had since birth, or developed them soon after??? I have been having serious health problems for the last 3 months. I was born with a tumor (that was engulfed in vericose veins). 47 years ago, The vericose vein ruptured the tumor and it was removed, ( the tumor had grown to the size of a softball) opened me up hip to hip. But the surgeon had never seen anything like it, so they left behind the host vein in fear of it....This vein has caused 2 surgeries since then. Fast forward to 3 months ago....Started to have problems with my kidney, had an MRI done, results...3 cysts in the left kidney and a dime size stone. I only have a left Kidney. The right one functions at less than 15%, I had E-coli in 2000 and it destroyed the right kidney and some of the left one. Also found was this D*#!n varicose vein has reared it ugly head and turned my ovarian artery into a huge varicose vein and it is strangling the ovary. The ovary has formed a cyst around it to try and protect itself, but the fluid in the cyst has become toxic. If it ruptures I will become systemic. I only have one ovary, when I was 24 I had cervical cancer and had a hysterectomy....The Dr. sent me to a Vascular Surgeon. More MRI's... The Host vein is attached to my heart and other organs, including possible the colon. Dr. said it was like a spider web of sorts. IF it is attached to the colon I could lose the vast majority of the colon. I am awaitng to get a colonoscopy done to see how much damage there is. I am not looking for sympathy. I'm looking for ANSWERS...I am VERY optimistic about this. I have dealt with this all my life. What I am looking for is someone who might know someone who this has happened to, and what the out come was. I have surfed the web countless hours every night, seen pictures, and most outcomes are not the best odds. I am told this is very rare and they are not sure what to do for it or me as this host vein has been in my body for 50 years. They said if this ruptures I could bleed out, if I did not get to the hospital ASAP. Apparently no one (Drs.) knows how to remove this vein from my heart, or the other organs.....So they are conferring with out of state surgeons... Anyone?????? I am sorry this is soooooo long, but I just need to get some answers to this!!! I have not told Art the "whole" truth, till I can find out more about this, he will just worry himself to death.......
This is the web site the Vascular Surgeon(s) gave me..
This is what it is called..........Cavernous Hemangioma: Rare Disease
Office of Rare Diseases (ORD) of the National Institutes of Health (NIH)
Cavernous hemangioma is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Cavernous hemangioma, or a subtype of Cavernous hemangioma, affects less than 200,000 people in the US population.
Source - National Institutes of Health (NIH)
Cavernous hemangioma: A vascular tumor preponderantly composed of large dilated blood vessels, often containing large amounts of blood, occurring in the skin, subcutaneously, or both, and also in many viscera, particularly the liver, spleen, pancreas, and sometimes the brain. The typical superficial lesions are bright to dark red in color; deep lesions have a blue color. A cavernous hemangioma in the skin extends more deeply than a capillary hemangioma and is less likely to regress spontaneously. (Dorland, 27th ed; from Stedman, 25th ed)
Source: Diseases Database (The blue one in color is what I have.)
These tumors are benign by cell type but can have serious consequences. Cavernous hemangiomas are wild, jumbled growths of blood vessels fed by numerous tributary arteries (making surgical removal extraordinarily difficult and risky in most cases). They are probably all present at birth, but start to enlarge rapidly after delivery. They may attain great size and cause significant disfigurement or even impinge on vital organs or the airway.
Aside from disfigurement and possible problems caused by the sheer size, the tortuous blood vessel channels within the hemangioma cause the formation of platelet clots. These clots can consume platelets so rapidly that the bone marrow cannot keep up with production, and bleeding may develop elsewhere in the body because of severe reduction in the level of platelets in circulation.
This is the web site the Vascular Surgeon(s) gave me..
This is what it is called..........Cavernous Hemangioma: Rare Disease
Office of Rare Diseases (ORD) of the National Institutes of Health (NIH)
Cavernous hemangioma is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Cavernous hemangioma, or a subtype of Cavernous hemangioma, affects less than 200,000 people in the US population.
Source - National Institutes of Health (NIH)
Cavernous hemangioma: A vascular tumor preponderantly composed of large dilated blood vessels, often containing large amounts of blood, occurring in the skin, subcutaneously, or both, and also in many viscera, particularly the liver, spleen, pancreas, and sometimes the brain. The typical superficial lesions are bright to dark red in color; deep lesions have a blue color. A cavernous hemangioma in the skin extends more deeply than a capillary hemangioma and is less likely to regress spontaneously. (Dorland, 27th ed; from Stedman, 25th ed)
Source: Diseases Database (The blue one in color is what I have.)
These tumors are benign by cell type but can have serious consequences. Cavernous hemangiomas are wild, jumbled growths of blood vessels fed by numerous tributary arteries (making surgical removal extraordinarily difficult and risky in most cases). They are probably all present at birth, but start to enlarge rapidly after delivery. They may attain great size and cause significant disfigurement or even impinge on vital organs or the airway.
Aside from disfigurement and possible problems caused by the sheer size, the tortuous blood vessel channels within the hemangioma cause the formation of platelet clots. These clots can consume platelets so rapidly that the bone marrow cannot keep up with production, and bleeding may develop elsewhere in the body because of severe reduction in the level of platelets in circulation.
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