My Tarlov Cyst Disease Journey: Recovery Update

Рет қаралды 1,431

11 ай бұрын

#tarlovcyst #tarlovcystdisease #invisibleillness
It has now been one year and 4 months since I had tarlov cyst disease surgery. Since many of you do still reach out and ask about recovery, I thought I would share a new update. Thank you for following me on this crazy ride.
If you are searching because you were just recently diagnosed with tarlov cysts, please be sure to check out the other videos in this playlist. I hope you find them to be helpful during this scary and confusing time.

Пікірлер: 25

@Spgal 3 ай бұрын

Thank you so much for your updates! Please, please do another one. We, in the Facebook Tarlov Cyst Group, really look forward to hearing about your journey. I hope you're doing even better now that it's been 7 months since your last video. ❤

@nikkipdx4109 10 ай бұрын

Thank you for posting this video doesn't need to be for the numbers but for the people who need it. Thank you

@JLP72517 2 ай бұрын

Congratulations on the pageants. And how wonderful that you were able to get surgery with Dr F. I am working with him as well hoping to be on the other side of this nerve damaging disease Thank you fellow Michigander!!!😊

@Nevr_Run 2 ай бұрын

Thank you so much for sharing your journey with TCD, God Bless.

@NNMV-up7mf 6 ай бұрын

Thank you so much for sharing all this. I have watched all your videos up to this point. They have been very well done and extremely informative!

@PortugalLawyer 7 ай бұрын

So happy for you!!!! Bless you for sharing your info....

@cso131357 11 ай бұрын

I have my surgery in two weeks! Thank you so much for sharing your journey, it has been so helpful to see someone else go through this too & to have an idea of what to expect 🙏🏻

@meetthemaskeys4139 11 ай бұрын

I made a video from my surgery week - if you haven't watched it yet, check it out in this playlist. Sending lots of positive energy your way for a smooth surgery and healing!

@cso131357 11 ай бұрын

@@meetthemaskeys4139 Thank you so much! I checked them out and I have my ComfiLife pillow and ice machine ready!

@wayneyoung4911 8 ай бұрын

I hope your surgery went well. How are you doing with your recovery? I’m in the same boat and want to do the surgery. ❤Thank you!

@cso131357 8 ай бұрын

@@wayneyoung4911there have been ups and downs! My surgery was in August and I gradually made progress and by month 2-2.5, walking 1-2 miles every day and only a little discomfort with sitting, but then this last 6 days I’ve been essentially bed bound from pain/a flare up. I think this is pretty normal, their postop instructions say around the 3 month mark most people have increased pain d/t increased activity. So I think it’s important to know going into surgery that it can be a lengthy recovery with ups and downs, but I still feel it was worth it for the chance to get better

@cso131357 8 ай бұрын

Thanks for asking & for the well wishes!

@vickisvisions 5 ай бұрын

I’m so glad you’re doing so well! This gives me hope!

@1truthse3ker 4 ай бұрын

How are you doing? I've had multiple complications since my onset almost 10 yrs ago of intense nervous pain and my diagnosis of tarlov cyts, herniations and multiple other issues with the spine and hips. Frozen shoulder, auto immune disorders and more. I'm just a mess. But I did not opt to do. Surgery. I'm now 65 and I was told I was unoperable but did not follow through with the surgeon in Texas. That you saw, I've heard good and bad results. Meaning well, some people have wonderful results and recovery. Others not so good and I felt it was too risky for me. Please update and let us know how you're doing. Hope and pray that you are doing fine. But I am concerned since you have not posted anything for many months since your surgery.

@vickisvisions 5 ай бұрын

Did the nerve pain in the hip and abdomen stop immediately after surgery?

@BrainFester 11 ай бұрын

Thank you for sharing this experience! My wife will soon be evaluated by Dr. Feigenbaum. She has seen 2 surgeons already about her symptoms which includes some back pain but mostly numbness, strange random hot and cold changes in her feet, a strange sensation she describes as “sand moving up and down her legs”. Both legs are involved in these symptoms hip to toe. Her pain seems to be mostly “positional” where she can move out of the pain but also move into the pain with the wrong chairs. It seems your symptoms were more pain but some numbness? The surgeons evaluated her mostly for “stenosis” it seems. They do not want to do surgery on her for that. One of the surgeons office stated plainly to us they don’t work on Tarlov cysts which her MRI indicates she has. They can’t/don’t seem to be able to match her symptoms with anything they see in the MRI. I need to watch all of your videos to see if your experience with other spine surgeons was similar. How/when did you become certain your symptoms were absolutely caused by the Tarlov cysts?

@meetthemaskeys4139 11 ай бұрын

Yes, so many surgeons, physicians and radiologists will dismiss these cysts as the culprit. It's really sad. For me, my pain was increasing rapidly and trying to debilitate me that I didn't want to waste any time, so I went straight to the expert (especially after others had already dismissed me). I'm not sure that there really is a "minimally invasive" procedure that can be done when you're talking about messing with spinal nerves. This is why I just went straight to the source, I didn't want to take any chances and I have no regrets. Regarding your consult, tell your wife to have her questions prepared, but do as much research ahead of time as you can. He'll be quick on the phone, but he knows his stuff and she'll definitely be in the most capable hands. If you guys aren't part of the Talov Cyst Support for Cysters and Mysters private Facebook group yet, I highly recommend! Sending lots of positive vibes your way.

@BrainFester 11 ай бұрын

Did you hear of or consider any surgeons that do minimally invasive surgery technics? If yes, was there anything about them that made you feel like their technic would be inadequate? I’ve seen some of those but am concerned they might do something to her that would only be temporary at best or make things worse. Dr. Feigenbaum certainly has the credential but seeing your videos makes me realize this is not a small procedure.

@meetthemaskeys4139 11 ай бұрын

Oh, my answer to this question is lumped in with my other response. And yes, I went almost a year with the pain and in front of about 5 different doctors before finally getting the proper diagnosis.

@dawnbaldini4464 11 ай бұрын

Where did you stay in Dallas after surgery hotel wise how soon were you able to go home ?

@meetthemaskeys4139 11 ай бұрын

Oh, I wouldn't recommend my hotel, so I'm not even going to share. It was an extended stay that had a lot of interesting full time residents and it was super outdated and just not great. Regarding length, you'll have a one week follow up appt with Dr. F after surgery- I scheduled my flight home for the next morning after that and was glad I did because just going to that follow up took a lot out of me, so it was nice to rest before having to travel again.

@wayneyoung4911 8 ай бұрын

I really care and want to know how are you doing today?

@meetthemaskeys4139 8 ай бұрын

I'm actually doing SO GOOD now! Back to all of the things I love, some modified, but for the most part I'm back to me again and I couldn't be happier!