I had seperate but long talks with my family members today to let them know that amputation will probably be happening before the year is out... the possibility of amputation has been raised since my last ankle surgery in March and the prospect for the amputation is very high so I wanted to get my family used to and comfortable with the idea.
My parents are furious that it has come to this, but they understand that after 7 years 9 months and 19 surgeries without a pain free day I need my life back and there is really nothing else that can be done... every major tendon, ligament and muscle in my ankle and midfoot has been reattached numerous times then replaced with others taken from my body, bones have been cut, moved, lenghtened, fused... nerves have been removed and severed permanently to try to relieve pain... there is just nothing else that can be done. My mother is depressed and my father has been the most supportive he has been my entire life.
My husband is ready for this, he wants me to be able to do things that I used to love to do again and have not been able to do... you have to understand that my injury happened only 10 months after we married.
My children (from a previous marriage) have not been told... I do not know how to tell them and am going to wait until I have a surgery date, then will seek the help of a child psychologist on how best to break it to them, though they have grown used to their Mom having constant surgery and not being able to do the normal things Mom's do all the time.
My brother... my brother told me that if I allow the amputation he does not want to hear about it nor will he want contact with me again... that I am just seeking attention... that there is not and never has been anything wrong with me... this is the same man that when I had my first surgery and coded on the table due to a fluid overload that caused heart failure and respritory failure... that had me in CCU for a week in a vent and the doctors not sure if I would survive the night... could not take the time to drive 20 minutes to the hospital and never even sent a card. This is the same brother that when I was diagnosed with MS and I told him (because it is hereditary and he and my nephew needed to know) yelled at me for an hour saying that I was a cruel and selfish person and did I have any idea how my lies and attention seeking affected HIM.
When I told him, he said "I am telling you, don't do it... I will not allow you to do it... I will call the doctor and tell him you are faking and don't do it.... wait 10 years because medical science has breakthroughs and there will be something else that can be done. I know a man who had an amputation and his life was ruined by it"
I have been trying to accept what is to come... to see the bright side... to keep upbeat for my family and husband... but the truth is I am scared, mad and feel very alone in this. My Brother is the only family I have living in the area... my parents live 350 miles away... and when he told me that if I have the amputation he did not want to hear about it I told him I would do him one better... that he would hear nothing about it either way nor would he hear from me again until he had an appology for me.
SOrry I am venting here... I just can't understand how he can act this way.........
If all that doesn't kill you makes you stronger then just call me SuperMan
So sorry to hear that you are looking at a possible amputation. Don't apologize for venting on the board, that is it what it is for - support, and just to have someone listen to you.
Your parents want only what is best for you, they have seen you struggle for a long time and I am sure were hoping that it would not end like this. As for your brother, it is obvious he has other issues in his life, and at some level must feel that your struggles interfere with his life. It is unfortunate he feels the way he does, but I don't think there is anything you can do about it right now. Sounds like counseling is in order for that situation.
I wish you the best in telling your children. I don't know how old they are, but usually they are pretty adoptable.
Good Luck! -eko
"Every good has a better and every bad a worse."
I'm sorry your troubles got to the point where amputation was the only valid option, but I am glad it's finally on the table as an option. It's got to be a difficult decision for you, but if it's on the table, it probably is the best available option. Doctors don't suggest it without reason.
Amputees DO suffer, and the pain can take years to go away, but it ultimately does ease, and most do go on to lead full, active lives.
I hope you will seek the help of a psychologist, pastor, counsellor of some sort or another, speak with someone who can help you sort through the destructive emotions you are experiencing, as well as the ones that will haunt you in the future.
I hope, too, that you will find a positive, enthusiastic, reputable physician to help you choose a prosthetic when the time comes. The right prosthesis can make all the difference in the world to you. You might end up with several of them, before you find what really works for what you want to do.
I'm sorry your family has not responded with the positive, encouraging support you need. You may come here and 'talk" with us, and while most of us really don't "know what you're going through", we'll listen, sympathise, and try to encourage you. No, we don't know you or love you like family, we are strangers scattered all over the globe. However, we do care for others, empathise strongly with our peers, and in an odd way, become as family.
Give your family and friends some time, and let them see you recover. Remember everyone has their own issues, and it sounds like your brother especially has some. I'm not excusing his insensitivity and cruelty, but rather encouraging you to reach out for your own recovery, and if need be, pass by brother. For whatever reason, he's not capable of giving you what you need.
It is hard for them, and frightening, but it IS YOUR body, your suffering, your opportunity, and you need to take care of YOU!
I will pray with you, and listen here whenever you need to rant. Kim
I am sorry that your brother is not understanding about this. I have a brother that is the same way. He always thinks that he knows better and that he is an expert at everything. I don't know what it is he is looking for. I really don't have the time or energy to worry about it. I don't think you do either.
I might have the amputation in the future. I will let them replace my ankle but the dr. said that will not take away my foot pain.
I met a girl at the University. I have not seen or spoke to her in a while. One day, two weeks ago a car pulled up in my driveway and I saw it was her. I went over to the car and asked if I could get her chair. She said NO!!. She then got out of the car and jumped in the air with both arms over her head. She had an amputation. She ran down the street then jumped again. I was so emotional, I couldn't believe it. I started to cry for her (HAPPY TEARS). She was in so much pain, had so many surgeries and still had no relief so she had an amputation.
Don't get me wrong, she had the nerve pain and they gave her Lyrica. She said it helps a lot. As far as the prosthetic device, she has the one with the shock absorption in the foot and ankle. She can jump and even run. She has become an exercise fool!!!
Yes, it is scarry and you will have a lot to work thru but, I think it will be worth it in the end. Yes, I have to agree, you should talk to someone professional about this before you have it done.
You will also need to start working on your leg, hip and core muscle. This will help you after you are fitted for the device.
I don't know what to say about your brother, it sounds like he is using all your energy. Use your energy on getting better and having a new life. YOU DESERVE IT. You have been thru a lot and now it is your turn to have a better life.
You sound like a brave person who is facing something that may initially cause you a lot of fear, but will hopefully be a doorway to less pain and more mobility. I am not facing amputation, but I have had 10 surgeries on my right foot and knee since an accident in 1996. I wonder about the future and how much more they can fuse, reattach, tighten, etc!
As for your brother, I can only imagine how painful his reaction has been. Some people (even family) just cant handle medical issues. I wonder if he realizes how he is affecting you with his hostile attitude? I remember once with my sister getting into a huge fight the night before a major knee surgery. She was treating me like I had no judgement and she was really cruel. She was also just NOT there for me later. Oh well.
I think you will feel better once you have a date. I hope this proves to be a new beginning for you. Best of luck.
Everyone repsonds differently. Your mom got depressed, your father turned supportive, etc. Your brother is obviously got his own demons to deal with, especially as it comes to health issues and possibly some sibling jealousy. You can control how you act but not how others act, so don't waste your time trying. I think you did an admiral job trying to help prepare your family for such a life changing event. Kudos for you for thinking of others when you have had enough on your own plate!
While you see this as a positive way to hopefully end your suffering, others usually think of amputations only as a crisis or bad thing -the result of a traumatic event like an acident. Most folks would never dream of cutting off a part of their body on purpose. Funny how we all say if it's cancer than cut it out and NOW. Hmmm, makes one think, eh? They have never "been there" as you and some others have.
I honestly hope you have wonderful results as you hope and I am sure you have put much, much thought into this procedure and the resulting after effects. I do know that many amputee (prospective and post) patients are placed into counseling and that it is very useful both before and after.
Kids are quite accepting of just about anything if explained in age appropriate terms. They may be freaked out at first or frightened immediately afterwards, but they can be upset at just about anything (think of kids and tonsills ops or new haircuts). All things are reacted to differently according to the individual child, age, experience, etc. They all come around in time. They just may surprise you. They have known you suffering for a long time so this may not be a huge deal to them after all. Perhaps they will see it like Oh, your foot is broken/hurts/sick and the doctor can't fix it so he is going to give you a better one (pros. appliance). In fact, they may be happy you will finally get better! I would suggest you could call a local SPCA, vet or hospital pet therapy group. They often have 3 legged or tail amputee animals that visit children in the hospital to help with this very subject.
To me (my 2 cents) it doesn't really matter what your brother thinks or what he threatens. While his response may hurt you and make you angry do not allow him to guilt you into anything. As you said, he has been unable to handle crisis or family relationships in the past. His loss, not yours. You need positive and supporting folks who care about the whole you. At least here you have that and it sounds as if your other family members and healthcare team are also behind you.
If you ever need to vent or cry or laugh - here we are! From one Virginian to another I send my shoulder to lean on. Do what your heart tells you is best for you and your immediate family. I pray for you and for the skill of your doctor. God Bless and here is to a swift and full recovery!!!!