u/Ok_Respect_902

Hey,
I posted the other day I had a consultation coming up to discuss amputation. I had that today.

It’s not completely negative but not exactly the outcome I wanted.

He seems more open to the idea of amputation but he wants me to have 1 more limb salvage surgery first. He wants me to essentially have the nerve which causes me the most pain removed completely. He said if I do that 1st and still feel the need for amputation after that then it can increase the chances of a positive out come post amputation as the angry nerve won’t be there.

So I guess now it’s just wait for that surgery, heal from that, then go and see him again.

Just feel deflated that it’s yet another hoop to jump through but I also understand the benefit of it. I just want it over with ASAP now.

Following from my post last week about seeing a new surgeon regarding elective amputation someone suggested making a list of all points I want to get out there in the consultation. I’ve done that, and it’s super long. Can anyone see how to condense this down with the key points still being addressed? If anyone has time to read the below I am very grateful as it’s suuuuuuuper long. I wrote out all my thoughts and then got co-pilot to put it into bullet points:

Elective Below-Knee Amputation Consultation Checklist
My Goal
Leave the consultation knowing I have fully explained my situation, my goals and my reasoning, and that I have had the opportunity to ask all of my questions.
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1. Opening
☐ Explain I felt overwhelmed during my previous consultation with my previous consultant and don’t think I communicated my thoughts clearly.
☐ Explain I appreciate they have only just met me and I want them to understand me as a person, not simply what is written in my medical notes.
☐ Explain I am not asking you to make a decision today. I simply want you to understand why I have reached this point and why I believe amputation remains an option that should continue to be considered.
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2. My Medical Journey
☐ Explain how my symptoms started following my TBI.
☐ Rapid progression over approximately six months.
☐ Severe chronic pain.
☐ Foot drop.
☐ Dystonia/spasticity.
☐ Loss of useful ankle function.
☐ Diagnosis delay.
☐ Approximately 3½ years since onset.
☐ Condition has remained largely static for around three years.
☐ I do not believe meaningful spontaneous recovery is realistic now.
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3. My Pain
☐ Burning.
☐ Tingling.
☐ Cramping.
☐ Deep itching.
☐ Hypersensitivity.
☐ Baseline around 7/10.
☐ Multiple 10/10 pain attacks every day.
☐ Triggered by:
Warm water.
Socks.
Bedsheets.
☐ Also occurs randomly without any obvious trigger.
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4. What Daily Life Looks Like
☐ Mostly wheelchair dependent.
☐ Walking aids.
☐ Cannot trust my foot.
☐ Constantly planning around pain.
☐ Unable to walk normally.
☐ My foot contributes almost no useful function.
☐ My quality of life has been significantly altered.
☐ Every day revolves around managing my symptoms rather than simply living my life.
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5. Everything I’ve Tried
☐ Physiotherapy.
☐ Rehabilitation.
☐ Flint House.
☐ Hydrotherapy.
☐ Desensitisation.
☐ Weight-bearing programme.
☐ Orthotics.
☐ £5,000 weight-offloading AFO.
☐ Continued exercising throughout.
☐ Fully engaged with every treatment offered.
☐ I have never stopped trying to improve my situation.
☐ Extensive private neurological physiotherapy through two separate specialist neuro physiotherapy clinics in Stourbridge.
☐ Continued engaging with rehabilitation over several years rather than relying on a single course of treatment.
☐ Sought both NHS and private rehabilitation in an attempt to maximise recovery.
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6. The Proposed Nerve Release
☐ Explain I understand why superficial peroneal nerve release has been recommended.
☐ Explain I am not refusing the surgery.
☐ Explain I would welcome any meaningful reduction in pain.
☐ Explain my concern is that I do not believe it will restore meaningful ankle function or resolve the dystonia.
☐ Explain my priority is function rather than simply pain relief.
☐ Explain that even if my pain improves, I am likely to remain reliant on a rigid AFO because of the persistent foot drop and lack of ankle function.
☐ Explain that a rigid AFO provides stability but immobilises the ankle.
☐ Explain that a rigid AFO cannot replicate:
Ankle movement.
Push-off.
Adaptability on uneven ground.
Dynamic walking.
Natural gait.
☐ Explain that a prosthesis has the potential to provide greater functional mobility than my current foot and rigid AFO.
☐ Explain that my concern isn’t simply whether pain can be reduced, but whether the treatment is likely to move me meaningfully closer to my long-term goals of mobility, independence and returning to a more active life.
☐ Explain my concern that dystonia may eventually recreate nerve irritation even if decompression initially helps.
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7. Why Function Matters
☐ Pain relief is not my primary goal.
☐ My current foot is:
Painful.
Dystonic.
Weak.
Unpredictable.
Functionally very limited.
☐ My current foot has become a barrier to function rather than a contributor to function.
☐ Explain I am not trying to remove a healthy limb.
☐ Explain I am trying to replace a limb that currently provides almost no useful function with one that may provide greater function.
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8. What I’ve Lost
☐ outdoorsy career
☐ Running.
☐ Representing Great Britain in track and field
☐ Independence.
☐ Identity.
☐ Career ambitions.
☐ Confidence.
☐ The future I had imagined for myself.
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9. What I’ve Done Instead
☐ Adaptive CrossFit.
☐ Wheelchair basketball
☐ Continued strength training.
☐ Maintained my physical fitness.
☐ Maintained my mental resilience.
☐ Continued investing in my health despite chronic pain and disability.
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10. My Long-Term Goals
☐ Independence.
☐ Better mobility.
☐ Less reliance on my wheelchair.
☐ Better quality of life.
☐ Return to a practical outdoorsy job if physically possible.
☐ Return to running if rehabilitation allows.
☐ Continue competing in adaptive sport.
☐ Be able to keep up with my future children.
☐ Remain physically independent for as much of my life as possible.
☐ Live a far more active and fulfilling life.
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11. Why I’ve Reached This Point
☐ This has taken years of thought.
☐ It is not impulsive.
☐ It is not emotional.
☐ It is not a recent idea.
☐ I have carefully considered every option.
☐ I have thought extensively about both the risks and the potential benefits.
☐ I have reached this position after years of living with my current level of pain and disability.
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12. I Understand the Risks
☐ Phantom pain.
☐ Residual limb pain.
☐ Worse pain.
☐ Prosthetic intolerance.
☐ Rehabilitation failure.
☐ Increased disability.
☐ Never walking successfully with a prosthesis.
☐ Losing the little function I currently retain.
☐ Through the wheelchair basketball community I have met many amputees, including several who underwent elective amputations.
☐ Those conversations have given me a realistic understanding of the wide range of challenges that can continue for many years after amputation, including:
Phantom pain.
Residual limb pain.
Socket issues.
Skin problems.
Fluctuations in limb volume.
Prosthetic maintenance.
Replacement of prosthetic components.
The lifelong commitment required for rehabilitation.
☐ I have also seen that rehabilitation is rarely straightforward. Even those with excellent outcomes continue to face ongoing challenges and adaptations.
☐ Seeing both the positive outcomes and the long-term difficulties has reinforced that I am not viewing amputation as an easy option or a cure.
☐ Despite understanding these lifelong challenges, I still believe that, for me, amputation offers the greatest possibility of regaining meaningful function, independence and quality of life.
☐ I accept every one of those risks.
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13. Why I Still Believe It’s Worth Considering
☐ Without amputation I do not realistically see a path back to meaningful function.
☐ With amputation there is at least the possibility of improvement.
☐ I understand there are no guarantees.
☐ I accept it is a gamble.
☐ I believe it is the option that offers the greatest possibility of rebuilding my life, even if that possibility cannot be guaranteed.
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14. Why I Believe I’m a Good Rehabilitation Candidate
☐ I am in my mid 30s
☐ Former firefighter.
☐ Former GB athlete.
☐ Still physically active.
☐ Adaptive CrossFit.
☐ Wheelchair basketball.
☐ Strong work ethic.
☐ Proven determination.
☐ Used to difficult rehabilitation.
☐ Highly motivated.
☐ I do not smoke.
☐ I do not drink alcohol.
☐ I maintain excellent cardiovascular fitness and overall physical health despite my disability.
☐ I believe these factors place me in the strongest position possible to undertake intensive prosthetic rehabilitation.
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15. Why I Would Like My Case Considered Individually
☐ Explain that I understand clinicians use published evidence and outcome statistics to guide decision-making.
☐ Explain that I appreciate why evidence relating to patients with complex neurological conditions is relevant to the discussion.
☐ Explain that I would like my own case to be assessed on its individual merits rather than assuming my likely outcome is the same as the average patient included in published studies.
☐ Explain that my neurological symptoms developed following my TBI and have remained remarkably localised to my left lower limb for over three and a half years.
☐ Explain that my presentation consists predominantly of weakness, foot drop, dystonia/spasticity, loss of useful ankle function and severe chronic pain affecting my left lower limb.
☐ Explain that my symptoms have remained consistently confined predominantly to a single limb since onset rather than developing into a broader or more widespread neurological presentation.
☐ Explain that my symptoms have remained largely static for around three years rather than showing significant fluctuation or progressive spread.
☐ Explain that I have consistently demonstrated resilience and commitment throughout my rehabilitation.
☐ Explain that I have remained physically active through adaptive CrossFit and wheelchair basketball despite chronic pain and disability.
☐ Explain that I am not asking for guarantees or asking for published evidence to be ignored.
☐ Explain that I am simply asking that my own neurological presentation, TBI, goals, physical condition, motivation and rehabilitation potential are considered alongside the available evidence when decisions are made.
☐ Explain that I hope any recommendation is based on my individual circumstances rather than a diagnostic label alone.
☐ I have undergone extensive NHS and private neurological rehabilitation.
☐ Following prolonged rehabilitation, I have reached a point where there do not currently appear to be further rehabilitation strategies available that I have not already undertaken or continue to implement independently.
☐ I have continued to engage with rehabilitation over several years and have consistently attempted to maximise my recovery.
☐ Despite this extensive rehabilitation, my left lower-limb symptoms have remained largely unchanged for approximately three years.
☐ I would therefore like the chronicity, stability and highly localised nature of my neurological impairment following my TBI to be considered when assessing my individual circumstances and rehabilitation potential.
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16. Prosthetic Research
☐ Currently under Dorset Orthopedic Prosthetics & Orthotics.
☐ Face-to-face consultation with the prosthetist from there.
☐ Previously sought advice from Chris Parsons at Design Prosthetics.
☐ Discussed realistic rehabilitation expectations.
☐ Discussed rehabilitation pathway.
☐ Discussed NHS prosthetic provision.
☐ Discussed activity level 4 prosthetic feet.
☐ Discussed running blades.
☐ Discussed private microprocessor ankles once limb volume has stabilised.
☐ Understand prosthetic rehabilitation would take years.
☐ Both prosthetists felt that, should I ultimately undergo amputation, my age, physical conditioning, motivation and rehabilitation goals gave me the characteristics of someone with strong rehabilitation potential.
☐ My expectations are based on professional advice rather than internet research.
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17. Financial Preparation
☐ Able to privately fund advanced prosthetic technology if appropriate.
☐ Understand long-term maintenance and replacement costs.
☐ I have considered the long-term financial commitment that prosthetic rehabilitation may involve.
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18. Body Image & Psychology
☐ I have already had to adapt psychologically to major changes in my body and physical function.
☐ I have adapted to becoming a wheelchair user.
☐ I have adapted to significant changes in my mobility, independence and the way I participate in everyday life.
☐ I believe I have demonstrated an ability to adjust psychologically to substantial and permanent changes in my circumstances.
☐ I believe I could adapt psychologically to limb loss.
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19. Rehabilitation
☐ I know amputation is not a quick fix.
☐ I understand rehabilitation would take years.
☐ I am fully committed.
☐ I would dedicate myself completely to rehabilitation.
☐ I understand that successful rehabilitation would require ongoing effort for the rest of my life.
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20. Why I Feel This Decision Is Time Sensitive
☐ I have now lived with this condition for over three and a half years.
☐ My symptoms have remained largely unchanged for around three years.
☐ I believe I have now given sufficient time for recovery and conservative treatment.
☐ I worry that continuing to pursue interventions that may reduce pain but are unlikely to restore meaningful function could delay rehabilitation unnecessarily.
☐ If amputation is ultimately the treatment I undergo, I would rather begin that rehabilitation while I am still young, fit and highly motivated than several years from now.
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21. Why Timing Matters
☐ I am still young.
☐ Physically fit.
☐ Highly motivated.
☐ I believe I am currently in the strongest position I am likely to be to undertake prosthetic rehabilitation.
☐ My wife and I want to start a family.
☐ One of my biggest fears is spending the next five years pursuing treatments that ultimately do not restore meaningful function, only to arrive at the same decision about amputation when I am older.
☐ If that happened, I would be beginning rehabilitation five years later while also becoming a new father.
☐ I want to be as active, independent and physically capable as possible before we have children so that I can fully participate in family life.
☐ I want to give myself the best possible opportunity to be the father I hope to be.
☐ This is not simply about impatience it is about making the most of the years in which I am physically and mentally best placed to rehabilitate.
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22. My Career
☐ I do not expect anyone to guarantee I can return to the emergency services.
☐ I simply want the greatest opportunity to maximise my potential.
☐ Regaining function gives me the best possible chance.
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23. Why This Isn’t Just About Pain
☐ Pain relief would obviously be welcome.
☐ Pain is not my primary reason for asking about amputation.
☐ My priorities are:
Function.
Independence.
Mobility.
Quality of life.
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24. Why This Isn’t Giving Up
☐ I am not asking for amputation because I have lost hope.
☐ I am asking because I am trying to maximise my future.
☐ I have continued exercising and competing despite everything.
☐ I continue to invest significant time, effort and money into my rehabilitation.
☐ My request comes from wanting the greatest possible opportunity to rebuild my life rather than accepting defeat.
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25. Why I Have Confidence in My Ability to Adapt
☐ I have already adapted to becoming a wheelchair user.
☐ I have adapted to a major and lasting change in my physical function and independence.
☐ I have adapted to a completely different way of participating in sport.
☐ I have rebuilt an active life around significant physical limitations rather than withdrawing from the things that matter to me.
☐ Throughout the major changes I have experienced, I have remained resilient and continued to find ways to move forward.
☐ These experiences give me confidence that, while amputation would undoubtedly involve significant physical and psychological adjustment, I have the resilience and adaptability required to undertake that process.
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26. What I Want the Surgeon to Understand
☐ I have realistic expectations.
☐ I know amputation could make me worse.
☐ I know I may never use a prosthesis successfully.
☐ I accept uncertainty.
☐ I am looking for the best chance of improving my life, not certainty.
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27. My Request
☐ Please assess me as an individual.
☐ Consider my motivation.
☐ Consider my fitness.
☐ Consider my rehabilitation potential.
☐ Consider my goals.
☐ Consider my mindset.
☐ Consider my lived experience.
☐ Keep an open mind if future treatment does not achieve meaningful functional improvement.
⸻
The Four Things I Want You to Remember About Me
✅ I have exhausted conservative treatment.
✅ I am seeking function and independence not simply pain relief.
✅ I have thoroughly researched the rehabilitation pathway, understand the risks, and have realistic expectations.
✅ I am highly motivated, physically fit, and fully committed to whatever rehabilitation is required if amputation is ever considered appropriate.
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Above All
If there is one message I hope you take away from this consultation, it is this:
☐ I am not asking you to ignore the evidence.
☐ I am not asking for guarantees.
☐ I am not asking for an easy option.
☐ I am asking for my case to be considered as an individual.
☐ I am asking that my goals, my resilience, my physical condition, my understanding of the risks and my commitment to rehabilitation are considered alongside the available evidence.
☐ I simply want the greatest possible opportunity to regain meaningful function, independence and quality of life.

Basically I’ve lived with a messed up leg for the last 3 and a half years due to a TBI. I’m in constant pain but worse than the pain is my lack of function. My foot has no functional movement, it’s in a constant state of dystonia and my calf is totally useless and atrophied. I have to wear a rigid split from my local orthotics department at the hospital. This causes extra pain and even skin breakdown when I’m on my feet all day. I have no ankle movement when wearing it at all but it’s the only way I can walk at all.
I reached the point a while ago where I started looking for an amputation. The first surgeon I saw rejected it and wants to do other surgeries instead. I’ve now been referred to another surgeon in a different hospital. I have an appointment in a few weeks time and I’m really anxious about being rejected again. Am I totally wrong for actually WANTING an amputation. I’m still young and very active. I feel like I would have the best chance of rehab while I’m young. Plus the prosthetic feet available have more functionality than my orthotic brace does.
Has anyone else had an elective amputation where they felt almost desperate for it? My previous surgeon who I saw made it seem like a really unethical thing I was asking them to do.
Even bigger question is has anyone else had an elective amputation for neuro reasons rather than. Orthopaedic reasons? How did you ‘persuade’ your surgeon it was what YOU wanted and felt was the best option for you?

Also secondly I am finding myself getting jealous when I see new elective amputees get their surgery. It sounds super messed up to be jealous of people having their legs chopped off but it’s where I’m at mentally with it 😔. Please tell me this is normal and I’m not messed up for feeling this?

Anyone had experience with Dr David Leonard in Leeds? I have been referred to him for possible TMR. He also does amputations and TMR at point of amputation so thinking he may have been some other people’s original amputation surgeon in here

🇬🇧‼️PLEASE ALL READ‼️🇬🇧

UK residents:

I’ve seen a lot of posts saying that from 3rd August trans people will be breaking the law if they use the men’s or women’s facilities based on their gender not sex. That is NOT true.

A trans man using the men’s toilets anywhere in the UK is not and will not be committing an offence. There are no criminal or civil penalties for the individual simply for using those facilities.

The legal changes are about service providers, not about creating new offences for trans people.

If a business chooses to advertise its toilets, changing rooms, or similar facilities as single-sex, it may decide to exclude trans people in order to maintain that status. If, instead, it allows trans people to use those facilities, the legal implications fall on the business’s compliance with the law regarding their advertising, not on the trans person using them.

So if a trans man uses the men’s toilets and the business has chosen to operate them as strictly single-sex, it is not the trans man who is “breaking the law.” Any legal issues would relate to the business’s policies and how it is operating or describing those facilities, not to the individual.

Basically businesses are only legally allowed to advertise their spaces as single sex if they exclude trans people. If they don’t want to exclude trans people they can’t say they have single sex facilities. They can still have men’s and women’s toilets and changing rooms etc, they just can’t advertise them explicitly as ‘single sex spaces’

That doesn’t mean a business can’t ask someone to leave, or have a policy about who can use certain spaces. It also doesn’t mean these changes won’t have a real impact on trans people’s lives. They almost certainly will. Especially trans women.

But it’s really important that we don’t spread misinformation that makes people even more frightened than they already are. There is no new law that makes it illegal for trans men to use the men’s toilets or that legally requires trans people to use facilities matching their sex assigned at birth.

These changes affect what service providers can do and how they operate single-sex spaces. They do not create a legal obligation on trans people to use a particular toilet or changing room, nor do they create a new offence for using one.

Please look after yourselves, support one another, and try to fact-check alarming claims before sharing them. There’s enough uncertainty already without adding unnecessary fear. 💜