Jump to content
Heather Mills - Amputee Forum
Pixy

Revision woes

Recommended Posts

I must have been truly evil in a past life or something. I'm sorry for all my posts being rants but it has been a lousy few months.

So I've had lots of problems with breakdown and nerve damage and lack of function of the stump. So I go to the meeting with my Doctor and talk about all the problems I've been having. He says the skin looks fine and surgery should not be needed. it is too invasive. Even though I tell him I can't take weight on the stump unless it is confined in the socket. I can't kneel unless I'm wearing my leg I can't crawl with out my leg on I can take no weight on the end of my stump. I told him all this but he only wants to presue pain medication. After I presisted he sent me to see another doctor but they didn't give me an appointment till the winter.

I'm starting to think I'm the only one who notices that the whole thing is getting worse and worse. In the past five years I've gone from a healthy but oddly shaped stup. Then I lost sensation then I slowly lost the ability to take weight. Then the heel pad started to move back when ever I put on my leg forcing weight to be placed where it can't be taken. Thus lots of breakdown. Then in the last few years the pain has been so bad I can't sit still for an entire class. I can't focus because of the pain. I can't get a good fitting because of the shape and the weight issues. I'm waiting for one of the breakdowns to become horribly infected which is bound to happen next.

And I feel like i'm the only person who notices any of this. Shouldn't all these problems warrent some sort of revision. All these doctors don't want to touch it because it is " complicated." because it isn't " clean cut." Why it isn't clean cut is beyond me. I lost my leg to cancer they surgically removed there is no reason it shouldn't be clean cut.

I'mjust fed up with all this nonesence. To the point I really wish I could just take a fall and break something so they would have to at least hear me out.

Share this post


Link to post
Share on other sites
After I presisted he sent me to see another doctor but they didn't give me an appointment till the winter.

I'mjust fed up with all this nonesence. To the point I really wish I could just take a fall and break something so they would have to at least hear me out.

Hi Pixy,

I'm so sorry for any pain you're experiencing and the situation that you are in. It's very frustrating when we know some changes need to be made, but don't have the medical support to move forward. I'm glad that your doctor referred you to someone else, as I don't like the fact that he wants to just keep giving you meds. Plus, if he doesn't think surgery would benefit you, you really don't want him to be the one doing surgery on you, do you? So, hang in there until that appointment with the new doctor. Also, have you researched the ERTL procedure? I think a consultation with Dr. Ertl (there are a few of them) would greatly benefit you.

Please take my word for it, you do not want to fall and break your residual limb- you really don't. It happened to me last year and I wouldn't recommend it to my worst enemy! Truly.

Good luck, I know it's hard to be patient.

Share this post


Link to post
Share on other sites

I'm going to try to get the Winter appointment moved. My appointment with the last doctor wasn't supposed to be untill March. So I'm sure I can squeeze in especially considering I nearly passed out in my Earth science lab due to pain and ended up sleeping 5 hours once returning home. sleeping is the only thing that seems to work.

I have read about the ERTL proceedure but I'm not sure it would help me right now. my situation is very unique which makes it extreemly annoying.

This is sort of what I had done at first. but more fibia. First the foot portion was removed so only the heel remains. Then there were five or six smaller proceedures done to deal with scar tissue, length , then clean up mistakes caused by previous revisions.

somewhere in the structure is a magical mystery bundle of nerves.

IMAGE1.jpg

Why they didn't just clean cut after the van ness failed I don't know.

Share this post


Link to post
Share on other sites

Hi Pixy,

I'm sorry- I wasn't familiar with your amputation when I replied the first time. Yes, you obviously have a unique and complicated situation! I certainly hope you get your appointment moved up. Almost passing out from pain isn't something you should have to put up with! :(

Wish there was something I could do to help...

Please keep us posted as to what the next doctor says, I pray it's good news and that he can come up with a reasonable plan to help you.

Take good care,

Cheri

Share this post


Link to post
Share on other sites

Hi Pixy...

I have read about your situation, but you are the first person that I have talked with that has had one. I'm sorry that you are in so much pain. It's never a good thing...I wish I had a an answer for you, but all I can do is be here for you to "rant" to. And you have the right. This is the place to do it, that's what it was created for. Often times, people will get on here and just complain about bull crap. About nothing in particular that really deals with being an amputee. You, my dear, are one of the reasons this site was created. So, never hesitate to come here..

The only thing that I can think of, off the top of my head, is next time that the pain is so intense, what if you make a trip to the emergency room at your local hospital. I know that other than meds, there probably isn't any thing that they would "want" to do but possibly it might give you someone to listen, that might actually care. The fact that you are nearly passing out from pain is NOT a good thing.. If nothing else, be persistant. Call the doctor, who you have the upcoming appointment with, and ask to talk with is nurse. Possibly, if you get to talk with her, she might move the appointment up. Tell her, that you are not in search of pain meds, but someone to actually look at your limb and do something.. Don't know if it will help, but, you don't have anything to loose by asking..

Your in my prayers... hang in there....

Share this post


Link to post
Share on other sites

Hey

Just to update.

I went to my family doctor on Thursday as a follow up. I had settled down considerably since Monday not to sound melodramatic but Tuesday and Wednesday I was an absolute mess. having rethought things I realized why the first Doctor didn't want to jump into surgery. Lots of stuff can go wrong and cutting open with out all the information is bad news. Particularly when my father mentioned the slight possibility of stroke I smartened up. I still want a revision however and my Family doctor agrees something has to be done.

THe swelling and redness is not cool.

As I was waiting to see my Family Doctor the girl who does my legs called and mannaged to arrange a meeting with the doctor who works with the rehab centre. So I saw him today and it went well. He squeezed my stump which I nearly killed him for. Last time anyone squeezed my stump to see who the pain situation was I punched them .( I felt terrible about it after wards because it was my dad)

He was worried because the pain occures reguardless of if I'm wearing my leg or not. And my prostitist was freaking out because I came in walking with the aid of a crutch and with a nasty red mark across my stump.

I tried to reassure her it wasn't a bad fitting. the redness happens because my leg twists and turns to get comfortable because it aches when it has to stay still for very long. Unfortunatly my leg is fitted to my oddly shaped stump and moving around isn't a good thing.

So next week I have two more appointments one to get my leg tweaked to aleviate some of the pain and another to see a third Doctor.

I should write a book.

Share this post


Link to post
Share on other sites

Pixy, I'm glad the "venting" siphoned off enough excess frustration to let you rethink matters. I'm even MORE glad to hear that you're getting some response from your doctors/leg team! I hope that they can improve matters significantly for you while they're sorting out "what to do" long-term.

Pain is a miserable thing... you shouldn't have to be dealing with this, and I'm sorry you're going through it!

Share this post


Link to post
Share on other sites

Hi Pixy

As you I know, I know what a Van Ness is.

I've just got a few questions:

Have they given you a full blood count? Have they tested you for any form of arthritis or soft tissue problem? And (I hope you won't mind me asking this?), are they sure it's something like a nerve problem and not a reocurrance of your original problem? Basically, are they sure it's a mechanical problem?

I only ask, because sometimes the symptoms may just be part of the story.

Take care

Lizzie :)

PS No, you weren't wicked in a past life - you're just a bit unlucky in this one.

Share this post


Link to post
Share on other sites

I've been getting blood work every month for the thyroid busness. And I had a blood count not long ago.

There has been no testing yet for anything soft tissue related. I don't know if the issues are nerve related. That seems to be the likely cause for the pain and the numbness. The first problem has something to do with the main artery or something along those lines. then the limb being left open for a long time. Frankly I want everything that had something to do with the van ness removed. The only part not hurting and not appearing to be damaged is the femur.

Share this post


Link to post
Share on other sites
I've been getting blood work every month for the thyroid busness. And I had a blood count not long ago.

There has been no testing yet for anything soft tissue related. I don't know if the issues are nerve related. That seems to be the likely cause for the pain and the numbness. The first problem has something to do with the main artery or something along those lines. then the limb being left open for a long time. Frankly I want everything that had something to do with the van ness removed. The only part not hurting and not appearing to be damaged is the femur.

Pixy,

I am so sorry that you are going through all that pain. Hang in there and vent all you want. We all do it at one time or another. That is what this site is for.

JudyH

Share this post


Link to post
Share on other sites

Hey Pixy. Hang in there girl. Someday this will be a memory. I'll be hoping for better days ahead. Please keep us posted.

Sometimes life puts us through the meatgrinder. Be sure to load your pockets with big rocks. :blink:

Share this post


Link to post
Share on other sites

Pixy,

I hope things improve for you. I'm having some tough times as well and it gets hard to keep being patient.

Take care.

caroln

Share this post


Link to post
Share on other sites

'Pixy' I am so sorry you are having to go through all this pain & frustration. :( Honey, just go ahead and vent all you want. Like Higgy said, this is what we are here for.

:)

ann

Share this post


Link to post
Share on other sites

I went to see the Doctor my prostitist recommended. And he is willing to look into a revision. If possible he wants to remove all the remaining Van ness so I would just have my femur. he's going to ask the girl who does my legs how long it should be and do it based on that. But most importantly he's willing to do something if he can. he's going to talk with other doctors first...but yay.

Share this post


Link to post
Share on other sites

That sounds like a good combination of willingness and caution, Pixy... I hope they can come up with a good plan of action for you!

Share this post


Link to post
Share on other sites

That's great news Pixy... I'm sure that you feel better knowing there is a plan of action now..

Hang in there.. I know.. the waiting is the hardest part..but, with the lines of communication open, and it sounds like your doctor is willing to get everyone related to your problems on board, it should get better.....

Prayer to you Sweetie........ :) :)

Share this post


Link to post
Share on other sites

Thank you for all the kind words and thoughts.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×