Anyone know a supersized amputee?

[Purple Tights]

Hi folks,

I'll do a brief introduction and then get down to my concerns. I was in a bad car accident last spring (07) and broke both my legs, plus my right ankle and foot. I'm a well-controlled diabetic. I've had three surgeries on my left leg and four on my right. I'm going to have one more surgery on my right foot next month, and perhaps on the left one too at the same time. The surgeon is doing everything he can to save my legs, but he's mentioned several times that I might have to have either or both of my legs amputated, and if there's an amputation, I will never walk again.

Talk about depressing news I'm trying not to focus on it too much, but rather envision myself walking without help in the future. But I do have to prepare myself for this situation if I can.

I'd like to ask you if you know any supersized lower-body amputees who might talk with or email me about what their lives are like now and how they do the day-to-day activities necessary to life.

I thank you greatly for reading this and offering suggestions.

[Risible]

I can't offer any help, but I just wanted to say that you have my sympathy. Life can be tough enough being supersized. And, welcome to Dims, though I wish your first post could have been in happier circumstances!

[Miss Vickie]

Purple tights, I'm so sorry to hear about your health problems. I don't have any suggestions either, but I wanted you to know that I read your post. It seems like you're doing everything you can to be healthy, and your attitude is a good one. Think positively but be prepared, just in case.

Best of luck with this, and I hope the doctors can save your legs.

[moore2me]

Originally Posted by Purple Tights

Hi folks,

I'll do a brief introduction and then get down to my concerns. I was in a bad car accident last spring (07) and broke both my legs, plus my right ankle and foot. I'm a well-controlled diabetic. I've had three surgeries on my left leg and four on my right. I'm going to have one more surgery on my right foot next month, and perhaps on the left one too at the same time. The surgeon is doing everything he can to save my legs, but he's mentioned several times that I might have to have either or both of my legs amputated, and if there's an amputation, I will never walk again.

Talk about depressing news I'm trying not to focus on it too much, but rather envision myself walking without help in the future. But I do have to prepare myself for this situation if I can.

I'd like to ask you if you know any supersized lower-body amputees who might talk with or email me about what their lives are like now and how they do the day-to-day activities necessary to life.

I thank you greatly for reading this and offering suggestions.

Hi PurpleTights,

If you don't mind my asking - why does the doctor think you'll never walk again?

The reason I'm asking is I went from two years in a wheelchair to walking with a walker, then two canes, then one canes, by sheer work and two years of physical therapy, weight loss, and aqua-therapy. I would think it would also be possible for someone who has lost their legs (or leg) to do this too. At our pool, we had several people who have lost their legs and where doing aqua-aerobics and physical therapy. Some had lost their legs due to disease, some due to accidents, and some due to the war in Iraq. Some of them that lost a foot or leg due to disease actually felt better once the foot or leg was removed - it had bothered them so much while the limb was on & diseased.

Our pool had a "dip chair" for getting in and out. No one had to worry about drowning either. You could have a personal attendant if you need one - or a floatie - or hold on to the edge of the pool in 3 ft water. It was not an issue. You could also have an attendant help you in & out of the water & get dressed (a woman of course). You could even get someone to bring you to the pool. My physical therapy even allowed the hospital van to come to my home and pick me up in my wheelchair three times a week and bring me home.

Some of these folks had neat prosthetic legs - really improved over the years. Several different styles.

[Risible]

Originally Posted by moore2me

Hi PurpleTights,

If you don't mind my asking - why does the doctor think you'll never walk again?

The reason I'm asking is I went from two years in a wheelchair to walking with a walker, then two canes, then one canes, by sheer work and two years of physical therapy, weight loss, and aqua-therapy. I would think it would also be possible for someone who has lost their legs (or leg) to do this too. At our pool, we had several people who have lost their legs and where doing

You're a trooper, M2M! Thanks for sharing your inspirational story!

[moore2me]

Originally Posted by Risible

You're a trooper, M2M! Thanks for sharing your inspirational story!

Ris,

Thanks for the "trooper" comment. I do like to think of myself as a storm trooper who has been dropped behind enemy lines one time too many. (Last time they didn't let me have a parachute.) I have been through a lot, but so far have come out a little scarred, and lost a little fur, mumble a little too much, drool sometimes, but who doesn't?

Back to PurpleTights - I think that if a doctor told me I would never walk again, it would not sit well with me. I would probably go Christopher Reeve on the doc. I be bound and determined to show the doc I can do the opposite.

I had a doctor one time look at me after I had tried his new diet for a period of three months (diet didn't word) and say "You're a failure!" This was a horrible thing for a healer to say to his patient. It made me feel bad for a long time. Now I realize that doctors are not infallible. They make mistakes and need us (me) to set them straight at times. I intend to do this when I feel it is necessary - and when a doctor takes hope away from his patient - I don't think that's right. Sure we're fat - but we can do things that would surprise these skinny, young, snarky, (but necessary) doctors.

[Risible]

Originally Posted by moore2me

Ris,

Thanks for the "trooper" comment. I do like to think of myself as a storm trooper who has been dropped behind enemy lines one time too many. (Last time they didn't let me have a parachute.) I have been through a lot, but so far have come out a little scarred, and lost a little fur, mumble a little too much, drool sometimes, but who doesn't?

Back to PurpleTights - I think that if a doctor told me I would never walk again, it would not sit well with me. I would probably go Christopher Reeve on the doc. I be bound and determined to show the doc I can do the opposite.

I had a doctor one time look at me after I had tried his new diet for a period of three months (diet didn't word) and say "You're a failure!" This was a horrible thing for a healer to say to his patient. It made me feel bad for a long time. Now I realize that doctors are not infallible. They make mistakes and need us (me) to set them straight at times. I intend to do this when I feel it is necessary - and when a doctor takes hope away from his patient - I don't think that's right. Sure we're fat - but we can do things that would surprise these skinny, young, snarky, (but necessary) doctors.

I agree, Trooper M2M, get a second opinion! When I was 27 or so, about 275 pounds and in good physical shape, a doctor I went to for birth control said my BP was through the roof (it wasn't, it was within normal limits), and that I needed to lose weight immediately. By some weird coincidence, he was a WL surgeon; I had been referred to him by a friend of a friend, who'd had WL surgery by him. I learned through that experience and others that doctors have agendas and, as you said, are not infallible.

[mossystate]

Hi Purple Tights...another PNW person here...Seattle

Just so sorry about all you are going through.

I am also pretty curious as to why your doc would say such a thing, being so final about you not walking, if they have to amputate. I am not a medical person, but, what were his reasons..?

A billion years ago, one of my sisters had a leg amputated ( cancer..she was a little kid ). Now, she has never been able to tolerate any prosthetics, but, this might have to do with how the leg had to be removed..? Is the doctor saying he might not be able to save enough of your legs for proper stumps..?..and...how would he be able to know, with certainty, at this point.

A second opinion is always a sound idea, especially if it looks like that that beyond difficult decision has to be made.

Good luck, PT..keep posting here, if you need/want to!

[Purple Tights]

Hey everybody,

Thanks for your replies. As far as I remember, the surgeon said that I wouldn't walk again if I had an amputation because in the time it would take to make a prosthetic, the remaining leg would deteriorate to the point that it wouldn't accept a prosthetic.

I will CERTAINLY ask him more specifics about that when I talk to him next. I know all about doctors with attitudes and their needing to learn what a fat person can accomplish. But I don't get a fat-phobic vibe from him. He told my husband and me that nothing regarding my health - not my weight, not being a diabetic, not my level of exercise (I was going to the pool four days a week and during good weather, riding my adult tricycle on alternate days) - none of that made a difference in my condition now. It all had to do with how the bones broke in the accident.

But you're right. I shouldn't just accept his blanket statement of never walking again. I was just too shocked when I heard it to press him for more information.

I hope to talk to him tomorrow and I'll bring up the subject. It's not one I really want to deal with unless it becomes a certainty, but I do have to have this information.

Chow for now.

[moore2me]

Originally Posted by Purple Tights

Hey everybody,

Thanks for your replies. As far as I remember, the surgeon said that I wouldn't walk again if I had an amputation because in the time it would take to make a prosthetic, the remaining leg would deteriorate to the point that it wouldn't accept a prosthetic.

I will CERTAINLY ask him more specifics about that when I talk to him next. I know all about doctors with attitudes and their needing to learn what a fat person can accomplish. But I don't get a fat-phobic vibe from him. He told my husband and me that nothing regarding my health - not my weight, not being a diabetic, not my level of exercise (I was going to the pool four days a week and during good weather, riding my adult tricycle on alternate days) - none of that made a difference in my condition now. It all had to do with how the bones broke in the accident.

But you're right. I shouldn't just accept his blanket statement of never walking again. I was just too shocked when I heard it to press him for more information.

I hope to talk to him tomorrow and I'll bring up the subject. It's not one I really want to deal with unless it becomes a certainty, but I do have to have this information.

Chow for now.

Purple tights,

It's great that your active. Try to hold onto that lifestyle regardless of the turn with your legs.

If there is one good thing that has come out of the War in Iraq, it's medical treatment of amputees. The pool I use is also used by wounded soliders recovering from injuries. We live near a large AFB. Vietnam & Korean vets go there too. The medical community has learned much about helping these guys get back on their feet (or giving them new feet/hands.)

Now, I know these Iraq vets have an "up" on most of us because they are excellent physical specimens. Still, their injuries have forced the medical community to learn new skills in replacing legs, feet, etc. And rehab for the wounded - and some of these guys (girls) are wounded mentally as well as physically.

I would do computer searchs within the medical community for limb replacement. If you have a medical college library - they can tell you how. You can do this over the phone or online. I will see what I can find out on this end. Good luck. Never give up.

Moore2me

[moore2me]

Purple tights,

I hope I'm not overwhelming you with information here. But, I went online to Medline and looked up a few resources from the medical library I was talking about. I am pasting them into the body of this post. Too much?

http://www.emedicine.com/orthoped/topic9.htm (Quoted selected text below)

The higher the level of lower limb amputation, the greater the energy expenditure required for walking. As the level of amputation moves proximally, the walking speed of the individual decreases, and the oxygen consumption increases. For most people who have undergone transtibial amputations, the energy cost for walking is not much greater than that required for persons who have not undergone amputations. For those who have undergone transfemoral amputations, the energy required is 50-65% greater than that required for those who have not undergone amputations. Additionally, those with PVD (peripheral vascular disease) who have undergone transfemoral amputations may have cardiopulmonary or systemic disease and require maximal energy for walking, making independence difficult to maintain.

For the patient to effectively transfer weight from the residual limb to the prosthesis, an intact soft tissue envelope is required, as described above. Load transfer is accomplished through direct means, indirect means, or both. Direct weight transfer implies that the residual limb is capable of end weight bearing within a prosthesis. End weight bearing is easily accomplished through disarticulations at the ankle and knee levels. The proximal articulation of the joint is maintained, functions normally, and is broad enough to distribute the end-bearing forces.

Although joint amputations maintain length and muscle attachments, patients often have a difficult time with prosthetic fitting. The issues after knee disarticulations include that the more distal center of rotation of the knee makes sitting in cars and closed areas difficult. The knee protrudes further than the contralateral knee, and the lower leg is much shorter. For ankle disarticulations, patients report that the prostheses are too bulky.

Indirect weight transfer implies distributing load to a more proximal bony area and incorporating a total contact interface with the soft tissues of the extremity. In the past, with transdiaphyseal amputations, an indirect weight transfer prosthesis has been used because of the small bone diameter, which is believed to be ineffective in applied load distribution. However, end weight bearing can be accomplished in osteomyoplastic reconstructions in conjunction with a total contact prosthesis. This reconstruction provides a more durable, pain free, active, and functional residual extremity. This operative procedure is described in Surgical therapy.

Great advances have been made in the treatment of severe lower-extremity trauma and PVD. Revascularization, internal fixation of fractures, microvascular techniques, and free tissue transfer procedures have improved and favorably enhanced the patient's outcome. Failure of these techniques when extensive efforts have been pursued may result in a negative patient outlook. Amputation may be viewed as a failure by both the surgeon and the patient. The patient may picture himself or herself as incomplete by societal standards. The current view is that amputation surgery is a reconstructive procedure to return a patient to an active life.

Compared to the changes that have taken place in prostheses, amputation techniques have changed little over the years. In spite of a well-performed amputation and a well-fitted prosthesis, some patients have persistent symptoms of residual extremity pain, swelling, and sense of instability and decreased length of prosthetic wear. These patients pose a challenge for the reconstructive surgeon. The effects of previous surgery, altered anatomy, muscle and bone atrophy, and aerobic deconditioning are important variables in predicting the success of amputation surgery.

Prosthetic management is begun 6 weeks after surgery, depending on the condition of the extremity and wound. Some patients are not candidates for prosthetic limb replacement because of poor balance, weakness, or cognitive impairment. To avoid disappointment and expense, a permanent prosthesis should not be ordered for these patients.

Common complications include wound breakdown and skin problems, swelling, edema, joint contractures, pain, and phantom limb sensation.

__________________________________________________ _______________


Here is the general location of the medical library of textbooks & etexts.
http://www.medicalstudent.com/#MEDLINE

Your concerns are the section called “Orthopaedic Surgery”

[Purple Tights]

Hi moore2me and everyone else.

I've been offline because my health suddendly came to an abrupt change on December 18. I had been experiencing more pain than usual in my legs, especially my left leg. I went to the emergency room because my PCP thought I was having a blood clot. Turns out I wasn't - the plate that held the screws in place in my left tibia had bent and broken. A larger plate was put in my leg (now with a new, improved *longer* incision!) and we will have to see how this holds my bone together. Till then, I'm only supposed to walk a little bit (to the bathroom) because bone heals better when you're not tromping around on it.

I did go to the website you mentioned, moore, and thought that if I have to have an amputation, it's most likely that I'll spend the rest of my life having more surgeries and being in and out of hospitals. I can't see being that kind of a burden. I do have the option of talking to a doctor about what life would be like as an amputee should things go that far. I will talk to him, and then I won't think about this horrifying subject unless my doctor tells me that there are no alternatives.

I will spend my time getting better, and imagining myself walking and dancing without any aid or assistance. I have a family home movie of me in purple tights, dancing at age 7 or so. I'm in front of huge glass windows in my home, the beach and dunes showing faintly in the background. I do my little dances, throw myself down on my knees and lean back until I touch the floor and struggle a little to get up. I prance; I leap. I had pure joy of movement then, and I will have true joy again. I can't wait!

I thank you all again. My surgeries were successful to the best of my knowledge and I'm coming back to "normal" much quicker than after any other of the nine leg surgeries I've had (five on my right foot, four on the left leg). I'm doing my exercises in my recliner, and hope to get back in the warm water therapy pool within the next four to six weeks.

I dance in the water.

[moore2me]

That's great news. Never give up - if something in your health changes - just change your goals & keep working. That is your full time job now. Rehab. Dream it, think it, study on it, even obsess on it, keep it positive tho. Sure there will be set backs. My "progress" was usually two steps forward, one back, two steps forward, fall down, get up, one step sideways, one step forward, just keep moving. And dancing in the water is great. Look what it did for Ester Williams.

And when I was in the pool, there were people (men, women, younger people, older people, mentally challenged people that had more severe leg injuries and disabilities than I did). These guys keep plugging along and made me ashamed to quit or complain too much. They inspired me.

Also, keep you ears & mind open to developing technology. It's amazing how fast medical science is progressing in working with leg injuries (due to the war in Iraq and stem cell research).

Good to hear from you again.

[Purple Tights]

Hi folks,

I couldn't get back here to post earlier, but I wanted to catch up with everyone who replied to my questions.

The fabulous news is that I won't need anymore surgery on my legs. They're healing very well (at last) and I've been discharged by my surgeon. That means no more chance of amputation!

I'm still having some pain in my right foot (the one that was crushed) but it's getting better slowly. I can do everything I need to do at home, including walking up several steps, which means I can get back in the therapy pool.
I've been there three times so far (once a week) and it feels good and helps me regain my mobility. I'm still using a walker to hobble around with, but I hope that I'll graduate to a cane and then not needing anything to help me walk.

Thank you all so much for your support and information. Purple tights will dance once again!

[Risible]

This is wonderful news, Purple Tights! Thanks for sharing it with us. I love to hear a success story like yours.

Good luck and good health to you.

[Tina]

I just saw this thread and was about to post to build your upper body strength, just in case, and saw that you're not going to have to have any amputations. I'm so very happy for you!

And welcome to Dimensions, Ms. newbie.

[moore2me]

Congratulations Purpletights, I am glad you are doing well. Dance again first in water. You might have to forgo the purple tights in the pool - they would probably just get water logged anyway. How about a nice purple swimdsuit? You can even put a T shirt over it if you like? (From Junonia at
http://www.junonia.com/detail.htm?si...&ldid=2&sdid=4)

[Theatrmuse/Kara]

Wonderful news, PurpleTights!!!!!!!!!!!!

Keep up the improvement! You have encouraged me to keep going to the pool!!!!!!!!! Hugs, Kara

[Sugar Magnolia]

So happy to hear that you're doing much better, Purple!
Sending good thoughts your way for continued recovery.

[Half Full]

Hi PT!

I certainly hope you don't lose your leg and I certainly agree with everyone who's suggested a second (and even third!) opinion BUT if the worst does occur something doesn't jive here...

Why would your prosthesis take longer than anyone else's? Many people are in your similar situation - wheelchair bound after a traumatic event and needing a prosthesis - they have PHYSICAL THERAPY for the other leg to maintain muscle integrity while waiting for the prosthesis. What your doc said just seems completely ludicrous! Based on that alone, I would seek another opinion!

I wish you comfort and a speedy recovery!

ETA: D'oh!! I should have read the whole thread before posting but WOO HOO for your excellent news! So glad things turned out OK!!

Originally Posted by Purple Tights

Hey everybody,

Thanks for your replies. As far as I remember, the surgeon said that I wouldn't walk again if I had an amputation because in the time it would take to make a prosthetic, the remaining leg would deteriorate to the point that it wouldn't accept a prosthetic.

I will CERTAINLY ask him more specifics about that when I talk to him next. I know all about doctors with attitudes and their needing to learn what a fat person can accomplish. But I don't get a fat-phobic vibe from him. He told my husband and me that nothing regarding my health - not my weight, not being a diabetic, not my level of exercise (I was going to the pool four days a week and during good weather, riding my adult tricycle on alternate days) - none of that made a difference in my condition now. It all had to do with how the bones broke in the accident.

But you're right. I shouldn't just accept his blanket statement of never walking again. I was just too shocked when I heard it to press him for more information.

I hope to talk to him tomorrow and I'll bring up the subject. It's not one I really want to deal with unless it becomes a certainty, but I do have to have this information.

Chow for now.

[rainyday]

Made me very happy tonight to read your update. I'm supersized as well and when I first read your post several months back it really made me wonder what life would be like with that additional complication. I'm so glad you won't have to face that possibility now. Best wishes to you.

[Purple Tights]

Hi everyone,

Here it is, two and a half years after my accident. I've finally gotten rid of my walker and am using only a cane now. At times (when someone is around to help if necessary) I'm walking without a cane for short distances.

It's taken a lot longer than anticipated to regain my mobility but the accident took a big toll on my health. I rejoice that I have been able to keep both legs and feet and that my pain is under control. I go to the pool three days a week and that has made all the difference in the world. I can rise from a low couch without using my arms to push up.

Now I'm looking to purchase a car because I hate not being able to get around on my own. I posted a new thread in the main discussion board about this - please feel free to answer my questions if you can.

I appreciate the support and caring I've seen on this board.

[AnnMarie]

Wonderful news, PT. Good luck with the car, one more step in being mobile!

[toni]

Amazing! Thank you for the update. Keep up the good work.

[Risible]

I'm glad to read this, Tights, thanks for the update. Rep to you for showing such amazing strength in the face of dismal adversity.