My name is Troy Torstrick and I have an as-yet undiagnosed neurological condition; it is a lesion in the spinal cord in my neck but what caused (or is causing) it has still yet to be diagnosed and I've been seeing doctors to try to get this figured out since late June, including an 11 day stay at the hospital, with the symptoms continuing to progress since I first started to notice symptoms almost two years ago. This is my second GoFundMe campaign for basically the same problem. My apologies for using the same picture as the first campaign, I don't have many pictures of myself and this was the only one I could get to on this device.

Desperation causes us to do things that we would not think to do otherwise, but desperation is now my status quo. I am still ashamed to have had to beg for money the first time, and I am even more ashamed to beg again now but I have little other choice.

Even if I am not successful this time, I will still be forever indebted to all those that have so generously given already. For the back story on the first campaign, you can read about it here (don’t forget to read the updates on the update tab):

https://www.gofundme.com/2mqpu9y7

With the money we raised for the first campaign, we have been able to pay rent and several utilities in advance, buy groceries, pay some of the many, many medical bills and get things that Hayden needs for school (we have tried very hard to insulate Hayden from the extent of our desperate situation) but now the money has run out and we still have precious little coming in. I still have to depend on Michelle to ferry me to my doctor appointments and therapy sessions and she is still missing a lot of work as a result. I’m looking into long term disability benefits but that, too, will take a long time to get approved assuming that it will be approved, and that’s only half of my normal income, and I’ve been without any income for months.

I have applied to TARC3 for alternate transportation but like all of these kinds of things, it takes a long time to get approved and my application is still in process. I have a few friends and family members that have also been able to help on some occasions so the situation is improving but unfortunately, not quickly enough. There are some bills that we couldn’t pay in advance and the medical bills are still rolling in like I’m Santa Claus and they’re letters to the North Pole. We will soon have difficulty being able to pay for groceries, medication, gas and other necessities.

I had hoped to be able to have gotten some kind of treatment and be back to work by now  in some capacity but I still don’t even have a diagnosis yet, not to mention any kind of treatment, and I am still not physically able to do the work I need to do at my job in my current condition. And I am dealing with frustration and depression as it seems like the doctors have no sense of urgency to get to a diagnosis. I get maybe 10 minutes of face time at my appointments and then they schedule follow-ups for months out.

When I was in the hospital, there was a sense of urgency. I saw several doctors and had numerous tests every day. I was like a pincushion getting stuck with needles and IVs constantly, and the large gauge IVs required for the dyes they had to inject for various tests and scans. But now that I’m no longer in the hospital, I feel like I’ve been dropped like a hot potato. The neurosurgeon was supposed to schedule another lumbar puncture when I saw him on November 2nd but I still haven’t heard from his office about getting it scheduled since then and despite several calls to their office to try and find out why, I STILL haven’t gotten a return call.

I have an appointment tomorrow for a second opinion with another neurologist, and I feel a little sorry for him because I have two full pages of bulleted discussion points to get to before we even start any examination. I’m going to corner him and we’re going to be there for a while, he’s not going anywhere until I get all my concerns addressed and all my questions answered. I'll sit on the floor in front of the door if I have to and it really isn't easy for me to get up from the floor even with help so good luck trying to get around me. I would hate to be the appointment of his that is scheduled after mine because they’re going to be waiting for a while. I’ve become much more terse and demanding with the doctors lately out of a sense of desperation and the feeling that they’re all checking the necessary boxes on their basic responsibilities but that none of them are really giving my case any real thought beyond that. They just don’t seem to get that time is working against me on several different levels.

The last neurologist I saw mentioned that I may need to go to a specialized clinic, like the Cleveland Clinic or the Mayo Clinic but I’m still no closer to getting there two months later since seeing that doctor.

I have started to look into going to the Mayo Clinic on my own without waiting for a doctor to refer me since my insurance doesn’t require referrals. But this will require a lot more money just to get there and back than I have, which right now is basically nothing, not to mention what I will need to pay that the insurance won’t.

So I put together this GoFundMe campaign to try to raise enough money to get me to the Mayo Clinic, where they work intensively until they get to the bottom of the problem and not defer me for weeks or months at a time. And also to keep the wolf away from the door for my family while I am gone and for that matter, before I leave.

For the latest on my condition, and I will do my best to be brief though that clearly is not one of my strong suits, I am still noticing new symptoms, new areas of numbness and my nerve pain has increased and spread despite being on medication for it. My perception is that my condition is still slowly getting worse.

The neurosurgeon reviewed my most recent MRI and the good news is that the lesion doesn’t seem to have gotten bigger since the last MRI, but the bad news is that it also hasn’t gotten smaller, which is what he had expected to see if it was a demyelinating condition like MS or Devic’s Syndrome after the treatments I got in the hospital. He said that it didn’t look like a tumor unless it was something slow-growing, which still has me terrified because this started almost two years ago and has been growing slowly ever since so in my mind, a tumor is still the strongest possibility. The slow onset has all of the doctors confused, lesions from MS, Devic’s, strokes, etc., tend to have a much more rapid onset, weeks or days, not years.

The neurosurgeon is chomping at the bit to do a biopsy but, for obvious reasons, I’m not real excited about the prospect of someone cutting into the spinal cord in my neck, especially when I haven’t gotten a second opinion yet.

My plan going forward is to 1) try to get into the Mayo, and 2) until that happens, I will be demanding that all of my doctors see me a lot more frequently than six weeks to three months, at least until I have a diagnosis. I will be scheduling follow-ups for one or two weeks tops and I won’t be taking no for an answer. Oh, and 3) calling my neurosurgeon’s office daily until I get a response and if I don’t hear something soon, I’ll be calling the neurosurgeon’s cell phone (I try not to abuse it but I have his cell number from when he called me from it about some test results).

I am in both physical and occupational therapy twice a week but with only negligible improvement, though the therapists are great, I feel like they’re the only ones that are actively trying to help me. My balance seems to be getting worse, I can’t even walk around the house now without a cane and I have fallen several times lately, hitting my head pretty hard when I fell today. I’m quickly getting to the end of my rope.

I didn’t want to ask the first time and I REALLY don’t want to ask again, but if you have a little you can spare, or if you have a friend that does, or if you can post a link to this on your Facebook page, you can help me get this figured out one way or another so we can figure out what kind of treatment I will need and get it the hell started. And you will be helping my family worry a lot less.

Thanks for reading and thank you even if you’re unable to give.

Troy Torstrick