AVM Survivors Network

Phantom Pain after the Below Knee Amputation - AVM Left Leg

Today exactly 17 days after Below Knee Amputation on 26th Feb 2016. It never an easy decision to do BKA. It takes about 2 years before i say "Yes".

Prior to amputation, i do lot of reading and chat with peoples on site regarding AVM and BKA. I aware about Phantom Pain and Phantom Sensation. Between these 2, you definitely don't want to experince Phantom Pain.

Since i have AVM pain for so long, my chances of getting Phantom Pain are very high. This is also explained by my doctor that the chances are high. However, it's not forever. It just for few months until it's gone. But although just for few months, i personally can't hold it. It's too painful. Previously before BKA, whenever my leg feel so pain, i usually rub it to make it feel better. But now, no more leg but pain still there. And it is real pain.

I'm not here to scare anyone. But my point is to let you know that there is a way to kill Phantom Pain. You just have to be strong to go through it. Today is my 3rd day consume Neurontin. It is prescribed by my vascular surgeon. This medicine will help me to kill the Phantom Pain. Now i just have to keep continue taking my dosage with hope that this PAIN will go away.

In my life, i never enjoy buying a shoe. I always have to get a bigger shoe to fit my swollen AVM foot. That is why i just can't wait this pain to go away and wound to perfectly heal. So that i can start getting my prosthetic leg. Then i can choose any fancy shoe i like.

Friend...let us be strong and we just not a survivor. But we are also a warrior. We fight AVM!!! :)

You are indeed a strong warrior, Sha. You’ll be in my thoughts and prayers to have a fast and pain free recovery.

Great post, Sha. I appreciate you sharing your experience with everyone. I am probably following a similar path- I have an AVM in my left foot. I met with the local prostetic maker last Friday. Yesterday my wife and I went shoe shopping and purchased new work shoes and casual shoes- 1/2 size bigger than my unaffected foot. I am hoping the AVM quits growing and goes dormant. Some days it is "quiet"- not hot, doesn't feel swollen, little or no stabbing pain or aching. Other days it is the opposite. Sometimes my foot heats up and cools down several times a day. I can't figure out what triggers good days or bad days.

If my AVM grows out of my new shoes, I will probably move forward with BTK amputation. I have only been dealing with my AVM since January, so perhaps I won't have as much phantom pain as you...

Please keep us posted. There are a number of us (lower extremity AVMs) who check this website regularly. I think you will be glad you made the decision to go forward with the amputation. It may take a few weeks or months- depending on your healing process and when the phantom pain stops.

In the meantime, hang in there!