The following is lengthy and contains some information that appeared in prior posts. I don't expect many to read this post in full or be in agreement with it. However, I felt compelled to labor through this writing, if not only for cathartic reasons, then with the hope that some of the mistakes I made may benefit someone despite my naivete.

Most important is to seek a second opinion, especially where surgery may be involved.

Bear in mind that “Too many cooks spoil the broth.” Many a chef is the God in his own kitchen and deludes himself with recipes that he believes are manna from heaven.

If I had the money and ability to travel to John Hopkins Hospital or The Cleveland Clinic, how much I would have saved in money, time, pain and disappointment.

I started my post-stroke recovery not with self pity, but with a concentration on self improvement, which served me well the first year, but degenerated with each shrug pointed my way.

While hospitalized and being diagnosed with a brain stem stroke, I was visited by a neurologist who headed a small group of neurologists associated with the hospital. He was a burly man in his late fifties with an optimistic disposition. He explained that while my right vertibral artery was occluded, nature compensated with the Circle of Willis which allows three remaining arteries to feed blood to the brain, therefore I should have nothing to worry about,

After five days of being unable to get out of bed and requiring a bolster of pillows to sit without falling over on my side, he appeared and stated that I had been scheduled for physical therapy, but since it was a three day holiday, he saw no need to remain in hospital since I can exercise at home. .I wondered how I will manage, but thought I must not be very ill and to expect quick recovery since I am being discharged so soon. Fortunately, my son phoned the doctor and told him I am in no condition to be released and would be a burden to my wife who is ill. The doctor appeared at my bedside and apologized stating that my son was right and I will be transferred to rehab elsewhere.

I was in rehab three months and pleased with the care I was given. I had two daily 1 hour sessions of PT which I furthered with evening racing through the corridor on my wheelchair, propelling myself with my hands, then my feet as others looked on, perhaps thinking this 75 year old geezer has lost it, but I was determined to progress from wheelchair to walker and release. I had confidence and liking for the director neurologist and saw him privately upon my release. After three sessions, he told me there is nothing he can do to help me.

I attended a local PT facility twice a week,staggering through a narrow isle between two rows of weight and cardio equipment with the same zeal I displayed in rehab, quickly increasing the amount of weights I could handle, until the facility owner approached me, stating that I may look younger than my years, but I have to respect my body and proceed at a slower pace. He also seemed concerned with the degree of my balance problems and the possibility that I may fall while moving on from one machine to another and hurting myself severely. I think he was relieved when after two months I left and freed him from a potential insurance claim.

I made an appointment with a staff neurologist with my state university hospital who informed me that the MRI report shows the brain stem occlusion resulted from a congenital defect. He had on two occasions prescribed medications that had dizziness side effects after I warned him that because of extreme vertigo, I cannot tolerate such medications. I realized he could not offer anything further, and sought the opinion of a senior staff neurologist who stated he did not believe the stroke to be congenital in nature and on the second visit stated that he was unable to help me.

Disappointed in the opinions of the two staff neurologists at the university hospital, I started vestibular training at a large neurological center, but after a few sessions I was tested for nystagmus which proved positive and was told to temporarily discontinue therapy and see a neuro-opthamologist. Before doing so, I met with the director neurologist who candidly stated that nothing can be done to improve my condition and it will worsen with time. I did undergo optical training for double vision without beneficial results and was referred to a supposed leading neurologist and partner in the neurological center. I underwent testing in every department of the facility and in the summation was told by the neurologist that the only way I can improve my condition is to undergo a procedure of gentamycin injections in my right ear that will “kill” the vertibral nerve which is distorting signals from my brain, causing vertigo balance problems. He stated the only possible risk might be partial or total hearing loss in the ear and losing right side balance which will be compensated by the brain and balance training. I thought at last, there is hope and agreed to see a neuro-otologist who will perform the procedure.

The result from this procedure was an immediate further loss of balance and increase of vertigo after the first injection. I had just relearned to drive and get by with just a single point cane and had to revert to using a walker and surrendering my driver's license. I belatedly sought a second opinion from a neuro- otologist who angrily stated the procedure should never have been done, as a central (brain) injury cannot be corrected by treating a peripheral area. He added that I should not proceed with further injections in order to salvage the little balance that remains on my right side.

Disgusted, but stubbornly persisting in my search for help, I googled neurologists within my county, and made an appointment with a neurologist in a nearby hospital who was a director in the epilepsy department but advertised stroke in his list of specialties. I was impressed with his education and training in leading universities and hospitals and his output of medical papers. I explained the reason for an appointment which was only available after 4 PM when he was through with his epilepsy patients.

After taking my medical history,which he entered into his laptop, he stated that he was unable to help me as his specialty is epilepsy and he is not very seasoned in stroke conditions, but he can refer me to a colleague, very experienced with stroke patients. I was later billed for an after hour appointment plus $60. for a ten minute phone call to the recommended neurologist. I refused to pay these charges and told his billing department to shove it!

Upon my first visit to the referred neurologist,I was told to get an updated MRI and MRA which I did. When the doctor received the reports he called my home and spoke to my wife in my absence. He told her that I was to see a neuro-brain surgeon immediately, as the report shows a blocked artery. She asked if I could call him back, as I will return shortly. He said he cannot be reached as the office will be closed for 3 days. When my wife gave me the message I got very angry as he had no right to drop such a hot potato in her lap, nor did I authorize his office to speak to other persons regarding medical information.

At this point, I lacked any confidence in neurologists. The following morning I called the radiologist who submitted the report. I wasn't too anxious as my guess was that the neurologist failed to review my records which contained reports and discs of a brain stem blockage. The radiologist was very cooperative and assured me there was no other blockage other than the brain stem occlusion.. When I next met with the doctor, I made no mention of the incident as it would only lead to my searching for a replacement, which I was tired of doing. I did mention that the blockage referred to was in my history. This did not deter him from insisting that I see a neuro-surgeon which I humored him by doing.

Upon reviewing the MRA disc, the surgeon stated there was good blood flow and couldn't understand why I was referred to him. I felt foolish for going along with the neurologist's request as well as feeling embarrassed for him, which I am sure didn't phase him at all. However in what I had determined will be my last visit with him, the neurologist stated that he is perplexed with my case and can only suggest that I see a neurologist highly esteemed internationally who restricts his practice only to patients recommended by other neurologists . I carefully did a google search on the recommended doctor who was highly credentialed and published and staffed at Columbia Presbyterian University hospital.

When I phoned to make an appointment, the secretary stated that the doctor only sees patients referred by certain neurologists. When I gave the name of my referring neurologist, she said okay and we arranged an appointment which my son will take a day off from his job and drive me 60 miles into NYC.

I was immediately impressed with the doctor aged in his seventies. He was gentle and thorough in his examination, a reminder of a time when doctors did not rush to beat out the clock and make a fast buck, just focused on the patient's need. I came to this appointment with a determination that I will accept the doctor's diagnosis, whatever it may be, and give up further searching. After almost an hour, the doctor stated I am sorry to have to tell you that unfortunately, you are in a small group of patients that can't be helped. I asked him if vestibular training might be of help and he stated not. I then said that there is no sense in further seeing a neurologist. He replied that on the contrary, I should routinely keep in touch with a neurologist and the referring doctor is a good neurologist (??).

Several months passed and my stroke symptoms were intensifying. I was afraid I might have had another stroke. I chose a neurologist from the Web who had several reviews from patients who found him very helpful. On our first meeting, good rapport was established. He seemed very interested in my case, stating that his father has a similar stroke condition. He seemed determined to fully investigate some untried approaches that may unearth the cause of some of my problems.

On my third visit, I explained that I am experiencing a radical change in my symptoms, including some new symptoms. Increased vertigo and ataxia,vision loss, hearing loss and most of all memory loss and problems with vocal articulation. He recommended an MRI of the brain and spine following MRIs that were taken just three months prior. He questioned the appearance of an arachnoid cyst which although not changed from the prior MRI, seemed to be pressing on the cerebellum. This could very well explain the radical change in symptoms, so he referred me to a neuro-surgeon. The surgeon felt the cyst was not instrumental as the cause of increased symptoms , but may very well be caused by extreme atrophy of the cerebellum, in which age may be a factor.

During a follow-up meeting with my neurologist, he reviewed my MRI reports and discs with a phone call to the submitting radiologist, questioning him as to why there was no comment regarding the atrophy of the cerebellum. The radiologist reviewed records of several MRIs throughout the years and stated that the radiologists, including himself, based their reports on the prior radiologists' reports instead of as a new finding. My neurologist also questioned why the Columbia University doctor diagnosed my stroke as cerebellar, since the damage incurred by my stroke did not appear on the cerebellum.

In a follow-up visit, my neurologist stated he will no longer refer his patients to the facility that erred in my MRI reports and stated that as much as he wanted to be helpful, he can't come up with any ideas. He suggested that I start anew by seeing someone else and meeting with the Columbia University neurologist and question him on his “cerebellum” diagnosis. I responded by saying that I have seen a dozen neurologists and have no desire to search "anew" and most certainly not meet again with the University neurologist and question his diagnosis, which I am sure he won't appreciate coming from a layman. He said he understands and is sorry he couldn't help further, but will welcome my visit if I desire support.