An Unexpected Opportunity

Hello! Wanted to come on here and talk about my recent stromal vascular fraction (SVF) stem cell treatment that I unexpectedly stumbled upon at an appointment to get my earlobes repaired. Crazy story, and a total intervention by God if you ask me. Maybe I'll eventually share that whole crazy story. I will try to share updates as I can of any progress, or lack of progress that I notice. I will start by saying this treatment isn't for the faint of heart. The treatment consists of liposuction to remove a small amount of fat (50-60cc) and then it goes through a process where the fat is separated from the stem cells. I won't be getting into all of the medical terminology or going too into depth about the process. If you want further information I would suggest doing your own research as it's a fascinating process. Our bodies potentially have the ability to heal themselves. That honestly blows my mind, and is very exciting to think about. The treatment that I did is not currently FDA approved, but is FDA compliant according to the doctors who came up with the process I just went through. I would recommend reading The Stem Cell Revolution by Mark Berman, MD and Elliot Lander, MD. I guess you could say there is some controversy surrounding it. I did a fair amount of my own research around the topic, as well as reached out to someone with Muscular Dystrophy who actually had done a few of the treatments. The idea is that if this treatment is successful, the next one would be a double liposuction, and half of the cells would be sent to a stem cell bank and multiplied for future treatments. That way I would only have to go in for a quick infusion, rather than the entire process each time. 

The reason I said it isn't for the faint of heart is because of the liposuction part, which you are totally awake for, is painful and to be honest a little scary. The first step is that they figure out where they will harvest the fat from. For me it was my "love handle" area. A numbing cream was spread all over the area and I had to let that sit for about 20 min. Not painful at all, just a strange sensation. I was then taken to the treatment room, where I laid flat on my back. Two doctors then started the process of injecting each side multiple times to further numb the area. That in itself was not at all pleasant. I was stuck repeatedly, which I did not enjoy. That then had to set for about 12 minutes. They came back in and that's when the worst part began. Not sure if you have ever seen the tool they use for liposuction, but it is a very long and fairly thick needle like tool. Yikes! I was numb, but as they were doing it they would hit areas that weren't so numb. Holy ouch! The liposuction technique is a rather violent movement if you ask me! I closed my eyes and prayed. I opened them for one tiny second because I wanted to see what the fat looked like that they were taking out. FYI it was a light pink! They did one side, which I would say took about 6-10 min? It felt like an hour, but I know it wasn't. They then did the other side, same process. They were hoping for 60 cc's of fat, they were able to get 55 cc. I had two scars from previous bone removal for ankle fusions where they were able to enter, so I didn't have any new scars. I was honestly so relieved when that was over. They told me that Jamie and I could leave and come back in about an hour for the infusion of my stem cells. Jamie was then able to come back to the room where I was and help me. I was feeling weak, nauseous and exhausted. As soon as we got to the car, I just broke down and started sobbing. It was all just a lot to go through. I was able to keep it together until then. I think part of it was holding in my emotions from the pain I had just endured alone, and just the whole idea of what I was doing. That I was doing all of this for a chance to get help after all these years. Either way, I just felt very emotional. 

After an hour, we went back and I went in to get the stem cells infused. That part was a piece of cake and only took about 15 minutes. After that we headed home. I had to rest for about 24 hours, but could walk around as I wanted etc. The first day wasn't bad pain wise as everything still felt numb. I just felt tired, but that was just because of what I had gone through that day. 

Day two, I started to see the bruising from the procedure, but it still wasn't that painful. I still felt tired and pretty much had another down day. 

By day three, I started to feel some tingling sensations in my legs, further bruising, and some mild soreness. It just felt as if my legs fell asleep and were in the process of waking up. I honestly thought that was what it was a first because it started in the left leg only. However, it spread to both legs and was fairly consistent for most of the day. My legs were also aching and just felt pretty weak, which is of course pretty much the norm for me. 

Day 4, I woke up feeling pretty bad. I felt flu like body aches. I forced myself to take a hot shower which helped the pain some, and then Jamie and I went out and did a few errands. I even went on a short walk to see if that would help the pain subside. My legs were also starting to tingle again. I ended up calling the doctor because he asked me to call with any new symptoms. He said the tingling was a very promising sign, and to definitely see that as a good thing. He told me I could resume my pool therapy as I felt like it. Exercise combined with this treatment is actually a very good combination. It only helps the process along. Another thing I noticed yesterday was that I could walk barefoot without excruciating pain. For years I have not been able to walk barefoot. I can't even shower without shoes on. Fun, haha! I took a step without shoes on after getting out of the shower and thought, hmmmm that didn't hurt as bad as normal. So then I tested it, and sure enough I was able to walk from the bedroom to the kitchen without shoes on. It still hurt, but not nearly as bad, and I was way more stable walking barefoot than I had been. So needless to say, this is all just beginning.

 It will likely be months before I know of the effects from the treatment. At this point I just feel hopeful, and that is just because that's what I'm choosing to feel. To be completely transparent, I didn't clear this with my neurologist because I knew he'd say don't do it just yet, its not ready yet. It needs more time to be researched etc. Sometimes you just have to follow your gut, and mine was telling me to go for it! I'm honestly so weary of waiting around on the neurology world. If I sound bitter towards that whole area it's probably because I am. Keep in mind I am 46 years into this, and have seen countless doctors through the years. I know it's not their fault that they've never been able to offer me anything more than extremely hard plastic uncomfortable AFO's or an occasional jaunt with physical therapy, which I always got dismissed from because I never made much progress because I have Muscular Dystrophy. There wasn't that much progress to be made. Nothing at all against physical therapists. I had some really great ones over the years, and they helped me to recover from several surgeries. It was the last time I got "released" from PT in 2017 that Jamie and I said that's it, we are creating our own therapy space here at home that's easy for me to access. I had learned enough over so many years of therapy that I felt confident I knew what I was doing. Two years later, after saving up and carefully planning out the space, the small therapy pool was built in an addition off the master bedroom. I also have a weight machine, infrared sauna and a therapy table I use so I don't have to get up and down from the floor. That's where I do my own therapy that I will never be released from. 

We will see what the future holds. This treatment is certainly not a cure, and could only provide tiny progress which no one could see, but maybe I will feel. Maybe it will be easier to roll over in bed, or sit up out of bed, or put my shoes on, or walk without assistive aids, or use my scooter less, or be able to get up from a chair on my own without as much effort, or get up by myself if I fall, or not fall as much, or just feel an overall renewed sense of strength. Basically I'm just buying time and trying to do something productive while we wait for a treatment or a cure for neuromuscular disease. I still think that is possible too and will continue to work tirelessly with MDA to keep working towards that goal. Together we fight!! I continue to walk humbly courageous.