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Home Business Disability Grants For Tarlov Cyst Disease Disabled Larry

by Larry Wheeler
(New Castle, Pennsylvania, USA)

I am Larry Wheeler. I am a husband and father. I live in the small town of New Castle Pennsylvania with my 14-year-old son and an 11-year-old daughter.

Previously I had a great career. I was a regional manager for an industrial uniform company overseeing operations in Pennsylvania, Ohio and West Virginia.

Before becoming ill I was heavily involved in the community, coaching youth sports, youth pastor, chamber of commerce and more.

Disability Issues

It was around the middle of 2011 that I started to have some pain and tingly feelings in my legs. It very quickly got worse.

Within a few months I could barely walk. The pain became so constant and severe I couldn't handle it.

Doctors couldn't figure out what was wrong, even with test after test being done. Finally in February of 2012, I was diagnosed with a rare condition called Tarlov Cyst Disease.

I remember it being told to me. The doctor said I had a tumor inside my spinal cord that was causing my issues. My initial reaction was to become worried it was cancerous.

He told me "it's benign, but from what I understand about what is wrong with you, by the time this is over, you're going to wish it was cancer, then we would at least know how to treat it."

After going to multiple neurosurgeons, consulting with specialists, researching and learning everything I could about this little know condition, I found a neurosurgeon who was willing to learn and at least try to help me.

May 10, 2012 I had surgery in Pittsburgh. I was the first and still to this day, the only person out of the Pittsburgh hospitals to have this procedure.

Going into it, I knew the chance at success was small, but living with the pain I live with it was worth the risk.

The surgery was unsuccessful. It did not fix the problem. It actually made things worse because of scar tissue buildup and nerve damage that is irreversible.

This condition has caused me to no longer work. I am on SSDI because of a rare disease I have. The links below explain some about Tarlov Cyst Disease.

https://rarediseases.org/rare-diseases/tarlov-cysts/

http://www.tarlovcystfoundation.org

The condition is rare; even its name is misleading. A cyst normally is something that can be removed. This type of cyst is not really a cyst.

To explain it in simple terms, the nerves in your spine have a coating around them, similar to a sausage liner. Inside that liner is your nerve, filled with cerebral fluid.

This is the way your body protects the nerves from touching each other and causing damage or pain.

In the bottom of the spinal cord, a area called the sacral canal, one of these nerves, the "sausage liner" has herniated and bubbled out, essentially making a bubble about half the size of a banana inside my spinal cord.

This bubble is putting pressure on all the other nerves, giving me pain, bladder, bowel and many other nerve issues from my belly button area down to my toes.

The surgery I had opened up seven vertebras, that nerve with the bubble was exposed and the bubble opened up to relieve pressure, then it was wrapped with fat grafts and packed back into the spinal cord.

Within a few days, the cyst, or bubble was back, either the fat grafts didn't hold or it herniated above or below the repaired area. This process was repeated in 2014 but again unsuccessful.

Now I also have scar tissue complications and nerve damage. I have one of the largest cysts recorded. It measures 7.4 x 4.1 x 3.8 cm, anything over 1.5 cm is considered large.

During all my health issues and the financial problems we have had, my wife fell into a very deep depression.

She has been diagnosed as bipolar and psychotropic. She had a suicide attempt that, thank God was not successful. She has been hospitalized multiple times and is in intense therapy a few times a week

Financial Hardship

I went from making a great living to barely able to pay current bills. We cannot afford groceries.

I do not have a car and depend on people for rides to doctors, sporting events for kids.

I cannot afford the Medicare Part B policy.

We are behind on almost every bill.

We're on a repayment plan with our mortgage, and so far behind on sewage bill that it is going to file a judgment on us.

Income Efforts

I've sold most of the valuable personal belongings we had, buying and selling things over the Internet.

I got SSDI as main source of income.

I asked for help from church, family and friends.

I do have an opportunity to start a business delivering furniture for a small retail chain. I would manage the operation and have a couple workers do the deliveries. It would produce a nice supplement income.

Specific Needs

I need advice on grants available for home repairs, to start a business or buy a automobile.

Business Idea

My idea is a delivery company that would be used as an outsource option for a small retail furniture store chain.

It would provide a nice supplemental income and also a job for my son in the coming years.

Our house and property is commercially zoned so the business could be managed and run from home on a part-time basis. I need to find funding to buy a truck.

Comments for Home Business Disability Grants For Tarlov Cyst Disease Disabled Larry

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Aug 31, 2016
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Truly feel your pain
by: Bre

Larry, I am also from a small town in PA just north of the Burgh. Currently residing in Woodstock, GA. I also was a productive person until 2012- working as a full-time med / surg nurse. I battle the same degenerative disease. I am 3 months out from surgery at the Tarlov Cyst Institute in Dallas. On the positive, I have some benefits through work. The negative is this disease is RARE and not understood. Therefore, I have had to battle tooth and nail. The stress has only exacerbated the problem and interfered with my recovery. I have no magic answers, but wish to offer prayers, support and understanding.

Aug 03, 2015
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Thank you
by: Larry Wheeler

Thank you for adding my story to your site. I hope to find useful information here.

Jul 29, 2015
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Get the Workbook now...
by: Don from Ability Mission

Hi Larry,

Now that your story is published, you are eligible for the Workbook, which shows you how to use our story to get the help you need.

Cheers!
Don Coggan

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