Guestbook Number 17

Numbers 401 - 425

September 7, 2004 - October 23, 2004

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425. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
October 23, 2004 at 19:36

Hi Virginia and Terry-Ann

Virginia, cellulitis is an infection that seems to always plague us with lymphedema. It is not lymphedema, but an infection generally (but not always) caused by either a strep or staph bacteria. Because cellulitis causes further damage to the lymphatics and can actually lead to gangrene and necrosis, it is critical that it be treated promtply and agressivelyt with the correct antibiotics.

This is different than cellulite, which refers to fatty deposits, usually in the leg. The discoloration you are refering to does NOT sound like simple cellulite. Has she been to a lymphedema specialist? Sounds like she made need to and to look into treatment that will help with that swelling and discoloration.

Terry - I was born with Milroy's in 1952. There is a therapist in Las Vegas you may want to contact - Cyndi Oritz - Nevada Lymphatic and Vascular Institute - 526 S. Tonopah Suite 120 Las Vegas, NV 89106 702-897-0841 or 702-968-2102 -

Let her know I suggested you call. She is excellant and may be able to come up with a treatment plan that will work for you. Sounds like we have been fighting Milroy's for the same amount of time. Please do feel free to email me also.

My Best to Both of You Pat O'Connor Lymphedema People http://lymphedema.omno.org

424. Terry-Ann Springer terryspringr@hotmail.com
Ls Vegas , U.S.
October 23, 2004 at 16:12

I have had lymphadema all of my life, I am now 53 yrs old. The treatment I have been recieving are not working. I have had a pump for about a year now and they tell me that it is the wrong one. My insurance may not cover the right one. I have had physycal therapy every 6 months or so to get the system to open up. I have my legs wraped up all of the time. Other times I have my special stocking on my legs. They hurt so bad all of the time. I am becoming very weak, at times I have to find a place to sit before I fall down. I am at wits end at this point. I have been told I also have Milroy's Disease. If you have anything that works for you please let me know. I am tired of being in a reclining position when I am not going on with my life. Thank-You. Terry Springer

423. Virginia Wolfe virginiagranmom@comcast.net
Indianapolis, Indiana , USA
October 23, 2004 at 07:34

Please could you answer a question for me? Is Cellutis the same thing as Lymphedema? I am interested in finding out as much as possible about Celluitis. My best friend has it in her legs from mid calf down into her feet. Her legs are purple & the swell a lot. I try to help her as much as I can, but do not understand this illness. Could you either let me know more, or give me a website that I could find out more. I typed in Cellutis of the legs and they sent me to your site. Please let me hear from you. God Bless, virginiagranmom@ comcast.net or virginiagranmom@cs.com. Either address is fine. Thank you so very much.

422. Dean F. Johnson Dean@rxp.com
Treasure Island Fl , U.S.A
October 19, 2004 at 22:28

I am an 83 yr old who's wife is 68 and had a right leg that was very swollen. Medical test stated that they could not solve the problem and prescribed an air pressure leg unit. the condition became worse and she could not get into genes or slacks to take care of her horses.The Dr's told her if it became to bad she could have the leg removed. I had purchased some magnetic massagers for treating her horses. The unit plainly states its not use on swollen legs due to blood clots. We found no blood restiction in the doctors exams.I started with 15 minutes of magnetic massage and 15 minutes of vigorous hand massage morning and night. This treatment is daily.I reduced the swelling by about 2/3 and she wares slacks and genes and enjoys taking care of her horses and thinks my treatment is greater than the fuel additive I invented.This my not be for every one who has lymphedena but has given new life to a lovely lady.

421. Fitsum Fitsums@hotmail.com
Addis Ababa , Ethiopia
October 18, 2004 at 08:51

Hi Pat

Thanks a lot for your replay and i think you are bussy to reaply our email that is nice God bless you.I had contact with some therapists one of them send me some instruction about self-massage but it is not easy to understand all the step of instruction and also she told me there is a videotape that show Cleary the interaction of self-massage's i am trying to gat this film but unable to gat because of financial problem. Could you please tell me how can I gat this film free from charge. And also could you tell me any Hospital, Clinic or therapist that provide free lymphedema treatment or any organizations that could help people by providing financial support or martial like short starch bandage because here there is no short stretch bandage even it is impossible to gat any physician that consult about lymphedema.

Looking forward to recovered your reply.

Sincerely,

Fitsum

420. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
October 15, 2004 at 15:35

Hi Fitsum

It must be terribly frustrating for you not being able to get the treatment you need. There are things you can do though that can help. The page below wll provide instructions on how you can do self leg massage that can decrease the swelling. This may take time to learn and willl require consistant self treatment. After each treatment you will want to wrap your leg in compression wraps to keep that swelling down. Decreasing the swelling will also help with the pain as well. Eventually you will want to get a leg compression garment. These are all available over the internet.

My very best to you - and wish you much success.

Pat O'Connor - Lymphedema People - http://lymphedema.omno.org

419. Fitsum Fitsums@hotmail.com
Addis Ababa , Ethiopia
October 15, 2004 at 12:13

Hello every one

My name is Fitsum Negussie from East Africa .I am 25 years old male college student. I had have lymph edema for the past 15 years . My lymphedema is left leg lower extreme and secondary. I do not have any idea about my problem untile I am 21 years old but my family was trying to help me but they were also not had any idea about my case. Some Hospital Here told me about lymph edema but there is no any help here in Ethiopia even in Africa and I also cannot afford to pay my treatment cost in Europe or any other place.

Now my condition is not bad but the swelling involve all my left leg and become developed and painful. I know more about lymphedema by reading some books but I cannot help myself and also I cannot gat any help because of my financial problem. I am asking you in the name of God to help me to gat my treatment or helping me in any other form.

I appreciate any one that could help me or suggestion me because I am living with out any help for the past 15 years.

Sincerely,

Fitsum Negussie

418. Cheri Hoskins cheri@healthtronix.com
Dallas/Ft Worth , US
October 8, 2004 at 15:31

To those of you who have been denied disability especially for lower extremity lymphedema, keep fighting!!! I have patients who have won the disability battle. Insofar as the statement that lymphedema does not prevent you from standing in one place for long periods of time. This is soooooo wrong and can be fought with the help of your therapist. One of the preventative/precautions for lower extremity lymphedema is sitting or standing for prolonged periods of time. Please don't stop trying, you will not only be fighting for yourself, but making a difference for all. We need to continue with these battles so that lymphedema is taken seriously and our patients can get everything they need to improve their quality of life.

417. La Shawn Denise Byrd lashawn.byrd@att.net
Gastonia , US
September 30, 2004 at 19:39

I am 26 years old. I was 13 years old when I was first diagnost with lymphedema. No one knows how I got it. I'm adopted so I don't know if it's hereditary or not. Growing up was very hard on me because I was always teased in school. I spent most of my teenage years in and out of the hospital. Now I have a 8 year old daughter & my main concern is that I don't know if she's going to have the same problems that I have. If so, I don't want her to go through what I've had to endure. I can't hold a job because I can't stand for excessive periods of time. I can't receive disability because they state that lymphedema doesn't affect my ability to stand for long periods of time. So really it's like I'm in a no win situation. Just recently I started going to a doctor that specializes in lymphedema. I'm so thankful for this site. If there is anyone that could give me some helpful tips, please let me know. Once again, thank you so much.

416. Sharon Collyge pcollyge@yahoo.com
Dallas, TX , United States
September 27, 2004 at 01:36

My aunt has one very large leg and one normal leg, and has had this condition for many years. I believe she has lymphedema. She has trouble finding any pants that will go over her leg and be comfortable. Does anyone out there have any tips for me to help find her some pants, any particular store to shop or place to shop online? I live in Dallas, Texas and she lives in Springdale, Arkansas.

415. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
September 20, 2004 at 14:51

Hi Carol

There is a genetic test that can determine if your daughter carries the gene. But, just want to encourage you in that I also have a brother and three sisters - and none of our children have lymphedema, nor has there been any sign in their children(next generation). The gene responsible for lymphedema does not always express itself in the next generation. It may skip one or even two. The best suggestion is to just keep a watch - jump on it quickly if there is even the slightest sign. Would be willing to bet she will be just fine.:-)

Deborah, thanks so much for your kind words - will be looking forward to your post. -

Pat O'Connor - Lymphedema People - http://lymphedema.omno.org

414. Deborah Klinkner gjklinkner1@juno.com
Lancaster, Ca. , USA
September 20, 2004 at 14:34

Hi Pat, & all guestbook visitors,

I appreciate your response & reference to a local Lymphedema MD at UCLA.

It is great that everyone with a computer & Internet access has the opportunity to find out this amount of information on lymphedema. This site gives great information regarding lymphedema & the forum that you moderate "lymphedema people" is a great place to get knowledge & interact with people who live with it daily.

I am glad to get the encouragement and support for the fact that I am on the right path for helping my mother deal with her lymphedema of both legs after her vulvar cancer surgery. I need all the information I can get since my mother only wants to hear what her oncologist wants to tell her. I feel much more confident that I am correct in insisting immediate help for her & will stand up to her Dr if necessary. It's also good to know what can happen if it is not treated in order to get my mom to take action, not the way she handled her vulvar cancer with excuses as to why she couldn't take care of it sooner. In putting together all the information I have gathered so far, it is good to know what to expect out of the therapist so that an interview can be done to know that they will be preforming the appropriate therapy necessary to treat the lymphedema.

I have done quite a bit of searching the internet for information & when I find many sites with the same information, I know that it is the most current treatment options for the condition. It is also a great way to get out of your own backyard & expand knowledge from what can be accessed locally. I find it amazing how much my world can grow by reading about the experiences that other people have while handling similar situations that my mother is experiencing.

Sometimes us relatives need support like the person who has the lymphedema. Besides it is good to hear what others are feeling about their experience. I can always learn from others, expanding knowledge & understanding. That can't be done by staying in my own little world. With any chronic condition, like my migraing headaches, it is important to understand the condition & what experiences others have with the same thing.

While searching the Internet I found a site for Ultimate Health Center that has an online LymphBooklet which is very educational. I will post a general description on the forum "lymphedema people" with the path to it. Maybe others will find it as educational as I did.

Thank you Pat & everyone for helping to educate me with your sharing, Debbie Klinkner

413. Carol Bourne carol-bourne@tiscali.co.uk
Staffordshire , England
September 20, 2004 at 11:31

Hello fellow sufferers! Only found this site today and it reduced me to tears to find I am not the only one who has primary lymphedema. I have had this condition since I was 16 - I am now 44 and there is no change. My mum and brother also have this condition, but not as extreme as my own. My GP told me as a teenager that I had Elephantitis and that it was a 'womans problem' with no known cure and that I just had to 'get on with it' I have suffered with an inferiority complex about my body since this time. I have swollen feet ankles and lower legs, the right leg being the worst. Over the last few years I have had regular sessions of accupuncture and this appears to have had a positive effect. The swelling is still there, but I maintain a softness of the legs for longer periods and it certainly helps my self image. My main fear now is for my 10yr old daughter. Does anyone know if any tests can be carried out to see if she will suffer the same fate? and if caught before onset, is there anything medically that can be done? Please help me to help my daughter if anyone has any answers or advice.

412. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
September 18, 2004 at 12:45

Hi Deborah

Welcome to the guestbook! I can't imagine the nightmare situation your mom must be facing. Quite honestly, my very first thought is that this doctor is clearly out of his league and needs to be incontact with someone who has much more extensive experience in lymphedema. From the way it sounds, he has none - by the way most oncologists don't have a clue about this condition. My oncologist, who is board certified in several subspecialties actually admits it. I hate to say this, but I can not imagine anyone starting lymphedema treatment until the surgery wound is healed, and packing is not going to solve the problem. I need to say, I am not a doctor - but I have lived with lymphedema for 52 years - not much I haven't seen. You need medical reinforcement. Since you are in the Los Angeles metro area, I would recommend trying to get in contact with Dr. James P. Watson. He is a plastic surgeon at UCLA and is reported to have extensive experience with lymphedema. Here is a url - Plastic Surgery - you may have to cut and paste this into your browser. Don't take no as an answer from your mom's doctor. Demand, insist, jump up and down whatever it takes!! This situation is simply out of hand and there is no excuse for her doctor NOT to get help from an experienced lymphedema doctor. My best to you both - many prayers for your mom. Pat O'Connor - Lymphedema People

411. Deborah Klinkner gjklinkner1@juno.com
Lancaster, Ca , USA
September 18, 2004 at 11:16

Hi, My mother was diagnosed with stage III vulvar cancer last year. She went through the Chemo & radiation in order to make the cancer operable. The surgery was performed 3 months ago. The tumor was removed along with the cancer that spread to the anus & all the groin lymph nodes both left & right side. The edema started with the radiation & immdeiately after the surgery it progressed to stage III lymphedema. The groin incision has not healed yet & none of the drains inserted were sucessful so the surgeon resorted to packing the incision site. There is so much fluid that it gets absorbed by the packing, then runs down the legs. Her surgeon has never talked to her about the treatment of the lymphedema. I did research over the Internet because I sensed that she was having problems with this. This research pointed to the fact that she is experiencing Cronic, Secondary Stage III lymphedema in both legs. My feeling is that she needs to start the lymphedema treatment now rather that waiting until the incision is completely healed. Is it possible that the treatment may help heal the incision on top of treating the lymphedema in both legs? I am trying to accumulate supporting data for the therapy to provide to her surgeon so that when she askes him about it he will be less likely to reject her information. He may be familiar with the necessary therapy, but then why would he not have discussed it with her before now? I would appreciate being pointed to any research information that is available to support beginning the treatment as soon as possible. It may be necessary to have all the amunition available to give the surgeon in order to get his support. Thank You, Deborah Klinkner

410. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
September 17, 2004 at 14:35

Hi Joanna

Welcome to the Guestbook!! Go up to the top of the page and click on FAQS about treatment. It's a great article on lymphedema treatment written by a top notch therapist by the name of Cindi Ortiz. If you need further information, you can find it at - http://lymphedema.omno.org/thesite/lymphedema_treatment_options_revised.htm - your mom can receive treatment that will help her and will help prevent some of the complications she is having. You're right, amputation is NOT the answer and there is no reason she should have to face this. Let us know - we are all here for you both. Pat O'Connor - Lymphedema People

409. Joanna Yeomas joannay30@comcast.net
Rochester , usa
September 16, 2004 at 19:43

My mom has SEVERE lymphedema. Initially she thought it was just cellulitis. It has gotten progressively worse...due to poor management and lack of medical knowledge about lymphedema.

We are desperate for treatment options! Amputation is NOT an option. Her lymphedema is to the point of her needing to be on disability due to impaired mobility and limb deformity(although she's been denied disability). She has had surgery two years ago for non-malignant fatty tumors growing in the affected leg. Would the fatty tumors be related to the lymphedema and vise-versa?

Please send suggestions for treatment options!!! Thanks to all who have listened and responded to my desperate plea.

408. Pat O'Connor lymphedemapeople@aol.com
Atlanta , USA
September 16, 2004 at 14:36

Hi Nancy - There are actually all kinds of exercises you can do with lymphedema. Here's a link with some info - http://lymphedema.omno.org/thesite/lymphedema_exercise_excercises.htm - you probably will have to cut and paste. Weight lifting with minor weights should not present any problem, just use prudence. As far as diets goes, after having lymphedema for over fifty years, I am not convinced diet is that big of a deal. A normal healthy diet should suffice. The most important thing on diet is in keeping weight off as it further strains the lymphatics. Also, I am not one who believes that totally staying off caffeine is going to make that much differance. If you drink enough coffee or colas (with caffeine) that causes trouble for your lymphedema, your kidneys are probably going to go first. Just continue to do all you can, use common sense and enjoy life and your activities. Pat O'Connor - Lymphedema People

407. nancy hunt nhunt@columbus.rr.com
columbus , usa
September 15, 2004 at 22:22

I am 47 and developed Lymphedema in my left arm after breast cancer surgery last Jan(2004). I have been to a lymph. therapist and have learned how to do stretching exercises and drainage massage. I do these daily. I also wear a compression sleeve and glove during the day and a Reid sleeve at night. The Reid sleeve really seems to help but during the day my arm fills back up.I am a very active person, loving to exercise all the time.I hate the way this condition has limited my activity and taken away some of my enjoyment. I have started running again and do some light weight lifting. I run 5 miles every other day and walk the others, thinking it is better for my arm. Does any one have any tips on exercising with lymphedema. Is weight lifting ok and how heavy a weight? and does diet play a big part? I don't consume any caffein, but I do drink alot of decaf coffee. Is this bad for it? I would appreciate any comments. Thanks for listening!

406. Jillian Stanley jls2world@hotmail.com
Sacramento , USA
September 14, 2004 at 23:40

I am happy to have found your website and look forward to reading it thoroughly (have just printed out the pages). I have secondary lymphedema of the left leg and genitals resulting from surgery (for cervical cancer) 20 years ago. After physicians discounted the problem or didn't know what to do, I stopped going to them (I didn't have health insurance, anyhow). For a long time I couldn't find information, even on the Internet, so I am glad to find several websites with information now. I hope to have health insurance soon and to be able to do something about my problem.

405. Pat O;Connor lymphedemapeople@aol.com
Atlanta, GA , USA
September 12, 2004 at 00:08

Hi Charity

My heart goes out to you.. can feel your pain and frustration. But I really want to say - don't give up and don't accept what the doctors say about "there is nothign that can be done." THERE IS my friend. First, I want you to write Amy. Amy is a dear person, a member of Lymphedema people and has been through so much with weight and lymphedema. Let her know I told you to contact her. Her website is: WLSandyou. First, make the doctors tell you what exactly they are going to do about the hematoma. Second, see about getting a referral for manual decongestive therapy. This is a treatment for lymphedema. Wearing the stockings without MLD is going to be of no value. you should see the loss of fluids that Amy had when she started MLD. Amazing!!! Thirdly, make plans to do someting about the weight. Amy can give you ideas on that. There is hope, my dear friend and you are NOT alone in either your struggle or your pain. Contact Amy and also please feel totally free to contact me at the email address above. I will look forward to hearing from you. You are so young and have so many wonderful years ahead of you.... go for the gusto and grab them!!! Hugsssssss - Pat O'Connor Lymphedema People

404. Charity cher_292004@yahoo.com
Cedar Rapids, Iowa , United States
September 11, 2004 at 01:00

I am 29 yrs ols and 6 yrs ago i feel down a flight of stairs. i have always been a large person my whole life but never any health problems. Well i developed cellulitis due to the fall and when i fell i landed all my weight on my left leg. i have been hospitalized twice in 6 yrs with ti and have devopled it once in my stomach and i dont even know how i got it there. I weigh 600 lbs and it is horrible. my lleft laeg is 5 times the size of my other one and my stomach is swoolen and has the texture of an orange. a thousand lil dents in it. the doctors have made me compression stocking but they do no good bc once the sweeling goes down a lil then they fall of and r to big.I fell like im dieing im so fat and have no idea how to lose it. ihave no willpower and all i do is sit all day on the couch, everything makes me out of breath and the more exercise i get the bigger my leg swells and hurts. when i fell the doctors said i had a hematoma which is a big blood pocket that is trapped between the skin and muscles, they tel me this isent dangerous. so along with the huge bump i have lympedema. the doctors have only tried the stocking. they tell me there is nothing else the can do, that all i can do is lose weight.i now do no treatment bc the stockings dont work and i have no idea what to do. My leg looks discusting and almost hangs to the floor from swelling. i am so depressed and sad bc it affects my everyday likfe and im so scared of falling bc of it getting worse if i do please respond please

403. Cathe calfrey49@yahoo.com
Wilmington, NC , USA
September 10, 2004 at 21:48

Pat,

Thanks for the information. I have not seen a Kroger store in my area, but I have friends who have them near. I will ask them to buy and mail the lotion to me. In the meantime, I will look for those three ingredients. By the way, I just treated my legs with castor oil last night. The cellulitis that was beginning has subsided already. The castor oil needs to come from a health foods store--I get a 16 oz. bottle. It is all natural and works so well. Try it--all of you--if cellulitis is a problem you face. I'm so glad there is this website. No one, who doesn't have lymphedema, understands like we do.

Cathe

402. Pat lymphedemapeople@aol.com
Atlanta , USA
September 7, 2004 at 07:53

Hi Cathie

Don't know if they have Kroger stores over there in Wilmington, but I found a lotion that works realy well for me. It's actually a store brand too (costs half as much as the name brands). Kroger brand "Aloe" - comes in a tall green bottle. Wound clinics and even patients with burns are treated with lotions that have one or all of these three ingrediants: zinc, vitamin E and aloe. My legs were horribly dry - to the point of cracking and weeping until I used this stuff. It you can't get it, look for a lotion with those three things. best to Ya. Pat O'Connor - Lymphedema People

401. Ann jbo1024@earthlink.net
McDonough , USA
September 7, 2004 at 00:15

I am 45 years old and suffer with lipedema and have done so for all of my life. I was not correctly diagnosed with this until about 2 years ago. I know and have known the frustrations of dealing with this. I have a normal upper body but my legs are very distorted due to this condition. I have not been able to wear shorts, capri pants. or a swim suit out in public (unless at the beach where, as my mother says, "I won't ever see those people again, so who cares". My pride matters a whole lot to me and that is why I am so self concious about this. I have the most wonderful friends and family in the world who never and have never let this condition stand in the way of our relationships. I wish everyone else could be so lucky. I am overweight and need to lose about 75 pounds, if for nothing else, to prevent other health issues that could arise.

It is hard to find pants to wear due to the fact that my waist is so much smaller than my hips and legs. This presents a BIG problem, but one that I have learned to deal with. When life gives you lemons, you learn to make lemonade real quick!!

I would love to hear from others with my problem to compare notes to see if there is anything I don't know about this disease that could be of help to me or others I may come in contact with.

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