Treatment for rare spine tumor

I am a single mother of two. Due to recently becoming unemployed, I lost the ability to afford medical insurance. I had been paying for it on my own for the last 3 years, since my job no longer offered employee group coverage. I felt that being symptom free for the last 18 years, that a few months without insurance wouldn't make much of a difference. I would seek a job which would provide me with health benefits. Regretfully, as fate would have it, I was stopped dead in my tracks.

Charity Care can be granted in the state you reside. Unfortunately, there is no physician in NJ who can help me. Therefore, getting financial assistance in another state may be impossible. I need your help. Any help &/or guidance would be greatly appreciated.

Approximately 6 weeks ago I woke up with a terrible pain in my right hand mostly between my index & middle fingers. I had an MRI which revealed a new mass this time the size of a small lemon also on the brachial plexus. Progressively I am losing the feeling & strength in my arm each day. I have terrible pain, numbness, tingling & burning in the muscles throughout my arm & there are a lot of snap, crackle & pop noises with motion. A few days ago I also began to feel bug-like crawling sensations across the top of my hand.

Although this current chapter in my life begins 6 weeks ago, the book began 40 years ago. I was born in Portugal on July 20, 1970 & at age 2 my father noticed a small lump on the left side of my neck. My mother took me to the hospital. The doctors there were perplexed by the condition but nonetheless decided to operate as well as radiation, as they believed it was cancer. At age 5 I began to complain of an itch on the left side of my neck & again the doctors operated on me. This time partially removing the upper lobe of my left lung & damaging the brachial plexus. I still do not understand to this day why I do not sweat on my left side. At age 7 I moved to the USA & my parents were advised to have a chest X-ray done annually & we did. Unfortunately both tumor & scar tissue show up as shadow & the residual tumor went undetected. I never really had any symptoms. In late 1994 I had a minor car accident & was treating with a neurologist who sent me for an MRI because I was complaining of some numbness in the fingertips of my left hand. The MRI revealed a mass the size of a coconut on the left cervical/thoracic spine. In March of 1995, I had surgery at Memorial Sloan Kettering Cancer Center in NY. It took Dr Jatin Shah (chief head & neck), Dr Manjit Bains (thoracic) & Dr Mark Bilsky (neurosurgeon) 11 hours to perform the surgery by means of sawing my sternum in half in order to remove the ganglioneuroma. My anatomy had now grown "around" the tumor & my spine was really bent & twisted. Since the mass is located on the spine & compressing the nerve roots, they were not able to remove it completely without paralyzing my arm (s) & so it would continue to grow. After Dr Shah discharged me, I continued to see Dr Bilsky at MSKCC until 2003 & after that I saw Dr Michael Schulder at UMDNJ for a couple of years. He now practices at North Shore University Hospital. I spoke to him a few days ago & was very surprised that although I haven't seen him in almost 10 years, he remembered me quite well. Or should I say, he remembered me by my rare medical condition.

That was then, this is now. In the past week I have been to Robert Wood Johnson in New Brunswick, NJ & UMDNJ in Newark, NJ where I was informed that there are very few specialists in the country who can & will operate on tumors involving the brachial plexus. Robert Heary, MD of UMDNJ referred me to Allen Maniker, MD of Beth Israel Medical Center in NY. I am still waiting for an answer from him.

Sincerely,

Maria D. Giardelli
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Maria D. Giardelli 
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