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-   -   help - new zealand (http://birthmark.org/board/showthread.php?t=579)

Lee New Zealand 04-04-2004 07:16 AM

help - new zealand
 
I went to see Dr Tan with regards to my symptom. I have KS and port wine, Dr Tan (after my ultrasound) would like to check my veins underneath near the bone to see if it would be safe to operate, as I suffer terribly with thrombosis (in summer) and cramps in winter. Anyway, he suggested that having lazer treatment will not help my cause. Please can anyone help me, I desperately would like to remove this pws, it's all over my right leg. I have had lazer treatments before, which has lightened it, but not taken it away. Please anyone!!!!thank you Lee

Lise 04-04-2004 04:20 PM

Re:help - new zealand
 
Lee,

With KTS, a surgery can be done if the deep venous system is intact. As to your portwine stain, it is a part of KTS; unfortunately a PWS cannot be taken off, only lasered (and it does not always work).

You seem to be in very good hands with Dr. Tan. For more information and support on the Web, I suggest you go to www.ktfoundation.com.

I hope this helps a little. Good luck. And keep us posted with developments.

Lise (Montreal, Canada, I have AVM of the lip)

Lee New Zealand 04-04-2004 07:09 PM

Re:help - new zealand
 
Hi Lise, thanks for the information, Dr Tan was very accommodating in this regard. However I live in Auckland and he is in Wellington, which would mean if I fly will take 1hr and if I drive will take 6 hrs. I have a son of 6 and it would be rather difficult to tag him along. (even though he would love to fly). Dr Tan will be informing me of another surgeon here in Auckland. I am a bit sceptical, and I have to go for an ultrasound to check if my veins are ok. With this being done,and suggested by Dr Tan (apparently my syptoms with age can deteriorate) that I should have this done, what I need to find out is if anyone has had this done, and if there was any change to their pws? I might be wrong but if this operation is done, and the blood flow is corrected will this not help the pws and not be soooo red or purple? looking forward to your response. Thanks Lee

Lise 04-04-2004 07:36 PM

Re:help - new zealand
 
Lee,

I know very very little about KTS, so I can't answer your question. I suggest another link: it is a support group: www.k-t.org. If you surf on their site, you'll come to a place saying "Visitors to this page from other countries".

Also on this VBF site, left menu, click on Medical Papers: the last document listed is about treatment of KTS.

Hello to New Zealand from (French) Canada! :D

Lise


Lee New Zealand 04-05-2004 05:36 AM

Re:help - new zealand
 
Hi Canada
Thanks for the information, I went into the website and asked to be put on the mailing list. It's awesome that all this information is available. I am going to wait for a response from the website and ask them the questions. Thank you for your help, I am most grateful. What treatment are you going to get, are u going to get help?
Please stay in touch Lise, and thanks heaps.
Lee from Auckland, New Zealand

Lise 04-05-2004 05:49 PM

Re:help - new zealand
 
Hi Lee,

I'll e-mail you some time this week. Here is another link in the meantime www.birthmarks.com

Take good care of yourself.

Lise

Lee New Zealand 04-05-2004 07:36 PM

Re:help - new zealand
 
Hi Lise, awesome web site, joined membership, I found alot of information, and I definately have the KTS, vascular anormalies syndrome. Anyway I found loads of useful information, however the treatments etc. nothing like that in New Zealand, so frustrating!!!! look forward to receiving an email from you. Cheers Lee


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