Endocrinology

December 16th, I traveled to the Gainesville VAMC to see Endocrinology.

After an extensive workup, the Fellow went to talk with the head of Endocrinology, and I had the (questionable) pleasure of having a workup by her, too.

They are concerned, and want to find the root cause of the Neuropathy and Foot Drop - possible causes mentioned in the Doctor's Notes are scary ...

1. Guillain-Barre syndrome - possibly caused by a VERY adverse reaction to a Flu Shot while on active duty;
2. Subacute Combined Degeneration of the Spinal Cord - oh joys.
3. Possible exposure to Agent Orange

They have also confirmed the bone density loss ... and the increased risks of spinal fractures - especially IF (when) I fall.

Lots of lab work ordered, and return in 2 - 3 months.

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.

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!

Follow-up

Since I never heard back from my Neurologist, I called the Gainesville VAMC yesterday. My Neurologist was a Resident/Fellow from Shands ... and graduated and no longer was associated with the VA; they had to assign a new Doctor to my case; he would review things during my follow-up appointment in OCTOBER; call my Primary Care Physician in Tallahassee; yada yada.

Needless to say that was frustrating.

I sent a Secure Message to my Primary Care Physician at the Tallahassee VAOPC ... and the Nurse noted that I had contacted Neurology at Gainesville, so the matter should be resolved. o/O

I responded back that it wasn't resolved, and called the Patient Advocate for my Region - and had to leave a Voice Mail and was told it may take up to 48 HOURS for them to respond.

It only took 24 hours for the Patient Advocate to respond. They contacted Neurology ... My October appointment has been moved up to September (something 'impossible' yesterday); I have a new Doctor assigned, but he is out today (but is supposed to contact me tomorrow); yada yada.

My Primary Care Physician called - he is filling the prescription that the out-going Doctor failed to fill; told me the new Doctor's name and verified that he has a message waiting for him; yada yada.

I feel a little better about things now - I was falling through a crack and managed to patch it up some. Now I just need to see where we go with the CT Scans of my Spine that show "Significant Abnormalities - Attention Required"