Hi Everyone
My husband has an avm on his foot that was diagnosed a few years ago, he has been passed from pillar to post and as interested as doctors were to see it they wouldn't touch it! Although they all agreed his case would be best treated with removal by surgery. He was finally referred to someone more specialised who agreed with the others that removal would be best. Though following yet another angiogram and mri they had a U turn and decided on embolization. Last Monday he had a glue embolisation, was longer in surgery than they said as was more complicated than they first thought, took over three hours. They said they are erring on the side of caution and will do a little bit at a time. The first couple of days the pain wasn't too bad, it was more painful where they had gone in at the groin. The pain then increased and then seemed to improve, we are on day 9 today and his pain is worse than ever, we have phoned the GP and she going to prescribe the strongest pain relief she is able to. He is in more pain now than he ever was before so feeling really disheartened, so curious about others experience with the pain and how long it lasts? He is mobile but the pain is really restricting this and he is spending most of the time sat down with his foot elevated as it helps a little. He is also experiencing some numbness in his toes, mainly his big toe and deep red bruising above the area of the avm the avm looks the same as it did before. If anyone could share their experience of post embolisation that would be great.
Thank you
Liana
My daughter also has a left foot AVM. You can read a little about her progression on my page. Se has had embolization in Denver with Dr. Yakes. He does NOT use glue - I encourage you to read about his procedures - search Swedish Medical center and look for Dr.Yakes. Only you can really read up on the options and make a choice you think is best for your husband's situation.
Amanda had a lot of foot pain with her AVM - at times, she refused to walk, limp, etc. After her 1st treatment with Dr. Yakes, the pain was noticeably less. She's had 10 embolizations total (I think ... I've lost count) and hasn't had any treatment now in about 3 1/2 years. She still has pain at times, but she's only 12 so it's hard to know if it's "growing pains", scar tissue (she had 3 incisional surgeries to remove it before we went to Dr. Yakes), or if it's still a small remnant of the AVM. Dr. Yakes continues to monitor her with regular MRIs.
Prayers for relief and answers!
Dear Liana,
I have had 10 ethanol embolization on my right lower leg and foot for venous maliformations. Nine of them were very painful right after the embolization and the early ones took months and months to finally be pain free. So from my point-of-view, what your husband is dealing with is normal. My last embolization was very different. I was nearly pain free from the next day. I had this done August 20, 2015. The only thing that helped me after having an embolization was to elevate my leg and wait it out.
I also use Dr. Yakes and have for since 1993. You may want to talk to him.
Jeff
Thank you very much for replying. Have heard of Dr Yakes through my research, however we are in the UK. Thank you for sharing your experiences, it sounds like we are at the beginning of a long journey! It is great to hear thought that there is a light at the end of the tunnel.
Thank you for replying, do you know why he doesn't use glue? What does he use? My husband can't have alcohol embolisations so that may be why they decided on glue, though I know there are other options available too. She is so young to have had to go through that amount of treatment, you must be very proud of her!
I believe that the use of glue is not as effective as the use of alcohol. I didn't realize your husband couldn't have the alcohol embolizations - so that is probably why they suggested the glue.
She is young - her surgeries were from the age of 4 - 8 ... it's a lot for kids to deal with. But she's a fighter and we're thankful she's come this far! Also - I think kids recover and heal faster than us adults! :)
Best Wishes -
Liana,
There is light at the end of the tunnel. For me, the light has come and gone many times in the last 22 years. The AVMs in the extremities are very tough to get rid of. In my case, I had my first two embolization treatments in 1993, 2 in 1995, 2 in 2000, 2 in 2005, 1 in 2006, 1 so far in 2015 with another to go in December. The venous malformations just seem to grow in my lower right leg.
I will say when pain relief is achieved it is wonderful and it is a very sweet feeling of relief. I have spent many hours, days, weeks, months in pain, but the relief was well worth it.
The longer time for embolization seems to be mostly typical, it seems, as they have to be very careful and precise with the microcatheter and glue, etc. (my 3 scalp and face AVF’s took 5 hours to embolize). Is his pain today in his foot, leg, or groin? If the pain is really bad talk to his surgeon as soon as possible about the pain and numbness and be specific in what it feels like (swollen, constricted, dull, stabbing, throbbing, hot, cold, burning, pins/needles, etc). Good idea to keep a diary of what he’s feeling day to day (specifics) morning, mid day, and night, everywhere on his body. My groin is still achey and its been 3 weeks but its not stopping me from doing everyday things (I hobbled for maybe a week). Head hurt moderately for 5 days or so afterwards but I spent most of the time sleeping as I was exhausted. One very odd thing I noticed the day after surgery, before I went home, I felt a slight cold-burning sensation in my leg, mid-thigh down, on the leg they did the groin incision, but the hospital PA wasn’t overly concerned and she let me go home but said “if it gets worse or uncomfortable come to ER”. The cold-burn sensation felt better with using a heating pad over the next few days but I’m unsure as to why that happened or if its normal, but pay attention to how the leg feels, throughout, and how it looks, and how it feels/looks different from the other leg, and relay that to doctor. Doc & staff is there for your concern or questions, don’t be afraid to call them. I hope he feels better soon. And tell him to take it easy!!! Rest.
Hi Liana,
I have undergone 3 glue and alcohol embolizations on my upper thigh since July this year, with each procedure being 4 to 5 hours long. My 4th scheduled this week. My AVM is in the muscle and very large. I generally have pain in the area for about a week post embolization and the first few days I use prescription pain killers and ice. I am generally very tired. By the end of week two I am doing much better.
Liana, I also have a foot AVM, ball of my right foot, between 2nd and 3rd digits. I had glue embolization 2 years ago. It was direct stick, not through the groin with a catheter. It was not an easy recovery. It was very slow going. I had immediate pain from the procedure and then limped for about 6 weeks after, using crutches for longer than I expected. I couldnt walk relatively normally without pain on impact or limping for about 3 months. But the upside is that I have been virtually pain free ever since. The excruciating shooting pains that I had experienced have pretty much been kept at bay all this time. I do experience the "warm" sensation in my 3rd digit periodically, but I also notice it is accompanied by me doing too much or being on my feet too much. I would say to expect the recovery to be slow. but he should find relief soon. I hope he is doing well!
Michelle
Hi
The pain is now mainly in his foot, he had two really bad days, I have never seen him so bad. He has other health problems too so isn't a stranger to operations and pain. He had his thyroid removed in August and he thought that was bad but the pain from this is much worse. The numbness is improving though and he has feeling back in his big toe, so think that is a good sign. He is hobbling still but the pain is so bad he can't stand it for long. He has been in touch with his GP but not the surgeon but that will be our next step. Thank you.
It seems like everyone recovers differently, thank you for all of your replies. He is still really struggling with the pain though the new pain relief is helping and he did have a short period today when had very little pain. The bit that is worrying us now is the red bruised area above the actual avm, he can't bear for it to be touched even lightly, so can't put a sock on and the skin has broken in a couple of very small areas and there is a little blood. His surgeon did mention that if the avm is close to the surface then it can turn into an open wound that may require skin grafts, but he didn't think that would be a risk for my husband as it isn't close to the surface and doesn't affect the skin, but we are going to ask them to take a look at it.
I just had an AVM surgery on my right calf October 6,2015,and am going through pretty much the same thing as your husband. I also had the glue injection, and now have more pain than before, and I am a month out from the procedure. My doctor says some of it is just the normal healing process, and also I have to do mine in stages, I will be having another procedure in January 2016. Sometimes with the larger more complicated ones you do have to do them in stages to get the best result. I know part of my pain is also due to parts of the AVM not being treated yet and that combined with the pain from the past procedure is driving me up the wall. Try not to feel too disheartened by this, I know very well how you feel, I have spent so many nights in pain crying my eyes out, but I know in time it will get better with proper medical care. Tell him to stay strong and push through it as best you can sadly, that's all we can do. I will be praying for your husband and you also. Make sure you have the doctor look into all possible ways to deal with his AVM. There are so many new techniques and products that can be used, and look online also that is how I got super educated on all the procedures available. My next one will not involve glue.
Hi Ronata are you in the UK or USA. When you say your next one will not involve glue what are they going to use? My Grandson has had two aborted attempts at glue injections and they are going to try a third next week on his foot. We know if they manage to give him them there will be several treatments he is in so much pain at the moment anyway and on strong medication so anything that might alleviate the pain will be a help to him. Wish you all the best with your treatment and sympathise with you for the pain your are in.
On the subject of glue vs. alcohol: My AVM was not in the extremities but in the pelvic area. The morning of my embolization the surgeon said that he decided to use glue instead of alcohol because of the size of the AVM. He said it would take too much alcohol and my body could not tolerate it. I did have post embolization syndrome for a couple of weeks after the procedure with a lot of different symptoms which over time went away. Don't hesitate to ask questions about anything that you don't understand. Make sure that the doctor doing the procedure is well trained in the treatment of AVM's. This site may help you with finding the best doctors.