New to this thing.....

Tammy, I would not accept pain at the end of the day as your new normal.

My LE is predominantly in my hand and forearm of my dominant hand as well, and hands are tough--there is a great article on the lymphadivas site, written by Andrea Cheville, about why you need to protect the hand as it hard for the body to drain, and gloves are an art form. I wear custom Juzo gloves with an extended wrist--and I'm currently waiting for the second attempt on the most recent one. I don't wear a sleeve usually.

Here's the link to the Andrea Cheville article: http://www.lymphedivas.com/comprehensivecompression.asp

For me, I find that wrapping my arm at night allows me to wake up with a hand that is in great shape, and keep my arm measurements stable, and that allows me to avoid much compression during the day--as I wash my hands at work all the time.

The tools for self management are: self MLD,well fitting day time compression--used as it is needed, night time compression if needed--and it sounds like if fluid is building up during the day, you could very well benefit. Night time compression is either night garments, or wrapping. Therapeutic exercise--exercises like Lebed that help lymph drainage, and general exercise is good for you. There are more tools, but this is the basic tool box for self management. And, the management is 99% done by us.

Here's a link to therapy and garments on stepupspeak out:

http://www.stepup-speakout.org/treatments_for_lymphedema.htm

http://www.stepup-speakout.org/Lymphedema_garments.htm

So, in summary, I would re-evaluate how you treat your LE--do you need night time compression? Is your sleeve pushing fluid into your hand? How well does your glove fit? What other tools do you need for optimal self management?

And as far as yoga goes, the documents created by Carol are amazing, and the general rule of thumb is to avoid overloading the arms, with downward dog, plank and other movements--a good yoga teacher will help you modify them. And so many of the women here do yoga.

The goal is not to give up what you love, but to modify it so it continues to nourish your life, without causing pain or a flare.

Steep learning cure on LE, and grief as well.

Keep asking questions

Kira

Kimber, completely understand--it's the club none of us want to join--a few of us from this forum created a website to bring together the wisdom that is shared here:

http://www.stepup-speakout.org/

We're always working on it, but it's a good reference and we have links to other references as well.

Short rant about LE and hospitals:

I had a D&C yesterday (my 3rd in 5 years on tamoxifen....) and when the first nurse told me that I couldn't wrap my hand in gauze and wear my pink g-sleeve that says "No IV/no blood pressure" because the operating room is sterile, I just put it on. She said--but we have a pink bracelet on you. Yeah, that no one looks at.

And, when I got home, there were bruises on my good arm from the blood pressure cuff.

And when the anesthesia nurse tried to bully me, I just held my ground--actually they all said the anesthesiologist would not let me wear the sleeve/wrap or just have IV sedation, and she came in, looked at my arm and said "You've sure had a hard time, haven't you?" And upheld my anesthesia preferences.

I always like to do battle when half naked, starved and dehydrated, and thoroughly pissed off at doing this yet again.

But, Binney sent me the g-sleeve (sounds risque, but sure isn't) and the women here have told their tales of needing to advocate against hospital personnel. The nurse anesthetist who was arguing with me that she reserved the right to give me general against my will also told me that LE was rare now. Like she knew anything. I said, well, when you get it, it's not rare for me, is it?

And the parting shot: with my adhesive allergy on my wrist band that no one read, was to have my IV taken out, and a band aid put on my hand. I asked my husband to give me paper tape and I removed it.

LE, the gift that sure keeps giving.

Yikes Kira! Way to fight for yourself! I have been over to the step up sight and need to do more reading on it. Especially the Essential info for HC providers. I have surgery on the 22nd. If I had known more I may not be in the situation I am in. My general surgeon who did the original surgery told he only took three nodes, no need to protect the arm....... THANKS BUDDY! WAY too many iv's and pressure later and my body finally decided that LE was it's new defense

Sucks to not only have LE but to have to fight with "knowledgable" medical staff!

BALONEY SANDWICHES IT DOESN'T HURT!Bah phooey on them! Not sure of that specialists qualifications either because you have to be careful with yoga poses. No downward dog or putting weight on arms unless you have been doing it regularly with no problems. You need to go onto stepup-speakout.org to find a qualified therapist and gather more info. Check out acupuncture there too. We have threads here on it too, Type in accupunture in the main listing topics page in the Search area in lymphedema thread.

I validate you. That lymphedema specialist is nuts! Ok I am going to wrap her in my dirty LE wraps and stick her on top of the Seattle space needle with the rest of the docs and professionals in LE denial! I know you'll want to help me. :P



I am shaking my head still and also feeling the pinching in my truncal LE behind my armpit!

YES! I Said PINCHING, that equates pain. Grrrrrrrrr

Between the LE "Specialist" and the "fitters" I have encountered elsewhere I have to wonder how people who don't know about breastcancer.org function. Thank you so much!

You've said a mouthful, Tammy. I wonder the same thing.  As for acupuncture, the jury is still out.  There  have been some claims that it can help.  Having said that, I like to avoid ALL needles when it somes to LE>

IF I were to forge ahead and have it anyway, I would be darn sure they were clean disposable needles with the areas  cleansed and I (personally) would never have the needles put in the quadrant where I have LE. I would also want an acupuncturist who could convince me, that he/ she knew about LE.  If not, I would walk.

So, free consult would be my first step.

I personally love acupuncture- but that was PRE-LE.  Things have changed a lot since then!
Good Luck to you.

BINNEY
I know you have tongue in cheek, but i have quite a hefty copay for my LX, and I am starting to feel like the hospital should absorb it since my LE will cost that much soon.  I was never informed I was at risk of LE with simple LX and SNB.  I honestly feel they should eat that co-ins! Maybe THEN they would hand out a risk pamphlet.  I HAVE my consent form.  It's not mentioned AT ALL.

Kira

Thanks for the g sleeve link.  I'm on it.

Tammy, I think you should modify the poses to avoid all pressure on the forearms/arms/hands--and that means no downward dog or plank. Standing poses, sitting poses, twists are all fine, and using props are fine also.

Did you ever check out the documents on stepupspeakout.org?

I tryed to copy the page from the trainers' document re: yoga, and it wouldn't format correctly, but it's a pdf and will download for you to read

http://www.stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf

Don't give it up, just modify and adjust. IMO

Good Luck...pls let us know.

In the future , if you want to post from snapfish.com ( upload your pic to an acct you create there )  you can actually just cut, copy at snapfish and then paste here- I have found that to be the easiest way.

Has anyone had experience with these little sweeties?

No!

But after looking at 5 or 6 sites they all essentially said :

"A phlebolith is a small local, usually rounded, calcification within a vein. These are very common in the veins of the lower part of the pelvis, and they are generally of no clinical importance. When located in the pelvis they are sometimes difficult to differentiate from ureteral stones in the ureters on X-ray. ^[1]

Phleboliths in the pelvic region are present in about 44.2% of people and are more commons in females (50.1%) than males (37.3%). The amount of phleboliths increases with age and they also appear more often on the left than on the right side of the pelvic region.^[2] Phleboliths outside the pelvic region appear in about 2% of the population.^[3]

Phleboliths can be diagnostic for hemangiomas on ultrasound."

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Sure seems very odd. I hope you can get more answers.  I dont like the thought of your glove causing pressure and pain due to this.  Dr. didnt sound very helpful - I really hope someone here might have some add'l info.

We do care !

Talk about getting the runaround.  Ouch!

I'm sure all of this is really adding to your concern. WHY dont me have better medical professionals ?!

I'm so sorry you have to go through this. Hopefully, you will find out more on Thursday. Please be persistent....and please  let us know.

Take Care.

Aaaah, I knew " someone here' would have more info!
I am bettng on kira, and would not worry too much .

The only thing I might add is that I do wonder about the fit/wt. of your glove - is it possible it is too small, too much compression....etc . ? THAT is a question I would thoroughly examine with your LEist.  I refused 2 custom fit gloves that were like vices and never went backl to that fitter again. I might consider looking into a farrow glove which is very lighweight.  (For more info,  see the thread all things gloves and sleeves and search farrow)

Good Luck to you .

Tammy

I am sure you are not being bounced around due to the cancer-  it's the LE.  Very few people have any understanding of it. Kira is a safe bet!

As for the glove, with my Farrow, I can open and close the first of the hand with EXACTLY  th same ease that I can of the right hand.  I am not saying that is indicative of proper fit, but for me- I like that feeling.  Also, it  works.  By nightfall my ring fits.  Now if I could do this with such ease, but with no difference/no results, I would be thinking it was too loose.   Ask your LEist and judge by your own comfort as well.

Do let us know- thank you.