-I can't use the walkaide as it relies on a somewhat 'normal' gait which I don't have. It depends on the angle of the lower leg to determine when to 'fire'.
-fyi Bioness has a stimulator for the upper leg as an addon to the drop stim, but that isn't my problem.
Amputation for foot drop?
Re: Amputation for foot drop?
The biggest thing I see with amputation is that even if your ms is RR you're probably still progressing. When your left arm quits working will you want to amputate that too? It's a never ending condition that will continue slowly creeping to other areas unless you're extremely lucky. I am RR diagnosed in August of 2006 but I have progressed from foot drop to whole left leg not working well to left hand not working well, to left arm not working well. It's a creeping paralysis (as Wheelchairkamakazi puts it). Even RR progresses.
Marcia
Re: Amputation for foot drop?
There is a big difference in a foot vs arm. The foot is what's causing my trips and falls. The foot is stopping me from so many little things like walking in/out of the house through our sliding door (with a small threshold), and other annoying issues. Really upsets me I can't even climb in to my friends boat without it being a major production.
Re: Amputation for foot drop?
I came across this thread completely by accident and felt compelled to stick my oar in!
Admittedly I hail from a different medical condition background but it would appear share a complaint as with one of your members---drop foot-foot drop- peripheral/dorsiflexion nerve palsy etc etc etc etc. I have juvenile onset stills rheumatoid arthritis. I am also an above knee amputee resulting from repeated infection of knee replacements-ultimately osteomylitis and MRSA.
I know little about MS but do lower limb palsy from pre existing conditions, accidents, negligence and birth defect. I have read extensively on this subject in order to fully understand the condition , its consequences and treatment currently available, due to becoming a sufferer, following a total hip replacement 2years ago.
Jay 123 I feel your pain-I genuinely do.
I am utterly shocked by what seems to be some of the unhelpful (at best) to quite frankly heartless comments from some who posted replies.......e.g: "I don't think amputation is medically indicated for foot drop. I doubt this is even an option, you couldn't find a surgeon who'd agree to do this................" & "When your left arm quits working will you want to amputate that too?"
I appreciate to some, what you consider is inconceivable borderline perverse! To me Jay you are amongst the sanest on this board. As for perverse........ well keep that to yourself!!
In all seriousness I believe what you ask is quite a valid solution.
Obviously each condition that causes foot drop has its own unique set of challenges, just as each individual reacts to the debilitating lost function differently-some can rationally cope and move on, whilst others completely fall to pieces and consider the condition an outright life changing catastrophe. I fall, as I suspect you do Jay, in the latter group.
Coming from an above knee amputee,prosthesis wearing, fully adjusted and accepted school of thought, I believed I had overcome one of the greatest challenges the human body can encounter, in terms of continued safe and adequate mobility. Having immediately worked towards getting the best out of a prosthetic I could, pushing myself to exhaustion in order to get the best chance of a NHS prosthesis that would enable me to walk the best I could and enable leisure pursuits, I was provided one of the best limbs one can attain within the limits of NHS funding. Unfortunately, not hailing from a military background meant my access to microprocessor units was out of the question altogether.
(In fact NHS funding makes provision for ex military users a priority (thinly disguised as a separate funding source), followed by-but not closely, those who might be able to contribute socio-economically back into society or those proving exceptional sporting prowess or participation in advanced mobility level activities (or the likelihood to perform) and finally last to be provided for (and the largest in patient numbers incidentally) are the medium mobility grades thru to the home ambulator, who have the pleasure of competing for the scraps, made up of lower quality and inherently inferior prosthetics and suspension devices. Whilst this sounds like a rant, which it is in part, it is a serious point worth noting when considering an amputation of any limb. Choose your dsc prosthetic unit carefully, look and ask the uncomfortable questions and randomly speak to patients there.)
Just when I was becoming strong and able my hip failed due to the rheumatoid process and required replacement. A spinal anesthetic was used and with hindsight clarity, a less than capable surgeon. Immediately post op in recovery, the symptoms of foot drop were noted, but not acted upon by the surgeon, at a point where examination in theatre may have proved most beneficial.
The upshot is I have been left with a permanent disability that is more debilitating than anything I have previously had to tackle, even the above knee amputation. Such is the extent of it and lost function, I fall heavily almost daily, poor circulation due to muscle atrophy and lost calf pump has caused ulcerated tissue and general tissue breakdown in the calf area front ,back, and sides. I suffer ever increasingly serious infections which leave me with growing open wounds producing rivers of exudate, lost all balance ability, have constant severe back ache due to the poor gait pattern, neurological pain & phantom pains identical to those experienced after an amputation (but bizarrely much much worse), foot arch cramp, and now finally find myself virtually housebound and reliant upon my wheelchair if venturing outdoors. Even though I wear an AFO splint and 2x gutter crutches.
My foot is a floppy, mostly numb chunk of meat which is there to simply make my life a nightmare. Its as simple as that. Ive done 2 years of rehab, tried a multitude of different AFO splints even Psychological referral for the entire time, to assist in my ability to cope and adapt. Generally I am great at this. My life has been one set with challenges from my ever changing physical ability due to the degenerative nature of my underlying condition and the succession of surgical procedures to maintain/regain joint function or replace joints entirely, with by and large, and at best minimal but painful gains, which are soon lost as the disease progresses. I pride myself with the ability to adapt and find ways in which I can participate in life generally, despite my disability and its obvious limiting effects. Foot drop is of such seriousness that the very best splints merely assist in terms of several degrees improvement in neutral position. ESD's are not a viable or suitable treatment to all sufferers. Splints often cause more damage to tissues on the affected limb-especially for those who suffer the associated swelling of the limb.
Foot drop widely varies in its symptoms and its effects. Equally so, the individual facing them reacts differently to the loss of function. To broadly say foot drop does not warrant amputation below the knee is as incredibly short sighted, as it is unhelpful. To suggest no orthopedic surgeon would agree to amputate such a limb is equally a nonsense. I know of such consultants who believe in the quality of life one enjoys is as, if not more important, than living by the mantra of save a limb at all costs.
To dismiss your notion of amputation based purely upon a sarcasm and suggestion you are weak (above quote) is not only completely unhelpful but in my opinion totally and utterly disgraceful. As a sufferer of whatever condition, a carer or a medical professional, or in whatever capacity such a person who quotes such, should know better or at the very least have the empathic ability to realise your post isnt so much a question per-say, as it is a plea for information, fellow sufferers experiences and a general supporting ear.
Jay123, what your facing is for sure a massive decision and you face a process designed not to meet your best interests entirely, but to limit ones ability or notions of future litigious action against the medical profession.
You know your own body -I nor anybody else can truly say what is best for you. My advice is to not dwell upon expressing to Consultants etal, the disabling features of your foot drop - they are paid the big £££ to know this already- but to emphasise its overall devastating impact it has upon your 'Quality of life'.
Remember your not justifying why you think an amputation is appropriate, your not medically qualified to do so, (i think) over another course of treatment. You are from your own personal and individual position, explaining your current poor quality of life as a result of foot drop , and how through your detailed and extensive enquiries with other patients with foot drop and amputees, together with available literature, come to the overwhelming opinion that an amputation is the most suitable course of action to improve your current quality of life. Be respectfully assertive with your position. A truly knowledgeable and contemporary thinking Consultant, is one who is open to the patients requests and wishes, provided of course they are formed not as a knee jerk, but over a period of time which has afforded you adequate experiences and time to formulate a thorough thought process in terms of how you wish to proceed. Ultimately its your body, and if 2nd 3rd 4th 5th or 6th opinions are needed to find the Consultant who is prepared to consider your views, then so be it.
I'm becoming increasingly dissolutioned as to the worth of many forums now, when one seeks help with serious issues and is subsequently ridiculed and or scorned by those who claim to know better.
If you like Jay123, pm me and i will help you where I can within the scope of my own experiences. I can promise not to dismiss, devalue or ridicule you because of your questions or views. A claim it would appear some on this and other forums cannot make.
Admittedly I hail from a different medical condition background but it would appear share a complaint as with one of your members---drop foot-foot drop- peripheral/dorsiflexion nerve palsy etc etc etc etc. I have juvenile onset stills rheumatoid arthritis. I am also an above knee amputee resulting from repeated infection of knee replacements-ultimately osteomylitis and MRSA.
I know little about MS but do lower limb palsy from pre existing conditions, accidents, negligence and birth defect. I have read extensively on this subject in order to fully understand the condition , its consequences and treatment currently available, due to becoming a sufferer, following a total hip replacement 2years ago.
Jay 123 I feel your pain-I genuinely do.
I am utterly shocked by what seems to be some of the unhelpful (at best) to quite frankly heartless comments from some who posted replies.......e.g: "I don't think amputation is medically indicated for foot drop. I doubt this is even an option, you couldn't find a surgeon who'd agree to do this................" & "When your left arm quits working will you want to amputate that too?"
I appreciate to some, what you consider is inconceivable borderline perverse! To me Jay you are amongst the sanest on this board. As for perverse........ well keep that to yourself!!
In all seriousness I believe what you ask is quite a valid solution.
Obviously each condition that causes foot drop has its own unique set of challenges, just as each individual reacts to the debilitating lost function differently-some can rationally cope and move on, whilst others completely fall to pieces and consider the condition an outright life changing catastrophe. I fall, as I suspect you do Jay, in the latter group.
Coming from an above knee amputee,prosthesis wearing, fully adjusted and accepted school of thought, I believed I had overcome one of the greatest challenges the human body can encounter, in terms of continued safe and adequate mobility. Having immediately worked towards getting the best out of a prosthetic I could, pushing myself to exhaustion in order to get the best chance of a NHS prosthesis that would enable me to walk the best I could and enable leisure pursuits, I was provided one of the best limbs one can attain within the limits of NHS funding. Unfortunately, not hailing from a military background meant my access to microprocessor units was out of the question altogether.
(In fact NHS funding makes provision for ex military users a priority (thinly disguised as a separate funding source), followed by-but not closely, those who might be able to contribute socio-economically back into society or those proving exceptional sporting prowess or participation in advanced mobility level activities (or the likelihood to perform) and finally last to be provided for (and the largest in patient numbers incidentally) are the medium mobility grades thru to the home ambulator, who have the pleasure of competing for the scraps, made up of lower quality and inherently inferior prosthetics and suspension devices. Whilst this sounds like a rant, which it is in part, it is a serious point worth noting when considering an amputation of any limb. Choose your dsc prosthetic unit carefully, look and ask the uncomfortable questions and randomly speak to patients there.)
Just when I was becoming strong and able my hip failed due to the rheumatoid process and required replacement. A spinal anesthetic was used and with hindsight clarity, a less than capable surgeon. Immediately post op in recovery, the symptoms of foot drop were noted, but not acted upon by the surgeon, at a point where examination in theatre may have proved most beneficial.
The upshot is I have been left with a permanent disability that is more debilitating than anything I have previously had to tackle, even the above knee amputation. Such is the extent of it and lost function, I fall heavily almost daily, poor circulation due to muscle atrophy and lost calf pump has caused ulcerated tissue and general tissue breakdown in the calf area front ,back, and sides. I suffer ever increasingly serious infections which leave me with growing open wounds producing rivers of exudate, lost all balance ability, have constant severe back ache due to the poor gait pattern, neurological pain & phantom pains identical to those experienced after an amputation (but bizarrely much much worse), foot arch cramp, and now finally find myself virtually housebound and reliant upon my wheelchair if venturing outdoors. Even though I wear an AFO splint and 2x gutter crutches.
My foot is a floppy, mostly numb chunk of meat which is there to simply make my life a nightmare. Its as simple as that. Ive done 2 years of rehab, tried a multitude of different AFO splints even Psychological referral for the entire time, to assist in my ability to cope and adapt. Generally I am great at this. My life has been one set with challenges from my ever changing physical ability due to the degenerative nature of my underlying condition and the succession of surgical procedures to maintain/regain joint function or replace joints entirely, with by and large, and at best minimal but painful gains, which are soon lost as the disease progresses. I pride myself with the ability to adapt and find ways in which I can participate in life generally, despite my disability and its obvious limiting effects. Foot drop is of such seriousness that the very best splints merely assist in terms of several degrees improvement in neutral position. ESD's are not a viable or suitable treatment to all sufferers. Splints often cause more damage to tissues on the affected limb-especially for those who suffer the associated swelling of the limb.
Foot drop widely varies in its symptoms and its effects. Equally so, the individual facing them reacts differently to the loss of function. To broadly say foot drop does not warrant amputation below the knee is as incredibly short sighted, as it is unhelpful. To suggest no orthopedic surgeon would agree to amputate such a limb is equally a nonsense. I know of such consultants who believe in the quality of life one enjoys is as, if not more important, than living by the mantra of save a limb at all costs.
To dismiss your notion of amputation based purely upon a sarcasm and suggestion you are weak (above quote) is not only completely unhelpful but in my opinion totally and utterly disgraceful. As a sufferer of whatever condition, a carer or a medical professional, or in whatever capacity such a person who quotes such, should know better or at the very least have the empathic ability to realise your post isnt so much a question per-say, as it is a plea for information, fellow sufferers experiences and a general supporting ear.
Jay123, what your facing is for sure a massive decision and you face a process designed not to meet your best interests entirely, but to limit ones ability or notions of future litigious action against the medical profession.
You know your own body -I nor anybody else can truly say what is best for you. My advice is to not dwell upon expressing to Consultants etal, the disabling features of your foot drop - they are paid the big £££ to know this already- but to emphasise its overall devastating impact it has upon your 'Quality of life'.
Remember your not justifying why you think an amputation is appropriate, your not medically qualified to do so, (i think) over another course of treatment. You are from your own personal and individual position, explaining your current poor quality of life as a result of foot drop , and how through your detailed and extensive enquiries with other patients with foot drop and amputees, together with available literature, come to the overwhelming opinion that an amputation is the most suitable course of action to improve your current quality of life. Be respectfully assertive with your position. A truly knowledgeable and contemporary thinking Consultant, is one who is open to the patients requests and wishes, provided of course they are formed not as a knee jerk, but over a period of time which has afforded you adequate experiences and time to formulate a thorough thought process in terms of how you wish to proceed. Ultimately its your body, and if 2nd 3rd 4th 5th or 6th opinions are needed to find the Consultant who is prepared to consider your views, then so be it.
I'm becoming increasingly dissolutioned as to the worth of many forums now, when one seeks help with serious issues and is subsequently ridiculed and or scorned by those who claim to know better.
If you like Jay123, pm me and i will help you where I can within the scope of my own experiences. I can promise not to dismiss, devalue or ridicule you because of your questions or views. A claim it would appear some on this and other forums cannot make.
Re: Amputation for foot drop?
Just bringing this back up again.
You know, in reading my prior comment, I can see how naive I was. Almost 10 years later, I find myself in a similar position to understand how the OP was feeling as I now too experience how limiting and frustrating a significant footdrop can be. What I had 9 years ago was not anywhere near as debilitating as how it has progressed for me. I see how I lacked the benefit(?) of first hand experience of just how bad it can be and how it can affect quality of life. I've had my mind wander too to how much easier it might be if I didn't have my leg there to trip over. Falls are such a risk factor and it's exhausting being hypervigilant trying to protect myself. I've had some pretty risky falls now.
In 9 years, do we have anything better available to help us? AFOs and ESDs are not helpful to me.
I wonder if the OP found any solutions?
You know, in reading my prior comment, I can see how naive I was. Almost 10 years later, I find myself in a similar position to understand how the OP was feeling as I now too experience how limiting and frustrating a significant footdrop can be. What I had 9 years ago was not anywhere near as debilitating as how it has progressed for me. I see how I lacked the benefit(?) of first hand experience of just how bad it can be and how it can affect quality of life. I've had my mind wander too to how much easier it might be if I didn't have my leg there to trip over. Falls are such a risk factor and it's exhausting being hypervigilant trying to protect myself. I've had some pretty risky falls now.
In 9 years, do we have anything better available to help us? AFOs and ESDs are not helpful to me.
I wonder if the OP found any solutions?
Re: Amputation for foot drop?
Have you tried the Ossur FootUp?
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