Transcription
[Music] I started having back issues back in um about 1987, and it was just one of those things that I learned to deal with. I learned that I had disc issues for for the longest time, uh, but there was never really any nerve impingement that they could see. Cuz I went through the MRIs and the MRIs and different tests, um, but it was one of those things. I pretty much learned, hey, it hurt to do this, so I just quit doing that.
And, um, as it got a little worse, I, uh, went to a pain management doctor and I would get the cortisone steroid shots in my lumbar, my sacrum area. I was getting them in my neck, um, and then some of those would last two years at a time. And they had always told me that that window would get shorter and shorter as your body just got used to those. And it got to where the last few shots, it only lasted a couple of months, so then I just stopped getting them.
And then the last MRI that I that the pain management doctor sent me to, he, it was on the write-up that there were Tarlov cysts. That was when I first heard about them. Once I started seeing that the Tarlov cysts were showing up on my MRI, I brought that to the attention of the physician that I was currently going to, other than the pain management doctor. And the first thing he had to do was Google Tarlov cyst. He had no idea what they were. And he kept telling me that he needed to follow their protocol for their standard operating procedures for treatment.
So the first thing they do was send me to physical therapy. And I would go through that and go through that. And I kept telling them, I say, "Listen, every time you get me to bend over, I spend the next two days at home. I can't walk. I'm in excruciating pain. What about these? What about these things here?" You know, "Well, we don't see any evidence of nerve impingement on your discs that should be causing what your symptoms are that you're describing." And I kept saying, "But what about these?" And I wasn't ever getting any feedback from the Tarlov cysts. And it was very, very frustrating because I knew there was something more out there.
So I did my own research on Tarlov cysts. And again, going back to my primary care doctor, orthopedic, and you know, I wasn't getting any headway with them. They just kept, they said, "Well, you know, Mr. Alfred, it's just like when you take a vehicle to a mechanic. The first thing they're going to do is see if it's out of gas. So that's the way we're going to treat you. The first thing we're going to do is send you through physical therapy and treat you with drugs." And I said, "But you're not, we're not making any headway."
So he went ahead and scheduled another physical therapy appointment. And I said, "Fine." And when I left there, I don't recommend this, but as you're driving, I was Googling Tarlov cyst. And that's when I found the Tarlov Cyst Foundation. And that's when I found Dr. Fagenbaum. And I had an appointment set up by the time I got home. And I called back to my regular doctor and I canceled my physical therapy appointment.
You know, being someone who has had, you know, dealing with a back issue since I was in the service back in 1987, I knew the pain that I was feeling for that long period of time. But I knew that there was something different that I was feeling. I mean, it's not that, hey, they told me that I've got Tarlov cysts now, so I'm automatically feeling different. I was already, in my mind, I knew, hey, something's different back there. That when I rock back on my tailbone, it would feel like I was sitting on little pebbles. I was losing strength in my legs. It got to where I could not, I could sit at a 90-degree angle right here and try to raise my feet up off the ground, and I couldn't. I couldn't even raise them off the floor. Standing up, trying to bend over to just put on my socks or my pants, I could not raise my knee up past my waist. So I knew something was back there that was holding in that back. And it was to a point to where my wife had to help me get dressed on occasions because I just could not do it.
And like I said, I love, you know, outdoorsy and cutting the grass. I would be out mowing the yard and my left leg would give out, and I would just fall right down on the ground. And there would be times where I'd be just mowing the small front yard and I'd fall six or eight times. So it, I knew I was taking a downhill turn pretty quick. And the duration of that lasted, it started spiraling pretty quick before my initial appointment with Dr. Fagenbaum. I would say about six months right there. I mean, I knew I was taking a turn for the worst. So my symptoms weren't the same as what I had been dealing with in the past. I knew there was something else going on.
In my day, I'd been known to hop on my road cycle, my 21-speed bike, and I would ride. Do the 100-mile century rides, I would do the 100K rides. I would ride almost every day. And I had a motorcycle that, about 5 or 6 o'clock every day, I would hop on that just to cruise around town, just to, you know, let my hair down. But it got to the point to where I wasn't, I could not enjoy those anymore. I was spending less and less time on the bike because it was of the pain that I was getting every time I would hit a bump. And especially on that motorcycle, every time I would hit a bump, it would get to the point where it would be almost a tear in my eye. And then I just had to park it because I couldn't ride it anymore. And same with the road bike, I just could not enjoy it anymore.
And so I had made arrangements to sell the motorcycle back to the Honda dealership. And so I rode, when I was riding it up there, my wife was following me. And I got about a quarter of the way there and I was like, "Man, I love riding this bike. I think I might change my mind." You know, once I get there. Well, just another mile down the road, hitting a bumpy area in the road, it had a quick reminder because I was hitting those bumps and just the feeling back there in my tailbone. I mean, by the time I got to the dealership, I was in tears. And I said, "That's why I'm selling this bike because I just can't enjoy it anymore."
We go to Canton Trade Days quite a bit. My folks are a little older and they have a camper and they like to take it to Canton. And we have our motor home, we like to go to Canton to just stay the weekend because they can't do the entire Canton Trade Days in one sitting. You got to do a little bit here, a little bit there. So I would still want to go because, you know, again, my wife likes doing that as well. And there's some junk there I like digging through. But I just couldn't do it anymore. So I found me a walker on Craigslist. I picked that up and brought it home.
I have a job. I work for a large computer company and I support one of the airlines here. And I'm able to work remotely. But I several times a week I go into the corporate offices for client meetings. And it got to the point to where I was taking my cane. I did not have the ability to carry my backpack with my laptop in there. It was too heavy. So I started using a roller bag. Then I was having issues where I would stumble on the stairs or I would trip and fall even with my cane. So my boss says, "Hey, let's leave you at home. Don't worry about coming in here for some of your client meetings if you can do them over the phone or conference calls rather than face to face."
And that's where anybody who didn't have the kind of job that I have where I can work from home, they would have been between a rock and a hard place. They wouldn't have been able to perform their work. They wouldn't have been able to work. And so it got, I could not sit in my desk chair at my home office for just but a couple of minutes. So I put a TV tray next to my bed and put my laptop on it. And I would use, rather than a mouse pad, I would just use my elliptical mouse on my leg as I was laying on my side. And then, you know, after about 20 minutes, I would have to roll over to my other side. So I would just move the laptop to the other side of the bed. But I worked from bed for probably a month before surgery. And like I said, if people who didn't have the ability to perform their work from home, I don't know what they would have done. They would have been out of work.
Through my research on the web, I found the Tarlov Cyst Institute, which led me to Dr. Frank. And I watched a few of his videos. And then I did my research on the different kinds of treatment. Some doctors just aspirated the cyst and left it alone, and they would grow back. And I followed up on different types of doctors, different types of treatments, so I knew the different things that he did differently from everyone else.
Prior to coming here, the first appointment with Dr. Fagenbaum, I brought the final MRI that I had from my previous doctor. But it was from the lumbar area, so it just got the top of the sacrum. And he was even in that MRI, he was able to show me one of the Tarlov cysts down there. So he sent me back to get another MRI of the sacral coccygeal area. And whenever I brought that back, he was able, for a follow-up appointment, he was able to see, "Yeah, hey, there's four of these rascals down there." And then he explained to me what he does. And I felt very comfortable here with the staff and everybody here. And he had let me know, "Hey, this is what we need to do to get those things out of there." And we set up a program to move forward.
The day of the surgery, I wasn't timid or scared at all about it. I was comfortable with the man that I was going in there with, with the people who had supported me that I was going in there with. The folks over there at the Pine Creek Medical Center were fantastic. They made me feel like I was the only one there. And I think my wife was more nervous than anyone. But going to the day of the surgery, showed up that morning and then went in my pre-op. And I was comfortable. I was ready to get it done.
In the pre-op room, they put on those white leggings, I guess to keep the blood flow up to where it needs to be. And me being the joker, they had the blankets and everything covered up. And my wife was around the corner and she said that she could hear me just singing, "I'm too sexy for these stockings" or something like that. And she came around the corner and took a picture of me with those stockings on. And I was just so comfortable that I wasn't timid, I wasn't afraid. I was more afraid of the outcome than the procedure. And then the outcome was even better than I imagined.
So when I came to, I knew that they had told me previously that I had to stay completely flat for a certain amount of time. And all I was able to eat was popsicles. And that was fine because I love popsicles. And then they would raise me up 10 degrees every half hour or every 45 minutes or every hour, 10 degrees, to make sure that I wasn't having any concussion headaches. Which was a deal for me because in the past, when I had the migraines, I would have clot issues in the past and I would have those concussion headaches. So the way they did that, I didn't have any issues. As they would raise me up, I was literally going, "Okay, am I going to have one of these headaches?" Because that's some of the worst pain I've ever been in my life. And the way they progressively did that, I was fine.
So whenever I got to 90 degrees, I was sitting up. They were able to feed me and I was doing great. And that evening, after staying flat for 24 hours, that evening of the second day, they brought a physical therapist in to get me up. And he brought in a walker. They put a tether around my torso in case if I stumbled or whatever, that he could grab me. They put the walker by the edge of the bed. He says, "Do you need help standing up?" And I said, "Well, let me try it first." And I just popped right up. And the first thing I wanted to try is to stand up on my tiptoes. My wife even asked, she says, "Hey, try that." Because she knew that that was something that I couldn't do before. And as I was standing there on that walker, I went up on both toes, went up on my right toe and on my left toe. And I was almost in tears just knowing that I could do that.
So the physical therapist and I made our way around the room to the hallway. And we hooked him down the hallway, well, slowly, but we made our way down the hallway, turned around and came back. And I didn't have any issues with that. So they took my catheter out when I got back to the room. And I was doing fine. They got me up and I was able to put on some shorts and I sat into a reclining chair that they had. Was able to eat sitting there. And so that day I was feeling good. And they had removed me from my IV, which had my pain meds in there. And I don't recall taking any further medication after that.
The next morning when I woke up, Dr. Fagenbaum was standing at the foot of my bed. And he asked me, he said, "Well, Mr. Alfred, how are you doing?" I says, "I'm doing great." I says, "I would be better if, in the morning, being Saturday morning, this was Friday, I would be better if I could be at home watching football on my own TV." And he said, "Well, tell you what. If you can get up and walk down the hallway by yourself, I'll discharge you this evening and you'll be home for in the morning."
And I started getting up out of bed. My wife says, "Scott, hang on a second. You might want to put on some pants." And I says, "Okay." So I put on some shorts and a t-shirt. And the physical therapist was near me, but I went down the hallway by myself, walked into the atrium by myself, turned around and came back. And he just looked at me like, "Wow." And so I sat back down and they started my discharge for that evening. So I went home that night. So I was, rather than staying four nights, which is what they generally like, two nights, and I was home.
One of the things that I liked about the procedure and the follow-ups with Dr. Frank and his staff is he keeps track of his patients out two years. I came in, like a week after, a month after, six months after, a year after, then two years after. And they can put you on strict guidelines, don't lift this amount of weight, don't do this, don't do that. Well, I kind of got cocky and overdid it on some occasions and was dealing with some pain, but that was my own doing. And I would come and talk to Dr. Fagenbaum and he would let me know, "Hey, that's why we give you these rules."
But having the follow-up MRIs, everything was showing that the stents and things were still holding perfect. No new cysts were growing. The ones that were there were still gone. They could see evidence that they were there, they still show up, but no pain from them at all.
I'm back to bike riding. I'm having other issues with my back that's not Tarlov cyst related, so I can't ride my upright bike anymore. So I ride a, I went out and test rode a recumbent bike. And the way it cradles my spine, I love that. And I ride 40, 60, 100-mile bike rides now doing that. And I just could not have imagined doing that this time two years ago. I do my own yard work now. I can trim the hedges now. We travel in the motor home. I got to the point where, before, an hour or two sitting in that seat, I couldn't drive that distance. And now we drive to my in-laws' house in Mobile, Alabama, about an 11-hour trip, and I can do that without even batting an eye. So I'm back to doing what I was doing before back when I was in the Marine Corps.
My last name being Alford, I had every, my nickname was Alf. Corporal Al. Well, in 1987, I got a package. In a squad bay with like 40 other Marines, I get a package from home. Well, everybody gathers around when you get a package from home because everybody assumes it's candy or cookies or cakes or whatever. So they're gathered around. I'm opening this box and it's an Alf doll from my mom. That's what she sent me for my 19th birthday was an Alf doll because of that. Since that was my nickname, and that went when I deployed when I was in the service, that Alf doll, he was a little companion at the time. And this little doll became kind of my good luck charm. We take him when we travel. We've gone overseas and this little thing's gone with us everywhere. Well, he went through my journey of my surgery with me. So when I woke up in recovery, my wife had him sitting on the bed next to me. As I made my journey through going from sitting up to moving to the chair, he was sitting there with me, just kind of like my good luck charm. So he went through the journey with me.
Everybody here made me feel comfortable. My questions were always answered. My phone calls were always answered. When I needed to fax items here, email items here, they always let me know, "Hey, we received these," so I didn't have to worry if it got there. The process was just seamless. And it was easier for me being a local patient rather than somebody having to come in from out of town. Because I was sitting in the waiting room, talking with other people that were coming in from out of town from Wisconsin or wherever. And they were like, "Oh yeah, they put us up in a hotel." And I met some good people sitting in here. And I could tell they were in pain, but we had something in common and we were talking about it. And even coming here for my follow-ups, talking to people who were in my position a year ago, I was telling them, "Hey, you couldn't have picked a better place to be." Just because of the folks here and the doctor and the treatment. And so I'm a cheerleader for it.
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