The Difference 3 Years can Make!

I came across my 2 year post op update and thought that it was important for me to share just how slow this recovery can be but that there is HOPE even after years of recovery!

As you will read, at 2 years I had finally come to a place of acceptance of my “new normal” as a disabled person. My sacral surgery had been successful, in that it stopped my progression into full paralysis, and it had helped with my other sacral symptoms, but I was still living with the cysts throughout my spine, other spinal conditions, and I was in daily 7-8 out of 10 pain, on massive pain medication.

I write in my other posts that it wasn’t until I started Dr Tennant’s Protocol that I finally found my personal answers to control the diseases. In the last 2 1/2 years I have improved beyond my wildest dreams. I rarely have any of my upper body symptoms and my whole body health gets better and better, as my nerve damage repairs and my inflammation is under control.

I hope this will inspire some of you who are having a tougher recovery than most. I was one of the “worst case” situations and if I can get back to living an active life again, I do believe that it’s possible for most anyone else to do so as well. It takes active participation in finding your right protocols, for you, and it takes a long time for many, but it’s possible, in my opinion!

Unfortunately there are some members that had surgeries early in the careers of some of the now expert surgeons, who have had a lot of permanent damage but for most surgical patients today, the outcomes are far greater.

This is why I believe it’s so important to go with an expert that has had hundreds and even thousands of cases under their belts, instead of a surgeon that is early in their career with this disease. Every surgeon attempting to become a TC expert should undergo a residency under a current expert, to see what happens when unexpected complications arise.

Here’s my past update.

2 year post op update

“Well, it’s time for my 2 year update post surgery on my sacral Tarlov Cysts. This is long so just keep scrolling if you don’t want to read it. I haven’t been sharing much about my health lately because we’ve been coming to terms with our “new normal” ourselves for a while... Accepting that you’re permanently disabled isn’t an easy thing to do. About 4 months ago I was told by one of the best TC educators in the world that, because I have these at almost every level of my spine (11 in my cervical spine alone), there is nothing more that can be done. Every cyst would require a separate surgery and I would likely develop new ones in its place. I’m not sure what will happen, long term. I won’t get paralyzed since I had the sacral ones taken care of! They can operate on all of the sacral cysts together since they’re at the bottom of the cord, kind of like a tail. The higher ones are attached directly to the cord so require separate surgeries. Most people only have sacral cysts. I’m special, again.. 😂😂😂 Some people have one or two problematic cysts higher up and can have them operated on. No such luck here. My upper body symptoms are getting worse. I’ve been to the ER 4x thinking I was having a heart attack, breathing trouble or a stroke. I’ve been completely tested up one side and down the other and thankfully all of my internal organs are in great shape. So, I’m not dying, I just feel like it sometimes. My nerves send signals to my brain that those areas are in trouble. I also get numbness and weakness in my arms, hands and face. That’s when it feels like a stroke. My whole mouth will go numb, including my teeth! I also deal with pain that wraps from my mid back, between my shoulder blades, around my rib cage to my sternum. It makes getting a deep breath very difficult! Sometimes it also feels like someone is holding a block of ice there, and it’s melting down my back. The worst, by far, has only happened 4x and has only lasted for a few hours but the first time it woke me from a dead sleep. It was terrifying. It felt like half of my right hand was submerged in a vat of frying oil! Like a burn victim but no hope for healing. When others would talk about burning, I thought they meant like muscle burning after a run. Nope, this was BURNING! FIRE! This is the kind of nerve pain that cause the suicides with this disease. Again, thankfully it hasn’t happened much! However, these things are my reality now. No more lively tennis matches or hikes in Nevis, etc. I don’t feel sorry for myself because there are people in much worse situations. It’s just an adjustment. In some ways it’s made me more passionate about things that matter, like injustice, etc. It’s just made my thoughts deeper, I guess. Like I wasn’t already deep enough..… lol I guess you have more time to really think through things when you’re stuck in bed so much of the time! So... It’s kind of like being told that you have MS or another incurable neurological condition. In some ways it was freeing because I can stop chasing a cure but obviously it’s devastating news. My objective now is to manage my pain and symptoms and learn how to LIVE my life with this new normal. I’m spending my time making masks for anyone who will use them. I give them to administrators at hospitals and people that work in front line services. I’ve just always found that helping others is my best way to cope and fend off self pity! Sorry this was so long but it was an update a long time coming. Thank you all for your prayers over the last few years. I’ve felt them. God bless you all and may He keep you safe and give you wisdom in these difficult times. Much Love, even to those who I disagree with! 😂😂😂❤️❤️❤️”

The good news is that, 3 years after this update, the TC educator was wrong! There WAS more that I could do! 4 months after this post, I started Dr Tennant’s Protocol and got my life back! Please read my posts about Non Surgical Treatments and PEA, if you want to know more about how I turned my healing around.

Also, please read the other posts for Newbies, etc. I hope this blog can be wealth of information and a source of Hope!