So, you’ve already been diagnosed with one rare and “scary” neurological condition, that doctors don’t know much about, and now you’ve found out that someone else thinks that you have another one. What are you supposed to do with this new information and who can you trust about it?
My first piece of advice is, Don’t Panic!
This is not necessarily a bad thing. It’s my belief that the more information you have about your condition, the better, because now you can begin the process of healing. You already had this in your body but now you know about it. Knowledge IS power, especially in these cases.
My second piece of advice is that everything that you should be doing to treat your TCs already, will also help you if you do have AA.
The protocols that I recommend for TCs were based on Dr Tennant’s original protocol. He actually developed it for AA patients, not TC patients, but the objective of treatment for both, is the same. To lower your inflammation, pain and symptoms, while promoting nerve regeneration.
This might make an impact on your decision making process about having surgery for your TCs but I have seen many patients who go into surgery knowing that they have AA and they have actually had quicker recoveries than those who have not been on an anti inflammatory protocol before getting surgery.
I didn’t know that I already had AA when I had my sacral surgery in 2018. I had 5 cysts wrapped and a fusion at L4-L5 at the same time.
I didn’t find out about the AA until 2 years later. I had heard the diagnosis bantered about in the group, but at the time, I believed that I had enough to worry about already with the TCs, and I wasn’t ready to open that can of worms yet.
Little did I know that the treatment for AA would be the “game changer” for my TC recovery itself!
I can look at images from before and after surgery and see that the surgery did not make the AA any worse, in my case. I wish I had known though, because I know that it would have saved me years of unnecessary suffering, had I been on the Protocol before the surgery.
I believe that everyone should be on the Protocol, even if they only have TCs!
So, what do you do with this information?
First, I would look for a second or even third opinion from a doctor familiar with AA. That might not be easy but until you find someone, this potential diagnosis shouldn’t change anything in your protocol that you should already be doing for your TCs. So basically, keep working on finding the protocol options that work best for you.
You can find several options in my post about Non Surgical Treatments.
Now, who can you trust?
I respect Dr Tennant and I am thankful for his protocol, however, I highly recommend getting a second opinion before becoming overwhelmed with anxiety. This diagnosis is spoken of as if it’s the worst thing that can happen to someone and that’s just not true.
If it is undiagnosed and allowed to progress to catastrophic cases, it’s definitely not a good prognosis, but in the last several years, I’ve watched hundreds of diagnosed patients get control of their condition and live very active lives. That is what happened for me as well.
Once we know what we’re dealing with, we DO have the tools to stop progression and to even become healthier than we were when we didn’t know about it!
This has become a very sensitive topic for me personally. I will be forever thankful for Dr Tennant for creating the original protocols that have given me control of my health again. I have personally been helped by him and I have also worked with him for some of his latest “research”.
When I began getting to know him, I had great respect for his work and gratitude for how I had benefited from it. I was actually in awe that he had asked me for my assistance.
For those who may not know this, Dr Tennant is a retired physician who specialized in treating AA patients. He’s written several books that have helped thousands of people!
After his retirement he began to offer his services in reading images for anyone who would send him theirs. This has been a gift for many people and we are all thankful.
In the beginning, he told me that about 1/4 of the patients with any neurological cysts that he had seen, had some degree of AA. He told me about how bad it could get, but he also told me that when it was caught early, the protocol could stop the progression and even reverse symptoms. This has happened in my case.
I still strongly promote Dr Tennant’s original protocols, but I am not pushing his latest additions, because I am not convinced that they are necessary and I believe that further scientific research is needed, to know for sure if they are appropriate or needed for treatment.
I’m not saying that they won’t help someone out there. I just haven’t seen evidence yet, and I know that the original protocol is enough to give people a lot of control of their health again.
The new additions to his protocol can confuse and overwhelm doctors who are possibly already questioning the information that you’re presenting to them.
Getting the testing that is asked for can be very difficult and then the “treatments” themselves can be very expensive and not covered by insurance, etc.
I may change my opinion over time, if see the benefits, but for now I recommend keeping it as simple as possible, because the basics of his original Protocol are enough to absorb now, and work very well.
I have other opinions but the bottom line is that his original protocols have been “game changers” for many patients and I credit them with giving me control of my health again, and for that I’m grateful!
My other concern lately (the last 2 years in particular), is that I’m noticing that almost everyone with TCs who send him their images now, are being told that they have AA.
This did not used to be the case. There were MANY patients that sent him images who were told that he didn’t see any signs of AA. Remember, originally he told me that only about 1/4 of patients with cysts also had AA.
This is why I recommend second opinions, if you want to know for sure if you have it and how bad it might be. Again though, the objective of treatment is the same for both conditions, so it wouldn’t change anything from that perspective.
Since I use this platform to inform patients, and I highly recommend Dr Tennant’s original Protocol, I grappled with addressing these concerns on here.
As I’ve said, I am so thankful for the Protocol, and it’s necessary for our health. However, I believe that anyone who receives a “diagnosis” of AA should always get a second or even third opinion.
MOST IMPORTANTLY, keep your peace and know that even if it is there, it wouldn’t change the things that you should already be doing, even if you only have TCs.
The reason I created this blog was to give you hope, because I had to find these things out the long, hard way, on my own, but I’m living a great life now, even with these conditions and more! I just want to make your journey easier than mine was!
It really doesn’t change anything for you, except give you more knowledge about yourself, that you can use to help protect yourself from procedures that may be dangerous to you, knowing that your spinal tissue and nerves are already weak and struggling. Things like ESIs and any type of injection in or near your spinal column.
I can speak about this subject because I know that I have all of these conditions myself, confirmed by my other doctors. At one point I was definitely a “worst case scenario” patient, and now I am living an active life again, by following the original protocol.
I have also added other components to my own Protocol that I have discovered over the years. I never stop investigating and as I find things that are helping me, I share them with you.
As always, check with your doctor before starting any new supplements or medications!
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