Guestbook number 23

Numbers 551 - 575

May 15, 2011 - October 18, 2008

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575. LymphedemaGirl www.lymphedemagirl.blogspot.com
Copenhagen, Denmark
May 15, 2011 at 21:54

How devestating it is to see how many fellow lymphers are out there struggeling with this mysterious condition, and how sad it is to learn just how ignorant doctors all over the world are about this!

I am 38 years old, and I have Primary Lymphedema in my right leg, it started two years ago when hurting my back by lifting a heavy shoppingbag in an unfortunate way. I get MLD and wrapping from a lymphedematherapist and at home I do wrapping and self MLD. I find that jumping on a mini trampoline keeps the tissue soft and when I started jumping I noticed the swelling went down a tiny little bit. I think it is important to excercise the lymphfluid.

I am finding it dificult to deal with the emotions of Lymphedema and adjusting to having a cronic illness, let alone feeling like a freak with my swollen leg and horrible compression stocking. I often feel like I am the only girl in the world with this, but I am not.

On my blog I write about my life with Lymphedema and my attempts to get better.

574. BETTE
WILSONVILLE
May 5, 2011 at 21:44

have had lyphadema in left arm for 15 years and kept it under contrl. now have broken lower left arm and swellining is out of control. any advice is welcom.

573. Joan
Lincoln
April 5, 2011 at 04:00

I have Primary Lympheodema and would like to hear comments and treatment, and views of other people who suffer with it.

572. Name and adress information are known to the moderator
March 19, 2011 at 16:07

I wanted to share with fellow patients my recent experience using activated carbon and homeopathic milk thistle and nux vomica.
I finally began to lose a stubborn and rather sudden increase in swelling...I wasn't being able to lose. My doctor agreed with my 'experiment'. Apparently my reaction was to bug spray ! Perhaps it will work for others with allergies.
I have lymphedema of both legs.
The swelling increases,as you know, due to several known factors such as heat or airplane flights etc. In this recent episode it was due to an allergic reaction to a spray, commonly sold for domestic insect control. My usual swelling increased . I went from a size 12 to 16 !
In my country the activated carbon is sold at drugstores, without a formula. Milk thistle and nux vomica are available at natural health stores. These products are taken by mouth. Milk thistle is an excellent liver cleanser.
Although I normally have mostly vegetarian diet ..low salt, low sugar ,low fat , as recommended. I consume white meats occasionally (I developed lymphedema in 1996 concurrent with a cancer ). I add this because as you know vegetarian diet is of easier digestion... and I had managed my weight.

571. J. Webster
Houston
October 23, 2010 at 23:36

I am a LMT certified in manual lymph drainage. I work at Realis Medical Spa in Houston Texas. We have a great new treatment for lymphedema with great results. Call for more info and a free consultation. 281-955-5282

570. Susie
Winsted
September 24, 2010 at 16:20

I had surgery on Feb.23 2010 to remove 2or 3 swollen lymph nodes under my right arm. All came back safe and sound. Except now I have Lymphedema of my right arm/hand/fingers. I also gave cording in my arm. I had to have my underarm drained 3 times with ultrasound and needles, Blood clot, cellulites.All was very very painful!!! Doctor\'s know NOTHING at all about Lymphedema and make me feel like I should get over it..... It is very painful to deal with everyday and the littlest things in life are so hard to do now. I feel so alone and cry all the time. Why are the people in our medical field who we are suppose to turn to for help when there is a problem so cold and dumb about Lymphedema?????? Never heard of this before in my life until after my surgery. My heart aches for everyone out there that has this.

569. Jan
Pawleys Island
September 18, 2010 at 02:38

I have Lymphedema - never had cancer but just developed probably from several surgeries, medication I take for a kidney transplant, etc. Would like to know how others are handling this disease.

568. Courtney D. Harrison
Birmingham, AL
August 19, 2010 at 06:27

I am a registered occupational therapist and certified lymphedema therapist. I am available to treat patients in their homes and outpatient clinic setting. I have decided to devote my time and energy to individuals with lymphedema in order to rebuild their lives.

Individuals in the Birmingham or surrounding areas may contact me for a therapy appointment or further information on lymphedema.
Courtney D. Harrison, MS, OTR/L, CLT
Certified Lymphedema Therapist

567. Bill
Long Island
July 20, 2010 at 00:32

Does anyone here in the NYC area/vicinity know of a good Dr.(infectious Disease Dr.) That specializes/well informed about cellulitus infections Lymphedema patients?Email me.

566. C
Virginia Beach
June 1, 2010 at 02:33

Myself a Lymphedema subject, exacerbated by acute Cellulitis (caused by a strep infection -- itself the direct result of a wrong-diagnosed radical cancer surgery involving excision of nodes and tissue -- (and) for which assessments had been denied), I suffer effects of secondary stage II of the left leg which extends throughout the ankle/metatarsal foot and back to below the knee. This is with neuropathy and what appears also to be an advancing fibrotic condition. Since an unneeded 2006 surgery state university hospital of Virginia at Charlottesville (UVA), I experience grotesque swelling which, even if searing and constant pain were not a perennial constant, vastly prevents placement of any conventional footwear.
Researching this condition, and also experience of its primary (inherited) form, I have learned much with respect to how patients are mishandled -- and I might say, also USED for financial gain: in the United States, regardless it stage or advancement, Social Security expressly denies benefits for treatment for most peripheral vascular disease. With certain caveats (compounded conditions which themselves must qualify), it specifically excludes treatment for Lymphedema. Widespread physician apathy -- equating to the sole pre-planned/accepted form of institutionalized malpractice I have witnessed -- because victims can, with adequate treatment specific to THIS condition, often live long enough to pull resources from precious administrative budgets. This is far less likely when they receive sufficiently consistent poor, or, even more likely, totally absent care (hence physician apathy). Any research, announced or projected, appears to have as obvious first objective, the goal-driven mission to both strengthen and continue this policy.
This you can be quite sure of: CDC does not inspire state mandates to require cause of death to list Lymphedema, regardless a role in causation. It is otherwise treated exactly as a substance -- and to that end, one that will place the onus nowhere but on the patient.
I haven\'t mentioned stigma against those with the consequence/s of gross physician misconduct and who then present to others hoping for needed treatment. This is a whole separate issue....or is it indeed when even certified therapy practitioners, on establishing history/details, say they will phone back when they can fit you in???

565. Dayal
Essen
May 21, 2010 at 22:06

Lymphedema,Bandaging,Comfort,Result ,Look at www.softcompress.com If it helps, one should be thankful.

564. Yvonne
Hanford
December 30, 2009 at 23:28

Would we have done the surgery if we would have known we were going to deal with Lymphedema the rest of our lives? Not sure of my answer to that question, but i have asked it before, can\'t live in my past and my choices. I must now live in today, what I can do... I try to have a positive attitude, exercise, drink water instead of sugary drinks, not too many sweets unless it is natural and avoid processed foods, I have done well. For those of you who had no surgery and just one day had lymphedema, wow. I do pray everyday that JESUS will heal me. It is okay if you don\'t belive the most important thing is that I know HE will heal me, I will believe for my healing until I take my last breath, HE has ordered my steps and I am sure HIS word is forever settled in heaven and HIS word does not lie. I will keep the faith, how about you. It is a personal choice and mine is I will stick to JESUS. GOD bless you and and may HE bring you the healing that each one of you need.

563. Vickie
Orange
October 7, 2009 at 11:20

Hello to all,

I have had lymphedema probably since 1984 after a difficult pregnancy where I swelled so badly and was nearly toxemic. Most women\'s ankles swell during pregnancy and mine did too, except after I had my baby the swelling never left. It just got worse over the years. I have been told I have PAD, veinous insufficiency, stassis edema, and one doctor recently Looked at my legs and feet and told me I needed to have lap band surgery for them. One night I was watching TV and heard something about lymphedema. I then checked it out on the internet, saw photos of lymphedema and realized that THIS was what I had! Yes, I had to literally diagnose myself. Later I went to Houston to a lymphedema treatment and wound center and found out that I was right. Problem is, I live about 100 miles from the center which is a real problem. There are hardly any clinics or therapists around locally for the majority of lymphedema sufferers.
After I told my doctor about what the lymphedema center had said, he told me, \"Honey, edema is edema.\" He continues to give me fluid pills. If you try to enlighten anyone around here it just falls on deaf ears. Not only are most doctors unaware of the signs of lymphedema, but their attitudes toward it is terrible. This is costing sufferers dearly. Please pray that soon education concerning this very serious condition will be much more wide spread, and that there will be help for it in local places instead of just mostly major cities. Lymphedema is the stepchild of medicine it seems. They don\'t realize how serious or debilitating this condition is. People can get sores, cellulitis, lymphangiosarcoma, sometimes have to have a limb amputated and in some cases, even die. Like so many of you, I too, have gotten so frustrated with the medical community. God Bless all of you and I certainly wish you the best with this problem. I am thinking of trying our friend\'s suggestion about the Bromelain and B complex. For some of us that live too far out to be able to get any treatment, we had better be researching and doing all we can to help ourselves because it may be awhile before the medical community will finally have the ears to listen, and the knowledge to act.

Blessings to all of you,
Vickie

562. Nicole Wipperfurth
West Allis
September 11, 2009 at 00:04

Lymphedema Now Has a Presence on LinkedIn

LinkedIn has become the forefront of social networking, especially for more than just keeping in touch. Upon realizing there were numerous groups on health, breast cancer survivorship, occupational and physical therapy, Solaris realized that there was no place, specifically, for Lymphedema patients or those helping patients to congregate.

For this reason, Solaris has created Lymphedema awareness groups on LinkedIn. They can be found at these links:

National Lymphedema Awareness Group

Canadian Lymphedema Awareness Group

International Lymphedema Awareness Group

We hope to open up lines of communication among patients, Lymphedema therapists, fitters, durable medical equipment suppliers and more. We encourage you all to join your corresponding group, to start discussions pertaining to Lymphedema and to post latest news on Lymphedema and related topics!

561. Amy
Amarillo,TX
June 5, 2009 at 22:30

I was recently diagnosed with lipedema. I was not diagnosed by a DR. but by a lymphadema theripist. She wants to start compressions right away. Should I get a second opinion from A Dr.? Don\\\'t I need to get some blood work done first? Help?

559. Betty
St. Joseph
May 20, 2009 at 00:36

Just found the site May 19, 2009...have not been diagnosed yet but suspect Lipedema. I have had since puberty. When I was in school my knees were as large as the other girls waistlines. Very embarrasing. Painful fat, pain when blood pressure is taken, doctor has no answer for it. Legs are becoming more feverish as I am getting older and pressure when wearing jeans cause discomfort. I\'m glad for the support on here. Thank you one and all for the information and discussion.

558. Tracey
Independence
May 3, 2009 at 05:59

I am 39 years old and have been told that I have lymphedema in my stomach due to having cellulitis numerous times. I was told at first that it was a massive tumor, but now they have changed their minds. I don\\\'t know where to find help to get this treated or if there is even a treatment for it. the mass is said to weigh at least 100 lbs. In less than 2 years , I have lost close to 230 lbs. However this mass is very hard and has not gone down any. DOes anyone have any ideas as to where I can find a place to get treatment for this , or if there is treatment besides surgery? I am a high risk for surgery, and where I live which is in the general area of Kansas City Mo. there is no place here that treats it. Any advice would be so greatly appreciated.
Tracey

557. Jill W.
Roseville, MN
March 30, 2009 at 01:06

I found this board by accident, because my mother who is 54yo, is going in to have her left leg amputated this week after a 2 year ordeal. They haven\\\'t really identified exactly why the lymphedema, but despite 1.5 years of dealing with pain and many many many therapy sessions, her L foot had become fibrotic. They were going to try to do an achille\\\'s tendon lengthening surgery, but her foot (which is like permanently pointed due to lymphedema and non use) is so fibrotic that the orthopedic surgeon said even if they did the surgery, she still probably would not be able to walk on it. She has been through so much...having to deal with the pain, not being able to drive or even go downstairs in her own home for 2 years. When the MD said amputation was an option and that it would be the \\\"fastest way to getting your life back\\\", she did a ton of research and many second opinions later, she decided to amputate her L leg (below the knee). It is a bit different since she is deciding to have it amputated, whereas most amputees don\\\'t get a choice. So the mental preparation is different I think, but no one knows what she\\\'s gone through but herself. I just came on this board to see if there was anyone else who had lymphedema that fibrolyzed, or anyone who had an amputation as a result of lymphedema. They do amazing things with prosthetics these days, and I\\\'m sure that it will give her a certain degree of freedom that she hasn\\\'t had in awahile. Thanks for letting me vent!

556. Becky Brake
Leesburg, Florida
March 9, 2009 at 04:22

I have lymphedema in my abdomin, I have apparently had it since 1949 after
abdominal surgrey, I have had 5 occurances of what was diagnosised as cellulitis of the abdominal area, the last to occurances have been within the last year with the last one in Feb. of this year, and to date this has been the very worst occurance. I was finally recommended to a infectious disease doctor at Mayo Clinic and he was able to correctly diagnosis me as soon as he looked at my abdomin, he assured me there is no cure and there is nothing that can be done, his only recommendation was to wear an elastic binder (like you wear after stomach surgrey), this will keep the fluid from accumulating in the abdomin and keep the swelling and inflammation down. I have been wearing the binder for six days now and the difference in how my abdomin feels is amazing. Is there anyone else out there who has the lymphedema in their abdomen? Please let me know!

555. Message from Kathy Bates (Kathy@austinbeautyandhealth.com)
I\'m trying to get the word out that I\'m having some significant success with clients on an as yet unconventional approach to secondary lymphedema.
If anyone in the Austin, TX area is interested I think I can easily say that we are in pre-study phase.
I need bodies with lymph issues to prove theories!
AFTER I have interviewed to see if I think the candidate is suitable I could arrange to have them speak to current clients if necessary.
I do NOT take insurance. I\'m simply not willing to get paid half the money and wait 90 to 120 days to get it AFTER harrassing the insurance company.
I\'m a licensed massage therapist so if your insurance will pay for that then you can file your own claim.
Looking to help and excited about what I\'m seeing thus far.

554. Geeta Bissoon
Rousillac
January 14, 2009 at 04:35

I joined this network when it started in February 2000 (refer guest book signed in on 18/02/2000 and I have been a lymphedema patient since 1979-primary lymphedema .I had a lymphshunt in 1986 done in the UK by Professor John Edwards (Harley Street) with some relief but my right leg is still swollen and I use Sigvaris stocking from John Bell and Croyden in the UK since 1979.I would like to become involve in educating people about lymphedema since its a struggle everyday and i am now 49 years and dealing with it comfortably.Please feel free to contact me at rani60@msn.com

553. amber
mesa
December 19, 2008 at 09:09

Hi Im 20 years old and i was just told that i have Lymphadema. Its my right leg. it all started after i came home from a vacation i just thought something bit me so i just waited to see a doctor. well after about 3 weeks i went to the doctor and they just brushed me off said \\\\\\\"that might be just the way your leg is\\\\\\\". I thought there no way that it could be all of the sudden like this. so i went to another doctor this one said that it is lyphadema. I want to know what is there that i can do because i was basically told this is what i have and that\\\\\\\'s it.
Please and info.

552. sandra
mt.pleasant
November 13, 2008 at 02:20

FYI. There is a new surgical procedure being done right here in Charleston, SC. They are taking lymph nodes from a healthy area of the body and transplanting them to the area with lymphedema. For example, I have lymphedema in my right leg. T he surgeon took lymph nodes from my left arm (axillary nodes)and transplanted them in my groin area of my right leg. There is a surgeon in Paris that has done thousands of these over the last 20 plus years. She has had great success. I just want everyone to know about this exciting new surgery. I met another doctor in Michigan that is also performing this. If anyone needs more info. please contact me. Hang in there.

Sandra

551. cassandra one_typical_f20022yahoo.com
ashland ky
October 18, 2008 at 20:48

back in november of 2007 i had severe swelling in my left foot and i was never told what it was it went swollen til febuary of 2008 i developed bronchitis and they put me on predinsone the swelling went down, back in july my right leg and foot started swelling i continued to work til september 13th 2008 before going to the dr they have done blood work my sed rate is elevated,my sodium level is a 133 and my chloride level is 100 which the sodium and chloride are low.....the sed rate is 37 which is high.... the doctors are not sure what is going on i have been on antibotics, steroids, and anti-inflammatories seen a thearpists for lymphedema and they put compression wraps on it it helped with the swelling in the leg but not the foot or toes made it worse and now they have had me off work for over a month cause of the swelling and don't want me to walk on it i have to keep it elevated at all times.i have had blood work,xrays and a ct scan and ultrsound nothing shows up.......i have psorasis too, im just wondering if someone can help me and my drs out im not getting paid being off work and not eligible for a medical card cause im not pregnant or have children under 18 at home.......this is a big pile of medical bills going thru all this to find nothing out in return.........PLEASE IF ANY INFORMATION LET ME KNOW.....I THINK IM BEING USED FOR A EXPERIMENT.....

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