am I a dum-dum or a trailblazer?

Cisatypo

I sure hope this continues to work for you....it sounds promising.  I sometimes feel like a dum dum, too: here's my odd discovery. Two years after lumpectomy, my shoulder, arm and breast were still pretty painful when I lifted weights or stretched. Took a class on trigger point therapy and one  stretch that we did felt particularly good (basically, it was a partner stretch  like being on a rack = pulled from feet and arms at the same time). I asked the instructor if there was a way to do that stretch by yourself and she said the equivalent would be hanging from a bar. So while at the park with grandchildren, I hung from the monkey bars. Huge burning sensation and pain in entire surgery site but I hung in there for perhaps a minute. Voila! After that one hang, the discomfort, pain and residual swelling was almost gone and has stayed gone.  Dr. says I likely broke up some very old internal scar tissue from the surgery! It didn't make a difference to my mild arm l ymphedema but it sure made my mobility and QOL better! So I think everyone who has surgery anywhere should ask a trainer what stretches may break up even old scar tissue! Who would have thought the right prescription would be: Monkey bars!

cookiegal

sooooooooo

I saw Dr. Francis today...some good news, despite gaining weight my LE arm got a tad smaller. No way to know if it is the neural prolo, but she said it was very unusual!! So there is a chance the neuro prolo is helping!

She actually did not have a problem with me doing it in the breast, and was on the fence about doing it in my arm.

The bad news, she has never seen anything like the red bubble on my arm.

The good news, she does not think it is a vascuar deformity, or an anuersim.

Binney4

Cookie, that is an awful lot of good-news-bad-news -- you must be exhausted trying to sort it all out! Sure is past time for somebody to figure this out and fix it. Questioning minds want to KNOW!

Hugs and chocolate chip cookies,
Binney

Kz1234

cookiegal, my d.o. has treated me with prolotherapy due to issues first from twisting my knee, then other issues caused from fibromyalgia. it made a major difference for my quality of life so i am here to let you know you werent only one doing this type of thing. it was before my bc diagnosis in october 2010. my other doctors were all against it but they were all for giving me meds that werent helping. i am only posting to let you know there is at least one person on this site that is pro-prolotherapy! others around me know i have had such a good experience with it. i dont have lymphodema or scar tissue as i had a single mastectomy with 15 lymh nodes removed. i think this is also my first post. i will go back to lurking but wanted to let you know i had a positive thing to say. as you said, we can always discontinue it if somethng doesnt feel right. my previous chiropractor was against it,,,as manyof my mds were against chiropractic care. we have to do what works for us in our situation. hope you continue to get relief and improvement. kim

cookiegal

Hi all.....

Last week I did do a set of injections in my arm and armpit....and while there was a bit of swelling for a few days, I actually think it worked even better than for the breast.

I am not so sure it is really going to make my LE go away, but the whole strange topography with the famous red/white bubble is smoother, and no sign of the spasms.

If this was being caused by a pinched or inflamed nerve, it would make sense, because the neural-prolo is allegedly most effective on nerve issues. Botton line the arm looks and feels more normal, and some of the local patchy swelling is better. My other LE still kind of is what it is.

The breast still is just kinda where it was always at on volume. It responds to compression with the "booby wiggles" but still swells. The scar is better, I am glad we turned around the progression of the fibrosis.

(I gotta say if you have breast LE try the wiggles, it really works temporarily) 

 So with probably one treatment left to go my feeling is that this did really help some problems that were most likely contributing to swelling in my quadrant, but it's not a magic LE cure.

If someone had scars or pain issues on a prophy side with no nodes removed I would say it's great to help clean up some minor issues in a farily non-invasive way. I wish I had tried it instead of cortizone on the frozen shoulder.

cookiegal

I had the next set of injections. My feeling is for what ever reason this is working better on my arm than my breast. Go figure.

One theory is because my breast was burned it's tougher to treat.

kira66715

Cookie, are you done with the injections now?

I'd be really interested to see how this impacts you over time. 

Kira

cookiegal

Kira, Me too!

I think one more appointment.  On the breast the scar is better, but the overall shape is really about the same.

I was really surprised how well it worked on the arm, it was significant in the worst spot.

I should warn anyone reading this I have really odd LE, and there is a good chance there is another problem there too.

It may be that by treating the inflamed nerve in my arm it brought some surrounding swelling down, as opposed to really "curing" the LE.

Even Francis says she has never seen anything like the mystery bubble. But the bubbly area is smoother and just looks and feels more like a normal arm and has a better shape.

If I get an infection, of course, all bets are off. I did have some minor swelling at the injection site, but thank heavens it went away after a few days.

sisterinspirit

Cookie, I'm following your story with interest.  My LE therapist now thinks I have nerve involvement perhaps caused by a build-up of scar tissue.  I'm scratching my head on what to do about it.  BTW, what are booby wiggles?

Wishing you continued healing...

Deb 

kira66715

Deb, Cookie cut up her wave garment from the lymphadema sleeve co--the silver wave garment, and uses it to compress her breast. She needs to explain.

Resourceful woman, Cookie.

cookiegal

It is actually the tummy band not the sleeve that I chopped up. It doesn't work permanently, but it does take down the swelling short term.

I even had a tailor turn one into a bra but it's a little akward.

If the fabric didn't cost so much I would line my bra cups with it.

I have to give credit it was the LE at MSK who had the idea for this.

So I hate to say it, because I feel like I will jinx myself, but my arm looks even better.

For one moment my brain got confused and mixed up which arm I was looking at...the shape looked so much better I thought I was looking at my b-9 arm.

(Of course I get my sides mixed up all the time, once when I was giving testimony in court they asked me to raise my hand and I had to look for the left hand L.)

I am still wearing my sleeve, it just seems like now the sleeve can do a better job if that makes sense. 

I am guessing this is what other people see when they wrap? Now I kind of understand what the fuss is about!

sisterinspirit

Ah, thanks for refreshing my memory!

Deb

cookiegal

so I had another set of injections today...The bad news, breast is really not changing much, the good news, arm shape is so much better....it's kind of amazing.

I never really though I would get to see my old arm again! It's kind of emotional.

Still wearing sleeve, I have no idea if I will really have to wear the sleeve forever to preserve the progress, or what.

I have to say I feel kind of excited and lucky and humbled.

The downside is, my breast does not seem to be responding, and has had a lot more tx than the arm.

At some point the risk of continuing to inject it will not make much sense if it doesn't shrink.

cookiegal

So I am taking this week off. My observation is that at the end of the day compression works better and can get my arm smaller, but it's not like my arm stays smaller without compression. Still those moments that it looks better are good.

Breast just isn't changing a lot. Perhaps it swells a little bit less....but no dramatic change like the arm.

Oh well, I am glad I didn't get an infection, and I am glad the arm is smaller and the scar is less fibrotic.

cookiegal

So I am hoping the breast swelling goes down this week. I think maybe it's a tiny bit better.

Curiously this whole experience has make me more willing to wear compression more of the day. It's like now that I have seen my arm look small, I just want to keep it that way.

If the benefit just turns out to be temporary...that would be disapointing but not shocking.

(I mean it is temporary, in that my arm still swells with no sleeve.) 

I wish I could say this made compression less necessary, but I don't think this is the case. I am looking forward to the next measurments.

kriserts

thanks for posting all this, Cookiegal. It's on my favorites list and I'm following these posts.

cookiegal

thanks kriserts...compressing away!

otter

Hi, cookiegal,

I'm also grateful that you've posted this day-by-day log of your experience.  Each of us is different, but it sure helps to hear first-hand what someone else is doing.

You mentioned this, about your results:  "I am still wearing my sleeve, it just seems like now the sleeve can do a better job if that makes sense.  I am guessing this is what other people see when they wrap? Now I kind of understand what the fuss is about!"

I think that's exactly right.  Binney and kira, correct me if I'm mistaken, but my understanding of all this is that we wear a compression sleeve to keep our arm swelling down once it's brought under control with more aggressive treatment.  That "more aggressive" treatment is MLD and wrapping, with a night garment if necessary. The compression sleeve isn't designed to decrease swelling in an already-swollen arm -- that's what wrapping is for.  At least, that was the take-home message from my LE therapist.

My LE never got beyond the "subclinical" (Stage 0) level, so I ended up never needing to wrap -- or, at least not having to wrap unless I wanted to do it or unless my swelling got worse at night (which it didn't).

Thanks, cookiegal!

otter

kriserts

Cookie gal, this isn't what you're talking about, is it?

 http://www.ncbi.nlm.nih.gov/pubmed/22172923

cookiegal

Oh my gosh when I wake up and see how I spell late at night it is kind of funny.

Krisserts, no .

I have been getting small injections of a liquid that is supposed to break up scars and improve nerve function. I also use a cream with a suspension of the same.

It is called neural prolotherapy. Traditional prolotherapy and platelet rich plasma therapy help with pain by creating inflamation, it is sometimes an alternative to elective surgery. (I have had both on the metatarsilitis on my foot.)

This is a bit different, in that the goal is not inflammation. The sugar percentage is much lower, I am told.

It is quite unchartered territory for LE. 

Oh and Otter as always that is insightful. Wrapping made my arm worse so I abandoned it. I think this was because my LE is really high on my arm compared to most women, it doesn't take much to clear my hand and wrist and it's tough to really wrap the top of the arm well. 

kira66715

That's a depressing study: MLD had no effect--not sure what low intensity electotherapy is

http://www.ncbi.nlm.nih.gov/pubmed/22172923 

Clin Rehabil. 2011 Dec 21. [Epub ahead of print]
Efficacy of low-frequency low-intensity electrotherapy in the treatment of breast cancer-related lymphoedema: a cross-over randomized trial.
Belmonte R, Tejero M, Ferrer M, Muniesa JM, Duarte E, Cunillera O, Escalada F.
Source
Medicina Física i Rehabilitació, Hospital Mar-Esperança, Barcelona, Spain.
Abstract
Objective: To compare the efficacy of low-frequency low-intensity electrotherapy and manual lymphatic drainage in the treatment of chronic upper limb breast cancer-related lymphoedema.Design: Cross-over single-blind random clinical trial.Setting: Rehabilitation service.Participants: Thirty-six women with chronic upper limb breast cancer-related lymphoedema.Methods: Patients were randomized to undergo 10 sessions of manual lymphatic drainage followed by 10 sessions of low-frequency low-intensity electrotherapy or to undergo first low-frequency low-intensity electrotherapy followed by manual lymphatic drainage. There was a month of washout time between treatments. Each patient was examined just before and after each treatment. Researchers and outcome assessors were blinded for assigned treatment.Measures: Outcomes were lymphoedema volume, pain, heaviness and tightness, and health-related quality of life measured with the Functional Assessment of Cancer Therapy Questionnaire for Breast Cancer version 4 (FACT-B+4). Carry-over, period and treatment effects were analysed. Treatment effect was assessed using paired t-test.Results: Thirty patients finalized treatment. Comparing the changes in low-frequency low-intensity electrotherapy with manual lymphatic drainage changes, there were no significant differences.Low-frequency low-intensity electrotherapy did not reduce lymphoedema volume (mean of change = 19.77 mL, P = 0.36), but significant reductions were observed in pain, heaviness and tightness (mean of change = 13.1, 16.2 and 6.4 mm, respectively), and FACT-B+4 summaries improved significantly (Trial Outcome Index mean of change = 5.4, P = 0.015). Manual lymphatic drainage showed no significant changes in any of the outcomesConclusion: Although there are no significant differences between treatment changes, the observed trend towards a better health-related quality of life is remarkable in low-frequency low-intensity electrotherapy.

Otter, it has always been my understanding that wrapping/night garments reduce volume and daytime garments maintain the reduction.

But, as so many women don't wrap or use night time compression, and many don't swell at night, then I think the daytime compression--along with muscle contractions while wearing them--will achieve/maintain a volume reduction.

As Jane Armer and the American Lymphedema Framework Project attempt to find evidence for LE treatment, I've heard, they find very few studies out there, so much of what we know/believe is based on clinical experience.

Kira 

Binney4

Kira, I'm guessing the "low-frequency, low-intensity electrotherapy" would be Deep Oscillation, otherwise known as Hivamat. Seems to be gaining adherents among some therapists and lymphers. It's marketed to help with the initial CLT, but the effect is transient and requires the usual back-up of compression, skin care and exercise. Their salespeople are extremely active, at least as far as my radar can detect -- they have a "try it for awhile free, you'll like it!" policy.

When I read studies like this one I always wonder who was doing the MLD, whether one person or many, and how they were trained. So MANY variables with anything relating to LE!
Binney

cookiegal

So I had another set of shots Friday....I go back and forth with trying to figure out what the cost/benefit ratio of this is, and when it is time to stop.

Breast is a bit better, but I have been wearing Belisse and silverwave a lot more, same with the arm.

The bubbly inner part of my arm is a lot better. If this can help the darn blob over my L elbow I will be happy.

Carry on!

cookiegal

I always wonder what is wishful thinking, but my blobby upper arm seems better, and maybe there is some progress on my breast. I saw myself in a mirror today and said gosh I look even.

I have been wearing compression a lot, both on my chest and arm. I really wear a regular sleeve most nights...sometimes I do the silverwave at night. An I hate that grubby, itchy Belisse, but it seems to be helping.

Gosh though I have to wear an extra layer of clothing to cover it up, kind of like the layered look the "Sister Wives" do. 

cookiegal

So I did get measurements yesterday...since this all started I have shrunk about 1 CM in my upper...(which is where the edema is)...Lower was about the same.

Now I will say during that time I have lost 7 pounds so...that is probably a factor.

Right now my LE arm and B9 arm measure the same, immediately after taking off my sleeve. (My arm still does swell without compression)

My breast seems to be better at times, but again at least 12 hours a day in the  belisse (which the more I wear I hate), plus silverwave fabric.

I would be really happy to see the Belisse 2.0 with less velco and a smoother fit.

Also Dr. G explained why she decided to try this on me. I guess in discussing neural prolo with other DO's she started hearing anedotal evideince that people who were being treated for nerve issues also incidentally seeing edema improvement.

I actually felt a lot better after hearing that rationale.

Again these were not BC LE'ers, but that's why she felt it was worth a shot.

Have a nice weekend..over and out

cookiegal

So this is nothing official...but the tops of my sleeves keep slipping....I just don't want to jinx myself...but maybe my arm is smaller!

Marple

Cookie~what hopeful news.

cookiegal

So we are winding down the injections....maybe one last set April 9. Arm remains improved, some slight improvement in truncal in some parts.

I will say this, my post injection site swelling has really decreased a lot. Maybe that is a sign of better drainage.

I am going to start going back for LE therapy soon, with all the healing from the injections I have skipped it for a while.

Interesting side note, Dr. G is in touch with a DO who has seem some benefit with manipulation for LE, he has a protocol and a book, so we have a plan beyond the injections. She did a bit of manipulation on me Friday...It's hard to know how much it helped the LE, but since I have all these shoulder and arm issues I feel it is worth a try. It seems so deal with similar areas as MLD, so perhaps it is a good compliment.

Have a great weekend.

carol57

Cookie, you have been so consistent in returning here to update your progress. Thanks so much for that--it's so worthwhile to learn about your experience.

cookiegal

Thanks Carol. I figure I may be very lucky to be the first person to get this treatment. That's part of the reason I decided to take the risk.

We deserve more than a lifetime of ugly fabric!