Need for Lyphodema Arm sleeves

Abbydog

I don't actually know who needs these sleeves. Is it potentially anyone who has had a Mastectomy?
Or only those who had axillary clearance? 
I've had both. I have been measured for Lyphodaema with the SOZO machine, and do not have it yet, 11 months after surgery.
Has anyone else been recommended to get one, especially for airflights? If so how long a flight, would they be needed for?
Also do they cost much and easy to get? Or custom made?
Any advice would be helpful.

shiree

Hi Abbydog,
I am unsure what the medical professionals do in SA however you can check. I was diagnosed with Lymphedema within 4 weeks of having my surgery for double mastectomy and total axillary clearance. I have had to wear a compression sleeve and glove for the past 3 years (every day) which is fitted by my physio. If you have not been diagnosed with this you will not have to wear a garment every day however I have heard that if you are flying more than 4 hours on a plane you should wear one, also compression socks. Both have helped keep swelling down on flights for me before. You can buy compression garments online but if you want to be specially measured you might have to visit a lymphedema specialist. My custom made garments are measured in Rockingham Hospital Western Australia but are ordered through a company in Sydney and made in Italy at a cost of approx. $300 for both the glove and the sleeve. I am able to claim this cost back on my private health insurance (standard extras cover only).
hope this information has helped.

JennyD78

Hi @Abbydog
I didn't wear a compression sleeve on my first overseas flight after a bilateral mastectomy and axillary clearance (no lymphodema but a fair bit of cording, flight was 1 year post surgery).  I had asked my physio about it and she said if I was really worried to get something but I decided that seeing as I was going to a friends place in Denmark first, I'd get something there if I needed it.  Luckily, I didn't

Abbydog

Thanks Shiree and JennyD78

Afraser

Hi @Abbydog

I do have lymphoedema and my therapist was keen for me to wear a compression sleeve on any flight. In essence, I have discovered that swelling on one day can take a week or more of active exercise, compression etc to get rid of, so not worth it. You do not automatically get lymphoedema after a mastectomy and may not after axillary clearance either but it should be noted that if you have had a reasonable amount of lymph nodes removed, lymphoedema may occur up to 15 years after surgery! So the sleeve may have been proposed just in case. It’s worth checking if you actually have lymphoedema. If not, then an off the shelf compression sleeve might be worth having for longer flights or if any swelling appears. A qualified lymphoedema therapist can advise and can recommend garments. Off the shelf is cheaper and can be subsidised but depending on your diagnosis, custom made may be more effective. It can all be very manageable as long as you know what you have, and what to look out for. Best wishes. 

Abbydog

Dear Afraser,
Thank you. I had 25 lymph nodes removed, I believe that this is a large number.  My upper arm still feels odd. Sensation is still not normal. Measurements so far have been normal. Are you protective of the arm for injury too? It is odd that it can appear at any time, I wonder what the odds are? I could google that.

Afraser

Dear @Abbydog
I had seventeen nodes removed, got lymphoedema about 7 months after surgery. While I'd naturally prefer not to have it at all, I found it easier to cope with while handling everything else than getting it when (cross fingers) breast cancer was well and truly in the past! I assume it's a matter of pressure on remaining lymph nodes, they may just get overused and pack in! It's not common to happen years and years later but can occur. Numbness around the axillary clearance area is normal and can take a while to improve - digging around messes up some nerve endings but they can and usually do recover. If your measurements are normal, you may not have lymphoedema or may have a very mild post surgery effect that will sort itself (that's quite common). I have had one bout of cellulitis in eight years - beware manicures! I am sure the salon was perfectly hygienic but cuticle work may have let in some germs (particularly on the tram home!). I'll stick to pedicures from now on. I have never had problems with cuts, scratches (have two cats!) - but I do clean anything promptly. Otherwise I have no discomfort, no stiffness or heaviness and I use my arm normally. But the compression sleeve keeps the fluid in check and keeps my arm stable so I wear it most days. Best wishes.

Abbydog

Thanks.  Very thorough information. I'll keep it in mind and have some checks. And continue to take care. 

Zoffiel

@Abbydog I saw the lymphedema nurse and physio at my public hospital and got measured for a subsidised sleeve. Depending on what you need and how you are built, they range from @ $60 to the price of a second hand car. Technically I don't have full blown lymphedema, but I do have intermittent swelling and have had a bout of cellulitis so having a sleeve in the 'might need it' drawer  has been useful.

Being a bit of an albatross (Odd looking bird with a monster wingspan who is comically awkward on take-off) I was lucky enough to find a cheaper version which fits well enough.  It's relatively low compression and I could afford to buy a beige one and a black one. The black is much less confronting than the beige orthopedic old lady version as it looks more like I've only rolled one sleeve of a black skivvy up.