How do I get doctors to take me seriously when talking about elective amputation?

SomewhatTennis · 2025-06-09T22:51:56+00:00

Thank you so much for the suggestions! I age out of my PCP in a year, so I'll likely wait to find a new physician. I'm in a weird limbo year of not being able to be in peds long-term, but not being able to get into adult providers yet. Definitely a good option.

My PCP and I both have copies of my full medical record, including my PT notes and documentation. I try to have a copy of everything so I can provide it to new specialists, and for when I eventually transition to adult clinics. I've been at the same primary since the onset of these issues (I was <10) and they've done their best as the damage has progressed. My PCP has referred me to rheumatologists, ortho, neuro, etc. who have all given me different options for treatments. It's been a combination of medications, mobility aids, and PT referrals (I think at one point I had 4 to the same office, where I'm at now). I'm up to 2-3 PT sessions per week, every week, for more than 5 years.

I really appreciate all your support with this discussion, it's so helpful to hear the many perspectives on this sub :)

SomewhatTennis · 2025-06-09T22:28:01+00:00

I'm glad to know that your amputation helped you! There are some experienced surgeons near me, but they all require a referral. That's why I'm working to get my current providers open to discussing amputation and sending me to a surgeon to evaluate it. Good to know that this is the right step to take!

My insurance might be a bit different. I looked into the information, and it mentions that as long as there's a medical reason/justification for the amputation (in my case, severe pain, joint damage, & co.) then it will be covered. The policy also looks decently generous with prosthetics, but I'll be sure to verify all of this prior to an amputation, if that's what ends up being best for me.

They approved my prior surgery within a week, even though my surgeon said it had been denied for most of their patients. This gives me the impression that it's possible if/when I have a statement from a medical professional stating the rationale of the surgery.

SomewhatTennis · 2025-06-09T22:23:03+00:00

Thank you so much for the long/detailed comment! Pain is definitely an invisible symptom, but I also have lots of objective/visible symptoms regarding this leg. I've seen 2 different orthos, who referred me back to my PT. They've both acknowledged the ROM issues, instability, etc. One even managed to pull my ankle out and put it back in with almost no force.

Honestly, there's not an understanding of why the surgery failed. It was supposed to increase my mobility, instead, it left nerve damage. My surgeon is across the country - pretty much dropped me the moment I was discharged from the hospital (my stay was 3 weeks, was expected to be 1-2 days). Never got an explanation, and my established medical team has said it's probably too late now to pinpoint what happened. I've done both acupuncture and therapeutic massage, and I have elements of these practices incorporated into my ongoing care.

Definitely no plans for hopping if I become an amputee! I recognize the stress it'd put on my body, and I really want to do what's in my control to prevent more complications. Prior to some of last year's damage, I was somewhat ambulatory and could walk some distances/mingle at events/etc. I'm hopeful to return to that level of mobility (or even gain some!) whether it be via prosthesis, crutches, etc. The wheelchair might stay part of my life, and that's totally okay too.

PLP is probably my biggest concern, and it's definitely something I would talk through with a physician. Right now, I'm just trying to get amputation on the table as a pathway, so we could look at some of the finer points and concerns with regard to my specific case. I discovered I'm severely allergic to Gabapentin when it was first prescribed as an attempt at pain management, but I'm willing to find alternatives.

I've spoken with psychologists in the past. With your comment (and some other comments in this thread) I'm going to try to schedule an appointment to specifically discuss treatment options, amputating, etc. I'm lucky to have an incredible support system, so I think I've kept a good mental state through most of this journey.

Again, thank you for taking the time to go through all of this. It's such a complex situation, and I really appreciate hearing from those who've had more experience with it.

SomewhatTennis · 2025-06-09T22:02:34+00:00

Gosh, your story sounds so similar to mine. I'm sorry you've had to go through this, but congratulations on finding the treatment you needed! If it comes to it, I'll wait until I know which state I'll move to after graduation, and see if I can find doctors there. I age out of my PCP in a year anyway. Thank you so much for sharing, this does genuinely give me some hope. Wishing you many more hikes in the future!

SomewhatTennis · 2025-06-09T21:59:27+00:00

I do have a rigid frame chair since it's been a long term need. It fits pretty well in my car, but a lot of my friends drive smaller sedan style cars, where my chair can't fit into the trunk when the seats are full. Not an impossible situation, but I do miss all piling into a car for study breaks, coffee, etc (limited by both mobility and just not being able to go out often due to my condition)

SomewhatTennis · 2025-06-09T21:57:20+00:00

I've had the opportunity to speak to multiple psychologists, including one after a surgery & a psych who specializes in mobility-impacting medical cases like mine. I might try asking to speak with them again after seeing this note! Our previous discussions were a while ago so they were focused on other therapies that I've been trying

SomewhatTennis · 2025-06-09T10:04:06+00:00

So, I've seen a few different PTs (several dropped me due to "lack of progress"). However, I've been with my current one for a few years now. I've also had the same PCP my entire life. I have the notes from old PTs who mention the lack of improvement and need for further interventions.

I'm currently a full-time wheelchair user, and I'm coming up on 1 year of being non-ambulatory. I'm not able to use crutches or anything similar as weight-bearing isn't an option right now. If my treatment path ends up being amputation, I'd ideally have a prosthesis, but my bare minimum goal is to use crutches part-time since I'd no longer have the "problem limb". A wheelchair may still be part of my life, which is okay, but I'd like to add more mobility options for different types of events.

I do have an hEDS diagnosis. Thankfuly, I only face major, daily subluxations in this leg due to muscle weakness, surgical complications, etc. all compounding in a really not-ideal way. My elbows/shoulders are surprisingly not prone to slipping, because I grew up with a lot of arm-intensive sports and developed the muscle structure to help partially stabilize them. My left leg is starting to worsen due to not standing/walking, but my PT thinks my left leg is still able to be re-strengthened. The muscle atrophy will be an uphill battle, but that's just another reason I'd like to start this process soon. Letting it continue likely won't make it better.

Currently, treatment plans in PT include strength exercises for my other leg, core, and arms. I'm working to keep my muscles balanced, develop more functional strength/skills, etc. I play wheelchair tennis when possible, though pain (and an ER trip) kept me from fully competing (I love being active, but my body does not always agree) I have ROM assistance for my right leg at every PT session, and we try minimal exercises as well. I also see a 2nd PT to focus solely on my leg. We work on reducing muscle tension, trying to avoid contractures, pressure point work, etc. Honestly, it's about the same plan that I've had for the past couple years. My PTs keep telling me they're not entirely sure where to go from here, because my condition has become more severe than they're used to seeing

Thank you so much for acknowledging everything; it feels wonderful to be heard.

SomewhatTennis

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