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September 16, 2012 at 3:17 am #56036LinnyParticipantGaylaB wrote:
Really needing advice on this so if you know what to do, please let me know- I walked for the first time today without a walker , and actually may have walked more than I should but my leg is swollen- not where the drain tube was , it is actually swollen around the knee area.
Is that just from walking or something to worry about and head to the dr?
Since you’ve had lymph nodes removed, all bets are off. Your swelling may subside, then again it may not. You need to call your doctor because you need to address this immediately. Remember you are at risk for lymphedema.September 16, 2012 at 10:10 pm #56037
Well I learned the HARD way – don’t over do it 😮
The swelling went down by the time I woke up this morning but it got really big!
I didn’t rest well –
My calves are sore in BOTH legs- I have taken it extremely easy today – guess I got too excited that I could finally walk and just did too much.
I’m hoping I havent set myself back in recovery. Rest today & take baby steps tomorrow
GaylaOctober 1, 2012 at 4:32 pm #56038
Just got my medical oncologist assigned to me from my surgical oncologist- still staying with the team at Emory University in Atlanta. My appt is Nov 6 and it is just to talk “treatment options”- should be a scan sometime in December if we stay on the same schedule my surgeon suggested which was every 3 months.
I am still swelling a great deal an hour after I wake up each morning- swelling starts from the thigh down to the foot- I can only wear flip flops or Ugg boots- still no form fitting shoes and it’s been exactly 1 month since complete node dissection- how much longer on the swelling for all you that have been through the dissection of the groin?
GaylaOctober 2, 2012 at 3:40 am #56039msue5Participant
You really need to start Lymphedema therapy. You can start as soon as drains are out and healing of incision is evident. I went through 6 weeks of 2-3 times a week of manual drainage and wrapping with compression dressings. After that a compression pump was ordered which I use 2xday for 45 minutes. Some Dr’s are pro pump and some prefer the massage and dressings. After you are stabalized a compression stocking will be ordered. I use the stocking when I know I’m going to be on my feet for a long time or when I am going to be in the car for a long time. The pump is great for me because I can’t bend over to my feet due to the problems with my Abd after 2 Abd surgeries. You need to find a therapist that specializes in lower extremities. Most know a lot about arm lymphedema because they work with a lot of breast cancer patients. My Lymphedema Dr had to search a lot for someone certified in lower ext treatment and I live in a major metropolitan area. I see the Lymphedema Dr every 6 wis for evaluation. I love my pump and feel like I am more compliant b/c it is easy and I can do it myself. With the wrapping and massage I had to rely on my husband and I would have to get up at 5:30 so he could wrap my leg.
Mary SueOctober 2, 2012 at 2:44 pm #56040
Do I need a referral for insurance reasons or simply find one on my own? When I asked my surgeon she said no need but after 15 minutes on my feet, my leg looks like an elephants leg!
In the morning after waking and sleeping with it elevated, it looks normal but something is certainty wrong with the knee- that and where the nodes were removed is very painful even though the lower leg swells just as big, the pain there is not as extreme.
November is my next visit, still a long time to wait if I need a referral for PT:(
GaylaOctober 2, 2012 at 4:22 pm #56041LinnyParticipant
Your doctor needs to write an order for the therapy as well as one for a compression garment. I would call your surgeon today and request to be seen ASAP because your leg is swelling.
Like Mary Sue said, you need to find a therapist experienced in lower extremeties.
web site may be able to help you locate someone in your area. It’s also a great resource for learning about lymphedema. The National Lymphedema NetworkOctober 3, 2012 at 4:49 am #56042msue5Participant Linny is right. My order came from my surgical oncologist. I had to pay for compression dressings$60 or so but my stocking was completely covered. The medical store said they had never had insurance pay for the stocking completely. I have Aetna. They also paid for my pump. You may end up going to someone who does not prescribe pumps but my Lymphedema Dr likes them and believes patients are more compliant with them since it is easy and actually feels good when my leg is swollen. I use it in the morning while I have coffee and watch the news and at night after dinner and I read or watch Tv. Get that referral now. The more severe the lymphedema the longer it will take to get it under control.
Mary SueOctober 3, 2012 at 2:35 pm #56043
I will get on that immediately- soooo ready for my mobility to return – it’s been 4 and a half weeks now:(
Also noticed when it rains, it’s worse….
GaylaNovember 3, 2012 at 1:41 pm #56044
Tuesday the 6th is my medical oncologist visit- anxious to see if wait and watch is his FIRST suggestion!!
My prayer warriors are working overtime!
After developing this lymphedema, I am too afraid for anything BUT wait and watch
Never knew lymphedema would be this bad and affect my quality of life this much!
GaylaNovember 7, 2012 at 3:34 am #56045
Watch and wait with chest x-rays every 3 months was my doctors decision today!!
NO CHEMICALS!! Yay
Although the lymphdema is a very serious concern- therapy is the only hope for that.
My chance of 5 year survival is 85-95 percent:)
He and his sidekick were still skeptical about me being staged IIIA when actually 2 doctors staged me IIA, but the worst is over, I feel good about the numbers, praying therapy returns my life to normal
GaylaNovember 9, 2012 at 9:27 pm #56046
Where did you get the pump at?
I’m assuming a medical supply of some sort? I will get a doctors order for that- perhaps that will help.
And have you tried the myofacial therapy before? That’s part of the technique I’m doing now… Just trying to find what works
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