Klippel Trenaunay Weber Syndrome - Page 2 — Scope | Disability forum
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Klippel Trenaunay Weber Syndrome

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Comments

  • gem_mumOF2
    gem_mumOF2 Community member Posts: 7 Listener
    Hi @Swav63 what a fantastic result, it’s such a shame that kts and the daily effects it causes on someone’s life isn’t recognised in the first stage but great that they cancelled the appeal and you got a positive and well deserved outcome. 
  • Jim2020
    Jim2020 Community member Posts: 3 Listener
    Morning all, I also was diagnosed with KTWS from birth, it affects my left leg, as I have got older (still sub 40) the pain is most certainly increasing. Although I was also diagnosed last year with blood clots on the lungs and therefore put onto blood thinners to stop further clots, which seems to have increased the pain I am going through. My question is, are there any other KT sufferers on here/out there that are on blood thinning medication and how do you manage the pain?
  • Swav63
    Swav63 Community member Posts: 5 Connected
    I have been on blood thinners for 2yrs now, and take slow release morphine tablets twice a day also top up with oramorph as and when needed along with gabapentin, did start on sirolimus for 6 months but came off it as it increased pain and infection but did reduce swelling considerably, am now waiting for a neurologist appointment to see if they can maybe stop the pain signals and then look at starting me back on sirolimus. 
  • Jim2020
    Jim2020 Community member Posts: 3 Listener
    Thank you for coming back to me Swav63, I also have my first PIP meeting on Monday morning (Via phone) so hopefully that will go well. Good luck with your neurologist appointment, Ive tried all sorts but nothing seems to help with the pain long term especially now I am on blood thinners its just seems to make it worse!
  • Swav63
    Swav63 Community member Posts: 5 Connected
    Remember on your pip call answer all questions as if it is your worse day of pain and discomfort, and write down roughly what your answers are to each question they ask you as they do tend to try and trip you up, hope all goes well for you 
  • Jim2020
    Jim2020 Community member Posts: 3 Listener
    Thank you again Swav. Not looking forward to the call to be honest.
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Good luck with the call @Jim2020 and please let us know how you get on. Whatever the outcome we'll do our best to support you. :smile:

    In regards to how you answer questions on your PIP assessment: it's no longer advised to respond as if it's your worst day. It's important to balance it, to inform them about your good days, your average days and your bad days, rather than only focusing on your worst.
    Community Manager
    Scope
  • Abiii
    Abiii Community member Posts: 1 Listener
    Hi guys. Just found this discussion. Very interesting. I have a port wine stain on my left leg as well as varicose veins, leg length discrepancy, and occasional numbness in my foot. Does anyone else find that their affected limb goes numb. I also think that I have poor circulation. I get cold really easily and my legs get tired really easily. I'm not sure if it is to do with KTS. I also seem to get tired a lot recently and have zero energy. I am lucky that I don't really get any pain though, apart from the occasional feeling of growing pains.
  • weeyin
    weeyin Community member Posts: 30 Courageous
    edited May 2022
    Hi Abiii my KT covers my right side.  I have leg length discrepancy also.
    My circulation is poor.  My hands and feet are cold 90% of the time.  I should be wearing compression stockings daily and this would help my circulation.
    [Removed by moderator- personal information]
  • weeyin
    weeyin Community member Posts: 30 Courageous
    I’m also fatigued daily.  Always feel exhausted even if I had a great 9 hour sleep! I take iron tablets daily.  Unfortunately I’m in chronic pain with my condition.
  • timmy1966
    timmy1966 Community member Posts: 2 Listener
    weeyin said:
    I was born with this condition which affects the right leg, foot and private area.  Does anyone else on here have this condition or know any specialists that deal with the condition.  Thanks 
    Hi all. Just discovered this site and would appreciate any help and advice from anyone suffering from KTS. My granddaughter has been diagnosed with this. She is six years old and is starting to suffer with the symptoms and changes of KTS
  • weeyin
    weeyin Community member Posts: 30 Courageous
    Hi I don’t use this site regularly.  I have tried to respond previously to people with KT Syndrome.  That was my hope when I joined the forum that I could communicate with people with the condition.  However, I became disheartened by how the site works.  I have left ways for people to reach out and make contact and my contact information gets deleted 
  • weeyin
    weeyin Community member Posts: 30 Courageous
    I also shared a link to my story of living with the condition.  This was also deleted.  It. Has put me off using the site as I don’t feel I can connect with people if you are only aloud to communicate on this site.  When communicating on the site private information is censored.  It’s a shame as i would have liked to have made friendships with people struggling with KT Syndrome.
  • Swav63
    Swav63 Community member Posts: 5 Connected
    I find the face book groups better as there always seems a lot of help and understanding, people on there have got me through my darkest day’s dealing with pain and depression, I also have made a few good connections with people that I regularly keep in contact with from around the world. 

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