My Tarlov Cyst Disease Journey: One Month Post-Op

Рет қаралды 2,278

Күн бұрын

#tarlovcystdisease #raredisease #invisibleillness
It had officially been 4 weeks since my surgery to stop the progression of my Tarlov Cyst Disease, so I thought it was the perfect time for an update! If you haven't watched my other videos yet, I encourage you to check out the rest in this playlist as it will probably answer any questions you have regarding the diagnosis and symptoms. I also video'd through surgery to help show the process for anyone who's anxious about going through this.
Disclaimer: this is just my perspective on things, I realize not everyone has the same symptoms. experience or outcome, so please keep that in mind while viewing. Everybody is different, my goal is to help provide hope and comfort to those with this diagnosis as I know it can be such a scary experience.
Interested in purchasing a Tarlov Cyst Disease awareness shirt like the one I'm wearing? Visit here: www.bonfire.com/tarlov-cyst-r...
Check out my surgery week video here: • My Tarlov Cyst Disease...
Learn more from Dr. Feigenbaum: / @frankfeigenbaum

Пікірлер: 13

@kesliemack6971 Ай бұрын

Omg, it's you, thank you so, so much for the Tarlov Cyst Warrior Sticker! When I saw your shirt I recognized the adorable zebra! Thank you so much for sharing your journey with us!

@ColonelRichardHunter 2 жыл бұрын

I'm happy to hear that everything is working out for you!

@clintturtle 2 жыл бұрын

Glad to see the update!!

@Italiana3343 2 жыл бұрын

I just got diagnosed and while I’m glad to have found out what’s been causing these symptoms but the road ahead seems daunting. I’m hoping to contact Dr F to get started on a consult. I’m much older than you so the idea of surgery is very scary as is the fact that there are so few surgeons who do them. Thank you for posting these videos and for your positive attitude

@meetthemaskeys4139 2 жыл бұрын

I'm so sorry to hear of your diagnosis- it can absolutely be overwhelming. Definitely talk with Dr. F and do your research. You really have to be your own advocate with this disease. Be sure to really listen to your body. Best wishes as you continue to work towards answer for your health future. ❤️

@gillianmatthias4456 2 жыл бұрын

Katie glad to hear surgery went well and you are still doing fine. I’d be curious in your next video about a recheck with Dr F at some point and or do you have a PCP that has followed you on this journey and can assist you if you have an issue. Thanks for putting TCs out there and maybe you can write a book about it..🤗 take care

@meetthemaskeys4139 2 жыл бұрын

I actually just went to my local PCP today for a follow up. She has listened and done her own research, but has really put her trust in me as she knows I've been my own advocate though this all. I'm honestly grateful she's listening and willing to help me with whatever I need - all I have to do is ask! Bonus, she gave me clearance to go back to work today - one month early! 🎉

@rayettarydquist5727 2 жыл бұрын

I’m happy for you! My mri recently showed 2 Tarlov cysts on my sacrum. I have had very similar pain as you had so I have appt. With another ortho doc and ask him what he knows. The first one dismissed it to say it wouldn’t cause pain but wants me to get a steroid shot.

@meetthemaskeys4139 2 жыл бұрын

Yes, that is extremely typical. Be careful with any shots in that area. I'm no doctor, but I'm part of the TC Facebook group and many have commented how things like that have caused them to flare. I'd recommend looking into speaking with a TC specialist if you're having a lot of pain.

@selvakumarp1532 2 жыл бұрын

Glad to see you are recovering " I just watched all your videos regarding TCD" yes my wife just got diagnosed with TC one a week back. Thanks for all the detailed video it really helped me in my research -- from the other side of the world (India) thanks again

@meetthemaskeys4139 2 жыл бұрын

Oh, I'm so sorry to hear of her diagnosis. I know how completely scared I was when I got mine. Best advice I can give you as hubby- just be there for her. There will be doctors and others who may be challenging, so she'll need that extra validation right now. My thoughts are with you - wishing you the best and you guys start to work on your plan of action for tackling this awful disease.

@travelwithnaz459 2 жыл бұрын

Hi where are you residing in India. I am from Kerala, I have similar problem. Were you able to find a doctor who treats this

@smitasingh-df7jm 3 ай бұрын

Hi, I just got diagnosed with TC. I am in India as well so wanted to know where did you get the surgery done and if the cysts didn’t recur?