Has anyone faced amputation?

I saw my cardio-thoracic surgeon today - he operated on my left leg years ago and diagnosed my APS. The leg has clogged up again and is very painful. He said there have been no advances with APS treatments and I should consider amputation. We could try surgery again, but I will clog up eventually. Lots to digest. Has anyone else had amputation of a limb because of APS? Advice???

14 Replies

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  • If you have adequate anticoagulation (usually more aggressive than other conditions that require anticoagulation) monitored by a physician knowledgeable about APS, hopefully you will not need amputation!

  • What a frightening prospect for you, I really sympathise. I am currently experiencing similar problems. If it is at all possible for you I would be seeking a second opinion. I know that I am. I have had chronic phlebitis in my left leg for a year now and it is so painful. My leg is blue and pretty lifeless. I have lost all sensation in my foot now. I cannot tolerate the pain for much longer. At the back of my mind I have been wondering if amputation might be suggested for me too. I too have serious heart valve problems and very poor circulation. However, I have decided to take the bull by the horns. So in January 2013 I'm travelling to the London Bridge Clinic to seek advice from Professor Khamashta, a colleague of Professor Hughes. I am hoping that he may be able to offer me other alternatives. I wish you good luck and hope that you too may be offered other types of medical intervention by a Doctor who is more knowledgeable about APS. xxx

  • I always feel that when anyone faces serious life changing surgery that they should seek out a second opinion. Listening to what someone else has to say is much better than going ahead with something that cannot be undone and may just offer an alternative path. Please try to seek out another APS specialist who could even get in touch with Prof Hughes in London for advise before making a final decision.

    In the meantime please use us for support, we may not be able to help in the physical sense but we are all here for you to help where we can. Big hug x

  • Definitely have a second opinion. My leg is pretty clogged having had DVTs in calf and femoral vein. Seen vascular consultants in the past and at no time was there ever mention of amputation: be very careful to obtain the correct advice!

    Paul

  • Absolutely get a second and/or third opinion. Surgeons see the patient world as beinng full of physical defects which require restructuring. A haematologist or rheumatologist will see your situation very differently. Workig with the latter two has "saved" both an arm and a leg in my case.. Amputation for an APS comes with its own risks, as "normal" circulation to the appendage is altered. .d

  • Hello, my left leg was clotted from my knee right up to my tummy button earlier in the year and was very painfull. The Vascular Team at St Thomas' came to my rescue by pumping in a "clot busting" drug for 24 hours and then inserting stents in the vein to hopefully keep it open in the future, It was a frightening time and I thought at one point that I may be looking at amputation. At present all is well, although I have been warned that it could clot again at any time even though I am on anti-coagulation. So, there may be other solutions for you too. Sending hugs. xx

  • Thanks for sharing this, glitterwitch:I had clots treated back in '08 with "clot-buster" meds, but it is not an option any longer.Left leg clogged up again after only 3 months, I've handled the pain until now, but it is unbearable now, so amputation seems to be my only option. I will get a second opinion tho! Thanks for your input....xo

  • Good luck with everything and let us now how you get on. xx

  • Hi pinkcollar,

    I have had my left leg amputated due to APS. That was in 1995.I use an electric chair to get around in. It is all in how you look at things. I always thought, at least I'm still alive. So it will be the attitude you bring to sugery that will help you the most. I hope you don't have to go throught this. But keep you head held high. The only problem I complain about the most is stump pain, and it can be a monster when it comes to pain. I wish you all the luck in the world that you won't have to go through this, but if you do I will be here for you as well as the rest of us.

  • Thanks so much - it is my left leg also. Can I ask if you were offered a prosthetic after recovering from amputation?

  • Yes I was and had one until a revision of the amputation in 1999. The new one was so painful I can't where it, hence the electric chair. I also had a severe stroke in 1995 and lost the vision in my right eye, so they won't let me drive anymore. I used to love to drive, anywhere. It really sucks not to be able to drive and very much limits my boundaries due to not having a bus service in this city. I live in the US, North Carolina. Would love to get back to San Diego, home!!!!!!

  • God Bless you - you've had many challenges!! My Doc said I too would be in a wheel-chair and I said NO I WON'T - give me a prosthetic leg - he said ok. One step at a time tho (no pun intended!). Haven't decided yet...

    hugs

  • hi . im sorry to read your having problems and i know some of the pain your having..i have had 3 toes and top of my foot n some of the top of my leg taken away .and now im having trouble with my other foot n they tried to put a stent in but i have only one good vein left and they wont risk it because i would lose my leg .i would get another opinion and talk it through with the doctor .i wish you all the best xxx

  • Thank you so much, Shell64. Thisis a big deal for me, but the more I read from the group, we are all challenged with this disease. You, too, have faced challenges - god bless you!! hugx

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