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I have SVC syndrome from a chronic blood clot . Dr said I’ll have be on blood thinners for the rest of my life . But likewise I’m always short of breathe and can lay down flat or bend over.

I'm glad you've made it through all of this, and I like above all ur attitude and positive energy! ❤ May I ask what exactly they did to ur Superior Vena Cava Thrombosis? Did they use a stent or they just cleaned the vein? Thaaank uu!

😞

Thank you for sharing your video. It really helps me as a nurse who has not seen this.👍👍😃😃

Thanks for sharing, Cindy. I had labrum tear / microfracture / impingement surgery 6 weeks ago and I'm still in so much pain. doesn't really hurt to walk but it just hurts constantly 24/7... like a toothache pain constantly in the backside of my hip area. intense dull pain. Did you have any pain during your recovery, and if so how long did it take to go away? Did you do a lot of bicycling during your PT every day?

I'm none the wiser, how do I work out what surface my kitchen cabinets are?

안녕하세요 저는 한국인입니다 pacemaker 15년 삽입중이고 감염으로 제거를 해야되는 상황입니다 제거하고 micra를 삽입하는 시술을 받을 예정입니다 혹시 micra는 배터리가 finished하면 제거후 교체도 가능한가요? 삽입후 운동도 자유롭게 가능한가요?

Dear how are you know?

Hey! I was just diagnosed with SVC syndrome due to my pacemaker wires. It’s too dangerous to try to remove them unfortunately so I’ll have an angioplasty in a few weeks. Did you feel better when you woke up or did it take awhile?

I got one on my birthday at 0 days old in 1989. I never thought about sharing a visit like this :D I tend to forget that it is a "big thing" to get such a device into your body. I routinely helped newcomers battle their worries - when they were all freaked out by the procedure - when I was longterm in the heart department due to endocarditis. They usually get calm from just wathcing me and hearing my story. All life with pacemaker, 35 years and it has practically never held me back.

Why is it bad laying down?

Useless video. Insufficent information. Thumbs down.

I got one too! We're Twinzies!

Thanks

Hello, Cindy hope you are doing well, I am about to having the leadless pacemake installed 10/30/23. I have been looking into the matter and Micra suggest if the device needs to be removed that the person who removes it has done it before. At 47(2017) I had heart failure and AFIB, RF was 21% Doc told me to go for walks and drop some LBS. My wife and I walk 4 to 6 miles several times a week and RF got to 52%. Had cryoablation twice and cured the AFIB, was hoping to get off the meds, Doc had a 2 week heart monitor test and they found and AV block. At 54 I am hoping to live many more years, They are telling me between 9 and 17 years for the battery life, sounds a little optimistic. Take care and be safe.

:)))))

Very wrong

Where to buy HPL plywood in US?

You are such a bright light. I have torn labrum that creates pain during sitting or standing for long periods of time, walking on uneven ground. I still have a lot of range of motion and can do things like weightlifting so im scared that I'll lose range of motion and be unable to lift my leg above 90 degrees particularly to the front and side

OK how are you now? I didn't get hip surgery yet. I have a torn labrum and they won't let me get surgery they want PT.

I'm a pacemaker candidate after having a blackout event while riding a motorcycle. My cardio has been tracking me for years as I have a low resting heart rate under 60. I probably avg 53 while sitting. When working out I only get to maybe 135. Anyway I wax curious about leadless because I want an easy recovery and no problems with lead pullout. I see your concern with replacements. I'm glad you answered that. Thks

Thank you so much for sharing this!!!! I'm in the hospital, and they discovered that I have SVCS ,too, from a blood clot in my SVC that has apparently been here for ages - thanks to an old port-a-cath. I have a bunch of things, including SLE (aka Lupus), Antiphospholipid Antibody Syndrome (another autoimmune disorder), and this one cases me to have "sticky" blood and clot a lot. So despite being on a blood thinner this whole time, it apparently failed, and now, I have a BIG BOI clot with its own vascular structure. It broke off some chunks, and they caused some PE (clots in my lungs), which is how I came to be in the hospital this time. That's also how they ended up figuring out the SVCS. I have insane new veins that quite literally popped up on me - my face (especially my R cheek, eyelid, and temple) and BIG ones on my abdomen and my breasts(both to some degree, the R side being worse) and my chest area, etc. I've been pestering my GP for about a year now about the one on my abdomen, as it's getting bigger and bumpier.... and I HAD noticed my face being discolored and SWOLLEN, esp under my eyes, when I woke up (despite sleeping with my head raised slightly). I thought that was from my kidneys, though, as I also have lupus nephritis. My GP ordered an ultrasound of my abdomen, which obvs showed nothing, as the clot/blockage is in my neck, but didn't do anything else. I think it's awesome that you are helping to show people (medical pros or not) what this looks like! I copied you, and did a video to see, and I get extra veiny in my face, turn purple, too, etc... which I didn't fully realize the scope of until now! Thank you again for sharing your video! Is your SVCS from the pacemaker(s)? As mentioned, mine are from my port (which, in case you don't already know, is an implanted "hub" (hence the name "port" lol) that they access for IVs, labs, etc.

My sister is an idiot, I have a hip labral tear and she said I don't have to run again, she hates running. That's her. Non runners have no fucking idea.

Awesome! What about running were you able to go back to running long distances?

so sad!

Hey chick! I have been trying to find more people's positive recovery stories and it seems you're one of the few! How often did you have to go to physical therapy?

Thanks

OMG. I screamed, winced, and cheered when your leg touched the ground! I'm a long distance runner and I'm going for a consultation to get a labral repair surgery and I am SO scared, but your video gives me hope! Congratulations on your recovery, and continued success!

Hi Cindy! I am having this same issue with an SVC occlusion and I would like to talk more with you about your experience. Can I email you somewhere? I’d appreciate it!

So strong

You had surgery on both hips? How are you doing lately?

How are you doing? I have a lead running through the subclavian vein that is now completely blocked with scar tissue and Dr's are thinking about extracting the lead and pacemaker and placing it down near my abdomen to free up that subclavian to let blood flow, right now I have a blood clot in my left armpit area because of the blockage in the subclavian... not fun uuhhgg. But I did hear about the small micra device but didn't know it was an option for younger patients. Well I hope your still feeling well 🙂 thanks

I haven't ran in 7 months since I started experiencing hip pain. Going to see another doctor today and I'm expecting he will recommend surgery. Thanks for the post

Cindy, thank you for your video. You are so brave! I am supposed to get a micra av on Thursday.

Which is best

Thank you for sharing! I got a Micra AV 3 days ago

Do we need to be careful of technology and cell phones with the Micra AV?

thank you for sharing. I am a medical student preparing for my first round of boards before I start clinicals. It's super helpful to see real examples of these things we read about to help recognize it on an exam and in the future :)

🤫🤫

Wish u to be healed. I have similar experience( svc syndrom due to mediastinal fibrosis). So what kind of surgical procedure did your doctors follow? Removing of the mass or svc grafting? Thank u.

What was the reason for your pacemaker?

Be careful standing up too, I fainted and that’s how I found out! Praying for you 🙌🏾

GO TO THE MAYO CLINIC IN MINNESOTA!!! I had this at 38, you can faint at anytime!!! It’s a horrible feeling as you stand up, they have to burn out the wires! You may not even need a pacemaker!!! They took mines out!

Very cool. Ever listen to your heart?

I wish that her neck veins would visibly bulge continuous looks good on her. Makes her look strong and confident

Perfect neck vein

You are so brave for sharing this scary condition. I enjoy having P.O.T.S, although not the same thing as SVCO, does keep me on my toes! I truly admire your strength, and am rooting for your continued recovery. Finding the positive in the negatives is so important and you sure have a way of doing just that.. God Bless You, always. <3 <3

What did they tell you about the risks of taking the leads out before they did it? Also may I know howlong the pacemaker and leads were inside of you before they were taken out? Thanks alot in advance.

You are so brave... and always smiling! Sounds like the treadmill might be the best option for now. Wow the moment you sat up, your color returned so quickly! Thank you for keeping us updated... you are a hero to me. Stay strong, and God Bless.

Which one is the best?