Guestbook Number 6

Numbers 126 - 150

September 12, 2001 - January 11, 2002

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Hi everyone! I don't have lymph edema, but have been doing some research on it to try to help another family member who is suffering from it. I started doing the research on my own, because like all of you, the doctor didn't seem to have any answers, just that it was lymph edema. Anyway, I wanted to let you know about a site I found just before I found this one, called the Academy of Lymphatic Studies. It gave me some good information on what le is, and seems to be mainly a center to train therapists in how to deal with le. What I found to be really helpful was their section on finding a certified therapist. I found two in the area I was looking for. Just wanted to give you the site, in the hopes that it can help somebody.

The site address is: http://acols.com/index.html

Thanks for your time, and good luck and God Bless all of you. Karen :-)

149. Steven Young shyoung101@aol.com
Nederland Colorado , U.S.A.
January 8, 2002 at 07:03

After surgery 30 years ago to remove my quadracepts in the right leg as a result of Gas Gangreen, I began to have regular swelling in both of my legs. Finally I have been diagnosed with secondary lymphedema. I have kept my legs elevayed for years, buut now I want to learn what I can doabout this. Steven

148. SueElla Doucet ellaxoxo2001@aol.com
dequincy,louisiana , u.s.a
January 2, 2002 at 03:16

Hello there...
I am a 29 year old female.
I have been a licensed massage therapist for about 7 years now.
I'm married for 10 years and no children yet, although I want some badly.
About 7 years ago I suddenly developed these balloon looking ankles feet and lower legs.
I was able with antibiotics and bed rest to get it under control in one leg,
but the other leg has gotten worse.
A year ago I got a staph infection in the left leg.
It had about 60 pounds of excess fluid and infection.
There were huge blisters, that had to be surgically drained and removed.
The doctors wanted to amputate my leg, but I said no.
Well, It's been a year I had to spent a month in hospital.
I have just found out, that what I have is elephantiasis or lymphedema.
I am finally gonna get the therapy I need..
I have been wrapping it some, because I had the knowledge to wrap it and to massage it.
Although hard to get someone to do it for me.
Everyone pay close attention to this ...
Watsu, I am trained in this and after a weekend of this therapy,
my leg is swelling was almost nothing, but returns in about a week. But hoping to get my pool stup soon, I'll keep in touch.
I'm willing to help anyone needing treatment, since I'm trainded in massage and watsu and lymph.

147. Ruth pjmullen@att.net
Fayetteville , USA
December 27, 2001 at 16:40

In reference to flying and lymphedema - be sure to wear a compression garment, especially if you already have lymphedema. I have flown several times and always wear the sleeve and glove while flying. So far, it has not made matters any worse. I agree with the previous statement that heat definitely makes lymphedema worse. When the temperature outside rises, my arm and hand swell up more. I have found that the Reid sleeve at night, massage therapy and water aerobics have all helped keep it under control.

146. Pat Kiel Pat.Kiel@UtahHomes.com
Sandy , U.S.
December 27, 2001 at 00:26

I was told that flying could make the le worse. Has anyone been on an airplane? I'd like to hear from you. I don't want to give up traveling but I also don't want to cause complications. So far my swelling is not too bad and it's more uncomfortable than painfull. I am hoping to keep it under control. Heat seems to be the main contributor to my swelling. We drove down to Arizona in April and my arm swelled quite a bit. I was able to wrap it and do the massage to get it back down. Does it eventually reach a point where you can no longer get it back down? or if you keep on top of it does it remain manegable? I would love to hear from everyone.

145. Larry Feld lfeld@keystone-auto.com
Brea, California , USA
December 20, 2001 at 01:04

About a year ago I developed a severe case of cellulitis in the left leg. It was cured with antibiotic therapy and 4 days in the hospital. 4 months later I got a relapse in the same leg only this time they found B Strep bacteria in the knee fluid. After antibiotics and a surgical drainage of the site my leg would swell when it was in the vertical position and would return to almost normal size after keeping it horizontal for several hours.

It's now a year since the second incident and my leg is getting any better. In fact, it swells in just minutes and can turn red and painful almost in the blink of an eye.

After many expensive and yes, worthless tests they told me I had lymphedema and I need to wear custom made support stockings. I learned more about this condition from you website than I did from 3 doctors. None of them told me the truth about what I was facing or that I would probably have it for the rest of my life.

I hope those afflicted with this can add their experiences and knowledge and maybe, one day, we'll have an effective treatment for lymphedema

144. Amy Price XianSunshine@yahoo.com
Harmony , USA
December 18, 2001 at 05:26

For the past year I have had my daughter tested for about everything under the sun. The Doctors could not figure out why her left ankle was so swollen. Today while at the Rileys Childrens Hospital we were told that my 9 year old daughter has lymphedema. My reaction was "well at least its not something serious!" and that is what the Doctor let me leave there thinking! No education as to what it is! What will happen! What to do! All I was told is that really is no cure, and that they would like us to come back in 6 months for a check up! Am I ever glad that I decided to look it up! This is alot more serious than they led me to believe! I know have a nine year old that prays every night for her ankel to go down and its not going to, What I am suppose to tell her? She cant wear "cool" shoes because I have to buy two pairs of shoe for her at a time one pair to fit her swollen foot and the other pair to fit the unaffected foot, therefor she is lucky to get more than one pair of shoes at a time. And its sounds like the trouble has just begun. I hate to say but it sounds that shoes are the least of her problems! Well needless to say I need help and prayers! If the Doctors arent going to treat this I will! Any Ideas? Please send emails to XianSunshine@yahoo.com ASAP!! Thank you for your time and your help!!!!! Amy Price

143. Angela aderge@yahoo.com
West Bend, WI , USA
December 17, 2001 at 16:31

I've written before telling you of my primary le in my left leg that started when I was 16. There is a study being done on le, to help gather information, please go to the questionnaire on http://www.lymphnet.org/questionnaire.html. Maybe if we gather enough information, a cure could be found, instead of the doctors just telling you to live with it.

142. Jayne K. Purcell jojapur@hotmail.com
Hutchinson, Kansas , USA
December 16, 2001 at 05:32

I have le in both arms and in my ankles. I have no idea how I got it. I have never had any camcer. I have had le for about 40 years. I took diet pills in 1962 and lost 83 lbs., and that is whem it began. The doctor that diagnosed it as le said it was from taking the diet pills. They had been given to me by an Osteopath.

Besides the discomfort, it is almost impossible to buy clothes that will fit my arms. I have known only one other person that had it. She died recently.

I appreciate this site - it is like a support group. E-mail me if you have any good advice. Thanks.

141. john kelly loftykelly@eircom.net
wexford , Ireland
December 15, 2001 at 13:41

I was diagnosed with Lymphedema of the left lag in June of this wear,I was in Hosiptal in September with Cancer of the bowel and Doctor put me on water tablets frusemide 40mg 1 daly so fare there are taking down the swelling but very slowely. I also use a crame on the leg it keeps the skin from drying out and it keeps it clean today I got the stocking to wear

140. Brazil gcooke@demarest.com.br Brazil
December 4, 2001 at 00:37

I would like to receive information about Lymphedema in Brazil. Please send me whatever you know, I have a real sad story. If you would like to help me, send me an e-mail gcooke@demarest.com.br

139. J Mallory jjmallory@healthmidwest.org
kansas city , usa
November 27, 2001 at 23:46

The last few weeks I have had considerable pain and swelling in my left leg, I finally went to my Doctor who said lymphedema-you may want to wear support hose, and if you are traveling stop frequently and stretch your legs-is anything else new? I left the office thinking no big deal my leg is swollen. Was I wrong... it may not be a big deal to my Doc. but it is something to be concerned about I am swiftly learning. I was given no treatment plan, nothing... just told it is lymphedema..thats it. The more I learn of this discease the madder I am getting in addition to a new Doc. I had malignant melanoma three years ago and have never even heard of this let alone known I could develop this. The more I learn the more fear I feel. I feel I am getting no help from my Doc. Do internal medicine Doctors handle this? Should I consult an Oncologist? I currently am Cancer free and thought all of this was behind me. Is there anything I should be doing as an preventative measure? Why is so little known about this discease and why is it not taken seriously? Unfortunately, when I had melanoma society seemed to have the same ignorance about that discease too. Up until the day I was told my tumor was malignant I was told by 3 different Docs it was nothing don't worry. My diligence in getting a mole biopsied literally saved my life. I am 36 years old and have a whole lot of life yet to live and this will not get me down!!! Thanks for letting me express myself and giving a venue in which to do so!!!!

138. Chelsea Skrobarcek, CLT, cdcpta@aol.com
San Antonio , USA
November 24, 2001 at 02:39

FYI...FYI... For those suffering from primary or secondary lymphedema in the upper or lower extremites there is help...In San Antonio, TX at Warmsprings Rehab, 210-599-2030 ph.# or New Braunfels, Tx at Physical Therapy Unlimited ph.# 830-609-2000...Both facilties employ Certified Lymphedema Therapist's and except most major insurances including medicare...please pass the word to those that suffer, we try by all means to reach those that would benefit from MLD, bandaging, education, and excerise to return function and joy of life...

137. Rhea rhea_lm@hotmail.com
Calgary , Canada
November 20, 2001 at 06:01

Hello, I am writing for my grandmother (nana is what I actually call her). I am trying to find some helpful information and direction to healing her lymphedema. My nana had breast cancer about two years ago and as a result had her lymph nodes removed. (I think that is right) Well she has unfortunatley gained a discomfort in her left arm from this procedure being referred to as lympedema. She has been going to massage therapy, has a "special sleeve" made for her, and has also been using a machine she uses 1-2 times per day. It is quite a concoction, this machine,very uncomfortable and not really helping the problem it seems as this sleeve that expands and retracts with air does not fit high enough or is just not designed enough to work on the highest problem area which is near her shoulder but more underneath her armpit. What I am asking for is any suggestions to alternatives to what she has been doing thus far. Her arm and hand are quite swollen, enough to make her two arms and hands look like completely different ones. If anyone has any suggestions or comments I would, as well as my nana, appreciate hearing from you. Thank you Sincerely, Rhea Malchuk

136. Dr. James Coleman Dr. Coleman@CancerResearchAmerica.org
Louisville, KY , USA
November 17, 2001 at 05:31

Basic to the primary prevention of breast cancers is knowing what are the underlying causes. After decades of research, we now know what are the major causes of breast cancer and fatal breast cancer. With this new information, we have developed a tool for use in determining what a woman must do to prevent a recurrence of breast cancer of its first occurrence.

135. Inge R. IRohslau@aol.com
Patchogue , USA
November 15, 2001 at 21:43

I suffer from Lymphedema in both legs. I've been looking into using a vasopneumatic pump. I would like to hear from others who have tried it and learn about their experiences and whether this treatment was successful for them.

134. Juliet jhaikes@yahoo.com
Birmingham , USA
October 30, 2001 at 15:17

My son, now 3 years old, has primary lyphedema of the right arm. There is no family history of lyphedema so it took a very long time to diagnose him. My comment: If you think it's hard to get treatment, be a child with this disease. I can't find a doctor in our state that will treat Jordan. It's sad. The only treatment Jordan receives is what I give him, and that is only from my limited knowledge of how to treat it. Any suggestions!

133. terrie d. terieface@fuse.net
Cincinnati , USA
October 25, 2001 at 05:47

Hi, I have le in both legs, it is now spreading to my upper thighs and abdomen (but I have not told anyone about that yet). Just got the letter from my medical insurance that they will only pay half of a $10,000 bill and no more treatments (they say the treatments are excessive). I go once a week for manual lymph drainage to a clinic I found using the internet since all of my doctors knew what I had and not a single one knew how to treat it. I received lots of sympathy but no help from any of my doctors. I took two months off work this past summer to get intensive treatment to soften the fibrous tissue in my lower legs...it was great to return to work in mid july with 'ankles'. But it was a short lived victory. I am a customer service rep which means lots of sitting and the past three months have meant 9-12hour shifts. Now I can barely fit in my stockings (which I hate anyway since they hurt) and must wrap everyday. Does anyone use the circaid thing? does it work, hurt etc? My therapist suggest the leg assist but I don't have that kind of money $899 per leg. Sometimes I get scared and angry with this disease and then I realize at least I can walk, wrap and have few restrictions in my life. Well thanks for letting me share my story with you all, it is nice to talk with people that understand.

132. joanna nodaword@juno.com
charlotte , usa
October 21, 2001 at 02:17

Boy, do I feel better after finding this page! I had surgery to remove superficial spreading melanoma on my left calf in November of 1999. The surgeon removed so much tissue that I ended up with 15 big Frankenstein stitches and a leg that looked like a shark took a bite out of it! I subsequently developed lymphedema because of the loss of so much tissue and a lymph node (for a sentinel biopsy). What frustrates me the most is that I WAS NEVER WARNED that this could be a side effect of my surgery!!! I am still furious that this condition was a surprise to me. Can you sue for that? :-) Of course I'm glad to be cancer-free, but I'm still mad. I now must keep my calf wrapped or in a stocking all of the time. I'm 32, have four children and having to deal with this pain and irritation every day is extremely frustrating. The thought of having to deal with this the rest of my life is almost overwhelming at times, even though I'm still at Stage 1 (and will hopefully stay there). Thanks for the ear, and may God heal us all since doctors can't seem to!!!

131. donna dangelou@aol.com
ashland , usa
October 20, 2001 at 04:55

I just found this site. It is extremely helpful. I have had celluitis for 2 years. It got very bad in June 2000, particulary on my left leg. I was very sick, but continued to work. Finally, in mid July 2000, my doctor said I could not work at all. I have had repeated infections this last year. In Feb. 2001, I started le therapy at a local hospital. It did help. But I developed a rash with the wrappyings. I did continue. I then did physical therapy. I was fitted with the stockings and the night time velcro fastener wrap. I have a very hard time getting the tight stockings on. I should mention that I am overweight as well. I have slowly recovered. I went back to work half time in early Sept. 2001. But this week of Oct. 15, I have had my right leg become infected . I have had to see my doctor daily and I get a rocephin antibiotic shot. I also have my legs wrapped in unna boots. I am very fatigued. I do not know if I can continue to work. But, again I am grateful I have found this site.

130. Jean Daley DaleyGringo@aol.com
Oglesby , USA
October 19, 2001 at 15:49

So glad to find this website..I have le in my left arm after having a lumpectomy. I was never told about this after my surgery. It seems if I get an infection, that this is the place it goes... my arm swells, gets red and very hot. I run a temp of about 103-105 It really knocks me down. I end up in bed for about 3 days. I Went to Mayo Clinic and was told of Massage Therapy...I have done this and it really takes the swelling down. I also wear an elastic sleeve on that arm at all times. I don't really care how it looks. I also wrap my arm every night with elastic bandage ( Ace Bandages). My arm will never be the size of the right arm but at least it feels better. If any one has found anything else, please let me know. thanks.

129. Pam Bradshaw plbubba@yahoo.com
Wheelersburg , USA
October 8, 2001 at 20:51

I developed this condition just short of my 17th birthday. I lived and worked with the condition for 25 years. It only affected my left leg. I adjusted to the looks and stares and the inability to wear certain clothing. On December 19, 1994, I lose the use of my leg and developed severe pain. On December 28th I met Dr. Sachatello in Lexington, KY. He gave me back my life. He performed a Charles Procedure and removed over 200 lbs. of tissue. After a total of 4 surgeries, my left leg is scarred but small now. I still am supposed to wear a gradient stocking and I still from time to time use my pump. My left leg may still look funny but I now can go to any store and buy one pair of pants instead of buying three and making them into two. I still have to be careful with infection and careful not to cut my leg as I do not have any connective tissue left. This procuedure might not be for everyone but it helped me

128. tammy siebert siebert@lakedalelink.net
south haven , usa
September 29, 2001 at 20:12

Hi. About a year ago I found out I had breast cancer. I decided to go with the tram flap. One side failed. After going back in to surgery 4 times decided they needed to remove it. My hosptial stay is kinda blury to me, but I do remember someone coming in and telling me about the fact I had to be careful for infections, since they took out my lymphnodes, and to watch for swelling. I had chemo and was very sick, but now I'm working on recovering. It's been really hard. I work construction and we have a small hobby farm. I love all the work I do but I get real tired still. I was not really told about the chances of getting le, or what to do to prevent it, so I went on with my life as normal as I could, which incudes lots of heavy lift. I drive heavy equipment which includes lots of bouncing around and constant movement of my arm. 3 months ago I went in for one of my cancer checks and told him my arm was very painful and swelling alot. He told me this was normal and I would just have to live with it (of course he's an older doctor). My surgeon got a copy of this report and called me and told me it can be delt with. So he sent me to a physical therapist and she processed to explain le to me. she also told me, that I would have to deal with this the rest of my life and if not treated, would get worse. I was given compression garments to wear every day. They are ugly and I'm embarassed to wear them at work, so I wear long sleeves and gloves all the time. Well, she was going over all the things I can no longer do; one was my job. I looked at her and asked if I should just stop breathing too! I am very angry about this and have been looking for more info. I have not quit my job and hopefully don't plan to. I have really been down about all of the I feel the day they told me I had cancer, that my life has fallin apart. I just want to be back to normal. I'm told this is normal and I just have to deal with it. There has got to be away of living with le and controlling it without being in pain all the time and being able to get back to my normal life. Anybody knows any more info, that could help me out? I'm told, that if I continue on the way I'm going, it will get worse.

thanks tammy from south haven, mn

127. carole touzalin touz123@aol.com
yonkers , USA
September 15, 2001 at 06:08

Hi everyone. I enjoy reading this guest book although I leave with a heay heart. The problem is that there is no cure. You live and live with this condition and try to look and act like everyone else. Docters do not give a nams to it at least thry didn't when I was young. My came at age 16 with out warning. My parents felt badly and we made the rounds to MD's but to little avail. Over thr years thre leg has grown and arthretis nas set it so I now use a walker to get around.I enjoy my job and hesitate to leave although it is harder and harder. It is difficult to look nie and to buy clothes. It is good to speak here. I am thinking however that the events of the last week have me in a daze .It has been so awful to watch and accept these events unfold. I feel that something very bad will happen soon and lymphedema will be inconsequetial. It is hard to sleep and to concentrate. I wish us all well. We need God's presence now. With loving thoughts Please write to me and share your trials. Carole T

126. Tracy K. Sparky14@hotmail.com
Danvers, MA , U.S.A.
September 12, 2001 at 00:37

What a great site!

Before I make anyone suffer through reading my entire lengthy story, may I suggest going to a wound clinic for treatment of this problem. Why a wound clinic? Edema is a major cause of chronic wounds - the skin is stretched taut, the circulation suffers and the skin opens more easily and has a harder time healing. Wound nurses have extra training in techniques to heal the underlying causes of chronic wounds.

I am a 37 year old woman. I have lymph edema in the lower half of both legs and I don't know how I got it. My right leg started swelling dramatically right above the ankle nearly eight years ago, when I was 29-30 years old. A stress test, electrocardiogram and doppler ultrasound of my legs came back negative - no clots or heart failure. An internal ultrasound showed there was no swelling or cysts on my ovaries pressing on my lymph vessels.

Like the postings I read in this guestbook, I too have gone through various treatments, with varying success. Complicating matters was that I had gaps in my health care coverage for months at a time, mixed in at times with sickness in the family during which I had to help out.

A mild diuretic and daily exercize (swimming) helped take the edge off but didn't entirely removed the problem. The above mentioned lifestyle factors kicked in and I got out of the habit of swimming and taking the diuretic. My left leg started to swell.

When both legs were swollen, I broke down and asked for surgical stockings, those brown kind which take Herculean strength to pull on. The nurse fitting me showed me I had to compress my legs with elastic bandages first and then put the stockings on. While the legs went down, they didn't go down all the way and didn't stay down once the stockings were on.

I ignored the problem some more until I finally took a trip to New York City where I walked for hours in the summer heat. This caused the sores on the widest part of my legs (just above my ankles) to become full fledged crater-like weepy sores. Cellulitis set in and I went to my doctor again.

Now I am under the treatment of the Wound Clinic of Salem (Mass.) Hospital.

We use Unna boots (spelling?) and an ankle to knee sequential lymph pump. The pump has to be used twice a day, preferably an hour per leg. The next goal is to get the swelling down enough so I can wear CircAids - ankle to knee cuffs with velcro straps that you tighten during the day as the swelling goes down and to also continue with the pump.

My legs didn't hurt much until I got the cellulitis, then it felt like someone was jamming them with a knitting needle. They've gotten so swollen it's difficult to find pants which fit over them. I didn't like to walk because they rubbed against each other - I felt like a big, ungainly cricket.

Fortunately I am able to work - my workplace has a very relaxed dress code. I can wear pants and sneakers. With the Unna boots, I wear long skirts with sneakers - sometimes the boots show through and someone asks a question, but it's always out of concern. The people here are very supportive.

Dressing up for nice events is hard, obviously, but I hope the degree of swelling won't last long. I've been told that I will need something or other the rest of my life - CircAids, the pump, or stockings - but that the swelling won't be as bad.

The Wound Clinic nurses are looking into the possibility of plastic surgery to take out the excess fibrous tissue which has built up. More on that story as it develops.

Like I said, I don't know how I got this. My ankles were always a little puffy. I also suffered a bad fall where I struck my lower back when I was about 22 or 23.

Good luck to everyone who suffers from this condition! My prayers are with you.

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