my treatment options for spinal instability, my pros & cons + my decision (fusion or prolotherapy)

[@kengray1291]

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]

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]

Sending you lots of gentle hugs 🫂

[@iammellbell]

Thanks :)

[@emishi2012]

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]

Thank you so much, you are right it wasn't easy to make. Wishing you the best too :)

[@gitexercise9021]

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]

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]

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]

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]

where did u get stem cell treatment? im not far from sydney

[@ashs9803]

@@coledeards5233 denver, colorado

[@iammellbell]

Thanks for the tips!

[@rararatatata8636]

I am trying bpc157 for cci and aai. I hope this works.i am desperate

[@iammellbell]

I hope it helps you, it is very interesting because different treatments can help different people.

[@iammellbell]

It is a shame that we have to be so careful

[@rararatatata8636]

@@iammellbell life is unfair. I don't want this health problems ...I just want peace ....

[@rararatatata8636]

@@iammellbell to feel good....

[@iammellbell]

@@rararatatata8636 awh, I know the feels and I feel so sorry that you do too

[@ThriveOnWheels]

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]

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