Comments on: Living With Klippel Trenaunay Syndrome (KTS) – Symptoms and Treatments

By: Suzana - KTS with Arthritis

Suzana - KTS with Arthritis — Sat, 18 May 2013 06:21:46 +0000

Hi Arianna,

Thank you so much for sharing that with us!

I am a 30 year old female from Melbourne, Australia. I have KTS in my left leg. I had two surgeries on my knee at ages 5 and 7, I have never let this affect my life and have led a relatively normal life, although I too get mild depression at times, only when the pain kicks in.
I have developed arthritis in my knee and ankle over the past 7 years and it has gradually worsened and has become very painful at times.

I will no doubt need to have a knee replacement sometime in the near future, but the doctor has advised that I deal with my current pain for as long as possible before attempting surgery.

Just wondering if anyone here has had a knee replacement or an ankle fusion with KTS? I am trying to find someone to speak to regarding these surgeries as I am scared of the possible complications that come with this surgery.
My email is suzana83@bigpond.com

Many thanks
Suzana

By: Laurie

Laurie — Sun, 05 May 2013 22:53:37 +0000

Dear Amy, I’m sorry nobody had any answers for you. It sounds like you’ve been through so much with your KTS and port wine stain! I’m glad you were diagnosed with Mrs Rosas’ help.

Have you found anything to help reduce the swelling in your arm?

By: Amy

Amy — Tue, 12 Mar 2013 17:25:32 +0000

Hi,
My name is Amy and I have had a port wine stain that has covered my left arm, left chest and left shoulder since birth but it wasnt until I was in my late 30′s until I experienced the lymphedema and pain due to a car accident and was then diagnosed with KTS. It has been a struggle for me to wear the sleeve for it is uncomfortable. I have slowly come to realize that I must wear it as much as possible for it has gotten bigger in the last 2-3 yrs. I am now 46 yrs old and I am not going to let it beat me! I have gone back to school for a BSN at LSU school of nursing. I dont experience much pain anymore as long as I take my medication and wear the sleeve as much as possible, and most importantly I feel relief when I go to occupational therapy as an outpatient for lymphedema massage, but I do feel pain around the left shoulder blade muscle area and no one has an answer. Going to therapy really gives me relief for days. I take procardia XL which is a channel blocker to keep the vessels open and lyrica for peripheral polyneuropathy that comes and goes. I too enjoy when people stop me and ask me about my birthmark on my arm and I am able to educate them about it. The port wine stain has never bothered me only the swelling in it bothers me as for as looks go. I am proud to have had the help of Mrs. Erin Rosas to help diagnose me a few years back for I had went to numerous doctors and no one knew what I had. I was in a great deal of pain at that time due to flying when I didn’t know that I had this. Due to several flights my ulnar artery had basically constricted off and wasnt really functioning at all plus the build up of lymph fluid. I just recently went through lymphatic manual drainage last year with only slight reduction is swelling but a world of difference in an overall general health feeling and less pressure in the arm. I am currently searching for more answers to reduce the swelling in my arm and I am not going to give up with it!! If there is anyone that has any answers please let me know!

By: Karla

Karla — Fri, 22 Feb 2013 05:54:04 +0000

Hi, my 6 year old daughter was diagnosed with KTS last year. She’s always had a port wine stain on her thigh, followed by venous malformations and varicose veins. Her middle toe on the leg is longer than the rest of her toes and there is huge vein leading up to it that is very thick and sticks out on her foot (It’s the same vein that is a varicose vein on the side of her calf muscle. She has a slight length difference between her legs, as well as width. She’s also got knock knees. Most people don’t notice it because it’s not as severe as some of the pictures I’ve seen online, but my concern is that I keep hearing that it progresses with time. For now, she is not at all affected by it, other than cosmetically. I see that you were diagnosed at 13, did you have any symptoms prior to your diagnosis? It seems like I have to do a lot of digging to find any info on KTS other than the regular websites that just describe what it is word for word as the other websites. Anyway, I stumbled across this page as I was trying to search all the back pages of the internet. Thanks for your blog!

By: Laurie

Laurie — Fri, 21 Dec 2012 00:02:11 +0000

Thank you for talking about KTS here. I don’t know much about it, and I admire people who aren’t just surviving it – they’re living fully and deeply!

By: Ashley

Ashley — Tue, 24 Jul 2012 11:01:43 +0000

When I first found out I had KTS I felt like my whole world came crashing in. At the time I knew I had a problem but having a name for it all scared me I was 13. And at first the doctors didn’t know what it was. They just knew how to fix it. Luckily I don’t have it as severe as most. But it is still a struggle. I started high school having to wear a supe tight compression stocking (always wearing pants because I hated people knowing I had this problem. I went through numerous surgeries to fix the veins because more kept forming and doctors even brought up amputation wich crushed me. But I pushed through and I’ve gone a year with out having a surgery on it because it has made mega improvements exercise helped it a lot I am now 17 and I am to the point where I don’t get pain all the time and to wear I don’t have to wear the compression stocking all the time. And as good as its doing I do still get frustrated but you know what I actually like showing of my birthmark (port wine stain) to everyone because I now love when they ask me about it and I tell them about my struggle with KTS and I’m proud to be able to say I dealing with it and I got through it d am living a for the most part normal life. Don’t ever give up no matter how hard it may seem.

By: Lily

Lily — Sat, 07 Jul 2012 05:32:12 +0000

You’re right Arianna and I think it’s fantastic what you are doing . I don’t know his many times doctors have said to me ”what, can you spelling that for me” when I’ve mentioned my condition.
So I’m sorry if you thought I was demeaning or minimizing anyone’s experience because I wasn’t. It is a spectrum condition and varies significantly from person to person, as do the symtoms. I think I’m probably frustrated with my KTS because I have no control over it yet it impacts me so significantly.
It was a frustrating, difficult, familiar day in an ongoing battle to gain control of my health.

By: Arianna Faro

Arianna Faro — Sat, 07 Jul 2012 04:07:54 +0000

Hi Lily! Thank you so much for your comment. I am so sorry to hear of all in which you must battle on a daily basis; I cannot even imagine how difficult that must be; dealing with just one condition is enough to exhaust me, so I give you a lot of credit as you must be an incredibly strong person/fighter!

With KTS, I think it is important to remember that it does manifest itself in each patient differently; sometimes on a dramatic scale, unfortunately. Some patients live a relatively normal life with it while others are born with it to a much more debilitating degree, overall impacting their quality of life significantly.

I also know of cases in which KTS impacts people’s internal organs. In fact, in one close KTS friend of mine who has the condition in his arm/chest, his malformation was trying to push his heart over and his family was told he would more than likely not survive because of this when he was a young baby (he is now in his twenties). So while I am lucky enough to not have my organs be impacted by KTS, there are unfortunately patients whose internal organs are greatly impacted by this condition.

Wishing you all the best!
Arianna

By: Arianna Faro

Arianna Faro — Sat, 07 Jul 2012 03:52:59 +0000

Thank you so much for your kind words, Mrs. Merlino! You have always been a positive force within my life and for that I am very much so grateful. Thank you for having been not only an excellent and inspirational teacher, but a true friend!

Much love,
Arianna

By: Arianna Faro

Arianna Faro — Sat, 07 Jul 2012 03:51:36 +0000

Laurie, my pleasure and thank you for helping to expose KTS to the world; I am so appreciative that you took the time to not only research the condition but to share that information with others.

A loyal fan of your blogs,
Arianna