Finally Getting Better!

So the past couple months I have been feeling better then I can remember feeling in years. I cannot tell you it has been one thing that has made a difference, as most of you know I have tried many different things over the past couple of years to be able to avoid the fusion surgery. I do think it has been a combination of all of the things I have tried.

I think one of the most important things I have done is I have let myself heal. Days after my tethered cord surgery I had an increase in my POTS symptoms and was told by Dr. Bolognese I may need to come back in 6 weeks to have cranio-cervical fusion surgery. After hearing that all I wanted was to get out of that hospital, I had just had spinal cord surgery. I was not ready to have brain surgery, (the most frightening brain surgery I had ever heard of). So I did everything I was told to do to get out of that hospital.

Once I got home after TC surgery I did continue to have an increase in my POTS symptoms. I ended up back at The Chiari Institute 3 months after TC surgery and was told my next option was the fusion surgery, but again I was not ready. Not ready to lose mobility of my neck. Not ready to have part of my skull removed, not ready to have screws and rods placed that close to my brain. I felt like their had to be other options for me.

Shortly after that Hunter was diagnosed with these same medical conditions and I thought maybe it is time, time, to have the surgery so I can feel better and take care of my son. I went back to TCI for more tests and prepared myself for that frightening surgery. Then I was told you are a perfect candidate for this surgery but you have osteopenia so for now surgery for you is not possible. I was told take a year, build your bones so they can support the weight of the hardware of the fusion. Trust me, this was devastating for me. To be told by some of the top neurosurgeons in the world that you need this surgery, brain surgery, but we cannot do this for you right now because of complications was a hard blow! Now, though I realize it was a blessing. I know if I had that surgery I would be worse off, still recovering but never recovered.

Now 23 months since I had TC surgery, I can say I feel better. Better then before my surgery, but also better then I felt years before my surgery. One of the problems of having a TC is brainstem elongation. That does make those POTS symptoms worse. I knew those issues from the brainstem elongation were not going to disappear overnight. It had taken me 31 years for my symptoms to get as bad as they were, I needed to give it more time. More time and also hard work on my part. I wanted to get myself back, back so I could be around to take care of my 3 sons. My sons that need me to be strong. So I worked at it and I am as I said doing better, much better! The next option seems to me now is not another surgery, just more work on my part and it is hard but I do not think it is as hard a recovering from such a devastating surgery. Below I will add some things that have helped me.

1. Having time to recover from surgery. It took me 18 months after my TC surgery to start to notice that I was feeling better than before my surgery.

2. Acupuncture and massage. This helped tremendously with the pain in my neck and shoulders.

3. Getting off most of the medication I was prescribed over the past couple years. When I went into surgery I was taking 8 different medications on a daily basis. That is not including the ones I just took as needed. I am now only taking 2 medications daily. One is atenolol for those POTS symptoms that remain. The other is Cymbalta for the pain from the nerve damage I have in my spinal cord. As I said I am better, living a better more fulfilling life, but I am not pain free/symptom free, but I do hope I am on my way.

4. Getting stronger. Shortly after my surgery I had a physical therapist tell me to avoid the fusion I needed to get stronger, he said "strong like an ox". This was only 4 weeks after my surgery and at that time I was not ready. Walking up the stairs still hurt, even being upright made me dizzy, but what he said stayed with me. And for the past couple months I have been working on that. I am again working out with a kettlebell on a regular basis, something I truly enjoyed before I became really sick.

5. This is just a list of some other things that have helped me and seem to work to help with the fatigue, pain, and brain fog. Click on the items below for more information.

Foam Rolling
Theracane
Fish Oil
MBT shoes for walking
Nintendo DS Brain Age Games

One more thing is try to stay active. I know for some it is not possible or can be very painful, but try not to lose mobility. After my surgery I was given a form from my doctor for a handicapped sticker for my car. I never turned that form in. I felt like if I stopped walking those few extra steps it would make me worse. I was ready to feel better, that is why I showed up for surgery. I am just trying, everyday to get better, to do better than the day before. It is one step at a time, one day at a time. It has been a very long road for me, I don't know how long this feeling of getting better will last but I am going to enjoy everyday of it while it lasts!