Lisa here . Thank you so very much in sharing your journey, research & I too have hEDS and CCI, trying to make decisions via all the risks and extreme pain & suffering; your blogs are very helpful and you are an amazingly, gifted, knowledgeable person who we all w/EDS learn from you❣️It’s a lonely painful journey made easier by you and others who share so eloquently your own personal journey! Bless you
@iammellbell
Жыл бұрын
Thank you so much for your encouragement. It is definitely a hard road to make all the tough decisions especially with each EDS patient being so unique
@shannongreenwell1278
Жыл бұрын
Sending you lots of gentle hugs 🫂
@iammellbell
Жыл бұрын
Thanks :)
@zer0h0urs000
11 ай бұрын
I don't think I'm as progressed in the CCI/EDS (if I have either) area, but did they say if PRP works better if you're more on the mild side? I was originally diagnosed with ME/CFS (which is quite possible I had). I was having crashes but they eventually went away (weird). I think it was because I paced very early on and quit everything I was doing. However, my neck has been giving me problems for not just the past several months, but the past several years. Originally, nothing intrusive. But now, it affects my sleep, my eating, my ability to do live, etc. I know a friend in my ME/CFS group who is getting fusion and I am hesitant because I live near Dr. Bolognese and they're confident that this will be the cure for their ME. I am not so sure. And I tend to be on the more conservative side of the issue. Though, everyone is different. Thanks for the vid.
@iammellbell
10 ай бұрын
Everyone is defintely different and have different results, for me it is worth it to try other options before a fusion but that may not be right for everyone. I don't know if there is any difference between mild or severe cases, I've seen people who have mild symptoms find improvement and also I've know a couple of people who are some of the worst syptoms that have had incredible results. check out Megan Klee @meganklee659 and Rachael Elisabeth @HealingWithRachael :)
@emishi2012
Жыл бұрын
I really appreciate this vid wasn't easy to make but I'm so glad you did! Thank you for sharing your thoughts with us. I know what it feels like to be hanging on to that hope and I'm wishing you all the best. :)
@iammellbell
Жыл бұрын
Thank you so much, you are right it wasn't easy to make. Wishing you the best too :)
@gitexercise9021
11 ай бұрын
I totally get where you're coming from, and your story feels so much like mine. It's crazy how similar our worries and thoughts are. I'm really excited that you're considering PRP and stem cell therapy. I've got one question and one thought on that: 1. Are you planning to use your own stem cells (autologous) or someone else's (allogeneic)? Since it's a genetic issue, I would think using someone else's would be the best course of action, perhaps a mountain climber (haha). I've heard that stem cells (and maybe PRP, although I need to do more research) tend to go where the cells are signaling distress. But both of us have been dealing with this for a while, and it makes me wonder if these treatments might not be as effective. Plus, there's the whole issue with ligaments having very little blood flow.
@iammellbell
11 ай бұрын
Hey, I am both happy and sad that you can relate! I'm happy that we can be a community but sad that you have a similar story because it is hard. I will only be looking into stem cell therapy if prolotherapy and PRP aren't effective, but so far I have been doing well with prolotherapy. I have heard stories of it both being effective and ineffective, I think it has to do with different patients are different but also I believe it has a lot to do with the way it is done and other factors surrounding the case. So far I am hopeful though :) hope you're hanging in there!
@Michellepuccio
9 ай бұрын
I did prp and prolotherapy in 2021 it worked for a year and a half and I lived normal until may i start spiraling and got more prolo and it didn’t help. Now I need the surgery
@ashs9803
Жыл бұрын
Hey Mariah i also have atlanto axial instability. I relate to this video so much. I have tried 2 x picls in us. Please try stem cells. Im in sydney happy to reach out if u need xx
@coledeards5233
11 ай бұрын
where did u get stem cell treatment? im not far from sydney
@ashs9803
11 ай бұрын
@@coledeards5233 denver, colorado
@iammellbell
11 ай бұрын
Thanks for the tips!
@rararatatata8636
Жыл бұрын
I am trying bpc157 for cci and aai. I hope this works.i am desperate
@iammellbell
11 ай бұрын
I hope it helps you, it is very interesting because different treatments can help different people.
@iammellbell
11 ай бұрын
It is a shame that we have to be so careful
@rararatatata8636
11 ай бұрын
@@iammellbell life is unfair. I don't want this health problems ...I just want peace ....
@rararatatata8636
11 ай бұрын
@@iammellbell to feel good....
@iammellbell
11 ай бұрын
@@rararatatata8636 awh, I know the feels and I feel so sorry that you do too
@ThriveOnWheels
11 ай бұрын
I have brain stem compression, and I am C2 incomplete quad with severe paralysis… I didn’t know about cervical collar, I didn’t know I had CCI and AAI… so now it’s too late to have a choice…my kyphosis of C5-6 also is so bad too that even fusion would recover my arms and hands…but I still want to see if anything else would help besides fusion… but everyone’s different. If your neurological deficits aren’t so bad, and animal based treatment sounds amazing that help you so much!! I had to go through MALS surgery,which really helped eating but my gastroparesis is making me sick when eating meats with more fats… no one would know and have the answer whether you should or not. It is you have to make the decision for you. Happy for you that you are out of the worst time. 🫶🫶🫶
@iammellbell
11 ай бұрын
Awh thank you so much for saying you are happy I am out of the worst times, I really appreciate it and I want to spread that hope to others :) You are exactly right that there are so many things no one can answer whether you should or not and you have to make the decision, it can be both frustrating and empowering. I am so very, very sorry for what you are going through, it broke my heart to read it and I also know the frustration of working with so many factors (eg, the MALS surgery helped you but now its the gastroparesis). Wishing you all the best for future
Пікірлер: 27