I go to the blog page to start reading people's blogs and the first five pages are of some kind of hijacking crap it seems? How far do I need to go before I get to the real posts? I see in another area that legit posts are being made, but I'm not seeing them so far. Anyone have any idea what's up with that?
Sorry for the abscense
So sorry I've been gone for quite a bit from the site. I will try to catch up here in the next few days. Just been jumping through hoops and medical testing to gear up for surgery on the other leg (the remaining leg) and to see if anything at all can be done to save my arm.
Im having pains with the new x5 liner although it does give a tight suction and keeps the leg on finally. After about 30 minutes of having the leg on it feels as if its swelling, but also the phantom parts of my leg are also having those pains and feeling as it is swelling and going to rupture. After about 30 minutes I have to pop it off. BUT...its not really swelling, because when I take the leg off and put it right back on...it goes on as slick as butter. It wouldn't do that if it were truly swelling. I haven't worked with it much in the past few weeks, because I know I can't tolerate standing on the remaining leg hardly at all. Testing has confirmed there are blockages in the arteries in my right leg. How severe it is I can only guess by the pain level until I see the new surgeon this week. My former surgeon retired. The new one is a single surgeon without an entire team backing him up. Which can make things go much slower to fit all his patients and their needs in. So June 15th I will see him to hear his plan of treatment. Then after he attempts to fix my leg and I recover...there should be no stopping me then. Then only remaining issue will be to figure out what's going on with this liner. I can wear the liner all day long and it not bother me until I put the leg on. So if anyone has any valuable input I would greatly appreciate it. My CP has a habbit of saying well you have all these other issues, so we don't really know. I asked the new surgeon and he said there is no reason he can think of that the stump would be causing this problem. I'm also going to see my family doctor so she gives it a clean bill of health too, so I can say no we've ruled out any possibility its anything with the stump at all. So lets figure this liner out. The only other thing I can think of is that possibly its too small and in need of a bigger liner. Is that possible? Surgeon said all my problems now are in the remaining leg of blockages. Hopefully there is a graft they can replace to open up flow again. It's not the same condition as caused my loss of the left leg. The left leg had MRSA inside a popiletal graft they put in to open flow in that leg. After 11 mos of the infected device being inside of my leg just caused it to colonize and become so disease and created numerous blood clots it couldn't be saved if I wanted to live.
I hope everyone else is doing well with their devices and limbs. But for me get the right leg fixed and this liner issue straightened out then there should be no reason I can't begin PT and learn to walk. Finally!!! I'm now at 28 months since loosing the left leg above the knee. Way too long for me. I never dreamed it would take this long to get me out of this chair. But the blockages in the right one won't let me do more than a couple of steps on crutches before the pain becomes too intense to continue. By that time tears are flowing from pure pain.
Suction
Spent several hours in my prosthesis Friday with the new socket/liner. On around 9 am and by 2 pm it began falling off. I fused with it and after finally getting home I took it off and completely put the entire thing back on again and it fell off 5 different times. I figured it was a good time to put it in the corner for the remainer of the day. Had the grandson with me today, so I didn't even fight with it. Maybe again tomorrow. It looks to me if it was going to stay on that long that it would stay on until I decided to take it off and not when it was done messing with me. I guess I have no choice but to try the x 5 liner and if that doesn't help I just don't know what else to do with it.
Still Loosing Suction
Since having my new suction socket a week or two. I have noticed a couple of things that have helped me keep suction with the liner and socket. BUT each and every day I loose suction at some point and IDK why that is. Obviously if I knew why I wouldn't do it and I want out of this wheelchair so any advice is well appreciated. It is getting somewhat better. This Saturday I started out walking on it quite a bit when putting it on to build up a tighter so called suction if that makes sense. A few days earlier I put it on and then sat at the vanity to prepare for the day applying make up and such. I noticed a few puffs of air as it was loosing its suction before it falls off into the floor...not even having it on 30 mins total. Saturday my daughter had an archery tournament so I allow extra time to walk putting it on and spraying the inner socket to help create a suction. That did help. I prepared for our day and drove 45 minutes to her tournament did a good amount of walking on crutches to the seating area from my car. Sat through the competition and then walked to my car. I drove another 15 minutes to the cemetery where my father and grandparents are burried, but when I arrived there I couldn't walk there due to the condition of the lawns...so I stood by my car and my husband visited the burial spots. I returned to my car and drove another 20 minutes to my older daughters home...I got out of the car and the leg is falling off. Does that make any sense at all? I've tried talking to my prosthethis about this to try to figure it out so I could make it stop and I could get better and more consistent use of this socket system. Consistency is going to be key to learning to walk and being able to depend on its abilities. Keep in mind that the shuttle socket NEVER fit well and I could never advance in any fashion with it. Having it for a full year before fighting insurance to get a new socket. I can't keep getting things that don't fit or don't work as I need them to and expect progress. Yes I know that sounds a bit frustrating and I promise when I tried to speak with my prosthethis I did not do it with this type of tone. She told me that she thinks that I am obcessing with it and I should just give it time. I've also heard statements like well they aren't going to fit right away...it takes time. Really???? On February 26th was the 2 yr mark on my surgical amputation. Just after my surgery I did develope 5 different bacterial infections in my incisions that each took a different antibiotic and time to heal...I got past that and a good deal of shrinking and stabilizing and it wasn't until November that I got a prescription from my surgeon to get the prosthetic leg. I had it a month later, but for an entire year it didn't fit and didn't work for my needs, strengths, and abilities. So how much is a normal usual amount of time to allow for things to fit and work properly. While doing the test sockets she was running into a time crunch to get the socket within the time frame insurance approved the payment for the socket for...apparently they have so many days to produce the said socket. She drove to me on the very last day to get me a socket before insurance would require new authorization for the same socket. I'm wondering if she rushed the fitting using a test socket that wasn't quite right hoping to make it work. I don't know but I am a bit frustrated with the responses. I'm obcessing...and its not going to fit right away...I've shrunk a considerable amount and have a large amount of flabby flesh to show for it...doesn't seem there is much left to shrink. So I'm not changing since she's done these test sockets or gave me the finished socket. I was a little apprehensive to accept the socket with the "it takes time to fit or it won't fit right away"...why not...when I buy a pair of shoes they are expected to fit at the time of sale or in my mind. I couldn't help but thinking all along the first socket never fit from the beginning and I didn't want that to happen again. I wanted to make sure it fits perfectly well. What little I know about prosthetics I do believe the socket shape and size to be adequate, but IDK why I'm not getting a tight seal that will last through out the day. Any advice or imput would be appreciated.
Blair, btw...I asked about when you push your valve button in you hear a pop and wondered why I do not...I get a gentle like breathy feeling is all I get. She said that could be the difference in valve manufactures. But she kept discounting what I've learned from various people, because theirs were accidents or they were healthier and I can't compare the two at all. So IDK. I think I should be able to compare them...you have two very healed legs...true you are healthier and more muscular...but the devices should fit and work the same in my line of thinking. However if it weren't for talking with others I would know nothing about any of it, because I sure didn't get a manual or any printed material or advice on what to expect or when to expect it or what would be normal. For me they cut it off told me how to care for the wounds and sent me home with nothing more than that.
So IDK wondering and begining to get frustrated. I don't mind doing my part and what I need to do, but don't make it more harder than it already is. Just give me directions, tell me what to do and I will somehow and some way achieve what I need to do to fulfill my end of this situation.
Suction Socket
Can anyone who has used the suction sockets before give me some suggestions as to why I might be loosing suction and the leg coming loose and wanting to fall off? I noticed this after long periods of sitting i.e..standing exiting a car. Also is it normal to have to work to get your stump with liner all the way into the socket's bottom? The ladies in the prosthethis office seemed to indicate that it takes time and wont happen immediately, but I kind of thought if it is suppose to fit right that it should fit. IDK? I don't have much experience in this sort of thing. I do know the original lock and pin socket never did fit it was too big...and of course never could use it. So I would appreciate any input please.
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