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Message Board
This page is for any and all to post messages about anything
and everything related to lymphedema.
You are encouraged to share your lymphedema experiences
so you that others may benefit from them and know that they are
not alone.
Messages are displayed in order they were submitted with the
most recent at the top.
Therefore, replies to previous messages will be found higher on the page
than the original message.
(scroll down to see them all.)
My apologies to everyone who uses this message board properly.
I am unable to spend time deleting the offensive messages posted by
spammers, so I am simply disabling the posting function of message board.
Existing postings are still here for you to peruse.
If I am
able to re-enable the message board later, I will do so.
Messages Posted by Others:
| Message #1880 |
2007-02-14 08:45:01 |
| Author: Administrator |
| Subject: This message board |
| As anyone who has visited this board recently knows, there are a lot of "spam" style postings that keep appearing. As I can not afford to spend my time endlessly deleted these offensive and annoying messages, I will need to take down this message board. I will put links to other lymphedema message boards on this page instead, such as Pat O'Conner's site. Pat, please send me a link to your message board so I can put a permanent link to it here. |
| Message #1854 |
2007-02-06 19:40:22 |
| Author: JL |
| Subject: need to find Dr. |
| What kind of Dr. do I look for to treat my Lynphedema? I have it in my left leg for many years. |
| Message #1850 |
2007-02-02 05:58:15 |
| Author: Leon de Jonge |
| Subject: Lymphopress |
| Does anybody know of anyone in South Africa, either selling the lymphopress or even renting it out? leondejonge2006@yahoo.com |
| Message #1830 |
2007-01-29 13:50:26 |
| Author: Anonymous |
| Subject: |
| i was born with klippel trenaunay web syndrome
& lymphodema i wear stockings
i dont let it get in the way of my life
from lucy sewell
email me. dougal.72@hotmail.co.uk
i would love to hear from you |
| Message #1823 |
2007-01-28 10:13:41 |
| Author: KATARINA |
| Subject: LYMPHEDEMA |
| I HAVE LYMPHEDEMA LEG SINCE I WAS BORN.IF SOMEONE KNOW HOW TO HELP ME,PLEASE CONTACT ME AS SOON,IN MY COUNTRU ISNT EXIST A CURE,THIS IS MY E-MAIL KATARINAM@MEDIANIS.NET |
| Message #1817 |
2007-01-21 22:14:27 |
| Author: Pat O'Connor |
| Subject: 2nd NLN Patient Summit |
| The 2nd International NLN Patient Summit
Lymphedema: Sharing Our World Of Knowledge
For Patients, Those At Risk, Family Members, Caregivers and Advocates
October 5 - 7, 2007
Renaissance Waverly Hotel
Atlanta, GA
http://www.lymphnet.org/2007summit/ptsummit07.html
The National Lymphedema Network, Inc (NLN) is proud to present the 2nd International Patient Summit, Lymphedema: Sharing Our World of Knowledge. In American medicine, patients play a pivotal role in the Health industry, particularly when it comes to lymphedema; through perseverance and dedicated advocacy, numerous lymphedema support groups and individual patients have helped change the face of medicine, one community--and often one person--at a time.
The Patient Summit will be a place for patients, those at risk, family members, caregivers and advocates to come together to learn and "share our world of knowledge".
The 2 1/2 day event will cover all areas of lymphatic disease and will have some of the countries most respected physicians and therapists presenting on topics covering treatment, bandaging, exercise, self care, pediatric care, genetics, diagnostic tools and
much more. There will also be a complete exhibit hall, networking reception and a Patient Clinic.
***** Special Note *****
We of Lymphedema People are pleased to give the upcoming conference our whole-hearted endorsement. Please join us this October in Atlanta!
Pat O'Connor
Lymphedema People
http://www.lymphedemapeople.com |
| Message #1816 |
2007-01-21 07:31:43 |
| Author: pat long |
| Subject: lynphedema in the breast and back |
| is there any out there with the same condition if so i would like to here from you |
| Message #1815 |
2007-01-18 14:34:54 |
| Author: Randi |
| Subject: lympatic dranage/South Florida |
| I see Tamara is located in South Florida. Where are you located? I am in South Florida and desperate to find someone reputable near Broward County. Thank you! |
| Message #1810 |
2007-01-13 07:14:33 |
| Author: KATARINA MILOJKOVIC |
| Subject: LYMPHEDEMA |
| HI! I AM FROM SERBIA AND I HAVE LYMPHEDEMA LEG.MY LEG SWELLING SINCE I WAS BORN,IN MY COUNTRY ISNT EXIST A CURE.IF YOU KNOW HOW TO HELP ME,PLEASE CONTACT ME AS SOON,THANKS!!!!! |
| Message #1807 |
2007-01-12 08:41:44 |
| Author: Professor Bilby |
| Subject: Cathy - Lymphedema |
| Cathy, can you provide clinical evidence to substantiate the claims you have made on the treatment modalities? If not, should we just assume this is yet another "would be" cure-all? Since there are absolutely no independent clinical studies to prove the value of the alternative medicines you are using, I would suppose there is much to be said about the placebo effect. Professor Bilby |
| Message #1806 |
2007-01-10 07:15:13 |
| Author: Cathy |
| Subject: Lymphedema |
| I have found out that you have to be your own health "detective" if you aren't getting results. I hope this might give someone a clue to search for a better answer to their painful condition. I was injured in both ankles in a car accident 5 years ago. I developed cellulitis in both legs (after a bout of athlete's feet) which responded to antibiotics but had to be repeated several times. The area was always tender. I was treated by physical therapy also at the time and they did not "cure" it, only tried different things. One leg developed scar tissue and is shrunken compared to the other. (It received ultrasound therapy and hard massage) I would hold my legs above my head each night in bed and run my hands down my legs before going to sleep. I also used Vit. E cream 100,000 I.U. This kept me free of any reoccurance. I did not know wha to expect. In June of '06 I banged my right leg on my mother's wheelchair or my grandson's wagon. I just remember saying ouch! After that, the swelling started in my ankle and foot. I did nothing except what I had been doing and it kept getting more painful. I was also at my Mother's going thru her things in her house. She had had water damage in '05 and I was there then in mold suit respirator, etc. and then working through the rest in a restored first, original second floor and attic. (I say that to bring in the exposure to mold.) I finally went to the Dr's. in August and went through 4 rounds of different antibiotics $$$$ with little change. The next step from the Dr. is to see a vascular surgeon. Since we are self-pay, I wanted to try all that I could to change my condition. I went to massages and was told about a lymphatic massage therapist. I had a session with her and learned about that. Then I started wearing decompression stockings which helped. Elevation helped as well as putting hi risers under the foot only of my bed. The inflammation continued and the heat was still there. I was watching TV WRXY and it was a health program. The host was telling of a lady's case of antibiotic treatments and nothing helped with her inflammation. Then she tried their recommendation and got results. I went to the health food store and got some Oil of Oregano and took some, but it didn't seem to help. I then, several weeks later, saw another visitor to the same program and he was saying he was in med school and got pricked by a iv needle and developed an inflammation. He ended up in the hospital with a temp. of 94 degrees and very ill. He started on an antifungal treatment and had good results after time. This got my attention because I believe it is started by an external exposure that is allowed internally through a break in the skin. The inflammation and swelling is only a symptom of a deeper problem. I am still waiting for total healing, but the best treatment I have found is undeclenic acid, grapefruit seed extract, neem extract and caprylic acid. I also follow the suggestion of taking flaxium daily to pull the toxins out of my body regularly. I also take oregano P73 oil but need the acids and extracts to really feel the difference. I believe that virus, mold or fungus are at the roots of our ailments. I still get good results after my "wellness" massages. (Bypassing my sore area) If I am not doing the right thing, the soreness and heat will return within 24 hours and then I have to think "now what am I not doing?" |
| Message #1787 |
2006-12-18 13:09:52 |
| Author: tbrownl1 |
| Subject: torn meniscus with lymphedema |
| i have had a torn cartilage repaired and it is also on the same leg that the lymphedema is on. do you think that the meniscus tear has something to do with the reason why i have lymphedema |
| Message #1786 |
2006-12-02 09:28:16 |
| Author: hallo |
| Subject: hallo |
| Sorry, buy i have to do that |
| Message #1785 |
2006-11-29 15:43:25 |
| Author: CM |
| Subject: Sincere best wishes |
| I'm sure all the subscribers share in wishing you the very best and an early recovery. Hope you're out for the holidays and get a chance to have a bit of that red wine you mention from time to time. Again, we all appreciate the work you put into this site. |
| Message #1784 |
2006-11-28 23:53:00 |
| Author: Pat |
| Subject: CM |
| Hey CM. Been quiet as things kinda went crazy on the site here and I wasn't sure about posting. Also ben a hectic couple months. Had the NLN conference in Nashville...then on Nov 13th emergency admission into the hospital....and am still there. I do keep an eye on the posting and really look forward to further reports on what you find about your swelling. Not sure how long my hospital stay is going to be...perhaps another 3 or 4 weeks. Good to hear from you! Pat - Lymphedema People - http://www.lymphedemapeople.com |
| Message #1783 |
2006-11-28 12:20:18 |
| Author: mario |
| Subject: me and a friend are doing a research paper |
| are there any cases of famous people having this lymphedema? if so who? can you also in form us of the different stages of lymphedema? one last question when is lymphedema too late to cure? sorry if i asked to many questions. thank you |
| Message #1781 |
2006-11-26 05:07:19 |
| Author: CM |
| Subject: Pat |
| Hi Pat, I seem to recall some time ago that you were going for medical treatment. This web page has been unduly quiet from your end. I hope you're well. |
| Message #1779 |
2006-11-05 06:13:19 |
| Author: CM |
| Subject: Lymphedema + tissue edema |
| I had promised that I would report back after I had seen a number of specialists. The bottom line for me is that I'm as fit as a fiddle however they tell me that I have a touch of lymphedema in my left foot/ankle and that as a result of the related swelling, that I have also developed tissue edema. I have yet to go to a naturopath (I'm in the process of making an appointment to go see one) to determine what foods I'm allegic to. This is because, as per my previous postings, my foot swells when I eat or drink anything with sugars including pop, chocolate bars, cake, pie, coffee with sugar, and any form of alcohol. I'll repost after I see the naturopath. |
| Message #1778 |
2006-11-03 22:34:19 |
| Author: TAMMY BROWNLEE |
| Subject: LYMPHEDEMA |
| DOES LYMPHEDEMA JUST EVER GO AWAY? WILL IT EVER GO AWAY AFTER WEIGHTLOSS? |
| Message #1774 |
2006-11-02 08:43:27 |
| Author: Anonymous |
| Subject: |
| I just bought a good book entitled "Living Well With Lymphedema." It demonstrates exercises and self massages that are helpful. |
| Message #1773 |
2006-11-02 08:40:54 |
| Author: Anonymous |
| Subject: |
| I don't understand what is going on here. Is this site no longer active? |
| Message #1770 |
2006-10-31 20:44:53 |
| Author: lori r. |
| Subject: post breast cancer lymphedema |
| hi. i've just finished post=mastectomy therapies and already have a tendency to swell in my arm and armpit. what is the excercise regime i should start to avoid worse lymphedema= is it better to walk every morning or start going to curves? is it ok to work with weight machines or should i avoid it? |
| Message #1767 |
2006-10-29 08:06:53 |
| Author: CM |
| Subject: Web site |
| What's going on with the website Pat? I only see one previous message. |
| Message #1766 |
2006-10-27 07:29:18 |
| Author: Anonymous |
| Subject: |
| Can anyone recommend a good video demonstrating self massage for lower limb lymphedema? |
| Message #1764 |
2006-10-20 09:11:43 |
| Author: TRACY |
| Subject: LYMPHADEMA |
| Ihave recently got lymphadema in the right ankle.It started in may just before a period, i was late and my right leg started to swell with terrible pain in both legs. My mum has severe lymphadema in both legs so I know alot about it, only difference I have is terrible stabbing pains in both legs from top to toes. I was wondering has anyone else have all this pain with this disease. |
| Message #1763 |
2006-10-08 01:45:21 |
| Author: mike lannom |
| Subject: why is there pain |
| a spider bit me in may of 04,ive had 17 cellulitis |
| Message #1762 |
2006-10-05 16:40:13 |
| Author: Susan |
| Subject: update to message #1756 |
| As an update to my earlier post, I did have that doppler and my deep veins have been deemed to be excellent, leaving only one explanation for my ankle and foot swelling, and that is lymphedema.
I asked the vascular surgeon if it was related to the cortisone injection that I received and he said it has to be since it occurred right afterwards, but that can not really be proven or disproven. I know there is a connection.
I have received information about a program at St. Mary's Medical Center in Walla Walla, Washington, where they have a program that is getting great reviews. Also, here in my community (Tri-Cities, Washington) there are therapists who do lymphedema treatment (Vodder trained) Is anyone familiar with the program at Saint Mary's called Turning Point? |
| Message #1761 |
2006-10-04 15:47:18 |
| Author: Amber |
| Subject: One leg with lymphedema |
| Hi I have been to doctors after doctors trying to figure out what is wrong. I have swelling in just the left leg from my toes to my knee. None of any of the doctors I have been to can come to a conclusion of what it is. A foot and ankle specialist in Indianapolis, IN diagnosed me with Lymphedema, but I can't agree with them concidering I am only 18 years old.
The swelling has been the same now for 6 years after i fell down a ramp and did nothing about it, but get an x-ray to check for a broken ankle. Could this actually be what they say it is or does anyone else have any suggestion of what I could do to make it go down? |
| Message #1760 |
2006-09-30 04:42:22 |
| Author: ilene |
| Subject: sister with lymphadema |
| my sister is in the 3rd stage of lymphadema. she is extremely overweight, and has mental issues. she does not keep herself clean and is very difficult but all that is that something natural i can get her to allievate her suffering. i am trying to get her a visiting nurse but it takes time. HELP |
| Message #1759 |
2006-09-26 16:20:47 |
| Author: Beck Simrell |
| Subject: Lymphedema in my Right leg |
| I have been working with a massage therapist since June and the swelling is spreading all over my thigh....it seems to keep getting worse. Is that typical in the summer months in Atlanta? I'm concerned that the swelling has gone all the way down to my knee. |
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