New to the forum and would like to share my story so as to help others.(Sorry for spelling)I am 52 yrs old and have been battling various forms of AVM's since age 12. Started with urinary bleeding, progressed to rectal bleeding and a whole lot of pain. From a small town and in the early 70's no one knew what to do. In 1978 I was sent to Houston and the journey started. I have been diagnosted with Cavernous Hemangioma, AVM's, several other variations and now put in the category of Cloves Syndrome. My AVM's range in size from spider webs, to spaghetti to the size of your finger. Been to 12 hospitals and up to 20 Drs and counting.
Had a birthmark flush with the skin on my right side at birth the size of a golf ball 6" below my arm pit and that was it. Once the bleeding issues started next was pain in numerous locations and veins appearing under the skin by my birthmark. I had abdominal exploritory surgey and immediately closed up.
I have AVM's in my right side and mid spine area, colon, rectum, anus, liver, spleen, right buttocks, right knee area and basicaly entire pelvic area but nothing in my brain which puzzles all. I have had 14 resection surgeries by a great plastic surgeon Dr. Joseph Agris in Houston from 1986 - 2010, 12 lazer treatments in my bladder and urethra at MD Anderson in the late 80's by a great man, Dr Andrew Von Eschenbach who took my case even though it was not cancer and later went on to be head of the FDA (which took care of the urinary bleeding)and 6 sclerotherapy treatments last year by Dr. Patricia Burrows while she was teaching at UT Medical in Houston after she left Boston.
I was excepted to see Dr. Steven Fishman and his team at Boston Children's Hospital's Vascular Anomalies Team in June of 2012 where I was placed under a new category called Cloves Syndrome. The best team there is. The AVM's in my pelvic region are to large and there are to many for treatment. Now losing use of my legs, bi-weekly iron infusions from blood loss for the last 10 yrs and more pain meds than I care to admit. I played sports, always worked and still do against Drs wishes but it helps to cope with the pain and mental stress and I dont plan on quitting until I become a danger to others. My message is keep fighting,try to live life to the fullist, keep as active as you can and keep looking fo help. Feel free to contact me if I can help. Good luck to us all.
Welcome, To Many to Count. I know a little girl with CLOVES whose family may wish to be in touch with you. If you accept my friend request, I can put you in touch with each other.
It is possible that the drug sirolimus may be able to help you. It has antiangiogenetic properties and is being used to help control complex vascular malformations as well as other conditions. Also, thalidomide has helped some of our members with HHT who were formerly dependent on transfusions for gastrointestinal bleeding. Please ask your doctors about these medications.
Welcome to the group and thank you for sharing your story/history with us. I have to say - The whole time I was reading your story, my mouth just dropped. I can't even imagine going through all of what you've been through. I believe strongly in your advice: To keep fighting, live life to the fullest, etc... you are truly an inspiration... :)
Thank you sir, just finished a series of MRI's and getting some EMG's done tomorrow. This is the most scared I've been with the rapdi decline in strength of my legs. I can fight pain but if my mobility is taken not sure how I will respond. I lost both my parents at age 15 two weeks apart, one to suicide and one to cancer. Had to grow up fast and became very independent. Having to have "I can do it all alone" has been a blessing and a curse, making me very driven but also took me a long time to open up and ask for help. This is going to be the biggest test since the lost of my parents but I won't go down with out one hell of a fight. Thanks for the reply and let me know if I can evry help you.
I would be more than happy to what ever it takes to help them. From what I was told in June at Boston Childrens the community just came up with the Cloves Syndrome category around 4 years ago. Thanks for the reply and pass on my response to the family. ■■■■■■■■■■■■■■■■■■
Welcome. That's quite a story. I applaud your spirit. It's amazing how much you've been through. Have you been diagnosed with HHT or does Cloves Syndrome kind of encompass that? Sorry if that seems like an odd question. I just have never heard of anyone with so many AVMs and I'd never heard of Cloves Syndrome either.
Trish, CLOVES is separate from HHT. CLOVES is much rarer -- only about 100 individuals have been diagnosed. I am continuing to learn that there are more conditions that I realized that can cause multiple avms. Blue rubber bleb nevus syndrome can cause multiple venous malformations, for example. All of these conditions are genetic. Sirolimus is showing promise for managing a number of these conditions.
There are at least a dozen members on this site who have numerous AVMs. Many have not yet been diagnosed with one of these conditions, so raising awareness is important.
Thanks for the info dancermom. You are so well educated, I'm in awe of your knowledge. I've seen several people with multiple AVMs just not as many. It seems like there could be some progress made in research given that all of these conditions are genetic. It sounds promising anyway.
Since I started seeing Drs. in the late 70's it started with the term cavernous hemangioma, then as the years progressed and Drs started learning more about it different terms like the one dancermom mentioned, Blue rubber bleb nevous came about. Also in my case because I had so many different size's and locations each year another name would be used. Some of the surgeries I had would not be recommended now and probably made things worse but at the time it was the only option and I don't fault the Drs or regret it because I was begging fo any relief. When I saw the team in Boston this past June I had never heard of Cloves either but because mine is so rare that is the closest fit. I really only have a fraction or what most Cloves patients have but so much of what I have doesn't fit anywhere it in their mind is what best fits. Just last week I took part in an hour long phone interview with Boston as part of their Cloves research efforts. From what they are telling me my case is very rare even for all they have seen. Feel free to ask me anything youd like, anyone I can help is my responsibility in my eye's. Thanks.
Hi, thanks for sharing your story with us. I'm 15 and I have an AVM on my chin and I was treated by Dr. Patrica Burrows before left for Houston in NYC. I can't imagine going through things at the extent that you did. Stay strong!! And thanks for the reminder of "keep fighting, try to live life to the fullest, and to keep as active as you can". Have a blessed day!
What a blessing it is to find this site and learn from people who have gone before me! I too have VMs all over- right leg from hip to ankle, left arm, left hand including in my fingers, neck, jaw, near my nose, in my lip and also have them peri vaginally and peri rectally. I knew AVMs were rare and didn't know until last week how uncommon it is to have as many as I have. Have you found anything that gives insight as to why you have so many? Hoping to learn more about myself through this process. I'm starting to realize how little I know about my own body and the things going on inside it.
I've had a fairly normal life and really started having pain in high school and college. After a lot o testing by my doctors they were unable to even diagnose me. At the time they were only paying attention to my head/neck because they were growing, becoming noticeable and also causing pain. Then almost 7 years later I had my first daughter and had excruciating pain in my right leg. My doctors put me in the hospital to treat me as if I had a blood clot (even after three negative ultrasounds in 4 days). The result was more tests and the discovery of an AVM in my right leg.
Having never seen much like it, they started doing research and found Dr. Wayne Yakes in Colorado. We sent my scans to him and got confirmation the growth in my leg was a vascular malformation. He is amazing and has increased my quality of life by A LOT. My first trip out to see him for treatment also allowed me the opportunity to have him look at my previous scans which confirmed everything was related.
I started to recognize different types of pain in my body and through those feelings, guessed I had other areas. Sure enough it confirmed more areas in my right leg and also vaginally. After my second pregnancy the vaginal AVM had grown and with the pain levels I had in pregnancy we decided to go ahead with treatments.
My third treatment on that area was last week and in the recovery room is literally where I learned how uncommon it is to have VMs in multiple places. There was a young man training to become a physicians assistant. The PA with Yakes made a comment to him, that I'm one of very few of his patients who has VMs in multiple areas. I had no idea there were so few.
So I'm interested in learning more about what they think causes this. I was told I didn't have anything genetic and that people who carry genetic risk factors also tend to have other deformities, including in their skeletal systems. Is that true? Do you know?
In the meantime, right now I'm just trying to learn what a "normal" recovery might be for the VM I recently had treatment on. It hasn't been the easiest week...
There may be others, including unique cases that are unclassifiable. Boston Children's is at the forefront of research on systemic conditions that can cause multiple AVMs or VMs. They have a free opinion service, but I don't know if they evaluate adults. To Many to Count may be able to give you more information. It is worth trying to have your condition identified, as you may discover a new treatment specific to your condition.
EONeal331 sorry to hear you have so many like me. I had genetic counciling done in mid 80's and they determined mine was a birth defect. My mother had 12 siblings, my father had 5 siblings and none of them or their children had any of this. Those of us with multiple sizes and locations are hard to put under any syndrome, Cloves as Dancermom explained is very new and that was the closest thing they could fit me in. Each procedure and recovery is different, technology has helped some but depending on where on how many types you have it's pretty much a guess. Most important thing is to not stop doing anything until you can't, try and fight through the pain and other issues but don't quit. As I mentioned in my original post mine range from the size of spider webs, to spagehetti to as big as your finger. Right now some are growing like a vine penetrating vertebra and disk from several spots in S, L and T regions and also wrapping around nerves as they exit the spine. Waiting on Boston to review. May 8th I'm having sclerotherapy and coils inserted in Houston by Dr. Rodrick Zvavanjanja who replaced Dr.Burrows after she finished her teaching last year. The sclerotherapy is around right knee, hip and ribcage. The coils will be inserted in a vein/vessel to large for sclerotherapy and to risky to remove that runs inside my right ribcage and turns toward lungs and heart. The coils are a reverse to stints, they reduce the amount of flow and hopefully stop blood clots which is the main concern. Let me know how I can help. Don't stop!
dancermom, Boston Children's Vascular Anomolies team has what they call clinic once a month, you fill out all the info on their website and send as many films, CD's and reports etc and the team reviews. They will review and see any age, the cut off for treatment at the hospital is 35 but they are all affiliated with Brighman & Womens and other hospitals so the team could do procedures at those site. Hope this helps.