Guestbook Number 7

Numbers 151 - 175

January 12 - April 20, 2002

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175. Robin Kappler gidiup@telenet.net
April 20, 2002 at 19:50

Lymphedema secondary to breast cancer, node removal and radiation-- Thank you for our page--I have just developed lymphedema--i did have positive nodes and i did have radiation as well as the mastectomy--a personal trainer wrapped my elbow in a towel and stretched it--I didn't make the leap from no blood pressure cuff to nothing around the arm--I flew to Colorado and my arm swelled the next morning and would not go down because of the altitude--I will begin treatment at the lerner lympheda center next week for two weeks. I need to know someone else who has this to exchange ideas about it. I should have known more. Maybe breast cancer patients need a book about lymphedema right away--not just the rules. No one said--don't let anyone do anything to your arm!

174. Maria 1user@freenet.de
Hamburg , Germany
April 20, 2002 at 19:43

This is a real great site!!

I am a 52 years old female and fight with hugely swollen arms since 15 years, now they have the size of tree trunks, my wrists are almost 20 inches around, the forearms more than 28 inches and my doctor could not help in any way. It took him years to find out that i have lymphedema. Now i know i am not allone with my problem, thanks.

173. june Dombrowski june_d_2001@yahoo.com
milton, fl 32583 , u.s.a.
April 18, 2002 at 04:50

I am asking for information about the fluid accumalation in my friends left arm. In Nov of 2001 she had a tumor removed from her colon a stage 4 they said with mets to the liver which had a large pocket of infection. She choose no treatment ei chemo or radiation as the Dr said it was too far advanced. She has no untoward effects until yesterday when she bumped her arm just above the wrist and the capallaries broke causing a large blood stain under the skin and the wrist and arm past the elbow had edema. Pitting is about a 1+ on the bony area Does anyone know what is going on she did not have any lymphs removed that we know of Just need to know if this is a normal reaction .

172. Sherry sherryann13@hotmail.com
Brewster MA. , USA
April 15, 2002 at 09:41

Hello All, I just found your site,I have been having problems with swelling of my ankles for years, whenever I complained to a Doctor about it, They would say I had been on my feet too much. Whenever I would go on vacation by plane both of my legs would swell. And of course they would just say keep your feet elevated and order fluid pills. So there went 2 days of my vacation ! I am now 46 and I had a tumor removed from my thoracic spinal cord 10/12/00. The tumor was benign but I ended up with complications, I ended up in ICU for a week on a ventilator.It turns out now that the Doctor cut the nerve to my diaphragm. I was in the hospital for 6 weeks on oxygen,which I am still on and it looks like that is the way it is going to be.Forgive me for going on like this. My legs started swelling early last Spring and they were very painful they put me on fluid pills.They relly did not help much.It went away for a short while.then came back again so...the they put me through all kinds of tests checking for clots, MRIs CT. scans etc. Good thing I've got health insurance! Now they are telling me it is Lympoedema. Whatever info anyone can send me on this would be greatly appreciated. I am getting to the point where I don't trust doctors anymore, I am in constant pain all the time now I dont know whether it is from the spinal cord or this new ailment. Thank You all for reading all this and fo what Info you can send. God Bless Sherry

171. lori flutterby617@yahoo.com
palmyra , usa
April 12, 2002 at 04:49

I am a 41 yr old female with lymphedema in my left leg. In '93 I had streptococcus cellulittis, which meant a 12 day stay in the hospital, blowing all my veins, ending up with a central line to receive anitibiotics. They were going to amputate from the knee down the first 3 days in as they thought i had the flesh eating disease. Well, I have managed to deal with my lyphhedema but why i am writing is to see if any one has or has ever heard of getting abdominal lymphedema? this past summer i had "cellulitis" in my abdomen. the dr. treated me with intravenous antibiotics. But since then i have noticed my abdomen is swollen much larger on the right side, u can hold ur finger there and leave a pit. it fades after time. i am an obese woman and have the "hanging" stomach and it hangs much lower on the right. i told 2 drs i think i have abdominal lymphedema and they say no!! well the 29 th of march i had a gastric-bypass. on the 2nd of april i went back into surgery as my incision opened and was just sweeping this blood tinged watery liquid. and i mean seeping! the dr pressed on both sides of incision and it came out like a babbling brook!!! today, april 11, i got up to use the bathroom and noticed my gown was wet. i looked and the incision had sprung a leak!! it is just a pin head size spot but this watery liquid is seeping out. i immediatley placed a 4 x4 guaze pad over it and dialed the dr. before i got off the phone, the pad was soaked. they made an appt for me to come in monday! i just feel that this is lymph fluid but no one will listen. does anyone know if maybe , could they culture the fluid and see what exactly this fluid is?????? i will apprecaite any help or insight from anyone. please email me at flutterby617@yahoo.com thank you and god bless!!

169. Kathee G. mother168508@yahoo.com
Lincoln, NE , USA
April 4, 2002 at 20:17

I, like most of you had never heard of lymphedema before. I kept going to my Dr. for years with "swollen left ankle". This past year it got much worse and nothing made the swelling go down. He sent me to a "new idea" here in Lincoln a Lymphedema Clinic at Madonna Rehab Center. It worked great. The only problem is that when massage therapy stopped and 24 hr a day wraps stopped the swelling came back. I still wrap at night and use a stocking during the day but the swelling has progressed to my knee now. I try to massage my leg myself but don't know if I'm doing it right. Does anybody have any suggestion for anything else I can do. My primary physician has me on Lasix but that doesn't take care of it completely. Thanks.

168. pat bojkovsky pbojangles@msn.com
GlenCarbon Ill 62034
April 3, 2002 at 14:33

hi i would like to find where i would go to find help with therapy and where to get the wrap i had breast cancer 1986 my left arm swells terrible and is getting worse now .would love to hear from some one in my area Glen Carbon is across the river from St Louis Mo thank you Pat

167. Kay Ktrainer@aol.com
Virginia Beach , USA
March 29, 2002 at 07:32

I am a parotid cancer survivor. I had surgery and radiation to the face and neck six years ago. I am in remission, however, I have been dianosed with lyphedema of the eye. Has anyone else experienced this?

166. doris susan sadoski doris.saodki@amplex.net
toledo , USA
March 15, 2002 at 19:02

I was daignosed with Primary Lymphedema since 1977. Having information on the internet has been very helpful.

165. Cheryl cavritt@pioneeris.net
Middletown , USA
March 12, 2002 at 19:43

I am recovering from surgery currently. I was diagnosed with Melanoma in Dec '01. 17 Nodes were removed, all with cancer. I am 42 and its been just 2 weeks since surgery and the swelling, numbness and pain have been significant. I had educated myself on lymphedema prior to surgery but I do agree that the doctor's offer very little. Due to my own research I had already sought out some therapy for when my drain is removed which should be this week. I know this will be a life long process but right now the moments of helplessness and discomfort can be overwhelming. I am trying to learn to take baby steps mentally and not dwell right now on what I can't do but be grateful for what I have and know that with education, care and vigilance and speaking to those who share this affliction will bolster my determination. Thank you and my thoughts are with all of you who suffer each day. KNOW YOU ARE NOT ALONE! thanks for a listening ear, Cheryl

164. Kaye K. missk_ghs@yahoo.com
Garland Texas , USA
March 9, 2002 at 22:43

Hi! I am so grateful for this site, Yvonne! My edema started in my lower left leg this past October and has since spread to my right leg.. I have had ultrasounds of my entire body!!So far we haven't found the cause and my firt doctor said, "well, I'm going to write this down as edema of unknown origin" When I asked what else I could do, he said, "I guess you could get some support socks.. really, I've seen much worse." So, I guess he was waiting for me to get that bad and then maybe he would help me? I have a question that I am desperately searching for the answer to... when you do massage or wear your stockings or boots, do you have any bad reactions afterwards? It causes terrible nausea and my head gets completely messed up.. I can't concentrate, I can't remember anything, and I sleep for hours and hours... Have any of you had this problem? I am trying to make the connection without having to try it again!! I couldn't function for 48 hours last week after wearing the stockings for 2 half days at work.. thanks for listening! Kaye

163. marja i.paffen@wanadoo.nl
landgraaf , the netherlands
February 28, 2002 at 23:42

I was surprised about this guestbook!I have lympheda at my left leg since I was seventeen years old.Now I am 51.After two shunts it goes good with my leg.Only in summer.when it is warm my leg and foot becomes thicker.I was glad to hear,that many people have the same problem. It is difficult to explain to other people what lymphedema is.They don't understand it.When I read the stories in the guestbook,I could feel with every-one.Thank You!!!

162. Terri momof302864@yahoo.com
Cumberland , USA
February 24, 2002 at 21:48

I just discovered this page today. For the longest time, I thought I was in this by myself. I guess I found it a relief to know other people were dealing with the same feelings.(Not that I would wish this on anyone!)

I'm just beginning to educate myself about this horrible problem but, I know I can't go through the rest of my life with legs as swollen and sore as mine are. I was glad to find out there could be some relief for me if I could find the right caregiver. I would like to hear from anyone in the New England region of the United States that has information that would help me find help. Please take the time to e-mail me at momof302864@yahoo.com. Any and all help will be greatly appericiated. I am the mother of 3 children (2 of which are under the age of 3) and my dream is to be able to play with them the way a mom should!

Thank You, Terri

161. Roz gralo@gosympatico.ca
Toronto , Canada
February 23, 2002 at 03:57

I guess I also should have mentioned with the message that I am 41 yrs old and have primary lymphedema. Just in case anyone else shares the same problems as me ...thanks for listening

160. Roz gralo@gosympatico.ca
Toronto , Canada
February 22, 2002 at 21:53

Wow how wonderful to find this sight. I have seen many sights but none that has as many personal statements. I like most of you went a couple of years with no diagnosis.Then my Dr. suggested I lose weight. So I lost 80lbs and still my right leg was swollen. I couldn't understand it. I felt so depressed. I then was on the internet one day and a girl happened to say to me have you heard of Lymphedema? I said no. She sent me to the sight where I saw a picture of someone who looked just like me one small leg and one big leg.I cried at the sight of it.I couldn't believe I finally had an answer.I brought it up to my dr. who said oh. Well lets sent you to an specialist in veins and what not and see what he says. The Dr who is Dr Hulewych works at Scarborugh General Hosp in Toronto took all of 5 mins to diagnose years of swelling and torment. I have a lot of problems because I work on my feet. I am now on a leave of absence because I gained all the weight back and my leg is worse than ever. I didnt' go back to the dr at first because I was so ashamed of myself. I grew out my stocking and stopped wrapping. My depression grew worse.I am now on antidepressants and anxiety meds. More than for just my lymphedema but for other reasons. I have just gotten out of hospital where I spent 4 days attached to the Lympha-Press machine. They have now said I have it in my other leg.Although not as bad as the right one. I am waiting for my stocking which could take up to 6 wks. So for now I am wrapping and complaining.But I should be thankful I am able to walk and am back at Weight Watchers(with my drs suggestion) I hope it helps me some. Anyways so nice to read all your stories I feel so comforted. Some times I feel like a freak!!! Hope to hear from some of you.......

159. Dyanna dyanna_larson@sbcglobal.net
Austin, Texas , USA
February 19, 2002 at 08:07

My daughter was born in April 2001 with congenital LE in both legs from the knee down. We are having an impossible time finding a therapist who will even look at an infant, and are wondering if anyone here can help. Thanks!

158. Geeta Bissoon rani60@msn.com
Rousillac , Trinidad
February 13, 2002 at 01:31

Hello Yvonne I wrote to you in Feb 2000 when you started this website and I would like to share my situation with the rest of the world.I am from a small island in the West Indies called Trinidad.I am 42 years,single and I have lymphedema since I was 19 years.I am a banker for the past 22 years and there are times when I feel when it will all end.I thank god everyday that I can still earn my keep and live a fairly comfortable life. I have lymphedema in my right leg but in 1986 I had a lymph shunt operation in London performed by one of the best surgeons I have known.His name is Profesor John Edwards and he still practices in London.Since then I have some relief but the leg is still swollen.I wear the supportive stockings for 22 years now and it Sigvaris stocking.I get them from John Bell and Croyden in London.They send them by post to me every six months.I wear it all the time and I manage. When I read about the other situations I get consolation but I wish there is something i can do to help other patients... Keep up the good work in this site and it is a way to comfort other patients.. take care now.. geeta

157. azam
February 12, 2002 at 16:52

it is very nice to be here and have some good information.

156. Janet S Strong1929@aoil.com
surprise , USA
January 29, 2002 at 03:44

Had surgery on groin at prestigous clinic then leg started to swell Clinic refused any help. Wanted to give chemo even tho no tests show cancer. Clinic said dont bother them. Tried massage therapist, but most of them dont know how to work the lymph system. Have found one who specalizes in Lymphs. Docs know nothing. Water aerobics they say helps. Also Green barley Juice. Be glad to hear from you.

155. Kathryn SprenkleTX@aol.com
Olive Branch, MS , USA
January 25, 2002 at 09:23

I have been battling with Lymphedema in both legs for 2 years now. After an intensive 5 weeks of MLD(Manual Lymph Drainage) and bandaging I was allowed to graduate to a Lymph Press sequential pump which runs from my toes to my hips and compression stockings or Circaids.

While, most of the pain is gone in my feet and lower legs, I have the problem of the fluid now filling my abdomen. My abdomen has swollen by nearly 10 inches in the last year. It's like it's pushed out of my legs up to my stomach where it just stays.

When I lived in Texas, the doctors there were more agressive about treating Lymphedema, but now that I've moved to Mississippi, it's like they don't know what to do. My doctor even suggested it was from over eating and that I should just stop eating. Such IGNORANCE really gets me angry.

I try to accept my disease and do the best I can. If there is anyone else who has experienced this I'd enjoy talking with you about your experiences.

154. Dawn Singleton dawne3s@aol.com
Elkhart , usa
January 24, 2002 at 22:14

I found out i had lymphedema in my right leg after 3 years of differnt doctors telling me i was getting older and this swelling of my ankle and calf was from that [i was 40 then]. And because i stand on my feet all night at work. Finely i read something in our paper called ask the doctor and the lady had the same symtoms as me .I then called the 800 number they had listed for doctors in this field. I was finely tested in Sept and found out thats why my swelling was happening. It took 3yrs to found out doctors just dont know about this. I hate that there is no cure. I whine about wrapping and the sleeve but at least I can still walk and work for now. What i was wondering has anyone out there tryed any kind of vitimans or natural herbs for this since doctors dont have a cure maybe something at the vitimin store would help to get our lymph nodes working again. Also the doctors have no clue on why or how i got this . one more thing i LOVE this site.

153. Alison MacLeod alison_m_macleod@hotmail.com
Wellington , New Zealand
January 24, 2002 at 03:36

I am 24. I had very swollen ankles/legs soon after I moved to London nearly two years ago. It took a long time for my GP to figure out what was wrong. I was finally sent to a surgeon (who just happened to be a family friend of my GP) who specialised in the lymphatic and venous systems. Professor Pflug is based in Germany but travels to London to run a clinic one day a week.

He told me I had primary lymphoedema in both my lower legs and to look after myself or else it would get severely worse. I used to and still do fly long distances for work. I think this is what caused me "acquire" lymphoedema.

Professor Pflug referred me to his physiotherapist who performed manual lymph drainage (MLD), a form of gentle massage to get the lymph fluid back up to the lymph nodes and away from my ankles. It is a very specialised field. As far as I understand it, there are physicians trained in MLD in the US and Germany but not in Australia or New Zealand.

I left the UK in August last year and didn't have enough time to have more than two treatments of MLD before I left. But the two sessions I did have were hugely beneficial. I immediately felt immense relief from the pain and the tightness due to the swelling of my ankles that lymphoedema causes and for the following week. To look after myself after I left London, the physiotherapist (Annie Derdeyn - also German) sold me a "Circulator", a inflatable rubber ring designed for self-massage. You put your foot through it and you slide it up over your ankle and lower leg in short movements in quick succession. I was told to only use this ring for no more than 2 mins a day, as studies have proven there is no more benefit after 2 mins of use! It was designed and invented by Prof Pflug.

The other benefit of this ring is that you can take it anywhere, even on an aeroplane as it is very transportable. Just deflate the ring before you fly and inflate when you want to use it on board - I used it a lot on my long flight back from the UK to New Zealand and didn't have nearly as big swollen ankles as I had previously post-flying.

I also bought support stockings from Annie and have to wear those whenever I exercise, fly or my ankles are very swollen. I enjoy running, so I bought some really nice three-quarter length running pants so that when I wear my stockings you can't see where they end! I was also told by Annie the best form of exercise to do with lymphoedema is to swim. Apparently it is the next best thing to MLD. Very gentle, almost like a form of massage. I believe this has helped me immensely.

As it is summer time in New Zealand at the moment, and the heat tends to make it worse, I have been getting very achey and painful lower legs. I am hoping that by continuing what I am doing I can keep lymphoedema at bay.

If anyone wants to know more about the treatment or experiences I have had, please email me.

:-)

152. Kathy Weltman lymphawrap@qwest.net
Scottsdale, AZ , USA
January 20, 2002 at 02:58

Wow! I just discovered this website and the stories are so heartwarming. It's a nice place to share your thoughts. I had breast cancer in May of 1998. They took 12 lymph nodes out and 5 were cancerous. After chemotherapy and radiation therapy,I was able to survive the ordeal. A year later, I woke up in the morning with a badly infected paper cut. Diagnosis: Lymphedema. I sought the normal course of treatment, bandage wrapping and compression garments. When my therapists told me to order a second set of bandages and supplies, I was dismayed to find there was no one locally to supply them. After much research and talking to various distributors, I am happy to say that I created LymphaWrap. I provide a service for those patients, who are afflicted with lymphedema and need to get bandages within 24-48 hours. I donate 5% of my profits to The National Lymphedema Network Society, The Circle of Hope Foundation, and The Lymphatic Research Academy. This adventure was my way of giving back to the community and I feel as though I can make a difference to people. So all of you out there that have lymphedema, I know what you are going through and I offer to you another source of support. Should anyone like to view my website, please type in: www.lymphawrap.com. Thank you

151. El fssra@yandex.ru
Moscow , Russia
January 12, 2002 at 00:05

Over the years the leg has grown and arthretis has 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 nice 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 inconsequential. It is hard to sleep and to concentrate. I wish us all well. We need God's presence now. See: http://www.invcredit.ru

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