Hi Katie! Hoping that you get the surgery scheduling call very soon. Glad to see your videos and hopefully you will be in the March surgery group. I am in your Facebook group, so DM if you want to connect with another Midwestern girl going thru surgery.
Thank you so much for this video. I just found out a week ago I have a Tarlov cyst. I’m scared too, so I appreciate hearing all about your experience and others experience. If anyone wants to contact me, I’d love it if you would. Thanks again so much.
Hi Pauline. So sorry for the delay, somehow I missed the notification of your comment. I'm so sorry to hear that you are going through this as well. I hope you have been feeling well. Best advice - listen to your body and try to stay positive. Let me know if there's any questions I can answer or help that I can provide. ❤️
You are so right about the TCs being constantly on our minds. I can't stop. Morning and night. I hate it. I talk about it to my husband but he doesn't understand. I am so scared for the surgery too but I am also scared of the progression. My pain is not bad no nerve pain down the legs or anything like that. I seem to have flares and this one seems to be going away. I had pain in the rectum and coccyx. Dr S. said I have 3 TC's in my sacrum that are pressing on my nerves and slighty started eroding the bone but not bad so I think I am early too. So nice to have someone who understands. So sorry you had to give up your dream of becoming Mrs. America.
Aww, I'm so sorry to hear you are going through this too. It's no fun at all and while many won't understand, there are plenty of us out there who know exactly what you're going through. That's why I wanted to do these videos to help others find comfort.
I'm brand new to your channel, and have been catching up on your videos. Something you said (around 6:25) really caught my attention, about your lung operation. Many years ago, when I was 17, my right lung spontaneously collapsed while I was at work (office job, not strenuous). I was rushed to hospital with a pneumo-thorax, had a tube put in to get the trapped air out, and sent home a few days later. Two weeks later, my lung collapsed again, and I was operated on. Is this, or similar, what happened to you? Many years later I was diagnosed with COPD, and Ehlers-Danlos Syndrome. Ten years ago, I had my first symptoms of Tarlovs, in the same area as yours (my largest one is between S1 and S2). I find it amazing, and somewhat comforting, to see so many similarities. Wondering if you've ruled out EDS? Good luck with your surgery; I understand that your doc is a rock-star surgeon, who will do his utmost for you. :)
Hello! That is so interesting because yes, that is almost exactly what happened to me. Spontaneous pneumothorax! I ended up with a month stay in the hospital (some of that in ICU) and during that time, had 5 chest tubes, talc spray and when that didn't work, ended with a the pleural abrasion where they had to spread my ribs and scrape my inner chest wall and lung to form scar tissue. Luckily, that was all in 2004 and other than the rib cage pain and some small side effects here and there, I haven't had another collapse since. I honestly don't have any other symptoms of EDS, trust me, I've googled it and nothing really seems to match, but I have wondered if the epidurals during my lung surgeries may have played a factor in my newest TCD diagnosis. So very interesting with the similarities though. Thanks for sharing with me - I hope you are able to stay well.
@@meetthemaskeys4139 Wow, your lung ordeal was worse than mine - so sorry, dear. My TCD is worse, in the sense that my age, combined with other health problems, makes surgery risky, and in a way, impractical. The recovery time of 1 to 3 years, for instance, just might take longer than my life span, assuming I even make it through the surgery. Being quite a bit older than you, I see it philosophically. I'm retired, and thus can use more time doing things that add to my comfort. I've had a fun, mostly carefree life, so it's not so bad. Thank you so much for the well wishes - I truly hope the same for you, and will watch for updates. It will be good to see your recovery!
@@greydoe I had a collapsed lung as well in 1990 and I have TC's in my sacrum as well. So strange. My pneumothorax only took one chest tube and 3 days in the hospital and I was better. Now I am 51 and Dr. S said I should have surgery. I am waiting for my call from Dr. F on March 4th to get his input. I am so scared of the sugery. I have an 11 year old and I am not in much pain right now it seems like my flare is going away. I just don't want to progress and I guess without surgery that is what will happen. I am so scared and don't know what to do.
@@knktoys1313 Don't be scared. What I would do in your position, considering your age, that you have a young child, etc (assuming no other health concerns), is to get the consult, but explain everything to him. It's possible he'll advise you to wait, as not all TCs get worse. I went 6+ years between symptoms, and progression was relatively mild. I have mostly numbness, not much pain. I'm not a doctor, but Dr. F strikes me as a straight-shooter - I'd take his advice.
@@greydoe Did you ever have surgery? I had a flare 2 years ago like this one but this one has more pain in my low back. I have also had pelvic issues feeling like I had a UTI when I didn't since 2015 I had uterine cancer and chalked it up to that and pelvic floor dysfunction. I have flares where it feels like I have a UTI on and off every 8 months or so but that is it. It always gets better within a month but if I wait I don't want to end up with a bladder that doesn't function. I will wait and see what Dr. F says.
Hello! I honestly am not a medical professional so I do not know the best answer to address this question I would refer to a doctor or one of the Tarlov Cyst Disease specialists mentioned on the TCD Foundation website.
