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2021, April 15
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Is there anything I can do about my excessive swelling in my feet and legs?
Short answer – It depends. While the above image is not showing capillary malformations or vein malformations; lymphatic swelling sure seems prevalent. What stage swelling are you at? I’d bet, accordingly, your doctor’s prescription varies greatly.Bill Lee
[Legacy material from a previous Seen, Yet Not Heard edition]
Seven “TO DO’s” come to mind when dealing with excess limb swelling, keeping in mind that we swell up due to compromised Vein and Lymphatic vessels.
My doctor prescribed these, based on my specific symptoms, my specific anomalies (level 2 when not behaving myself):
- ELEVATE YOUR LEGS at waist level, at a minimum
- (possibly) Wear DR Prescribed Compression Stockings
- Wear newer style Over the Counter Compression Stockings
- Get K-T experienced Physician prescribed care & treatment
- (possibly) Take prescriptive Sirilimous
- (possibly) Take anti-inflammatories, anti-coagulants
- Low impact exercise, particularly swimming
Physician Prescribed Compression Socks
- University of Kentucky Vascular Malformation Fact Sheet
- What is a RASA1 gene mutations relevance?
- Klippel-Trenaunay Syndrome [ explained ]
- Build health literacy for life [author Barbara Kondilis]
- New diagnostic procedures and interventions for patients with systemic lymphatic disease [May 13 Zoom Symposium]
- Scholarships for those Born Rare
- VASCA Magazine; from Europe a brand new resource for the Vascular Anomalies community
- Dr. Adams comes to CHOP from Boston Children’s Hospital
- Re-introducing the Hamburg Classification System
- Vascular Anomalies Classification: Recommendations From the International Society for the Study of Vascular Anomalies | American Academy of Pediatrics (aappublications.org)
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Bill shares his lessons learned based on his physician’s consults and med-science literature. Level 2 connotates Bill’s Lymphatic condition
(1) Elevation of your leg above your waist for as many hours as practical or plausible. My doctors prescribed 20 hours a day for my condition [we all have different malformations be they vein or lymphatic vessels, so having a KT experienced doctor looking at comprehensive Radiological Images would get you a better idea of how extensive yours are and how much elevation time may help.
(2) As an adjunct to the above, wearing doctor prescribed compression stockings (physical therapist measured and fitted) for their prescribed periods of time may helps to support your weaker veins and lymphatic vessels which makes these last longer (protects them from accelerated breakdowns and further failure. I use the word “may” intentionally. I turned out to be in the minority where heavy compression was counterproductive.
(3) In the event the above is not affordable or counterproductive, you could try over-the-counter compression stockings. There is a newer product on the market – Sports Compression Stockings – that could help. These are engineered to help “normal” people who work on their feet or do sports a lot. The key thing to know is that these have compression ratios that do not go as high as doctor prescribed stockings – BUT THEN YOUR SPECIFIC CONDITION MAY NOT REQUIRE compression ratios higher than these offer.
NOTE: Compression stockings worn without skilled KT examination can cause permanent damage to peripheral nerves. My actual experience being over compression for 20 years. The mistake made by a doctor who prescribed these without doing comprehensive vein studies using advanced imaging protocols. Turns out I only tolerate compression levels in the Over the Counter range. And they help tremendously – even so I am forced to take a week or so off of them, using elevation as my prescribed relief.
(4) As an adjunct to this, doctor prescribed heavy duty agents that reduce swelling. I’m thinking of Sirilimous (but it has a major need for doctor monitoring as it doesn’t work for many and even causes its own set of medical issues). BUT IT WORKS in enough patients to warrant consideration for those who fight dysfunctional days due to major swelling and/or soft tissue hypertrophy. My swelling level does not warrant this therapy; I mention it because fellow KT travelers are on it and it is helping them.
(5) As an adjunct to the above heavy duty drug, doctor prescribed meds that reduce swelling and blood clotting and vascular congestion may be helpful. The list is long and best managed by a skilled KT doctor and absent one of these a medical doctor that monitors their use for unintended consequences. I have been on blood thinners for a period of time when indicated. Some of our fellow travelers are on these constantly.
(6) As an adjunct to all of the above, swimming everyday, maybe a couple times a day. Pool, ocean, river water has natural compression levels that basically do what stockings do and you get the benefit of exercising your muscles without adding severe trauma to your veins which most likely are compromised since birth. The cornerstone problem with KT is that blood goes into our limbs at “normal” volumes and pressure, but our veins are not equipped to return it fast enough. Thus it pools in our legs. Vascular swelling. ADD TO THIS our compromised Lymphatic Vessels and many of us get lymphatic swelling also. I tried to do this regularly until I had open wounds from Venous Stasis Ulcers. I also am a terrible swimmer. The one thing I would change about my youth is to have been put in the swimming pool early in life and adopted it as my daily go to exercise.
Please take the ABOVE as an explanation of what Bill does, of what he has learned, of what his doctor’s prescribed. This is what med-science calls anecdotal; meaning its best to take this information to an experienced and successful K-T doctor to verify your or your child’s individual symptoms/syndrome benefits from these.
[SORTED BY MOST CURRENT TO 1ST PUBLISHED
Vascular Malformation Fact Sheet (uky.edu)
Mentioned early this week was the RASA1 gene mutation. Juxtaposed to the pik3ca mutation, this genetic mutation is differentially associated with Parkes Weber, CM-AVM1, CM-AVM2 or HHT. The RASA1 geneContinue reading “What is a RASA1 gene mutations relevance?”
[ citation-source ] Validation of material is in process. This is a health site which advertises it is produced by a doctor. I am not familiar with this doctor, butContinue reading “Klippel-Trenaunay Syndrome [ explained ]”
Build health literacy for life – Self, Community & Overall Wellness (healthliteracyweb.com) Barbara Kondilis, the primary author for these pages, has taught at the university level for over 15 years,Continue reading “Build health literacy for life [author Barbara Kondilis]”
New diagnostic procedures and interventions for patients with systemic lymphatic disease [May 13 Zoom Symposium]
Join LE&RN for a free, online Symposium with Dr. Christopher Smith (mailchi.mp) [sharing]
Rare Scholarship | EveryLife Foundation for Rare Diseases [sharing]
This is there 1st publication and it ‘s awesome. | link |
Expert in Vascular Anomalies Joins Children’s Hospital of Philadelphia to Lead Innovative Frontier Program Published on Jul 13, 2020 in CHOP News Prominent pediatric hematologist-oncologist Denise Adams, MD, has joined Children’s Hospital of PhiladelphiaContinue reading “Dr. Adams comes to CHOP from Boston Children’s Hospital”
Re-introducing the Hamburg classification system of vascular malformations. A European alternative to the ISSVA classification system. The Hamburg classification system “is one of the more commonly used systems to describeContinue reading “Re-introducing the Hamburg Classification System”
Vascular Anomalies Classification: Recommendations From the International Society for the Study of Vascular Anomalies | American Academy of Pediatrics (aappublications.org)
From: Vascular Anomalies Classification: Recommendations From the International Society for the Study of Vascular Anomalies | American Academy of Pediatrics (aappublications.org) PDF “Vascular anomalies (vascular tumors and vascular malformations), oftenContinue reading “Vascular Anomalies Classification: Recommendations From the International Society for the Study of Vascular Anomalies | American Academy of Pediatrics (aappublications.org)”
Does the name of the diagnosis matter when you are born rare into the Congenital Vascular Malformation Community?
This is a very personal reflection today. It was prompted by a parent of a child born rare. likely with some variant of CLVM +/-H. The choice of this acronymContinue reading “Does the name of the diagnosis matter when you are born rare into the Congenital Vascular Malformation Community?”
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The Rare Disease organization chose the Zebra as its mascot. Were I too have a say I would choose either a Tiger or a Appaloosa or Painted Horse as mine.Continue reading “Zebras are ok, I feel more Tiger or Appaloosa”
We’ve been working on the last pieces of our 4th edition to our medical and life Journal, Seen, yet Not Heard. One of the new components to it is aContinue reading “4TH Edition of Seen, yet Not Heard Journal is fully live – 2021, April 20”
Published on August 25, 2018 Pierre VabresProfessor of Dermatology – Pediatric dermatologist – Genodermatologist 8 articles In 2012, these conditions were found to be caused by mosaic mutations in the PIK3CA gene,Continue reading “What is new in targeted drug therapy for CLOVES and Klippel-Trenaunay syndromes?”
When I was trying to help a mom of a child born rare yesterday I got the impression that the alphabet soup that is our syndromes and symptoms, our diagnosticContinue reading “SORE THUMB CHART for Combined Congenital Vascular Anomalies”
[FULL ARTICLE] Credit goes to Cindy Meyer Bruckner for this find. Published on Today’s Parenting Team Page. Thank you Cindy. Published on April 7, 2017 As we enter the playground area,Continue reading “What I wish parents would do when your child comments on my daughter’s special needs”
Short answer – It depends. While the above image is not showing capillary malformations or vein malformations; lymphatic swelling sure seems prevalent. What stage swelling are you at? I’d bet,Continue reading “Is there anything I can do about my excessive swelling in my feet and legs?”
Our literature search discovered the above image as part of a European presentation of the 2014 breakthrough diagnostic classification protocol from the ISSVA. It’s good news to see the internationalContinue reading “ISSVA 2014 Classification presented in Europe”
Here we go! The 4th edition of Bill & Dawne’s Journal is online now. It came to be because they elected to split out their personal and family journey fromContinue reading “introducing SEEN YET NOT HEARD | 4th edition”
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