Advice for the TC “Newbies”!

Patients can have vastly different reactions to this diagnosis. For many, who have been searching for answers for decades, they can feel relief and vindication when they finally figure out there is an answer to their suffering and deterioration.

For others, who have been leading active, healthy lives, but then the symptoms have suddenly come upon them, they can feel terror and fear that their lives have been forever altered.

Whatever situation that you find yourself in, there is hope. I’m going to “bottom line it” for those of you in fear and then offer my suggestions on how to get started on this journey.

Yes, this will alter your life, but for most people, only for a little while. The VAST majority of patients that I’ve witnessed, after being in support groups for years, have been very active in the groups for a year or two and then, after figuring out their disease, and either getting surgery with the specialists, or getting control of their pain and symptoms through the right protocols for them, end up recovering to the place where they rarely even visit the groups anymore because their lives have resumed! They’re enjoying their health, careers and families again, and don’t need or want the groups anymore!

As an admin in groups for years, I have watched waves of active participants come and go, which has given me insight into the recoveries of members. New members come in and bond with other slightly “older” members, and that becomes its own mini support system. They may get surgeries around the same time, and go through the same phases of recovery, and then they leave.

Many have formed lifelong bonds with their network of Cysters and Misters. I know that some of my very best friends are the people that I started my journey with. They are the ones who completely understood what I was experiencing and we held each other’s hands in each step, together. Over the years I’ve continued to gather new friendships.

For some, like myself, who have unfortunately been living with their cysts undiagnosed for years, and even decades, their journeys may take longer but at least they know what’s going on now. They may have to manage their disease (or diseases) for the rest of their lives, but there’s even hope for them. Finally knowing the causes can lead to the treatments and protocols that can give them more of their lives back.

I was partially paralyzed for 9 months and home bound for 5-6 years, but now I’m living a great life, even planning a month in Europe with my husband this Summer. This includes an 11 hour flight! I washed my Jeep by myself last month and just put together 2 full sets of shelving units from IKEA! If I can get this far, I believe anyone can too!

Update: My trip was fantastic and I have 5 trips already planned for 2024! I’m making up for the “lost years” now!

So, where to start!

Step one, take a deep breath….

The next step is to get copies of your images, that you can send to the TC Specialists. Their opinions are the most vital. It generally takes about 3 months to get their phone consults, so the sooner you get your stuff out to them, the better.

The MRIs do not need contrast but if you only have lumbar, and it doesn’t give the whole sacral view, they’re going to tell you that you’ll have to get a new MRI that includes the whole sacral space. You might as well ask your doctor for that now.

The specialists are going to be the ones to tell you if your TCs are symptomatic or not. It’s only when you know that, that you’ll know how much more you need to learn.

After that, the next thing that I advise every new patient to do is to start making hard copies of everything that you learn from, as you learn it. It can be things from this blog, research that you find online, etc. Anything that helps you understand your disease, and then put it all in a folder.

Then, make copies of that folder to share with all of your healthcare providers. Because this disease isn’t well understood, anything that you can do to help your “medical team” have less work to do, to help you, the better!

They barely have time to help the patients that they do understand. They are NOT, generally, going to take the time needed to understand you. However, if you do that work for them, they might read what you give them.

This includes your pharmacists. They’re sometimes forgotten but you will likely need some prescriptions to help you in this journey, and the better your relationship with your pharmacist, the easier that’s going to be. Let them know who you are and that you’re in a place of discovery with this rare disease.

Give them a folder too. Even if you have to ask them for the best time to talk with them, when they aren’t too busy, or make an appointment, it’s worth the investment of your time. If one pharmacist isn’t nice and interested, find one who is!

In the long run, as your Pain Management doctor attempts to try new meds, etc. your pharmacist can be a great ally, instead of making you feel ashamed or fearful of the medications.

I said before, “Medical Team”. This is where many have to change their way of thinking about doctors. Many are intimidated by, or fearful of doctors, OR they think doctors know everything and so they just follow along, without learning for themselves.

This mindset has to change, as you become your own experts of your disease and your own body. You will hopefully become more educated about yourself than anyone else, and as such, you need a “team” that will work WITH you!

Once I knew what my disease was, I didn’t need them to figure it out anymore. I began to approach doctors then by telling them what my disease is and then giving them the information about my disease.

I wasn’t bossy, at all, but I empathized with their lack of time and offered them the opportunity to work WITH me, as I discovered what treatments might offer me hope, whether it was surgery or non surgical protocols. I eventually became the person that they referred other patients to, when they would get another TC patient.

Yes, this disease can be life altering and it requires work on our parts, as patients, but there is a great deal of hope.

The whole landscape of understanding has changed, just in the years that I’ve been a part of this community. I had suffered with my disease for literally decades but only “joined the community” in 2017, when I discovered my disease myself.

That took getting copies of my records, going back as far as I could, and going line by line, before coming across the “incidental finding” that had been in my records as far back as 2004!

Doctors are finally beginning to acknowledge that TCs can be symptomatic. Mine had been on my MRIs since my very first one in 2004, but no doctor EVER acknowledged that they could have been the cause of my symptoms, even as my symptoms began to become catastrophic!

I had gone from “ologist” to “ologist”. I was given access to the best Clinics and Neurosurgeons in the Country because of my husband’s privilege with his career.

They would call me at home! I didn’t even have to visit them in person. They were doing their absolute best for me, because of who had asked the favors, and yet still, just in 2017, they didn’t acknowledge that TCs were symptomatic. The only thing they did say to me was “If you do decide to go down this road, there’s this doctor in Texas that has specialized in these things, so you should go ask him.”

Now, less than 6 years later, those same surgeons and Clinics that I consulted with, believe that TCs CAN be the problems! I’d like to believe that my case, and my stubborn refusal to accept their opinions, helped them change their minds! I know of at least 2 where that is the case!

I’ll never forget the first time that I discovered that. There was a new member in a support group who had just had surgery. She shared that it was her Orthopedic Surgeon that had quickly diagnosed her and referred her to a specialist. Well, he turned out to be my old tennis partner’s husband, who had doubted me in the beginning.

I had sat at his dinner table, with my folder that I had put together just for him, and explained everything. When I left, I wasn’t sure he was convinced, but then to find out that at least one person’s life was changed by that encounter, brought great joy.

Who knows, you may be the reason that the next patient has an easier journey too!