KTandME's Journal

I have be told by a doctor/s that I have klippel trenaunay, Parks Weber and even possible Sturge Weber or a little of each, I guess it just goes to show how little my VA doctors know

I have had doctors have told me that I have parks weber. I have concerns that I have parks weber as I have an AVM that is connected to my thoracic artery.

Wow where do I start? I have a lot of pain, I have a lot of cramping in my right leg and right arm. When I sleep at night I have a lot of cramping in my right and left leg. I just have to move a little the wrong way (what ever the wrong way seems to be for the night) and a huge cramp will hit me. I just have to try and stretch out and I get a very painful cramp. My right hand will cramp if I grab something IE: I can try and close my dishwasher and my fingers will just cramp. Days will go by and no cramping and then all the sudden my fingers will cramp, I can even be doing the same thing I have done for the last several days.

To describe my symptoms/look hmmm

1. I have a birth mark that goes down my entire right side of my body. I also have a bit of a birthmark on my left back shoulder. I have a small birth mark on my head and back of neck. The birth mark looks pink in some areas red in others and dark purple in others. When I have a fever it turns bright red to pink and when I am cold it turns purple.

2. My right leg is about 5cm longer than my left leg. About every part of my right side is larger than my left IE: My right arm is longer and larger than my left, my right butt check is larger and my right breast is larger than my left. My right leg has grown about 2cm in the last year and appears to still be growing

3. I have at least one AVM that is connected to my thoracic artery.

4. I have chronic venous insufficiency in my right leg

5. I have swelling bad enough in my limbs that I wear compression hose on both legs and chest and right arm.

6. I have a vaso constrictor disease affecting my right foot/toes and my right hand/fingers.

7. I have chronic eczema on my right leg I also just started getting eczema on my right arm.

8. I get ulcers on my right back, right arm and right leg. I just started getting multiple ulcers on my right leg and they feel like they will make my leg explode.

Now to things I have been diagnosed but I am trying to find a doctor at the VA hospital that will tell me whether these items are caused or related to KT.

1. Anemia pernicious

2. Ostio penia
3. sinus bradycardia
4. Sinus Arrhythmia
5. 21 degree curve in my spine (scoliosis)
6. hiatal hernia
7. inguinal hernia
8. chronic venous insufficiency

9. hypo thyroid

I am sure there is more but I can't think of it right now.

I just got what I call my "man bra" last week. My right breast is larger and swells. They had me go for a ultra sound and it appears have thickening skin and a lot of blood vessels.


Well I am stopping for now and going to eat and call a night