A New VA - Part 2

Neurology Consult - I'm only here to consult on your neuropathy, I need a new consult to deal with your other Neurological issue ... REALLY? I will deal with my other issues later, I guess.

I will condense the results of several visits and multiple tests:

EMG/Nerve Conduction Studies - slow conduction times and other equally bad results = mixed mode (affecting both the nerves themselves and the myelin sheaths), Sensory Motor (affecting both nerve types - sensory affects ability to sense pain, heat, cold, touch, etc,and motor nerves affect movement) PolyNeuropathy (affecting more than one nerve group - in my case a good deal more than one).

CT (with myelogram contrast in some cases) of my spine - Osteoporotic changes of my entire spine; lots of arthritic changes; NO disk problems - it's all bone issues; a severe narrowing the spinal cord channel in my cervical (neck) spine (myelogram shows it dents the dura, but doesn't impinge on the cord itself - a close call, since compression of the cord is a bad thing ... but it will probably happen in the future). Overall, There is a lot going on with my spine and it will only get worse with time ... that's life.

Lab work - a long history of B12 and Folate deficiency, so most of my neurological problems are probably related to SCD (Sub-acute Combined Degeneration).

Final outcome of the consult with Neurology - I am a high fall risk (that was already in my record); I have to - literally - watch every step I take when I am not in my wheelchair to ensure I have taken a stable step; Physical Torture (or was that therapy) to build up my legs some since I was in a boot for my broken foot for over a year; continue taking supplements. Basically, nothing new except a sort of diagnosis.

Endocrinology Consult - a lot of lab work; more tests; nothing really new learned other than my Osteoporosis is probably worse than they thought and I still have deficiencies that will continue to be treated. A lot of hmmm about the bad reaction to the flu shot while I was on active duty in the military - it MIGHT have been; MAYBE it was; your current neurological issue COULD BE related; etc. (all this about GBS/CIDP).

On a positive note, my broken foot has FINALLY healed (or as much as it's going to, anyway). The boot is off, but I still need to be careful with it; Compression socks are recommended; Podiatry is going to give me a pedicure (okay, they will clip my toenails) because my sensory nerve neuropathy makes it dangerous for me to do so; have a nice day ...

Next up with the VA - another hick up.

A New VA - Part 1

Moving to Kissimmee also moved me to a new region in the VA system. You would think that it would be straight forward since all my information is in the computer system. Nope; Not going to happen; let's reinvent the wheel.

I get assigned a new Primary Care doctor - It's up to him to refill my medications ... and to place consults with the specialty clinics I was seeing in the old region. I get in to see my Primary Care, and he doesn't refill all my meds (leaving out some of the important ones). He also fails to send ANY consults for Specialty Clinic followups that I needed. He did send me to Cardiology - which was a waste of time. Cardiology has already said they have done all they can do and it will take a life threatening event for them to do more.

I started the process of kicking him to the curb ... and what a nightmare that was. By going around some people, I did manage to get into one specialty clinic (Pulmonary) and the Doctor there sent out consults for the other clinics. Pulmonary also said I have, "Compensated Metabolic Alkalosis".

Neurology agreed to see me; Endocrinology declined the consult - REALLY? More on Neurology in Part 2.

I finally saw my new Primary Care - we seemed to click and he agreed with most of my requests - more consults placed and various test ordered. He ran out of time and scheduled a return vist with a 1 hour time slot.

Endocrinology agreed to see me after the second consults (and the test results) More on that in Part 2.

With a few exceptions, the Orlando VA is as good as the North Florida/South Georgia VA Region. It is disappointing that the different VA Regions tend to act as totally different entities. If something is ordered in one Region, you would expect it to get done in another Region without massive quantities of red tape, but ....

More on the local VA in another blog.

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.

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.

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"

The State of the Body

As I previously blogged, the Neurologist wasn't happy with my worsening issues, so he ordered a lot of blood work and CT Scans of my Lumbar and Thoracic Spine.

Reading the Notes by the Neurologist was less than encouraging. He suspects a couple of things that he 'somehow' failed to talk about while I was actual there.

The blood work was mostly normal with a couple of marginal results that MIGHT be contributing factors.

The results from the CT Scans of my Spine are in ... and it isn't encouraging.

The reason for the Thoracic Spine Scan ... "Symptoms suggestive of Thoracic Myelopathy" - which the Neurologist did NOT mention. The findings by the Radiologist - 'yada yada' SIGNIFICANT ABNORMALITIES - ATTN NEEDED (and, YES, he did put that in ALL CAPS).

The reason for the Lumbar Spine Scan ... "Neurogenic claudication" - something else the Neurologist failed to mention. The findings by the Radiologist - 'yada yada' SIGNIFICANT ABNORMALITIES - ATTN NEEDED (and, YES, he did put that in ALL CAPS also).

Google is NOT your friend when it comes to Medical Diagnoses (or suspected diagnoses). Even with a fair amount of medical background and knowledge, I was (and still am to a small degree) in a 'funk'.

The Neurological State of the Body

My VA Primary Care Physician has not been happy with my falls, etc ... so he set up a follow-up appointment with Neurology. I'm not happy with a FOUR hour drive to see a VA Neurologist ... and I'm not real happy with what he said.

He feels some of my problems are due to Intermittent Circulatory Claudication - so he is scheduling an appointment with Vascular Surgery for ultrasound testing;

He is concerned about some finding and is setting up Cat Scans of my Thoracic and Lumbar Spines (can't do a MRI because of the metal in the Right Ventricle of my heart);

Additionally, he is setting up a couple of gallons of blood work (maybe not that much, but a LOT), because some of my issues can be caused my some Vitamin and Mineral problems;

All this coordinated through my Primary Care Physician in Tallahassee.

Once the results are in, then more intensive testing will probably take place - oh joy!

Other than that, I'm in pretty good shape. I'm getting a prescription for an anti-nausea medication to take during my Migraine Headaches (and possibly be placed back on Fiorinal with Codeine - everyone needs barbiturates and codeine [NOT!])