Hi everyone…my son is scheduled for amputation of his left leg next Thursday with W. Michael Park at the Cleveland Clinic. Does anyone have any experience with Dr. Park or with Cleveland Clinic?
No personal experience, but the Cleveland Clinic is right up there next to the Mayo Clinic in terms of reputation. I'd expect he's in good hands. I hope this very difficult thing goes as smoothly as possible for both of you.
Thank you so much.
You may wish to join this sub- group…http://www.avmsurvivors.org/group/extremityavms. There is a search box located on the this site. Type in Dr Park or Cleveland Clinic and see what pops up.
I hate to see this, Jeannie. Please reach out to Dr. Buch here in Dallas for a consult before Adam's amputation. One more doctor's opinion can't hurt. Best wishes, GK
Thanks for the recommendation. I will talk to him.
Hello Jeannie,
Cleveland Clinic is a leader in vascular science and medicine (worldwide)... in terms of reputation or speciality field of study you have selected a med center of the highest quality. You mentioned that your son's AVM runs from his foot to his hip and that the doctor is recommending a below the knee amputation. What I have generally learned from fellow AVMer's here and on the Facebook AVM Awareness group is the amputation site is most often between the AVM (on an extremity) and the rest of the body. I have been told that if any of the AVM remains post amputation there is a fair to good chance the AVM will regrow- either on the surgical site or somewhere "upstream".
I have an AVM on my foot that is arterial fed. I have a sore on my heel that is unlikely to heal. Surgical removal of the AVM has been ruled out due to high probability of regrowth. Coil insertion in the main artery feeding the AVM remains a possible intervention for me- though the foot is fed by three arteries- eliminating one creates challenges related to adequate blood flow to maintain/grow skin, circulate blood to other parts of the foot, etc... I think I am heading for a below the knee amputation as well. It is a big step for any of us to choose a course of action that seems as radical as amputation. For me there is a psychological or emotional attachment to my body parts that doesn't make a lot of logical sense. When I get to the point where I am a. in regular or constant pain b. foot is infected- which threatens to become a systemic (whole body) infection c. so limited in activities that I can participate in life... then I will know its time to give up the foot/lower leg and embrace the many options available for amputees.
There certainly seems to be a much clearer path of treatment and support available to assist someone recover from an amputation than there is AVM treatment. What you may have heard from others here is true- there is no one "right" course of action that applies to people afflicted with AVMs. Best of luck to you and your son! Mychal
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I have been going to the Cleveland clinic for 6 years now for treatment of my pelvic avm. I absolutly love my drs as they saved my life and continue toainysin my quality of life. I don’t know Dr. Park but I know the facility is one of the best. I would still seek another opinion from another vascular surgeon there. I would call Dr. Srivastava she is a vascular surgeon and interventional radiologist and I trust her with my life.
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Mychal's post is so similar to mine.And you are getting top notch support and info from the members......I jusT re-joined this group after a long hiatus...I happen to be in a pain episode recently, so I started to roam anonymously.I feel better now, but it is time for me to pay back this community of Extremity AVMs. ........I am 60 now and was borne with a VM on left pelvic area and thigh. It has been a difficult life. I LIVE on the sidelines limping thru life....This is my reality. Anyway, my immediate concern is your young adult son. Assuming he is being treated by an excellent team of Vascular specialsts, perhaps the time has come for a major change in his life. YOU BOTH FACE A CONSIDERATION of a life changing surgery which might be life sparing as well? And might an amputation give him a better quality of life. ...I cannot exercise b/c if my heart healthily pumps blood, then my vascular vessels widen and I have more pain in the affected VM area....It is considered a failure when a diabetic loses their leg.But,to us,there is an opportunity for a lifestyle not consumed by pain. I wd rather have à prosthetic than this tangled Web of blood vessels.Just speaking for myself. But I never chose it as elective surgery. I had hope in the "New" field of Interventional Radiology, and I sought out the best specialists. Lenox Hill Vascular Team is probably equivalent to Cleveland Clinic Team. I had 11 treatments. Yes there has been improvement.But I have a life of chronic pain.I am making concessions. I ride a scooter in the mall,I live on one flòor primarily. Does this sound like your son'future? Maybe the amputation will be a blessing in disquise? Your son' situation is emergent now.An ulcer that infected could get into his bloodstream, possibly causing damage of heart valves. Am I missing any opportunity for last minute heroics here? It sounds like all alternatives have been explored.Mine is a VM, Veins and not arteries. Arteries are thicker walled b/c they do the major pumping.Arteries squirt blood. THE SITUATION is so much more severe than mine.I have lost the vein valves, so there is back flow and pooling of blood in my VM.An amputation wd not reliève my symptoms, b/c the VM is higher than my thigh. As for level of amputation, THE approach seems to be less removal is better.Maybe the MRI shows the nidus is below the knee? Your docs have the MRIs that map out the AVM. Easier to fit a prosthetic for below the knee. Knee joint is spared. There may be new AVM treatments down the road, your son is so young. The major goal here is to heal the ulcer, right? Sorry to have just jumped in and said so much. I feel I have lots to share, to perhaps help your make your decision. You may be able to avoid the amputation. THEN you'll go with that. I did have one wound/ulcer after an alcohol embo. It ruined a summer, but it did clear up with debridements etc. I AM BUT ONE VOICE. Listen to your doctors.Do you trust them?
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I so appreciate You sharing your wisdom and experiences! It is devastating to read that this young boy may lose his limb… but knowing the pain that these avm’s cause put’s a whole different perspective on the decission of amputation! Our 13 yr old daughter was just diagnosed with a “high-flow AVM of the right mid-thigh”. We discovered through an echocardiogram that it is fed from the femoral artery… they want to do an mri w contrast to see how many branches are feeding it. It has hurt her since she was about 5 yrs. old. We live in Idaho so it is hard to find specialists or even figure out what the problem is to know where to look for help. We were told it was a hemangioma for many years. Then we were told it was a Cavernous Vascular Malformation and she had 5 laser treatments a yr ago in Salt Lake utah. It helped temporarily but as she is on the cusp of puberty it is growing rapidly. I have found Boston’s Children’s Hospital AVM center and Lenox Hill Dr. Robert Rosen… I am getting her files together to go to each place for consultation. I want to take her to the very best… would you recommend these places?
I would appreciate any advice… it is so painful for her that she compression wraps it and she says she wants cut open and it whacked out! ;o(