Please Read/Reply! Diagnosis help + pictures - Page 2

Island · #11 02-24-2007, 08:52 PM

I havent heard back yet. I'm thinking it didnt go through....

I understand that the doctor is probably very busy though. Any way it could be forwarded?

Island · #12 03-07-2007, 09:56 PM

still nothing. is there any way it can get forwarded to him by a moderator on the forum??

please help! im dying to know about my case

nickbar · #13 03-08-2007, 08:40 PM

Can you email me the information you want forwarded and to which docs you want me to contact?

Corinne

missy · #14 03-08-2007, 10:49 PM

If you mail it to contact@birthmark.org, with pictures attached, I can send it to two or three different doctors.

Dr. Rosen has been having email problems... my apologies!!

Missy

Island · #15 03-12-2007, 02:53 AM

Thanks guys! I will do that right away

Island · #16 03-12-2007, 07:37 PM

Just wanted to say thank you for forwarding those for me! Both doctors told me that I more than likely have KTS. It is quite a shock to learn that I have been misdiagnosed for 20 years!

I am writing emails back and forth with one of the doctors and he is helping me figure out what I can do next.

Thanks again!

nickbar · #17 03-13-2007, 06:51 PM

Thank yo ufor the update. Good luck and take care.... and keep us posted.

Corinne

#18 03-24-2007, 01:52 AM

Hi again,
I'm glad what I wrote about last month was helpful. I was misled also about what I had. I was told it was hemangioma, but I also had severe varicose veins in one leg. My bad leg is also shorter and smaller, but I've never had the lengthening surgery. I've walked like this so long that most people don't know I limp unless I am super tired (after the gym and walking the dogs). The whole thing I know sounds cliche, but the other people are right. This does not define you, but it also makes you who you are. I think I'm a much stronger person having to live with this condition. When I was your age, I looked at it like a big secret, and when I went on dates, it was like I was getting away with something. Hard to explain but I think you understand. In high school, when girls would wear short skirts (the 80's), I stuck to jeans. I usually had many interests and never let this condition stop me except for one....I would have liked to be an actor but always felt ashamed of my condition to pursue it. So, some advice, do all you want to do because every person has something so don't let it interfere with your goals. I have a beautiful husband and two businesses and have never felt ashamed of my condition with him. He's accepted me as I am. As for seeing a specialist, try a couple. Like I've stated, I was told many things until I was in my thirties. My doctor in Seattle, Dr. Kaj (pronounced Ki) Johansen, is the leader in vascular anomalies in the Northwest. He took my case with no problems and diagnosed me with KTS. My condition brings on AVMs in my foot area and he removed them with no problems. It really does help to see someone who knows. I actually had a doctor tell me that my AVM was a callous and that I should make a hole in my tennis shoe so it won't rub and it'll go away. He was a vascular surgeon!!! I also have thrombosis around my knee. Apparently this is caused with something about the lymphatic system. I don't remember all the particulars, but it could be something to read up on. I hope this helps and I look forward to hearing your reply.

Linda

nickbar · #19 03-30-2007, 04:32 PM

Linda,

COuld you pass on to us the contact information for Dr. Johansen. I've seen the name, but I don't believe VBF has the contact info. My son was treated by Dr. Perkins at Seattle Children's Hospital.

Thank you for sharing your story.!!!!

Corinne

Island · #20 12-25-2008, 06:37 AM

Quote:

Originally Posted by Monemi

Hi again,
I'm glad what I wrote about last month was helpful. I was misled also about what I had. I was told it was hemangioma, but I also had severe varicose veins in one leg. My bad leg is also shorter and smaller, but I've never had the lengthening surgery. I've walked like this so long that most people don't know I limp unless I am super tired (after the gym and walking the dogs). The whole thing I know sounds cliche, but the other people are right. This does not define you, but it also makes you who you are. I think I'm a much stronger person having to live with this condition. When I was your age, I looked at it like a big secret, and when I went on dates, it was like I was getting away with something. Hard to explain but I think you understand. In high school, when girls would wear short skirts (the 80's), I stuck to jeans. I usually had many interests and never let this condition stop me except for one....I would have liked to be an actor but always felt ashamed of my condition to pursue it. So, some advice, do all you want to do because every person has something so don't let it interfere with your goals. I have a beautiful husband and two businesses and have never felt ashamed of my condition with him. He's accepted me as I am. As for seeing a specialist, try a couple. Like I've stated, I was told many things until I was in my thirties. My doctor in Seattle, Dr. Kaj (pronounced Ki) Johansen, is the leader in vascular anomalies in the Northwest. He took my case with no problems and diagnosed me with KTS. My condition brings on AVMs in my foot area and he removed them with no problems. It really does help to see someone who knows. I actually had a doctor tell me that my AVM was a callous and that I should make a hole in my tennis shoe so it won't rub and it'll go away. He was a vascular surgeon!!! I also have thrombosis around my knee. Apparently this is caused with something about the lymphatic system. I don't remember all the particulars, but it could be something to read up on. I hope this helps and I look forward to hearing your reply.

Linda

This made me BAWL. This is exactly how I am right now. I'm 22, and have worn nothing but jeans my whole life. I'm scared to death of dating anyone because I dont want to be judged or made fun of or scare people away. I just want to get it removed but I don't think I can.