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Bk amputation

#1

Hi all ,

Thanks for adding me to this group, I have had a problem with my left ankle for over 2 years and after numerous MRI scans have recently had my world tipped upside down by synovial sarcoma , great news it hasn’t spread , not so great news I get to lose part of my leg ,tomorrow actually !
I am not feeling too bad just a bit nervous and not about the leg funny enough , I have a needle phobia lol.
I am determined that this will change my life for the better ,I would like to know off any other bk amputees about afterwards , getting a prosthetic , how long before I can walk again etc , I have a big holiday planned for the end of June and I am determined I will go .
Thank you all in advance x

#2

Too bad that they don't give you anesthesia before they put the needle in ;-)

You should be fine for your trip in June. I had my amputation in the middle of a November. It was followed by 2 cycles of chemo. I was fitted with a prosthetic leg the following February and went back to work the following March. At first I was using crutches because it took me a while to feel confident walking with the prosthetic leg without crutches but I am an above the knee amputee and I believe it is easier for a below the knee amputee since you don't have to worry about controlling the knee. The stump is swollen after surgery and it may take a year before it reaches a stable size. That's why the first prosthetic leg is a temporary one. While you wait to get your final leg, you may have to use varying layers of socks on your stump to maintain a good fit with the temporary one. It's important to find a good prosthetist. My first one was pretty bad and let me suffer with my issues while the second one was addressing them. So if you have issues and they are not getting resolved, please do not hesitate to get a second opinion!

#3

Elodie ,You are an amazing person.Always there to help everyone.God bless you.

#4

Hope everything will do well for you. In our case , the doctors could not recognize the problem in the left leg near hip region . actually it is a soft tissue tumour recognized first time at the age of 7 years. none doctors recognized it. since 2013 there was a lot of pain in the leg and back side. the doctors said due to problem in spinal chord , some said no medication , only rest and soon. even scan reports indicated less blood supply to the left toe , but nobody identitified. some gave sleeping pills since the pain is heavy during night times. because of the high dose in these pills , after a sudden fall in the early morning and that too on the tumour , it suddenly started swelling. even at that time , the doctors said it was a blood clot and started removing with a surgery. during the surgery , the doctor was surprised and frightened for the mistake, but wanted to hide the information. iam thankful to the lab people who gave the biopsy report after 2 weeks and told synovial sarcoma. for all these days the pain is so much that it is unbearable. atlast the second surgery is from an oncologist who had taken away some bone , some residual tumor from the hip region. took 4 months for complete recovery from radiation too. now the scan reports said NED.

#5

Hi all surgery went well , amputation approx 9.00am back in my room eating and drinking by 12.30 , I am home now got discharged after 5 days as feeling great , thank you all for you kind words and advice

#6

Any phantom pain so far?

#7

No phantom pain , just phantom feelings , I have either been ignoring it and distracting myself with reading or , crossing leg over and husband has massaged other foot which seems to work

#8

So happy your surgery was a success and you're doing well!! :)

I love your attitude about this changing your life for the better. I agree wholeheartedly. While cancer isn't anything that anybody would want, especially synovial sarcoma, I have truly been blessed in so many ways because of it. I see the world differently. Things have never been clearer.

Keep up that positive attitude. I hope you continue to recover well.

#9

This is so true. You'll find the support you have is humbling. Find a blessing every day.

Sonnut said:

So happy your surgery was a success and you're doing well!! :)

I love your attitude about this changing your life for the better. I agree wholeheartedly. While cancer isn't anything that anybody would want, especially synovial sarcoma, I have truly been blessed in so many ways because of it. I see the world differently. Things have never been clearer.

Keep up that positive attitude. I hope you continue to recover well.

#10

how are you now.

I had a doubt about your case. why did the doctors remove the leg when there is no spreading issue.

#11

Hi , I am doing well , had training prosethic for a week now and walking quite well .
The dr gave me the choice of amputation or removal of cells and reconstruction , but a previous dr had tried to inject the tumour and it fragmented so the cells where quite spread through my foot which would have meant I would have lost over half of foot and ankle would have been fused so I would never have walked properly . With the amputation I know it has all gone and I need no further treatment so I am actually very happy

#12

please , I could not follow you .. iam asking this to help my issue ,...please tell me about the fragmenting of the the tumour.

iam still online in chat room



Moopy said:

Hi , I am doing well , had training prosethic for a week now and walking quite well .
The dr gave me the choice of amputation or removal of cells and reconstruction , but a previous dr had tried to inject the tumour and it fragmented so the cells where quite spread through my foot which would have meant I would have lost over half of foot and ankle would have been fused so I would never have walked properly . With the amputation I know it has all gone and I need no further treatment so I am actually very happy
#13

A surgeon originally diagnosed a ganglion cyst so tried to inject cortisone into it , this could not be completed as the pain was extreme ,another surgeon then operated and tried to remove the tumour but large cells had then spread around my foot , they think this was due to the cortisone injection .
The PET , MRI and CT scans confirmed this so amputation was by best long term solution , I am now free of the cancer and doing well with the prosethic , so all in all best outcome for my situation .

#14

In my case I had a tumour of size 5cm , the doctors did not identify , thought to be the swelling caused due to a sudden fall and as a blood clot. Did a surgery and the biopsy revealed the cancer. the pet , mri ct scans are done , and suggested a second surgery. after second surgery the radiation is also given . before the radiation , the pet scan showed NED and now free of cancer.

my doubt is that between the second and first surgery do cancer cells spread to other parts . there is no evidence in the scan reports , my doctor told that there is no metastasis but , still afraid



Moopy said:

A surgeon originally diagnosed a ganglion cyst so tried to inject cortisone into it , this could not be completed as the pain was extreme ,another surgeon then operated and tried to remove the tumour but large cells had then spread around my foot , they think this was due to the cortisone injection .
The PET , MRI and CT scans confirmed this so amputation was by best long term solution , I am now free of the cancer and doing well with the prosethic , so all in all best outcome for my situation .
#15

Sruthi, no evidence of metastasis doesn't mean cancer cells did not spread elsewhere. It just means that if they did, it does not show yet. Only time will tell. You have to learn to live with uncertainty. The best you can do is to get regular follow-up scans and focus on enjoying the present without thinking too much about the future.