Since the site upgrade all the extremity AVM’ers seem to have dissapeared and I miss looking at recent posts. Is the group still active?
EM11, can you remember any of your extremities group members? We could try a shout out to them.
Seenie
Hi Seenie
Thank you for your email.
It wasn’t any particular members that I wanted to contact, it was just having the group on the site where people with similar AVM experiences seemed to communicate more. The new site tends to be posts from those with cerebral AVM’s which although interesting isn’t always supportive to extremity problems and experiences.
Kind regards
EM11
Hi, EM11
Unfortunately, the groups, as they were structured on the old site, could not be exported to the new format. I know … I was disappointed about that as well. Your best bet is trying to find your old group members and then using a new thread as a sort of group meeting place.
S
I have an AVM in my right thigh,hip, pelvis and back. Have been having embolizations for 29 years. I’m in serious pain and am setting up dates now for another procedure.
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Hey Mary,
The extremity group is back up although not well populated.
Sorry you’re in pain again. Hoping you can get things down to a manageable level!
Thank you!! I am anxious to get the embolization and recovery behind me. It looks like they will have to use alcohol again and that’s the absolute worst pain I’ve ever felt in my entire life. But you do what you have to to survive.
I think the new design has put many people off. I am not personally loving it either. I seem to have lost all my photos.
Angela
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Just point me in the right direction, I have been seeking Extremity group since new format. Twice I thought I had started the group up again. But,alas, no responses.
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I will look at the directory and give a “shout out” to the members from Extremities. It would then go to their e-mail, right? I never go on this site anymore since the change; it is irrelevant to my situation. But God Bless us all!! I just had painful embos and would welcome some conversation with other Extremity people!
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Mary, sounds like we have had similar themes to the music of our lives. I have a huge venous malformation since birth. No treatments were available for decades. The pain became constant at age 48; retired early. I have had 12 procedures with Dr. Rosen since 2000; thought I was done 5 yrs ago, but a superficial vein appeared this past summer. It was ruining the progress I made (walking with compressionwear and lymphatic/vein massage to reduce swelling) So today is day #5; I am angry at myself for not being up and about. It HURTS and I do not want skin breakdown. So, hello.
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Rachel, how nice to run into you!! You had a little boy when we last spoke? I hope all is well with you, your family and your AVM. I now have a granddaughter Julianna, 10 months old.She is a big girl,30 lbs so I have been told not to pick her up till she can help. Anyway, I have learned new stuff. But, just this past Tuesday, I had 4 embos on my VM. A superficial vein just dilated in August; I am yelling at myself for not being up and around. But I think you can validate that the pain is an awful process. TTYS.
I should have gotten this new growth taken care of over a year and a half ago but the procedures have been so painful and put me down for so long that I decide to try to wait it out. I have a new grandson and want to do as much with him as I can and not waste prescious time with him on recovery. Last procedure I had a new doctor who set me back years. Instead of giving me relief he redirected the blood flow and caused a bigger growth. He used alcohol and destroyed healthy tissues as well and it took a year and a half to recover from that. But now the pain is overwhelming and the excessive blood flow is causing problems with my heart again so I have no choice but to take care of it now. I understand your frustrations. I used to be able to push through so many things through will power but now will power or not, my body refuses to cooperate. I wish you well! Your in my thoughts and prayers. It’s such a relief to finally talk with some one who is going through this and understands exactly where I’m coming from.
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Hi Eileen,
I’m so sorry to hear your in pain again!! I just had a baby girl this past memorial day. So now 3.5 year old and a 5 month old. Congrats on your new grandbaby!! Pregnancy brings so much pain for us lower extremity folks. Extra blood volume, more strain on lower extremities, extra progesterone, all of which means I know I have regrowth. Pain is still transient for now. Compression and ice seem to help when it gets to me. Once I get back to daily pain I’ll have to look for a new Dr. up here in MN or fly back down to Chicago.
I hope the embo went well and that the pain fades and you can get up and moving again! I know I find swimming therapeutic if your up for it.
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Congrats on your new angel!!!
I thought a turned a corner yesterday; but the pain is there again this AM.
Let’s keep in touch!
Hello,
Yes it has been awful now. I can not even get any of my friends back. People do not realize to keep basic things because of our injuries. I hope all is well with you and keep going forward and be happy. I did a lot by myself and win!!
Hello Folks,
Its been awhile since I last posted. The website transition presented some challenge- dealing with my AVM and busy life issues contributed to my lack of posting.
I have a left heel/foot AVM that has grown significantly during 2016. Like everyone else here, I have had plenty of time to learn what I can about our unwanted affliction. There haven’t been alot of happy endings to be found for fellow foot AVMers who have gone this trail ahead of me. It appears embolisation is the intervention of choice, though alcohol embolisation seems to burn nerves and leaves many bloggers in constant pain. As my AVM has grown, my ability to continue life as I know it has diminished. More pain, less mobility.
About 10 days ago I had my first embolisation- Dr. Chris Hampson MD is an Interventional Radiologist practicing at St. Mary’s Medical Center here in Grand Junction, CO. Dr. Hampson has treated a number of people with AVM’s prior to meeting me. The first treatment was primarily exploratory in nature- mapping the blood vessels, getting to know the little bastard that lives in my foot. Dr. Hampson used Onyx (glue) to kill off three small arterial blood vessels that had gone Rogue. Unfortunately, there are at least another 12 ‘feeders’ going into the AVM that need to be dealt with. The agreement post embolisation was to get together for another angiogram and glue party Nov 30th. Dr. Hampson was going to seal off a number of the feeders and inject glue into the nidus.
Plans changed though. Yesterday, I was standing in the kitchen and one of the arterial feeders ruptured. I didn’t feel it or hear it. I noticed it when my foot felt wet and I looked down to see a growing pool of blood coming out of my sandal. We grabbed the roll of paper towels from the counter, folded up several and applied them with pressure to the bloody mess that had become my foot. We happened to have adhesive gauze wrap sitting on the kitchen counter as well, so sitting in a chair in the kitchen we replaced the hand pressure on the wound with the gauze wrap. We then put my foot up on the kitchen table and relaxed a bit. After I was sure we had slowed or stopped the bleeding I called Dr. Hampson and gave him an update. We decided to move embolisation #2 from Nov 30 to next Tuesday. I share this in the event any of you are at risk to bleed and are unsure what to do in an emergency. I always wear a belt and have been trained in applying a tourniquet. We would use the belt as a tourniquet only if other attempts at slowing or stopping the bleeding were unsuccessful.
Dr. Hampson seems to think my foot can become fully functional and mostly pain free after 4-6 embolisation treatments. Our treatments will be with glue and possibly detergents of some sort. Dr. Hampson agrees alcohol or ethanol in the foot can be caustic and problematic and therefore is sticking with glue as the primary agent to kill the little pain in the foot. I will wait 3 or 4 months after the series of treatments before assessing whether I can live with the outcome or not. If my foot isn’t functional or if its too painful to get back to life as I knew it, I will have my foot and lower leg amputated sometime in the spring of 2017. A number of former AVMer’s who have posted here in the past report a significant improvement in the quality of life once they had the non functional limb removed.
I will post an update later in this journey…
In the meantime, hang in there and best wishes to all of you!
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All the best with your treatments. I have been thru 12 or so sclerotherapies, most recent was 3 wks ago. I wd def consider amputation vs my limited lifestyle. But mine is not amenable to amputation; thigh,hip and rear end. My thought for you is to wait perhaps a full year before making your decision re amputation. Dr. Rosen has shown me MRIs with improvement at the 12 month point vs. 6 months. Just my personal experience.
Thanks for your thoughts Eileen. I appreciated your posts on the old website and am glad to see you respond here. I learned a great deal from posts that I found on the old website using the search box- like some folks found alcohol embolization of their extremities were left with mixed results. I hope inquisitive minds have access to those who have gone before us posts…
Had my first significant embolization last Tuesday. Dr. Hampson (the interventional radiologist) said he was able to inject a phosphate detergent into the AVM, killing off about 70% of it. We go back for the next round Dec 7th, where he hopes to inject the remaining mass with presumably the same type of detergent. I have started wound care treatment for the part of the AVM that has broken through the skin on the bottom of my foot. Two of the three arteries that provides blood to my foot were also feeding the AVM and have been blocked off at the point where they met the AVM. I am surprisingly pain free both from the AVM (which had become a constant source of pain) and any nerve damage or pain associated with the injections. Foot color is good and warm to the touch, numbness is minimal.
I have ordered my first sets of compression stockings, should be here in a day or so. I think we’ll do a follow up MRI in January to see how the AVM has reacted to the injections so far. I will take your advice and wait a year or so before re-assessing the foot in terms of functionality and quality of life. I feel much better already with the relief from the heat/pressure/pain (both shooting and aching) after having the majority of the growth killed. It will take a while to determine how much of it grows back (if any).
Did you have any regrowth of your AVM after it had been treated?
Good to hear a response on this busy prep day for Thanksgiving. But you and I are not the ones to be carrying a 26 lb turkey to the car. Ha!
I am so happy to hear of your pain free recovery!! Maybe mine hurt more b/c the entire lining of the vein is sclerosed; you had a junction? I had radiofrequency once for a small connecting vessel. Easy peasy. I should mention I have a huge VM; no arteries involved. So you have already had wound care prior to this procedure?? Good thing you are not a diabetic, I gather. I am 61 now; went on permanent disability at age 48. Bummer b/c I loved my work, but I get paid a lot to sit on my “bum”. I just have this inner voice that says. “Other ppl don’t take so long to recover!” When I look at the sight, after a “busy” day, it has reverted back to 10 days post-op. So I need to accept my limitations. My compressionwear is 20-30mm now. Bike shorts which squeeze too much after 3 hrs. And so it goes.