Above the knee amputation

Good pm! Im Hana and Im here again.
I was amputated above the knee last October 23 because before that my wounds (caused by low blood circulation) were bleeding non stop. When we finally decided to visit a hospital, it bleed again. Not just a normal flow it somewhat ‘burst out’ like a can of softdrink being opened up after you shake it. The doctor was shocked bec he thought it’s just a normal bleeding of wound. So he decided to amputate it. Because the blood that was coming out is an arterial blood and it’s dangerous.

After the amputation, the rapid beat of my heart that I’ve been feeling for how many years now suddenly turns into a normal rhythm. Which is one of our concerns back then bec according to the doctor, there is this posibility that my heart will get large and becomes weak.

Though my avm is still here, thanks God atleast the ‘worst’ part was removed and we hope that my other vessels was relived because of that. The doctor told us that among all the patients that he amputated, I was the most difficult one due to my huge arteries and veins and so on. Normally, it takes him 30-45 minutes, but when it comes to me, almost 3 hours.

So far I feel good. But my phantom pain is bothering me, but I know it’s normal.

The doctor told us during our last check up that he will remove the stitches on Nov. 7 which is tomorrow. Im kinda afraid. What if the wound will open up?
And do you know someone or read somewhere about a person who also got amputated? What to expect after it? Does an amputation will also have a negative effect on my avm?

Wish me luck for tomorrow. Thank you.

Hello @hana
Thank you for sharing your story. I hope your appt tomorrow goes well and there are no surprises.
I think since we all here have avms and they are rare. So my experience is that rare is normal for us. I also had a rare stroke a few months prior to my avm being discovered and when I described the symptoms I was having my stroke dr said You cant have another rare thing going on with your brain. I said Oh yes I can …and I was right.
I am sorry about your phantom pain. I still have brain pain from my rare stroke and the drs really dont know what to do about it. We are now trying botox in the area of the skull where I have the pain. It seems to take the edge off. Takes about 2 weeks to kick in.
Not sure if they can do this or not in your leg but worth a visit to your pain clinic to discuss. I find they are usually up for trying things where a normal dr would be no way.

Hugs and let us know how it goes tomorrow
Angela

Hana

Hello again! It is good to hear from you! Very best wishes for tomorrow!

I don’t know about any of the things you are going through with your leg except that it is very early after your operation and I would hope that any phantom fades over time. It doesn’t always do so, from what I’ve read elsewhere, but be positive and I hope it goes.

You are right that an enlarged heart can develop with a vascular malformation, so getting it fixed and your heart rate going to normal is fantastic.

I don’t think your AVM will have a negative effect on your amputation. I think the idea of your amputation is absolutely to get rid of your AVM once and for ever. So it is a drastic step to take but a definitive step. It sounds like your AVM was massive. I hope you will find that your amputation puts you in much better health overall.

Talk to your doctor about your concerns about the stitches. I’m sure he will look at how well you’ve healed and be sure that it is safe to remove your stitches.

Very best wishes

Richard