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aknurse

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Hello, i am a 32 yr old,wife and mother of a 3yr old. i am a registered nurse on a very busy surgical floor. I became a LAK amp, after a unknown blood clot disorder in May. i walked in ER having leg pain,ultrasound negitive then mri was medicated heavly so went out. found out i was MASSIVE cloted from aorta in heart to bilateral groin. had emergency surgery within hrs.husband was told i could die on table or atleast was gonna be bilateral hip amp. luckly i came out of surgery with right leg intact , not good blood supply in left, took back to OR in a hour to try to get left pulse back, did but lost it again five hrs later, surgeons worked with my leg for two more weeks , debrievments , wound vacs, hyperbairtric treatment with no sucsess, amp.right above knee. i woke up next day to see what had happened. i thought i had been in hospital for about three days and it had been three weeks.I came home in a week, started rehab the next day after amp. three times a week. I of course put on the "I am a strong independent, women and your not gonna see my pain." I couldn't bring myself to research. and now feel i have really goofed up. They say i am doing great,but i feel different at times. i recived my prostesis three weeks ago. the socket fits great except we tweeked with the curve in back digging in by groin,but somthing does not feel right and i don't know if its normal, me or prostetic. i can't seem to put all my weight shift to that side. i thought i felt like i was ,but thearapist says not.I have a long limb with long muscle flap. i have a ottobock 3r60 with journey foot. i feel no pain when trying just not like i am standing at my normal but old stance or position. i am very frustrated, i have fell twice on leg it has no recovery when the knee bends so im down and down fast. last week the knee unit started leaking fluid so we sent it back , recieved new one today.no change. darn. thanks in advance, and sorry so long. i know of noone else. and i need to get back to my beloved job (being a active participating mother, and a devoted caretaker to my patients.)

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Hi aknurse, and welcome! I'm sorry that you had to join our little club, but this is a good site, with some great, helpful people. I'm a BK, so I'll step aside and let our AKs answer your questions. Don't be afraid to ask anything that occurs to you...we'll do what we can to help you get back to "regular life."

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I want to welcome you also. I'm BK so can't help much with AK issues.

It is normal to feel frustrated. You are learning something new in your life. Prostheses aren't always the most comfortable accessory to ones daily routine, but they shouldn't be that painful. Keep working with your prosthetist.

The first year is the worst. It takes a lot out of a person to learn how to cope with life as an amputee. Get back into a normal routine as soon as you feel like it. Even half days will make you feel better. You have to solve the pain issues first.

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Welcome. You will find plenty of people here willing to help out where they can. I am not an amputee yet but I have been facing the possibility for a little while, if I have to get the amp it will be a knee disarticulation so I have had to do all the research that an above knee would. I can't give advice on phantom issues or dealing with socket fittings ( the type of thing that takes personal experience) however I have done a lot of research on knees and feet so I can be some help there. If your job has you on your feet, changing your gait speed/pattern, changing direction, maneuverability required then I would recommend a microprocessor (MPC) knee. Some prosthetists will give you time to try out different knees. Honestly given your working environment I would have expected the prosthetist to try and set you up with something that had better stumble recovery. The MPC knees include Freedom innovations Plie2, Otto bock C-leg, the Rheo knee, and a few others. Of the 3 I mentioned I can't say that one company makes a better quality product over the other however features are another matter. Personally I would stay away from otto bock because they restrict you to using only their feet. The only reason to do this is for money, after all keeping you from using a foot that might be medically better for you is kinda shady in my opinion. My vote goes to the Plie 2, it is water resistant where the c-leg is not, the plie has batteries that can be swapped out should you lose a charge during the day the other knees do not. The stumble recovery will help build your confidence in the leg as you get used to it and once your a pro at walking again the stumble recovery acts as a safety net as you navigate I.V. lines and dodge rookie EMTs. :)

Good luck

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Hi, I am also a BK so cannot really help with your query but there are lots of AK's on here and I'm sure they will be along soon. In the meantime welcome to the forum, it's very friendly and really helpful.

Sue

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Hi Aknurse,

I am also LAK,

I am not your average amp, struggled for years to get a prosthesis to fit, still searching!

The problem you face of course is that you don't really know what it supposed to feel like, and not even another amp can really explain that to you.

The only thing I would say is that if it hurts, causes blisters or red sore areas, then it shouldn't .

The best components (knees/feet) will be of no use to you if your socket does not fit and you are not weight bearing in the right place. However, your demanding job does in itself mean that you may benefit from a prosthesis that will enable you to carry out you duties safely, both for you and your patients. When you were fitted did your prosthetist know of your intentions of returning to work? Is this prosthesis just a first one, to enable you to learn to walk? Perhaps you need to do some research and talk to your prosthetist.

Perhaps being a knee disartic means that there is a restriction on which knees you can have due to the long length of you remaining limb.

I must just finish by saying that you are doing really well in such a short space of time, be kind to yourself, baby steps as they say.

This is a great place to learn about all things amputee, just ask away, no matter how silly you feel your questions are.

There are some really active amps on here, they are probably out hill climbing/snowboarding or something :rolleyes: Sure they will be along soon.

Just remember, everyones experience is different, no two amps are the same.

Best wishes.

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Hello from another AK.

WOW! Three weeks??? You are doing great woman!!!!!! I remember what I was up to 3 weeks after getting my leg. Actually, after over a year of very extensive walking I am still not comfortable with just standing but it is getting better. Take your time and get to know your equipment. There are a lot of adjustments like leg length and foot settings, not to mention the knee adjustments, that are all critical to standing comfort. It seems to take a lot of time but the results are worth what energy you put into it.

That said, I also wonder if your socket is right. If it still bothers you that will need to stop. NO PAIN. If your residual leg is healthy there should be no pain. In fact, I feel better with my socket on than with it off. And I am not alone there.

I cannot imagine why a prosthetist would give you a 3R60. I does not seem right for you, your age, lifestyle, career, etc. You should have a C-Leg, Rheo or Plie. I use a C-Leg but I do not use an Otto Bock foot. Technically, that foot voids the warranty but only if I told them I was using it. I hike, ride a bike, climb hills, broken ground no problem. The resistance the knee gives has saved my butt many, many times. I have never had a problem with the leg. None of these knees are waterproof. One of them may be water resistant, but none of them can go in the water.

Could you describe the socket pain, socket type (Suction, MAS, Vacuum, etc.) for us. As well as why the prosthetist gave you that knee. There is a lot of experience on this site. People who would like to help you be well.

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I agree with everything Lynne says. Also I'd say don't listen too much to people telling you what you should be wearing, or what you should demand from your Prosthetist, remember, he/she is the professional and should be in the best position to advise you. I'm not saying don't ask about people's experience of their limbs, but what you are prescribed is not something that can be decided on a forum.

You are an individual and the best legs can't make up for a poor socket.

You need the fit sorted so that you're comforatable and there's no reason why a 3r60 won't be good enough for that.

Good luck, and don't expect too much too soon, it'll happen soon enough.

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Hi,

Welcome to the forum. There are great people here who are more than willing to help. For only having had your prosthesis for a couple of weeks you are doing great--I think I fell 8-10 times the first couple weeks I had mine. I am a BK amp and walking on a prosthetic knee is another story. Patience was the big word for me. I had been in a wheelchair for three years and once the ankle was off I wanted to go, NOW. As someone else said the first year is tough. I could not even stand on my leg for more than 10 minutes for a long time. I know it is easy to say patience, but living it is something else. I am now three years post amputation and my life is finally getting back to my new normal and I am happy with it.

Blessings, Beth Marie

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HI,

I am a RAK after a recurrence of cancer left me no choice but to amputate. I agree with everyone!! 3 weeks with prosthetic and doing well so it sounds...I can't believe you said your socket fits well. My amp was 1 1/2 years ago and I still dont feel right in my socket--UGH!!! I am hoping some day soon I will because like you said it is very frustrating to want to get back to what you need to do--but seem to not be able to because of pain and discomfort....I also don't understand why you were given that knee...Do they plan to "upgrade" (for lack of better word) to a micro processor. I am sorry that you have had falls that probably doesn't help with the mental stability of knowing that you will be ok when you take a step. I have the rheo knee and still don't trust it as much as I should..which is bad because with this knee I am usually at fault for a trip because of the lack of trust. :) oh well still learning! hahaha

Anyway welcome to the club...By the way I have a 1 1/2 year old so I KNOW about needing to do the mom thing as well!! :)

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Welcome....I found this site a year ago. It's a great place to come when you have questions or just need some encouragement. I am a partial foot amputee, and may be facing a below knee amp.

Mary

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Hello everyone,

Thank you all for the wonderful responces. Let me start by clarifing some things. When i first got realesed from surgeon five weeks after surgery to be fitted i was still i think in a little shock. My husband researched for knees and such all the time, he would beg me to look with him, it physically made me sick. even though i sat there infront of computer it was all hazy and i really didn't even comprohend what i was looking at. At the first appt to see prost. company we inquired about micro knee units, I was told that he thought the complicated system might be to much for my lifestyle and since i was young , healthy he would put me in a polycentric, and i would do fine, i told him i needed a leg that would get me back to my job and keep up with my three yr old. I even looked him right in eye and said"I need you to make me a leg that will let me be me again and as fast as possiable,and i expected to have the best one for ME even if i have to pay out of pocket.""This is my life on the line and i cant afford to make a mistake." he assured me i would do fine. Now that i am out of shock i have found that i should have went with one or like cleg. but at this point leg has already been billed to insurance and no other choice but stuck with it. I do not feel safe with knee. has not stability or stumble control. It is my fault for not knowing this before, but frustrating the same. The socket was really nice, it felt like a glove after tweeking with back and groin. I did not hit bottom, no redness after wearing it all day. It is a hard socket, and i wear i alpha liner, since my limb is long i do not have room for pin andlock. so for now i have a clamp and lock system, the clamp is on outside of socket, and the plastic thread is glued on liner, i aligne and it comes through to clamp and locks in. not great system but works, we plan on suction fit in a yr. I was told the socket would change in yr,but the knee down is mine from now on. So far insurance has only aproved one prost. leg, don't even know if they will pay for another even ten yrs down road. who knows. I do not have pain in socket. i just can't seem to feel that i am aligned right, or something. I can not put weight all on left side, i think i am but thearpist says not. When they align me to what they say, i feel wrong.I walk on crutches with it. When i had the loaner knee when my knee leaked it was the older model of the 3r60. i felt better, i steped up four inch steps without holding on to anything with the prost.side first. now come on there was a diffrence. i felt safe, i walked in with it and walked out with the new 3r60 and it buckled as soon as i put it on. I told him, he said he ajusted knee but really it still buclkles to easy.When i stand up straight and tall and put weight to that side,it seems to buckle. I just believe somthing is not right. I have to stand before i walk right. i don't want to learn a wrong gait. If i do this i want to do it right. Has anyone remember having this problem in the beginning,or am i just freaking out to soon. i don't know if i am causing this promblem or the leg not allowing me to . sorry so long and again thank you i love this site for your amazing courage and knowledge. AKNURSE.

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If the knee is buckeling right away then it sounds like it needs to be adjusted. Maybe its time to get a little rough with the prosthetist and tell him you are not comfortable and he needs to do something to fix it!!! HAve him adjust it just to see if it makes an immediate difference if not then you know it is not the knee. I have a hard time putting all my weight on my prosthesis and I have a Rheo knee. For me it is a mental thing and more of a socket issue--the knee is pretty stable when I do it right hahah. Anyway my first 9 months or so after surgery I worked with a prosthetist--and after MANY frustrating meetings with him I decided to ask question from a different company--I ended up changing prosthetist and AM SO GLAD THAT I DID. But now I look back and feel as though those 9 months were such a waste! If you don't feel as though you are getting the attention that you deserve then maybe it is time to look for another!! I wish I would have known better at the beginning! UGH...Anyway good luck to you

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hey aknurse i just messaged you before reading this so i now know alittle more about whats going on. plus for those that dont know it might help them out

the buckling that your describing is normal and its designed to do that. its actually called knee flex, it designed that way to give a natural bend like a real knee would do. plus it helps reduce strain on your hip.

from my understanding this is your first leg and if so, alot could be just having to learn to walk again and fully trusting your leg. which is not a easy thing. ill get some info together for you. and ill send you a vid clip of me walking with 3r60 and try and show you what it does so that it helps you see that its really not you. i had to have some one do that for me before i fully became comfortable with the 3r60.

also most insurance allows for a new leg about every 5 years

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Hi,

I am also a AK but on the right. Mine was done in July 08 and trying again now to find a decent prosthesis as I have weakness in my remaining leg. Any questions I can help you with please ask. Jill

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Hi there! Welcome to the forum and I think you have a great attitude. :) Husbands are wonderful, sounds like you have a keeper just like mine. hehe Looking forward to your posts and progress.

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Hello,

Just a little update. I have not been able to wear leg now for two weeks,due to a red area that came up on the outside end of my insicion. i had been wearing my leg for approx. 8hrs a day with no issues. felt so lucky,,then one day i wore it for two hrs then i had a red spot. what irony.i removed the leg, left it off for days thinking that would help, it didn;t it got worse. being the nurse(you know we have to self medicate ha) and knowing exactly what the dr. would do, i started antiobiotics and put drawing salve on it. it busted. i of course cancelled all thearpy and saw my prostetic dr. he padded the socket thinking that would help, he also finally adjusted the unit backwards and outward for more stablization. the few minutes i wore it , it felt so much more stable, my WONDERFUL mothern law (who carts me everywhere)said she could tell a big difference in my stance and gait.I being scared to death of the red spot still, i immediatly removed my leg. now it being a week and 1/2 after i still cannot put leg on, it rubbs that spot. it tried yesterday. At this point i am gonna see my prostetic dr. thursday, but i really don't know if we can fix this problem because my leg is not healed. i can not take any chances, as i am also borderline diabetic.i would love to give the new adjustments a try i really think i could do alot better, and patience it not one of my strong points ha ha .

Another question is my prostetic dr. listed me as a knee dist. but really how do ya tell, i know i really need to talk to my surgeon, but is there a way to tell? My husband said he thought the surgeon told him he cut right above knee to save as much he could and a long muscle flap, so i would have better control. My husband being so distrot might have misundertood. And yes i have a very long limb, we could not fist pin system due to it making knee system stick out bad, i am in a cable lock to liner now and my prostetic knee still sticks out further about a inch.. that don't bother me though.. least i have the privalage of getting a prostetic.. some don't here in U.S.

And to the females out there.,,, my weight flucuates constantly. When i was in hospital i lost approx. 50lbs in three weeks. i wasted away. so when i started fitting, i had gained muscle back and little fat, but now i have gained more weight back. i fluctuate daily i think, one day i can get in socket fine, and the next i have to work and work at it , it actually is tight at top and to big at bottom, so my naturalleg is able to move around at bottom and i think thats how i got this red area, my muscle and skin roll upward when flexing muscle to stand,walk, etc. but the top of my leg will be draping over a inch , and hurts like the ya know what. any advise for this problem?Well besides losing weight. i cannot get a new socket made till i am up to twenty sock ply, and i probaly could use them for the bottom but when i put them on i would never get in the leg at top, i cant with just liner... Help..please. And finally i must say I thank each and every one of you for your ideas,advise., i am honored to be apart of this wonderfull world called amputee. I believe if you fall for nothing , how will you know what your standing for.Again thank you so much.. AKNURSE

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Well, as a larger-size woman who has struggled with weight fluctuations, I'm afraid that one of your priorities will have to be to try and stabilize your weight at "something you can maintain." It can be thin, heavy, or anywhere in the middle, but keeping a reasonably consistent weight will make socket fitting much, much easier. You're already having to deal with some degree of muscle atrophy, so the fewer other variations in your anatomy, the better.

Some of us find that even our salt intake can trigger enough water retention to cause fitting problems. I know that I can only treat myself to Chinese food once or twice a month because of the "salt issue." Ditto for any other traditionally salty foods.

The fact that you say your socket is tight on top and loose on the bottom makes it sound like you might be able to benefit from "half-length" stump sox...try cutting a sock or two off to the length of the loose area of your socket...put those on, along with whatever you're wearing in full-length sox, and see how it makes things feel. I actually have sox at three different lengths: 1/3 height, 1/2 height, and full length. I can generally make some combination of these work for whatever my stump may be doing at a particular time.

As for the red spot...as a nurse, do you have access to either a wound-care nursing specialist or a supply of good wound-care supplies? It might be possible for you to dress the red spot so that it would be able to heal and still allow you to wear the prosthesis at least some of the time. I've only had a couple of injuries on my own stump over the years, but my wound-care nurse was able to come up with an assortment of antibiotic creams and antimicrobial and protective dressings that let me continue wearing my leg full-time while the wound healed. And I'm diabetic, so that's pretty impressive.

I'm a standard BKA, so I'm not an experton KDs or AKs...so come on folks and get aknurse some first-hand advice!

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Just wanted to say hello from another female AK - I am RAK. I've been an amputee for 27 years - since age 26 - a long time to figure all of this out. At this stage of the game being an amputee is pretty much of a non-factor for me. I'm happy, successful, active and do pretty much whatever I want. I will add what others have said - you are very, very early in this process. You will probably experience a lot of ups and downs and frustrations over time but carry on and aim high. In retrospect what has been helpful to me is setting goals for myself related to what I want to do and being absolutely persistent in achieving those goals. Early on my goal was to avoid being in a wheelchair - not saying it's not okay to use a wheelchair but it was my goal not to. Then I had a goal of being able to walk "well" without any aids like canes, etc. - not necessarily very far but just around as needed to do my day to day activities with as good a gait as possible. Then I had a goal to take a job that required 75% travel around the country. Later I had a goal to be able to walk for exercise - 30-40 minutes without stopping. Recently I've taken up tennis again. You get the idea. There are two things I've found very important - a persistent, can-do attitude and an excellent prosthetist/prosthesis. Best of luck - be happy to help with any tips I can based on my experience.

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Cherylm, are you having any trouble keeping your sugar stable? Most of the time do you leave carbs alone. For instance what do you eat @ night for a snack, etc. Are your numbers high in the morning.... :smile:

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Ann, I'm generally under very good control...morning sugars around 80, floating between 90-150 the rest of the day. (I say "generally," because I'm still trying to work out a new eating schedule since I've retired, moved and am not on a strict work schedule...I'm swinging all over the place right now: sometimes down as low as 40 (very scary), sometimes up to 200 (scary for a different reason), mostly somewhere "in the middle.")

I've been at this diabetes thing for 25 years, so I learned the old-style "diabetic exchanges" method of meal planning. I still tend to rely on that, rather than specifically counting carbs (although the "exchanges" kind of achieve that by default. Nighttime "snack" is usually something like a small glass of milk and a couple of graham crackers, or some low-fat, sugar-free yogurt. (I'm of Scandinavian descent, and "dairy" is real important to us, so I do what I need to in order to "work it in.") :smile:

In my five-plus years as an amp, I've only had three sores on my stump...only one of them was fairly serious, and I was still able to wear my leg most of the day while it was healing...so I consider myself very lucky, and very fortunate to have such a good wound-care team!

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Hi AKNurse,

I have been a LAK since 1979 as the result of a left iliofemoral vein thrombosis. As I read your story it sounded so similar to my own. I believed that with all the advances in medicine in the last 30 years thrombosis would not remain a cause of amputation. Obviously, my assumption was wrong. You must be on anticoagulants as I still am. My amputation began as a knee disarticulation that morphed into an AK due to osteomyelitis. It was more than a year before I had a definitive prosthesis.

That you have problems with the socket fit is not uncommon. Do you have a stump shrinker? It will help keep the stump from swelling at night. I used a hydraulic Mauch knee for 28 years and then got a microprocessor knee in November 2008. Many AKs use other knees and walk fine. Some here prefer them to the C-Leg.

If the socket was comfortable at first but is no longer a few things could cause this. Fluctuation in weight can cause fitting problems. Also, calcium growths on the femur can change the shape of the stump and cause rubbing, pain, and skin breakdown. I have had some calcium growths removed twice.

I wore a hard total contact suction socket for many years and it hurt. Then I got a flexible socket inside a hard frame. It was heaven compared to the old socket. Today my prosthesis looks similar to the one in the link.

http://www.tuvie.com/c-leg-leg-prosthesis-from-otto-bock/

I hope things get better for you. You will be walking well soon!

Freddy

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Hi AKNurse,

I have been a LAK since 1979 as the result of a left iliofemoral vein thrombosis. As I read your story it sounded so similar to my own. I believed that with all the advances in medicine in the last 30 years thrombosis would not remain a cause of amputation. Obviously, my assumption was wrong. You must be on anticoagulants as I still am. My amputation began as a knee disarticulation that morphed into an AK due to osteomyelitis. It was more than a year before I had a definitive prosthesis.

That you have problems with the socket fit is not uncommon. Do you have a stump shrinker? It will help keep the stump from swelling at night. I used a hydraulic Mauch knee for 28 years and then got a microprocessor knee in November 2008. Many AKs use other knees and walk fine. Some here prefer them to the C-Leg.

If the socket was comfortable at first but is no longer a few things could cause this. Fluctuation in weight can cause fitting problems. Also, calcium growths on the femur can change the shape of the stump and cause rubbing, pain, and skin breakdown. I have had some calcium growths removed twice.

I wore a hard total contact suction socket for many years and it hurt. Then I got a flexible socket inside a hard frame. It was heaven compared to the old socket. Today my prosthesis looks similar to the one in the link.

http://www.tuvie.com/c-leg-leg-prosthesis-from-otto-bock/

I hope things get better for you. You will be walking well soon!

Freddy

Freddy, Yes you would think the medical world would have advanced on thrombosis, and in someways they have, i think i was just to late, i set up compartment syndrome,which doubled to make less blood flow, then the damage was already done, and gangrene set in... Yes im on warfafin 7.5mg daily, and they think that will be for the rest of my life, they think i may have some unknown heritary blood disorders..ugh.i do have a shrinker and i wear it when ever my leg is off, im religious to it.I love the idea of this socket in the link,,, how is your socket attachment set up(suction, pin lock,etc).. i believe in about ten months from now , we are gonna try to make my definate socket and he said he would like to try suction, i have a very long stump so the mechanics does not fit good under, so i could not go with pin system, so i am worried about the change, i have one chance every five yrs with insurance to do it. he might also switch me to cleg or somthing like it then,if insurance allows. i also notice you swim, do you know of any inexpensive shower legs for aka? i am tired of that dang shower chair.... Thank you for info..greatly appreciated

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Freddy, Yes you would think the medical world would have advanced on thrombosis, and in someways they have, i think i was just to late, i set up compartment syndrome,which doubled to make less blood flow, then the damage was already done, and gangrene set in... Yes im on warfafin 7.5mg daily, and they think that will be for the rest of my life, they think i may have some unknown heritary blood disorders..ugh.i do have a shrinker and i wear it when ever my leg is off, im religious to it.I love the idea of this socket in the link,,, how is your socket attachment set up(suction, pin lock,etc).. i believe in about ten months from now , we are gonna try to make my definate socket and he said he would like to try suction, i have a very long stump so the mechanics does not fit good under, so i could not go with pin system, so i am worried about the change, i have one chance every five yrs with insurance to do it. he might also switch me to cleg or somthing like it then,if insurance allows. i also notice you swim, do you know of any inexpensive shower legs for aka? i am tired of that dang shower chair.... Thank you for info..greatly appreciated

AKNurse,

Our stories are so similar it is scary. Glad to hear that you use a shrinker. My stump is long about 3.5 inches off the femur. Ask other AKs here who have worn both types of sockets. I cannot tell if the one in the link is a suction socket, but I have always used a suction socket. I use a shower chair at home but at the gym I use the shower stall for the disabled that has bars to hold on to.

My brother and sister both had clots. They both tested positive for a clotting gene. I tested negative.

I hope you leg works out for you!

Freddy

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