Lexi, I’m so happy that you posted these videos. Both my sister and my niece have FSH. They both have had the surgery. My sister was one of the first patients in the world to have the surgery. She had it done over 20 years ago! My niece had both shoulders done within the last year. It made such a difference! You look wonderful. I’ll keep checking your postings.
Good information for someone considering the surgery!! I've had my right done and am on the fence about getting my left done... Primarily bc as you know the scapula is then fused to the rib cage, so there are many limitations of the arm. For me, this is most intrusive during sleep. I can no longer sleep well on my right side because the scapula will not abduct and allow the shoulder to roll forward. Consequently, this results in sleeping directly on my arm which is not only uncomfortable, but puts it to sleep over the long term. I also can't then place my arm under the pillow while on my stomach anymore, bc once again the scapula will no longer allow abduction (swinging sideways to promote additional movement). There have also been a few instances where I've needed my scapula to abduct, but since it can't it causes extreme pain in the glenohumeral joint. Anyway, those are just a few of the reservations I have about getting my other shoulder done. I've had mostly great success with my right, but there are certainly some big drawbacks!
Yeah this happens to me too. So I sleep in my back at an angle or in my side but have to prop my arm with pillows or I use a king size pillow to help with support. I want to get my right shoulder done but I use my right hand a lot so I wouldn’t be able to do a lot or use my good arm I did have surgery in years ago. But some stuff even that arm can’t do.
I recently had mine done in June, the recovery process was long and painful but the outcome of it is so worth it. I am 19, currently studying photography first year at university. I have FSHD.
There is very promising research from fulcrum into the use of Losmapimod to reduce dux4. I believe phase two concludes around June and we should have an answer as to it's effectiveness by the end of 2020.
fellow FSHD patient here! Love your video. I lost a lot of mobility some 7 years ago and now can't lift my arm above 90°. They don't really talk about the surgery here in Belgium or don't actually propose it to me in any case. I can do my hair early in the morning when mobility is a little better, but later in the day the strain on my neck will be too much to be able to tie it at that point. Thanks for sharing your surgery experience
I’m having my surgery in 20 days. I can’t lift my arm past my chest. I only have the problem in my right arm, and in my left I am completely normal. Now that u had the surgery for a while do u think after like a year I will be able to go normal activities like sports and gym?
@@LexiPappas thanks. Also was your scapula bone popping out before u had your surgery? Like when I push something, my scapula bone goes upwards and moves.
Thanks so much for posting this, girl! Very informative. I'm actually getting surgery soon, too. I am wondering if you could explain more about what it was like to get put to sleep? This is the part that freaks me out!! Like, what does it feel like? How do they do it? What does it feel like when they put the stuff in, like do you get sleepy or is more like wide awake to instantly out? Could you have stayed awake if you would have tried or is it impossible? Haha. Basically whatever you remember about that part would be helpful. Thanks so much!
xcalabur18 hey! Good luck on your surgery soon! Being put to sleep is kind of a great feeling haha. They put an iv in your arm, and then the anesthesia kicks in. You just start to get really sleepy and feel good. Then all of a sudden you wake up and the surgery is over. There’s no way I could have tried to stay awake. It’s a crazy feeling! Haha and then you wake up a little loopy.
Thanks Lexi yes I'm working with Boston as well it could be a possibility I need this as well.Have a damaged Spinal Accessory Nerve and tendon transfer isn't working. Im in terrible dysfunction and pain and winging.. sent u a message on instagram about it just to see how u are still making out
Hi! I have FSHD and had my left shoulder done in 2006 at the Mayo Clinic in Minnesota. The recovery was a bit icky but found your video researching it again because I may or may not get it on my right arm. This is my dominant arm or hand so I’m not sure yet. Lol I live in Illinois now so I have to see if my regular orthopedist could do this surgery as he does work in shoulders. Good to see others share stores with you and the comments on here. Maybe I will share mine sometime. Take care. 😊
Heyy, i am 18 years old. Diagnosed with fshd I wanted to ask is there any way i can deal with the lordosis?? I am facing terrible back painn. It's getting hard for me to handle that pain. Do u feel the same?
I would definitely make sure this surgery is necessary and not just a possibility. It can be very limiting to your range of motion. Make sure you go to a doctor who's done this a lot.
Was your doctor Dr. Bassam Elhassan by chance?? I have severe scapular dyskinesia and I am trying to decide if I should have the surgery or not. Mine is only on one side but it keeps me from doing literally everything it's so painful and disrupting my whole spine and ribs at this point 😢😢😢
@@LexiPappas that's interesting because Dr. Elhassan is also in Boston at Mass general Hospital. Anyways I hope you're doing really well and all healed up and fixed up and functional and no longer in pain. Thanks for sharing your video
@@LexiPappas hi I also enjoyed your video.n also have FSHD,n also have my scapular sticking out..it's never bothered me as far as looks but it does hurt n is uncomfortable..I have a severe curve in my spine.i can't walk with out assistance n can only take a few steps without feeling like I'm going to fall.. I recently started to channel to show others a little bit about my life and my struggles with this disease and not only to help others but hoping that I can get some help as well I'm considered surgery but I'm just not sure but this point it would even matter or help considering I can't do anything for myself anyway.. I would really appreciate it if you would stop by my channel ☺️ hope you like.
hope you're doing all right I invite you to my channel it's knew I would like for you to come see me if you don't mind.. you can find me at yanet Cortez.. please let me know if you came by I hope you like please, so I know where you're coming from 💜 I really like to know more about you.
@@yanetcortez3789 I haven't had my surgery yet had tons of insurance issues because my insurance is only statewide and the surgeons were out of state! Good news, I did finally get accepted for out of state with an appeal, my consultation is on the 2nd of November! Have you had a scapular fusion? Need a fsher friend ❤
