Replies to This Discussion

Permalink Reply by Judy Brandl on December 14, 2009 at 5:56pm

I agree with you Beth. I've been told that if my AVM doesn't respond to the Proton Beam radiation treatments and shrink enough that the next step may be to try embolization. From everything I've read and heard about it having to be repeated possibly several times, I will decline having it and take my chances. It's too traumatic to go through in my opinion, I feel like I've suffered and am suffering enough as it is. I get that these doctors have a passion to beat this thing, but I sometimes feel like a rat in a laboratory.

• ▶ Reply

Permalink Reply by Kim R on December 14, 2009 at 6:19pm

I don't know where your AVM is located. Mine is on my left ear and scalp and parotid gland. I looked into Dr. Yakes' treatment and was told it would be at least 2 years of monthly embolizations (and trips from IA to CO) Not an option I could do financially or emotionally. One thing I have come to realize is that the "experts" (AVM doctors) don't agree with each other on the best treatment for AVMs. I had what was supposed to be an embolization at Mayo but turned out to be an angiogram because they knew they were in over their heads and told me they just wanted to observe the AVM and to come back in a year---WRONG. I had an embolization at my state's Univ Hospital and was told they had an AVM surgeon there to complete the AVM treatment---and then months later, after leaving me with a painful and incomplete embolization, finally admitted that no surgeons there were willing or able to do it. Then had to go out of state to get a surgeon who COULD do AVMs and was told embolizations are never really successful because the AVM just re-vascularizes and that surgery was required. Had the 5 hour surgery and skin graft and was told by the surgeon that he was almost positive he'd got it all. And now I'm 2 years later and the AVM is back (or was never really gone) and the surgeon doesn't want to do surgery because the AVM is too close to a major facial nerve and wants me to have an embolization with Onyx within 6 months. He's the one who told me previously that embolizations are not the right treatment for AVMs because they just re-vascularize! Confused??? Me, too. All this to say there are several options for AVM treatment, depending on which doctors you talk to. Do alot of research. In my case and the 2 other people I know in the US with ear AVMs--no matter embolizations or surgeries--the AVMs came back fairly quickly. I've been told AVMs are MANAGED, not cured. I guess that must be so. Hang in there, and don't feel like you can't state your own opinions on this site--that's what this support group is for. Kimberly

• ▶ Reply

Permalink Reply by Ron, Kansas on December 14, 2009 at 7:07pm

Hi Beth,

I read your profile and you have been through a lot!

While generally I don't like to read or get involved in discussions about DRs or treatments that didn't turn out well, I think there is merit to discuss types of treatment.

I guess I don't understand why a DR would recommend monthly embolizations. I know they like to space them out, and not do it all at once, to avoid brain swelling. Doing one per month for 17 months seems excessive to me. Chari had 4 embos plus aneurysm surgery over a five or six week time span. In the giant scheme of things, I perceive embolizations as being moderate risk--if you have 4 or 5 done. To me, having 17 done really increases your odds of something BAD happening during one of them.

From the start, one of the key questions we asked when considering what treatment to try was always "How many AVMs like ours have you and your team done? What has been your success rate?" We never accepted nor felt we were experimental. Do you have any feel for how long the Colorado place has been treating AVMs or how many AVMs they have treated?

Maybe in defense (not intentional) of the term "success", it might be that each embolization was a success in that it sealed off that portion of the AVM they were shooting at. I agree that to you and I, success means the AVM is GONE, period. In one example based on our experience, Chari developed a significant limp following one embo, and suffered from double vision following aneurysm surgery. In each case, the DR said the operation was a "success". HUH, how can you say that when she has a deficit? One nurse explained it to us this way: The life threatening issue has been dealt with, so it's a success in the eyes of the Dr. Any deficits are minor compared to the fact that you could be dead...... Not saying this is right, just one perspective.

I don't recall what kind of glue was used in our case, and it was 14 years ago, so I'm sure technology has improved and we've not kept up with it, as it didn't apply to us any longer.

I do think that every patient and every AVM are different enough that you can't pick one option for every person. And it's good that generally, we have a choice of treatment options, including not doing anything.

I hope nothing I write is upsetting to anyone--I'm not trying to change anyone's mind, it's just my opinion. I do wish you well. Thanks for sharing.

• ▶ Reply

Permalink Reply by Beth on December 14, 2009 at 8:25pm

Wow! It is amazing how much of what all of you have mentioned strikes a bell with me! I went to Chicago last April to have ethanol alcohol embolizations done by Dr. Vogelzang. (Dr. Vogelzang had phoned me in January to discuss this option after I was referred to him and then I had had an angiogram done by Dr. Vogelzang's team in Chicago in February leading up to the April procedure.) At no time leading up to the April trip to Chicago was I told that the procedure was life threatening. BUT, when I reported in April, right before the procedure, Dr. Vogelzang said, "You know you could die from this procedure." He also said an amputation above my knee was an alternative procedure. So, when he discussed risks with me, it was at a time when I was hardly capable of reflecting on or processing what he said. Also, he never mentioned to me that this would only be the first of numerous times I would need to come to Chicago to be treated. Nope. No mention was made of potential for necrotic wounds either. So, I went under anesthesia in a state of great confusion. I woke up feeling confused, too, because I heard a nurse say, "The doctor didn't do anything." Eventually, Dr. Vogelzang explained that he had done some "test procedures" and decided not to do anything. He advised me he had phoned Dr. Yakes while I was under anesthesia and discussed my case. He said I needed to go to Denver and that he would join me there when I went. I was in shock, but my gut said it was a very good thing that nothing had been done to me. My two trips to Chicago were very costly in terms of my share of hospital charges, physician fees, travel expenses, and hotel costs which totaled approximately $3,000 out of my pocket (and I live in Michigan). I didn't even factor in the cost of eating out and the annual leave hours used by myself, my sister and my daughter. In April, as soon as I returned home, I starting searching on the web to find out more about Dr. Yakes and Denver. That was how I found this support group. That is how I found out about the need for numerous procedures and the very great potential for necrotic wounds. I also found a blog (on another site) from a woman who had a terrible outcome from going to Denver and had basically been abandoned by the Denver contingent once she was home. I found a paper published on a study group having only a 40% "success rate" with ethanol alcohol embolizations. My local vascular surgeon kept pushing me to go to Denver, but my gut said "No!" I was very stressed. I decided to take six months to give my body a rest, to step back and then to make my decision thoughtfully without the feeling of being under duress. Four months into my moratorium, my leg decided for me. My bone infection had come back with a vengeance. I needed to have my leg amputated--above the knee. So, the worst of my avms are gone now because they were below my knee. My story may not help anyone else. Everyone's situation is different. I am lucky in that I was already an amputee (below the knee), so mentally and physically the adjustment isn't a big deal to me. In fact, I had wanted to go with the amputation option all along, but my local doctors were afraid I would bleed out because my leg bleeds profusely. Well, I didn't. I am okay. Amputation isn't an option for everyone because not all avms are located in places folks can spare. I understand that. Nevertheless, I believe no one should be given only half the story or told his/her procedure is a success and then get sent home to suffer while they wait for the next of countless procedures. People need to be given hope, but they should not be deceived. I'm not talking just about Chicago and Denver either. An interventional radiologist at University of Michigan Medical Center promised to cure me with glue embolizations and, when he couldn't, refused to speak with me to explain what had happened. Years later, he even refused to speak with my local vascular surgeon when I was in serious trouble and in danger of dying. These are doctors we are trusting our lives to and we shouldn't treat them like "rock stars". They are human beings doing their best to treat an insidious disease and they aren't very good at it--yet.

• ▶ Reply

Permalink Reply by Gordon D on December 14, 2009 at 8:37pm

I have to agree with all of you ! The problem I have found is a lot of the Drs we work with look at us as there next big adventure and some are so specialized that they save the brain and the body dies. I was told that I was not born with my AVM that it developed from some type of brain injury and that the factor V Leiden blood clotting disorder that I have caused the rest . So to keep it from coming back I have a hematologist that follows me closely and monitors my warfarin. I also have an Interventional/ Neuroradiologist, Neurosurgeon, Neurologist, Internist, Radiation Oncologist, Pulmonary, Vascular Surgeon and because I have all of these and an adult kid that just moved back in my house for the 6th time I have a Psychiatrist. And as far as skin ulcers not healing, I'm a believer in hyperbaric oxygen therapy. Do I feel that I'm on the right track? I hope so...

• ▶ Reply

Permalink Reply by Ron, Kansas on December 14, 2009 at 8:54pm

Wow, I guess we feel blessed or lucky or ???? I feel our DRs, from the local neurologists to the Drs that did the embos, the aneurysm surgery, microsurgery, and radiation ALL gave us a good understanding of our options and the risks associated with each option. At each stage, there was always the mention of potential risks, including death. Based on all the info we were given, our research, and the confidence in our DRs, we felt we made the right decisions.

Best wishes,
Ron, KS

• ▶ Reply

Permalink Reply by Gordon D on December 14, 2009 at 9:46pm

You know Ron I have a buddy that can buy a 20yr old car and drive it for 5 yrs and never spend a dime on it. I buy a new Cadillac and I can't get home from the dealership without it breaking down. Some people are just blessed . Some people just get the wrong salesman May god stay with you Gordon

• ▶ Reply

Permalink Reply by Ron, Kansas on December 14, 2009 at 10:00pm

Thanks Gordon!

And my pickup is a 91, the suburban is a 95, though I did just upgrade to an 05 pickup. Plan to sell the old ones. I have spent some money on them though.

Personally, I hope (and know) that God stays with all of us.

Ron, Ks

• ▶ Reply

Permalink Reply by Beth on December 14, 2009 at 10:32pm

Amen.

• ▶ Reply

Permalink Reply by Greg McGuire on December 14, 2009 at 11:12pm

Beth,

Extremity AVMs or VMs that are in the muscle and/or bone, are large and/or complex, are considered to be nearly impossible to cure by any means. This is in contrast to that of superficial, localized AVMs or VMs which can be cured a good percentage of the time. Most AVM surgeons around the globe use embolization as a means to ‘treat’ AVM and do not even consider cure a possibility. Ethanol is the best choice as it does not allow for recurrance in the treated area. However, the remaining untreated AVM will usually become more active after the surgery and may grow and spread which in the end can mean the patient is worse off than they started. An initial success can become a terrible failure in the long run.

That being said, the reason why Dr. Yakes has gained a high reputation is that he begins treatment with the goal of a ‘cure’. He does this by using a combination of ethanol and ‘serial treatments’. The numerous treatments are done as close as possible to each other to keep the AVM under control until all areas can be treated successfully.

Another factor is skill. IMO a lot of failures with embolization are because the surgeon has poor technique and does not apply the agent properly. Dr. Yakes is considered the best at this procedure by many.

Of course, as you say, this can mean years of treatments, and millions of dollars in many cases. The millions of dollars is just tragic IMO. Does it really cost that much to the hospital?? As for the time, well, for some people it is the best hope for a cure with current technology.

On the other hand, as you say, this treatment is very risky and there is a real possibility for permanent nerve damage, scarring, and amputation, and a very remote possibility of death. It is a tough choice to say the least.

If I was rich my daughter would be a patient with Dr. Yakes.

• ▶ Reply

Permalink Reply by Rob Reed on December 14, 2009 at 11:21pm

It has to be an individual call. Each person Must decide if the Risk is worth it. I have survived 31 plus years, with some deficeit but I'm alive. Remember doing nothing is doing something AVM's mature and change. Ive had Proton beam, failed embolization,linac/ gamma knife. for me it's about staying a step ahead of the maturing ADM.

• ▶ Reply

Permalink Reply by Beth on December 15, 2009 at 8:47am

I really appreciate everyone's replies. I've needed an open, honest discussion of all the factors involved: time, money, the physical adverse effects of treatment and promises made that likely cannot be kept completely. Thanks so much.

Anyone else out there that has some thoughts? Please do not hesitate to contribute. We need to be as fully informed as we possibly can. We can only do that by talking to each other.

• ▶ Reply

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page