Asking for help, but long involves story. I’m sorry in ad

Asking for help, but long involves story. I’m sorry in advance!!!!!
OK, I don’t post here often but do read daily for information and to understand what others are struggling with. I do participate on the obesity, nutrition and weight loss boards as I do struggle with my weight and feel as though I do have insight to add there, but not here. My amputation is fairly new, October 2017. I had an above the knee left leg amputation due to a freak accident causing the blood flow to stop in my lower leg and the doctors were not able to get this fixed. I was told that my femur is in tack. When I had my surgery, a trauma team member did my surgery, not a doctor who is experienced in amputations. Right now, my left residual limb (which hopefully no one gets offended as I will refer to it as stump) looks like a devil’s head. I have 2 HUGE fat pockets on the left and right side which hang down and are getting larger by the week. The middle section is straight across. Now, mind you, after my surgery I went straight into rehab, where my stump looked like a devil’s head. I kept saying, it hurts, it doesn’t look right, it doesn’t feel right. I was told on so many occasions that it “was fluid buildup” and would go down. NOW, I have no problems touching my injured area. I felt these two areas and could feel the fat. Now, those telling me it was fluid buildup NEVER once felt the area. They made assumptions without ever checking. OK, so I come home… keep wrapping my leg and changing the bandages as I was released with a sore on my leg. Prior to coming home, my devil’s head as I so affectionately call it, did not hang below my right knee. NOW, it hurts, very, very painful, and actually the fat pockets have increased in size and now hang about 2 inches below my right knee.

Now, I’ve complained, expressed my displeasure, expressed the discomfort….. all of which fell of deaf ears as I was sent to a company for a prosthetic. Now, This company (who I will not call out) did not do a very good job as far as I am concerned from beginning to end to explain anything at all to me. They gave me a stump shrinker. Called after wearing it for 2 days (now, I admit, I am over weight and on weight watchers as I’ve been told I will function best with a prosthetic as a normal weight). I explained to the young ladies that fitted me for the stump shrinker that it kept rolling down, I spent more time fixing it, putting it back on than I did actually wearing it. At night when I went to bed, I’d wake up probably every 30 minutes to put it back on. GREAT for the healing process. If I used the rest room, the stump shrinker would fall off. According to these young ladies, that’s normal. How in the world is it supposed to work if it’s not staying on?? But hey, they’re the ones with the master’s degrees not me. So, after 2 weeks, I returned to the office for my mold to be made. My stump had not shrunk at all. NOTHING. It was a waste of 2 weeks, my energy and my sleep (which I barely got any)….. I told them this. They proceeded to cast me. NOW, they way I was casted for the prosthetic was the same way someone with a broken arm would be casted. How tight and secure can something be like that…. But, hey, again they have the degree….not me.

So, I’ve gone thru the process of having a prosthetic made. It’s a carbon fiber on the outside and a plastic liner on the inside. My knee was literally 6 inches past where my real knee is. SO, I look and FEEL, more importantly, like a freak wearing this thing. I questioned where the knee was, questioned how bad it hurt my groin area, nothing about this prosthetic was not questioned. NEVER was it explained to me that because I have an above the knee amputation that they use the (can’t think of true term) Butt bone to determine where the prosthetic should be sitting so that the amputee has maximum coverage and strength to help hold you up. My silicone liner, I squished my devil’s head into. Had to use a silicone based fluid on the stump because I have skin folds that were rubbing each other and causing sores. Which meant if a sore broke out, I couldn’t use the prosthetic till it healed. I was also getting mini blisters also. GREAT, all things I questioned and brought up, again fell on deaf ears. I went into inpatient rehab to learn to walk, sit, stand, reach all with the prosthetic. All of this to find out when I got into my vehicle to drive, my prosthetic knee hit the dash board. Couldn’t comfortably get into or out of the car. Couldn’t lift my leg or foot high enough to get into car. All problems. Furthermore, when in rehab, everything I sat on with the prosthetic on was padded, so the padding absorbed the difference between my real leg and my prosthetic. When I got home and sat in my mom’s kitchen chair, found out that the prosthetic had me sitting 5 inches higher on the left side and to compensate, the doctor suggested to put a pillow under my right side. How comfortable is that going to be. Doctor also suggested that I return to work and if not able to sit comfortably, which he already knew I couldn’t, that I take the leg off while at work and put on to drive home. Now, why the Freak am I spending over $17K on a prosthetic that I can’t sit in properly, walk properly and need to remove to work.
I went on Thursday May 4th for a 2nd opinion to Moss Rehab, part of Einstein Medical in Philadelphia, PA. In the 2 hours I spent with this rehab doctor, I learned, that the bone in your butt must have the prosthetic come up to so that you came basically sit on it or it hold you up for stability while walking. He also stated that my silicone liner was too short. It should not be rolling down under my prosthetic. Stated that part of the groin issue was the liner was cut and the plastic was rubbing up against me. Causing issues.

Now, I plan on having reconstructive surgery on my stump to remove the fat pads and couture the stump so that it fits into the silicone liner and leg better. This will allow for the knee to be raised some but not all the way to where they will be side by side. This will aide me in driving, getting in and out of my vehicle, not look or feel like a FREAK when sitting. Walk, stand, and get around better.

What I’m looking for know is other options for the prosthetic. Right now, my femur is in tack. The doctor is hesitant about cutting it as making it smaller also will cause me to lose some stability. For those out there with above the knee amputations, what devices are you using and how do you like them??

group, who has some suggestions here?

I don't have an about...mine is below but after reading your post I'm amazed by your patience.

I would like to extend my stay this to you.
I have for the most part tried to always be as nice as I can and everyone got the benefit of the doubt.
But not anymore.
By the time I finished reading your post I was outraged.
I tip my hat to you.
One thing has become crystal clear to me and I have been an amputee for less than a week.
Now more than ever people are and always have mistaken kindness for weakness.
So It's quite obvious people will be more than ready to do so to someone whom they think is weaker for having less limbs than they.
I hope you get everything squared away to suit you and that you'll be as comfortable as possible.
Blessed Be.

@SmoothFlow thank you so much for your kind words. I too have always tried to be kind to people. Now I feel jaded by this freak accident.

I’m so sorry about your amputation. Reach out if you’d care to chat sometime.