My Tarlov Cyst Disease Journey: Saying Goodbye to 2022!

Рет қаралды 895

Жыл бұрын

#tarlovcystdisease #rarediseases #invisibledisabilities
I am approaching 10 months post-op from my tarlov cyst surgery and, since it's been a couple of months since my last video update, figured I'd fill you in! I'm so ready to say goodbye to 2022 and start a fresh new year. Who's with me?!! 😉

Пікірлер: 15

@monav1423 Жыл бұрын

You’ve been a great help and blessing. I’m so glad to see and hear you are doing better.

@meetthemaskeys4139 Жыл бұрын

Thank you so much - I'm glad you've found these videos helpful!

@monav1423 Жыл бұрын

Hi, I’m getting my records sent to Dr Feigenbaum to set up a online video visit. Im so glad your able to get back to a semi normal life again. I’m nervous about this visit and wondered if in your visit with him you found out how long it takes for these cysts to erode the bone. Two of my are sitting on my sacrum bone and I also have osteoporosis in that area. My orthopedic surgeon knew that they erode bone and tissue but didn’t know how to fix it and wouldn’t touch it nor knew of any surgeon that would. I saw a Dr from California that has a satellite office in Louisville Ky. He also knows about them but never saw anything like mine and was concerned of them causing my sacrum bone to break. I’m wondering if the erosion is a fast process or if I have time to wait . The symptoms are worse now but I’m so apprehensive about getting it done. I’m a little south of you so the trip is long and then having help at home afterwards will be a issue. I’ll have to work this out. I was just curious about how fast this erosion is. It’s so creepy to imagine a cyst doing that. Thank you for all of you very helpful videos. I will be sure to mention you as the first source of information about Dr Feigenbaum I got. Prayers for your continued healing and NO more cysts developing.

@meetthemaskeys4139 Жыл бұрын

Hello. Thank you for watching my video and reaching out. I'm so sorry to hear of your pains and struggles. Unfortunately, it's all something I know too well. For the bond erosion question, I honestly don't know if anyone really knows a timeline. I'm not a doctor so I definitely don't know the answer, but I had the erosion and asked Dr. F how long that takes and he just said "years." I found that interesting since I had only been really experiencing real pain for a little over a year. I guess it's just how each of our bodies work and handle this disease. Sorry that's probably not the answer you were looking for, but hope it helps a little. ❤️

@monav1423 Жыл бұрын

@@meetthemaskeys4139 Thank you for replying. I appreciate you sharing your experience because if it were not for you I probably wouldn’t have known about Dr F. His approach to surgery makes a lot more since than just draining them. My symptoms went full throttle a year ago and was concerned when my Dr said he was concerned it would fracture the sacrum . I’m looking forward to my video visit with him and I have a lot of questions. I’m so glad your healing and moving on with life. Praying the erosion hasn’t caused much damage .

@dawnbaldini4464 Жыл бұрын

Maybe get a EMG too for your arms I too have paraesthesia in my arms and legs tarlov cyst defined what they call a multitude of them in my sacrum.. I have not had surgery but I hope this year I maybe able to see Dr. F in TX .

@meetthemaskeys4139 Жыл бұрын

Thanks for the suggestion. I'm hoping insurance approves this MRI and that will tell the true tale of what's going on, but I will certainly ask about your suggestion too!

@dawnbaldini4464 Жыл бұрын

@@meetthemaskeys4139 I had problems with insurance approval when I needed a MRI if they don't let you get one by insurance look into your area where you can get one for self pay. In my area there is a place called Affordable MRI for like $ 300.00 dollars all I had to do was get a doc to give me a referral to get in to get one . I paid out of pocket but it was needed cause insurance was holding me up from getting one hope this helps...

@meetthemaskeys4139 Жыл бұрын

@@dawnbaldini4464 yes, I had to do this with one of my MRI's for my initial diagnosis so I know I at least have that option here.

@cutiepyne Жыл бұрын

Katie, thank you so much for sharing. I wish that I could chat with you because a perineural/Tarlov cyst was found in a recent x-ray and I just have so many questions. I'm ready to go to Dr. Feigenbaum, but not sure if I will be able to and am not wanting just another surgeon to take care of something like this. I went to his site that gives a brief explanation of the process, but as I overthink everything, every detail, I have so many questions to ask. Should I just write them here? Thank you. Mary

@meetthemaskeys4139 Жыл бұрын

Hi Mary! So sorry to hear or your diagnosis, but I am absolutely happy to chat with you. If you're on Instagram, you can find me there (@katiemaskey) or feel free to email me at katie.maskey@gmail.com. Hoping I can help!

@dawnbaldini4464 Жыл бұрын

Hi, I too have Tarlov Cyst disease.... I been wondering how you got your insurance to pay for a specialist out of state ? I been diagnosed over a year ago and my doctors here will not help me in my state or even acknowledge there is pain associated with it .. I feel so very very alone in this and would love to speak with you if that maybe ok ... You look really great now I hope all is well now for you too .

@meetthemaskeys4139 Жыл бұрын

Oh, I'm so sorry to hear of your insurance issues. I too had to jump through hoops to get my insurance to approve surgery. Luckily though, they considered Dr. Feigenbaum in-network, out of state, so after rounds of back-and-forths they finally approved. It did take a bit, but Dr. F's office honestly did all of the work with communicating with them, so I personally didn't play much of a role there. I was given the advice to ask my insurance to be assigned to a case manager so I had one person from the company to speak with who was helping my case, so if anything, I'd recommend looking into that. You're definitely not alone there though with the insurance hoops.