed up on, but he didn't think the problems shown had any SIGNIFICANT impact on my Neurological issues; My progressive problems were PROBABLY just that - progression of my existing condition; he didn't want to do any invasive procedures such as a myelogram until more in depth nerve conduction studies had been done.

I have an appointment at Gainesville VAMC on Monday (nothing earlier than October, oops September - yeah, right). They are going to do a comprehensive EMG, and then I see the Chief of Neurology ...

The best part of all this ... I first saw the Chief of Neurology when I had my LAST EMG studies and HE is the one that pointed to my Lumbar Spine as the root (see that play on words - tell me I can't pun) cause of my lower extremity neurological deficits!