I need to first start out by telling everyone that my AVM journey has been a long one. I was diagnosed with a malformation in my right leg when I was just seven years old. I used to get in trouble all the time at school because I couldn't sit still and I kept telling my mom that "it hurt to sit still". Anyway, after several doctors visits, I ended up at University of Michigan hospital in Ann Arbor Michigan, where I was treated for the time being. My last surgery which occurred in August of 2010, I had some heart complications on the table. I will not go into detail as to why I am not returning to that establishment because this is only meant to be positive. So, at 21, I was still in pain, and getting a PCP to scribe me medicine for it was like pulling teeth as they didn't understand my pain. I finally found a PCP who would help me, but at 23, she quit practicing, and then I found myself back in pain, without a doctor. In September of 2013, I had a massive rupture of one of the feeders in my leg and ended up in the ER of Borgess in Kalamazoo Michigan. My vascular specialist was Dr. Sean O'Brien, and I have NEVER been taken care of like that man took care of me. He fixed the rupture and had me see him a week later. I was excited because I finally found someone who got the pain I was in and understood my need to treat it. It was running my life. When I finally sat down with Dr. O'Brien, he explained to me that I was a "rare" case for him, and he did not have the tools, knowledge, or experience to continue treating me. I was absolutely crushed to hear this news and began weeping in front of him. Not crying, weeping. He told me to cheer up because he sends all of his patients to the best vascular hospital in the nation, Cleveland Clinic. I walked out of the office with a newfound hope. Expecting it to be a while before I even got a call, I was very surprised that the next day Cleveland was calling me to set up an appointment. September 24th, 2013 my life changed forever. I met Dr. Jeanwan Kang. She is a specialist of peripheral AVMs and has developed a WONDERFUL technique for treating them, and after a CT Angiogram, she said with a smile that she would take my case on. She wrote my PCP a letter explaining the situation and my PCP was more comfortable in scribing me more pain medication, and on October 4th, I went in for surgery. EVERYONE at the Cleveland Clinic is so unbelievably nice. I am a tough IV, and they were able to get one established really quick, they calmed my nerves beforehand, and they are just absolutely wonderful. I could not go through with the surgery however, because my airway got compromised. BUT everything and everyone was wonderful. I cannot stress enough how amazing Dr. Kang is. If you are from overseas, they have a staff to assist you with everything, and I'm just blown away at how wonderful they really are. I can't wait to go back in April for my surgery. If you want to know more let me know! :)
I'm so glad Cleveland Clinic is working out well for you, heavansent, and I look forward to hearing more about your treatments. I would like to ask you something that members have asked about before on a number of occasions, without me knowing the answer. What happens when a leg avm ruptures? What do you feel, and how do you know?
Well, dancermom, it was VERY sudden. It felt to me like someone took a hot poker and shoved it through my leg. I got SO dizzy and passed out, only to wake up in the ER and my leg was more swollen than it had ever been. It was so gruesome.
Thanks for the information, heavansent. It will definitely help someone.
Hello. From reading this I would like to this Dr to see my little girl. She has a massive AVM right above her brain stem and also has hydrocelphalus. They say there’s nothing they can do it’s too risky. I’m waiting for the neurosurgeon to contact me from Kaiser Sunset in Hollywood. He’s planning to schedule to have her seen with a vascular dr. They say they’ve never seen anything like her condition, so I’m looking around, praying and finding out what physician deals with rare cases like hers. Thanks for the info.
April, doctors who treat brain avms are generally not the same folks who treat leg avms. A good way to find a doctor for your daughter is to check out the Pediatric Neurosurgeons list i the Discussion area of the Parents group. You can also leave a comment on that group asking for members' recommendations. I would recommend you get an opinion from Spetzler at Barrow in AZ.
Hello heavansent I also have been treated at Cleveland clinic for 2 years now. My avm is in my pelvic muscles and is exceedingly rare and difficult to treat. I agree the clinic is amazing from food vendors to world class surgeons . I see Dr. Sunita Svrivastava (vascular surgeon) and Dr. Chalikonda (oncology/hematology) who is one of the best in the world! They were the only physicians after 6 years of looking for answers who would take me seriously! Although they tell me right now they can’t “cure” me they have been absolutly amazing with follow ups and helping with treatment of symptoms and pain management! I wish you the best as you continue your journey!
I am so very happy you have found a Dr. to treat you and had such a positive experience at the Cleveland Clinic! Good luck as you go forward and God bless!
Congrats on what sounds like a great journey so far! I hope that the rest of your journey is just as fulfilling.
Hi! My AVM was also a difficult case, to say the least. For 38 years, after it first hemorrhaged and announced itself, it was inoperable. In what was an emergency and life saving measure, Dr. Neil Martin at UCLA in CA. was miraculously able to resect it. It had leaked and formed a hematoma ON my brain stem. That had to be removed first. PLEASE see this surgeon if you can. I am a walking miracle. I have suffered multiple hemorrhages and many, many, bouts of hydrocephlous. The later was always treated with decadron, while I was hospitalized, again at UCLA. I can't emphasize enough the delicate location of my AVM, always impossible to reach, until now.
I know it has been some time, but did you have surgery at CCF?
The few peripheral AVM that I've read about ended just prior to surgery, and I've had the same experience personally, and difficult to stay positive when so confused about treatment
I actually have had to forgo my treatment at CC because dr Kang decided that I was not important enough to continue treatment. I have since gone back to the U where I met an amazing man name Joe Gemmette, and he has taken good care of me. Dr. Hilliard is treating my pain very well. If you want numbers or anything just shoot me a message or reply. I definitely know how it feels not to get good treatment, and I’m so sorry you’re going through the same.
Best of luck!
Thanks so much for the fast response
Unfortunately, I am not surprised by your response, but was still hoping for a surprise that would not require going to another state for medical care........
I have had medical problems most of my life, and spent plenty of weeks in hospitals, so it blows my mind and is hard to come to terms with this realization --worst yet, the seemingly standard policy of raising our hopes, then crushing them shortly after and adding more confusion to the most confusing thing in our lives ...... my only guess is their expression for "I don't know"
ANYWAY, my life is certainly most important, and whatever it takes
I will send you a PM ...... Thanks so much for your help