u/CertCrip

This is going to be a long one I'm sure, and I'll try to update it as much as I can. Thank you for any and all support that muddles through this time together with me.

I am a 23F and I have had both chronic pain and complete lack of mobility in one of my legs for around 10 years now. For my physical and mental well-being I am choosing to amputate and leg go of this burden of 10 years. I am not looking for alternative solutions or PT suggestions; I am just looking for resources I can contact and/or support in navigating the insurance, amputation, and prosthetic process.

I had Osteosarcoma which I'm sure all of you can imagine at that age was not very easy. In the end, I had a whole bunch of chemo, a bunch of surgeries, it wasn't removed fully from my leg during the initial surgery so they had to go back in just for it then show up in my lungs in 3 places very close to my heart.

At the end of it all, I had my knee and most all of my femur replaced. I didn't have family support through this and have continued on without it. It is really in the end, just me, my partner, and my goal to be able to walk through the grass, down stairs, and ride roller coasters after all these years.

I am located in Indianapolis IN and I have tried my best to research as much as I can on my own. My mind is set on what I want to do which is a secondary amputation... I just don't know the proper roads to take.

THE PLAN/NOTES

-I am currently working through getting my insurance back due to them sending the redetermination letter to the wrong address. I work as an RBT (which I love but is difficult due to my pain and limitations. I've just never been a "sit down type" I suppose) so my hours are exactly the same as any FSSA departments so trying to work through this quickly isn't super feasible sadly. I just want to line up what I can for now. But I did have MHS HIP Plus I believe the name is for my insurance previous to it being canceled. So, I'm going to base my decisions based off of that insurance in particular.

1.) From my understating, I need a Primary Medical Provider to refer me to a specialist

2.) I believe the specialist I need would need a "complex orthopedic oncology follow-up". In specific, I am looking to try to get in contact with Dr. Wurtz with IU Health Orthopedics Oncology. I hear that he is very compassionate and understanding which is truly what I need. A refresh so to say with someone that will listen to my story and dreams.

3.) I know I will most likely need some type of mental health screening with a psychiatrist to make sure I am competent to make this decision and know the consequences.

4.) I know that I will most likely have to contact some prosthetic advocate to help with muddling through insurance.

5.) I heard briefly that IU Health offers something called "charity case" which could help cover additional costs for a high-functioning prosthetic, which is what I am looking to get.

6.) Does anyone have any experience requesting old pediatric records from Riley/IU Health? I just want to make sure the Dr. Wurtz would have a full picture of the initial limb salvage process.

7.) I was informed there's a bill in the Indiana Senate right now, if I'm not mistaken, that is called SB 0072 (so every body can move) which would basically require insurances to cover these prosthetics so I can go on a jog or go to the beach. If there's anyone that has used this/knows about it, please let me know!

8.) As an RBT, my job is definitely very physically demanding with me needing to be able to pivot, move quickly for safety, and keep up with my kiddos. Currently for me, requesting a high-functioning prosthetic is a a professional necessity.

-I'm not in the best financial situation by any means so I am really looking for some heavy insurance support because I'm sure this option will not be easy... at all lol.

Additionally, if there's any amputees that are RBT's, please let me know. What's it like? Does it make the job even cooler especially for the kiddos? With my clinic I have precautions in place currently that makes my job a lot easier/safe to perform but I am just curious as to how it would play out post-surgery. I know that I will be more functional than I am now which I am excited about, I just was curious. Thanks!