Most of the time I’m absolutely convinced that nobody really reads my blog or keeps up with my ‘personal’ life on Instagram. I initially started both of these accounts to share recipes, food, my philosophies about health, working out, and my fitness journey, but recently it has grown into so much more. After being diagnosed with this rare spinal condition, I’m now using my blog and social media to document another extremely personal journey I am on. I have been so conflicted with thoughts about keeping things fitness & food focused, but after sharing the first few posts about my condition, I realized that not only can I help bring awareness to Tarlov Cyst Disease, but I actually feel an overwhelming amount of support and encouragement through the more ‘personal’ posts I am sharing.
Simply knowing that even a handful of people are thinking of me, praying for me, and sending me their healing thoughts has truly uplifted my spirits more times than I care to admit. I read each and every single comment here on my blog and Instagram and also try my hardest to respond/comment back! I don’t think I will ever be able to express how thankful I am to everyone who has reached out to me through comments, private messages, and my social media. Truly truly blessed.
So when I briefly mentioned my trip to see the one doctor in the world who can help me, I was surprised to see that some people not only remembered when I was taking the trip, but that they went out of their way to ask me about it! Even though I initially planned to share the details of that office visit and trip to Dallas, I came home thinking that nobody really cared anyways so I wouldn’t bother. However, after receiving a couple of emails, comments on Instagram, private messages, and texts from extended family/friends I decided to dedicate an entire post to the whole Dallas trip… actually, I’m going to be doing TWO full posts! This first one will be a more personal account and then I have a whole other one just for food and my ‘nutrition’ since I have quite a few readers who are interested in that kind of stuff!!!
Let’s get to it!
The biggest concern my husband and I had surrounding the Dallas trip was the airplane situation. Sitting in the same position for more than 10 minutes is the absolute worst for my pain. I can wiggle around to give some relief, but 3 hours being forced to stay in the same horrible position? Not so fun. The first half of the trip to Dallas was as brutal as expected, but then we came up with the BEST solution ever… why not just LAY DOWN????
Being #funsized has its perks!!! The airplane had 3 seats on each side of the plane so it worked out great for us! I had my head in my daughters lap, my legs on my husband, and my tush was slightly elevated to take pressure off my back!!! Genius. Not sure why it took us 2 hours to figure this one out!Departing plane ride was a success!!!
The morning of my appointment with Dr. Feigenbaum I was a complete ball of emotions. After the fiasco of the actual traveling to Dallas (to be shared in part 2 of this story), I was convinced something would go wrong and I would miss my appointment. I woke everyone up early, we got dressed, grabbed the husband and daughter something quick to eat from the lobby (no way I could eat with my stomach doing somersaults), and we were on our way. Please God, let us have the right address, let the GPS work properly, and do NOT let there be any traffic!!!
Since we decided it was best for my son to stay back because of school (he’s a junior in high school and can’t really afford to take ANY time off), it was still extremely important for me to include him in our trip and this important doctor visit. Of course we had text messages and phone calls the entire time, but I also thought it would be sweet to have him ‘physically’ with me as well. I decided to wear the infinite pendant my son had bought me for Christmas a couple of years ago.
Equally as important as my son was having my dad with me. Anytime I’m having a bad day, missing him more than usual, or simply feel the need to ‘connect’ with him, I ALWAYS wear the pendant my sister gave me after our father died. Literally having a piece of him with me at all times may sound morbid to some, but I find SO much comfort in having him close to my heart.
Having the two pendants next to each other is quite fitting since my father and son we so close. They had such a special bond. I don’t think I could have picked a more perfect way to include them in this trip! And of course they were there for my very important appointment!
We arrived at Pine Creek Medical Center with 15 minutes to spare… good thing because that allowed for some car selfie shenanigans!
Here we go… moment of truth!
And meet the wizards who will hopefully and eventually change my life! Dr. Feigenbaum and his assistant Katie!
Dr. Feigenbaum has a wonderful sense of humor and the banter he and Katie have together eased my anxiety almost immediately. There was already very little doubt in my mind that he would be the one to help give me some of my life back, but after this consult I now have 100% complete and utter trust in him. Unlike other neurosurgeons, Dr. Feigenbaum specializes in the treatment and surgery of Tarlov Cysts. He has built his career on studying this disease, its pathology, and its intricacies. Hands down, he is the expert in Tarlov Cyst Disease!
The appointment went more or less how we expected. Dr. Feigenbaum went over my MRI’s, how many cysts I have, what the cysts actually are, where the cysts were located, what nerves they are attached to, did a physical exam, and then we went over my pain/symptoms. My largest cyst (roughly 1.5″) happens to be on the left side of my spine, but unfortunately I am having some issues with my right side as well. It could be the placement of the smaller cyst on the right so before we discussed if I was a candidate for surgery, Dr. Feigenbaum has ordered a spinal nerve root block on the left side of S2. This diagnostic block should help determine whether or not all of the issues I am having are a result of my largest cyst and rule other possibilities out.
While it sucks that I have to go through one more speed bump, I am grateful that Dr. Feigenbaum just wants to be absolutely sure that everything I am experiencing is a direct result of the cysts. Better safe than sorry right? My back and spine look absolutely perfect otherwise, we aren’t anticipating anything funky going on. Any and all back surgeries are already extremely tricky, but ones dealing specifically with your nerves which control almost every function in your body (all lower body for me), hold even more risks.
One aspect to this consult that I am EXTREMELY thankful of is Dr. Feigenbaum actually called my neurosurgeon here in San Diego!!! Right there, on the spot, he made the call and spoke with Dr. Rhoten at Kaiser directly!!! They spoke about the diagnostic nerve root block, why he was ordering it, how and where he wanted it done, and where we would go from there. This is HUGE because now a real connection has been made between the doctors who will be with me for this entire process and recovery. Dr. Rhoten is now familiar with Dr. Feigenbaums work and his success rate so when it comes down to getting a referral for treatment, we won’t have any issues (hopefully). Very very surprised that they were able to speak on the phone about little old me!!!
We left the office satisfied and hopeful! One day eventually, I hope I will be able to stick my San Diego pin in Dr. Feigenbaum’s Tarlov Cyst patient map! I have my appointment already set up for the nerve block consult and hope to have that procedure completely within the next 2-3 weeks. Then we will speak to Dr. Feigenbaum again with the results and he can make his full report for treatment, surgery, and Dr. Rhoten!
Now that the most important leg of the Dallas adventure was completed, it was time to enjoy the rest of the trip! After the appointment, we took it easy, I met up with a friend for lunch (more on that in my next Dallas post), went back to the hotel so I could lay down and rest, then took my husband out to dinner to celebrate his birthday. Poor guy had to have his birthday fall on a week like this! He had already said many times that all he wants for his birthday was for me to get better, but the least I could do was a special dinner! Benihana’s it is my love!
The following day, I was actually feeling pretty good pain/symptom wise so I was determined to see something in this city besides the airport, hotel, highways, restaurants, and medical offices! We decided to check out the Dallas Arboretum and Botanical Gardens. No idea what we expected and my husband was less than excited to go, but in the end the afternoon was absolutely perfect.
I had NO idea how big this place actually was. I was thinking there would be a few gardens to see, a little pumpkin patch, a place to grab some food, and that would be it. An hour tops and we would be done! Boy was I wrong! This place has over 19 gardens AND an entire children’s section filled with life and earth science exhibits! The children’s section alone is over 8 acres!!!
Fortunately, I was able to walk about 1/4 of our adventure, but then it started getting too difficult. I was winded, my back, legs, and feet were on fire, and a migraine had begun to set in. Rather than call the trip short like my husband wanted to do to get me back to the hotel, we had a bite to eat and then found me some wheels! First time ever in a wheelchair, very humbling, and although it’s not fun coming to terms that I’m not quite what I used to be, there was no way I was going to call it quits and leave! My husband and daughter wheeled me around and thankfully the place was almost empty so maneuvering was nice and easy! We were able to check out all of the fun activities.
After leaving the arboretum, we were all ready for some food! Clearly I couldn’t leave Dallas without some real Texas BBQ… if you follow my Instagram, you know this girl LOVES her BBQ!!! Luckily we found a place close to the hotel and after that meal, I am convinced that I must have some of the deep down South in me… hot damn, I love me some BBQ!!!
As soon as we left the restaurant, we saw a candy store. This place was HUGE. My husband LOVES candy and there was no way I could keep him out of the place. While he filled his hands with candy like a little child, Makena and I took some selfies and poked around the store!
My other kid stocking up…
Check out all of this SODA!!!! Just about every flavor you could possibly think of!!!
My tastes were simply this evening… I wasn’t leaving without a packet of good old Razzles.
The next morning we had a quick breakfast, came back to the hotel to pack up, and off to the airport. Return plane ride was even better and after take off, I couldn’t wait to lay down! This time I had my head in my husbands lap and my legs kind of propped up on my daughters tray table. This worked just as good, probably better because I got a nice head and face rub from my husband 🙂 TENS unit was on repeat as well!!!
Just from this brief glimpse here, you can see that our Dallas trip was a success. We hit a few bumps in the road on the journey, but overall everything went smoothly. We had lots of great moments, accomplished what we needed to, but I want to end this post with the two BEST moments from my Dallas trip.
First one came as soon as we landed in Dallas. The day was EXTREMELY long for me. Between the fiasco we encountered at the San Diego Airport (more on that soon), the pain of sitting the first two hours of our flight, and the anxiety I had over my appointment & trip in general, I was kind of a mess when the plane touched down. As soon as I turned my phone back on, there was a text message on my phone. He had been texting me the WHOLE day (somewhat out of character for him) so I figured he was just bored. I texted him back to let him know we got in safely. Turns out he was actually just worried about us.
This is what he sent back to me:
I can’t even…
Of course I love my son with all of my heart, but I also know he’s not always the most emotional or sensitive. Nor did I think that he really cares much about anything that doesn’t have to do with him. Most teenagers are already pretty selfish that way and mine is no different. Or so I thought! He’s been amazing during this medical stuff and continues to surprise me. Turns out he actually does think about someone other than himself! Go figure haha!!! Such a sweet message for me to receive. Although I have been very careful of letting my kids see and hear certain things regarding my condition, it’s nice to know that he is worried about me and the entire family as a whole.
My other favorite moment of the trip also came in the form of a text message. On our way to the arboretum, my daughter sent this to me from the back seat of the car…
Yup, from my 10 year old. I turned around, grabbed her hand, and couldn’t fight the tears as I said thank you for the message. Like my son, she has been absolutely amazing with me. She constantly asks if she can get me anything, doesn’t make a fuss when plans need to change because I’m having a bad day, and is always so sensitive to my needs and new ‘limitations’. Unlike my son, she’s HIGHLY emotional (about everything) and can cry at the drop of a hat for the tiniest things. Throughout this entire ordeal though, she’s held her stuff together for my sake. If she’s worried about something, she will calm herself down before talking about it or will talk to my husband privately because she doesn’t want me to know she’s worried.
I’ve said it before and I will say it many many more times… words won’t EVER be able to express how thankful I am for all that I have. Despite this new part of my life I’m faced with, I am beyond blessed with amazing children, family, friends, and a husband who deserves a series of medals for everything he does every single day. This is a long journey for me, but knowing I am not going through it alone makes everything ten times easier!!!
My heart is full.