It’s been a bit since I last posted, and there has been quite a lot going on in this wonderful maze I call life. I have had the joy (note heavy sarcasm) of having to deal with both my local government taxing agency, and the federal disability people. Along with all the trips to governmental offices, I’ve been chasing down doctor’s reports, radiology reports, and pushing for someone to pay attention regarding my medical issues.
“The only two certainties in life are death and taxes.”
When I got sick, and lost my job and therefore my income, certain things ended up on the back burner as far as financial responsibilities. One of those things was my property taxes. I was setting aside some money, as I could, to cover the taxes, but it just wasn’t enough, and the county went after me for the money I owed. I don’t have a problem with paying my “fair share” seeing as how I do use government resources and enjoy driving on streets that are not littered with potholes. It is just that I find it disingenuous that the government is willing to prop up the home market by pushing for refinancing of homes, yet is unwilling to work with a homeowner regarding taxes. My home is totally paid for, no mortgage, no bank-note, no liens, nothing. The only cost to me, other than the regular household expenses, is my property taxes.
When I started to fall behind on my taxes, I went to the county and asked what I could do to keep from losing the place I have lived for the past 17 years, and their response was to borrow the money. I have for many years tried not to put myself in debt, and have paid cash for the things I want and need. I oft-times remember Polonius’ advise to Laertes to “Neither a borrower nor a lender be” and remember the adaptation of Hamlet done on Gilligan’s Island. But, pressures of money and the desire to not end up homeless pushed me to the point where I had no choice, and a dear and wonderful friend lent me the remainder of what I needed. So, my taxes are paid, and on an upside, I was able to get a deduction, one that no one told me about several years ago, and my taxes have effectively been cut in half.
“One always overcompensates for disabilities. I’m thinking of having my entire body surgically removed.”
When it became obvious that my body was not going to cooperate with my brain, and the prospects for gainful employment became less and less, I took the advise of friends and family and applied for disability. It was not a choice made lightly, and one that I had dreaded making. As with all governmental dealing, the process is long and arduous. The normal amount of time to be approved for disability is 18 to 24 months. It has been nearly 18 months, and on March 16th I finally had my hearing with the ALJ (Administrative Law Judge) at the disability office. The judge was a very compassionate woman, seeming to understand the issues that I am dealing with and the problems that I am trying to over come.
ADVOCATE: ONE THAT SUPPORTS OR PROMOTES THE INTERESTS OF ANOTHER
Webster’s On-Line Dictionary
It was during the hearing that I discovered some information that my doctors had not disclosed to me. Along with the tremors, weakness of muscles and such, I have severe right-sided neural foraminal stenosis. I jotted down this new information, and when I got home I dove head long into researching what exactly this condition was. My discovery was both enlightening, and infuriating. I have nearly all the symptoms that Mayo and Northwestern Memorial Hospital have listed on their web sites. This drove me to my local public hospital, and a retrieval of my medical records.
The radiology reports, along with the medical records proved to be more than enlightening. They actually proved to be frightening. The radiologist noted on their report in June, 2011 severe spinal stenosis at C6-C7. They also reported moderate stenosis at L4-L5 and a left renal lila “likely representing a parapelvic cyst.” Research into what exactly a parapelvic cyst is taught me that they can result in kidney stones, high blood pressure, and several other problems. Since the majority of my problems began shortly after I had a botched kidney stone surgery, I started to put two and two together. Prior to getting sick my blood pressure always ran in the area of 124/72. Not bad for a smoker who didn’t maintain the healthiest of diets and lifestyles. Now, my B/P runs 164/110 to as high as 215/198 (that is nearly stroke level). I have massive kidney stone attacks, 3-4 per month, and constant back pain in the left kidney area.
The information gleaned from the radiology reports led me to dig deeper into the actual medical reports dictated by my physicians. The neurologist that I had been seeing, Sadia Saba, MD, had noted the stenosis and the fact that there was some evidence of an issue with the left thalamus. She also noted in her report on 9/26/2011 that I had an EMG (electromyograph) that “did not show any evidence of a neuropathy, radiculopathy or even motor neuron disease. This was specifically done by Dr. Robert Pascuzzi, who is the leading motor neuron disease expert.” Initially my diagnosis of idiopathic peripheral polyneuropathy was done at Josephson-Wallack-Munshower Neurology (JWM). Despite the homage to Dr. Pascuzzi in her dictated report, something that I personally feel was inappropriate, Dr. Saba was unable to offer any ideas or suggestions that did not fit into some particular mold or model.
When I started to go deeper into the thalamus issue, I discovered something called “Essential Tremor.” The US National Library of Medicine explains these tremors:
The tremor is more likely to be noticed in the hands, but may affect the arms, head, eyelids, or other muscles. The tremor rarely affects the legs or feet. People with essential tremor may have trouble holding or using small objects such as silverware or a pen.
The shaking most often involves small, rapid movements — more than 5 times a second.
Specific symptoms may include:
- Head nodding
- Shaking or quivering sound to the voice if the tremor affects the voice box
- Problems with writing, drawing, drinking from a cup, or using tools if the tremor affects the hands
The tremors may:
- Occur when you move (action-related tremor), and may be less noticeable with rest
- Come and go, but often get worse as you age
- Get worse with stress, caffeine, and certain medications
- Not affect both sides of the body the same way
While I know I am not a doctor, the extent of my medical training is that of a first responder, I am however a thinker. It does not take a brain surgeon to do research into medical conditions, all it takes is tenacity and a deep desire to figure out what is wrong, leaving no option off the table. That is the joy of being a layman, I have no preconceived notions as to what is normal or not. My research took me to where it took me, and that is a place where three issues come together to form a reasonable conclusion. I have nearly all the symptoms attributed to the stenosis diagnosis. I have nearly all the symptoms related to essential tremors. I have many of the symptoms related to parapelvic cysts. Yet, not once was I informed about any of these conditions, or possibilities, but was continually told by Dr. Saba, “I don’t know” and “You can get a second opinion.”
It took time, effort, and some complaining to the patient relations office at the hospital, but I did get to see a different neurologist. This appointment was the third of April, and I met with a resident, Dr. Ashley Ghiaseddin. In order to get the staff to fully understand my problems, I stopped taking all of my medications 24 hours before the appointment. By the time I arrived at the neurology office I was a wreck. I could have been making margaritas for Jimmy Buffett or martinis for James Bond, I was shaking so badly. Dr. Ghiaseddin and I talked for a while, and then he excused himself to discuss my situation with another doctor. The second doctor, Dr. Roos, came in to see me. We discussed Van Gogh briefly, and then moved onto my issues. I explained what I had discovered through my research, and that I had a concern that my condition(s) were not being addressed appropriately. It was decided that I would be set up for a surgical consult to see if there was a way to relieve some of the pressure that the stenosis was causing on the nerves. Also discussed were changes in medication to better control the tremors, and a follow-up MRI using a different type of contrast to give a better view of the thalamus.
As I sit here typing, having to take breaks every few minutes to calm the shaking in my hands and the bobble head that I have become, I feel a tad relieved in knowing that we may actually be moving forward with figuring out what is wrong, and perhaps getting some relief. Relief that I think could have been brought about nearly a year ago, if Dr. Saba had been more adroit in seeing the “big picture” of my problems. While I do not think that Dr. Saba’s lack of movement with my case is malpractice, I do firmly believe that it was poor practice. Add to that the inappropriate pandering to Dr. Pascuzzi in my medical records, and it leaves me wondering if she is comfortable in her own skin.
The sum of this is simple. In today’s medical world, the only tried and true advocate you have for medical treatment is YOU! If you are not getting the answers that you need, then you need to become a pain in the ass to the medical establishment. It is your right, so far, to push, pull, and demand that you be treated with the proper respect, dignity, and diligence that any patient should receive. It should not matter if you are a pay as you go patient, a Blue Cross/Blue Shield patient, or on Medicaid or Medicare. The onus is on the doctor or hospital to do their best to provide proper diagnosis and information. A hospital or doctor would not think of doing a procedure without the “informed consent” of the patient, however my experience has made me believe that some doctors can decide what their patients should be “informed” about, and that is not their decision.