I am brand new to this site and still trying to properly direct myself around. I am currently on day 5 of recovery from my Wednesday May 25th Onyx Embolization treatment (I was also told I will need more so this is where my questions/curiosity arise. I have had previous embolizations in the past when I was younger (last one being when I was 17 or 18, I just turned 24 on May 27th) at Sick Kids Hospital in Toronto Canada. However I found with my prior embolizations (alcohol and not onyx but another agent) my recovery seemed much “smoother”. I’m finding that the pain just isn’t really subsiding (I am now out of my Oxycodone painkillers prescribed and taking Tylenol with Codine). I have my hand elevated 24/7 and it does help. It’s odd because to the touch my finger feels numb still, almost as though it is asleep…but I can still feel pain! It is not so much a throbbing, pulsating pain, but more of a sharp, prickling (I will jolt up) pain. It comes and goes in spurts. However, when it comes it’s really quite bad.
I understand maybe I’m not being as realistic as I should be thinking I shouldn’t be in pain…but I just don’t remember recovering like this in the past. I was wondering if anyone has had any experiences like this with Onyx Embolization procedures? It’s hard to find information online, and I’ve read a couple things about side effects but not much. I’m new to Onyx and would love to know more about it.
I’m so happy I decided to finally join this site.
Thank you everyone in advance!
My AVM is in the brain, so a little different, but here's the thing: I had an onyx emolization and the blood vessel they occluded was very near the surface of the scalp, so very low risk.
I woke with incredible scalp pain that went down to the side of my face and jaw. The doctor said the embolization had been near a large nerve and had affected the nerve. That may be what happened to you as well, although in a different place. There is no "shouldn't" about pain - if they were close to a nerve, it may be slightly damaged. They generally get better, but it can take time.
My recovery was a little like a horror story, with part of my scalp actually peeling off. (Major ick factor!) Everything healed up fine eventually, though. Make sure you communicate your concerns to your doctor, ask about possible nerve damage, and what the prognosis is.
I still take gabapentin for the residual headaches; it's very manageable.
Onyx is a newer material used to occlude blood vessels and the delivery system is much more gentle, resulting in fewer hemorrhages caused during the placement of the material.
Hope this helps!
My embolizations with Onyx were in the brain on a fairly deep AVM so I didn’t experience much pain, but there was swelling of the area and irritation to the surrounding areas. It typically took about a week to 10 days for the swelling to fully go down and I knew it did when my vision was back to normal (it was pushing on the vision processor when it was swollen). What helped most with the swelling and getting back to normal for me was the one week course of steroids that they gave me.
Check with your doctor to see if there’s anything else you could be doing to speed your recovery, but I think it’s just a matter of time and healing. I hope all goes well in your recovery.
Hi, Jessie. I had an Onyx embolization for a sub dural fistula in my head so I can’t totally relate to your situation. I did, however, have a lot of pain (headaches) for a couple of weeks after and had to sleep sitting up for 2 weeks I was on oxycodone as well. My fistula was high risk the embolization worked, but then it came back and I had to have a craniotomy. Afte those couple of weeks, the pain was virtually gone and manageable with Tylenol
Wishing you the best recovery.
It sounds like there is some nerve damage from the embolization, exacerbated by swelling related to the ONYX. As other members will relate, although Onyx isn't as aggressive as alcohol or sotradechol, it can still cause ischemic tissue damage.
With most AVM embolizations, subsequent procedures are more challenging than the initial attempts because all the "low-hanging fruit" has already been treated. Similarly, the complication rates tend to rise because what's known as the collateral vascular bed (the normal blood vessels in the area) gets more compromised with each treatment and can lead to tissue ischemia (too little blood flow).
It sounds like you may have a combination of tissue ischemia and nerve damage. On the plus side, both of these conditions tend to resolve slowly and may go away altogether.
Keeping my fingers crossed for you
Hi Jesse. Having had numerous embolizations over the years I can say that sometimes there is just more pain and it can last for some weeks. Embolizations can definitely lead to some level of nerve damage if blood supply to a nerve is interrupted. My facial nerve was damaged in this manner and 5 months later I'm still healing from that. The pain eases over time but your surgeon should be able to offer advice for your specific situation. Don't be afraid to contact them.
BCF; thank you for your informed posts!! Things you say are things I learned over 15 yrs!
Sorry to hear of your most recent AVM development.
Sounds like the Onyx is somehow affecting one of the many nerves in your hand. You may find it interesting to use the search box in the upper right hand corner of the AVM Survivors Network website- type in something like Onyx and hand or Onyx and foot, Onyx and Extremity. You will likely find a number of members or former members experiences recorded there.
I have an AVM in my foot and was told I needed multiple injections of Onyx and a variety of other agents performed in relatively quick succession (a few weeks between treatments) to kill the AVM's Nidus and (possibly) promote some degree of healing/relief/improved functionality in my foot.
Based on experiences like yours, I have decided to not pursue embolization at this time. Instead, I am coping pretty well by significantly reducing processed sugars in my diet, increasing anti-inflammatory foods (steel cut oats for breakfast using agave nectar, nuts, cinnamon, raisins), green tea and an ounce or two of flax seed oil in a shot glass daily. I can use Aleve or an alternative ibuprofen for inflammation relief.
My foot seems to change levels of inflammation very rapidly... like in two minutes. I can sense the temperature change in my foot. The temp seems to rise and fall just as rapidly. When I sense it rising, I pull my shoe off and try to elevate and cool it as soon as possible. When at home or where convenient, I use ice packs held in place by ace wraps.
If my foot becomes too much of a problem or threat to my overall health, I will probably have it removed and replaced with a prosthetic foot and lower leg. For me the decision will be based on which condition is less likely to impact my desired activities and quality of life.
Hang in there Jessie. Like so many other people on this website, you seem like a sharp and generally upbeat young lady who has to figure out how to not let the AVM dictate more aspects of your life than is necessary. This desire to keep the AVM from impacting every aspect of our life is common to most everyone afflicted with AVM's.
Thanks for joining the site and keep us posted!
Hi, you did not say where your AVM is and that could make the difference also. I opted for the Super Glue rather than Onyx but the type of material doesn't matter, they both do the same thing.
I have a large AVM in the right Occipital. The first two embolizations went extremely well. I came out of anesthesia and went home by the end of the day even though it had been planned for me to spend the night. The last embolization was horrible. I woke up from the anesthesia and my head was screaming in pain. They started me on pain relief and when I finally felt like talking the Neuroenterologist said that he expected me to be in pain since he tried to seal off the blood flow and worked into the Meninges layer. They kept me over for 2 nights and I had a pain pump. When I left they prescribed my the oxycodone which didn't help at all. Finally my Family Physician prescribed Fentanyl Patch which gave me relief. I was on those for about 3 months until the pain was more manageable and I gave up the medication.
Without knowing your AVM history it is difficult to say if that is what they did. I do know that if they were near any nerves it could be affecting other parts of the body. The surgeon should be able to tell you if that nerve goes to your hand. As with my experience it just takes time and if your Dr. is not going to assist you with the pain management then you might need to find a Dr. that specializes in Pain Management.
Good luck and I hope this helps,
Thank you so much everyone for your responses! I appreciate it so much, I have joined the Extremities group as well now. I wanted to understand Onyx a little better, and your responses have helped.
I definitely think I quite possibly have some nerve damage, that would explain my numbness and shooting pains. I had never thought about that possibility. I know my Surgeon had mentioned that my AVM Nidus is actually within the bone of my finger now. They had attempted to inject through the bone, perhaps that’s where my pain is coming from still. The bone concerns me a little as it is a newer issue I’ve been having in regards to my AVM.
My finger is still quite swollen and completely bruised (yellow/green). I also feel as though the Onyx may be visible under my skin around the top of my finger (or perhaps it’s just a streaky dark bruise). It is slowly feeling better though, and the responses and well wishes have made ME feel better.
Again, Thank you all for taking the time to respond, and I will definitely keep you all posted if anything changes or if anyone wishes to know more! I look forward to learning more about others and their AVMs stories. It’s so nice to feel a part of a community who can on some level or another relate to each other. I wish you all well!
This was extremely informative, thank you so much for this!! Saves me from the struggle of attempting to translate medical* articles!
Hi Jessie, I will keep you in my prayers for a speedy recovery as I know very well the pain you are feeling. I have had numerous embolizations using Onxy surgical glue and all were extremely painful. In fact, the pain was so severe that it was almost impossible for me to describe as it was used to occlude problematic vessels located in my face, neck and jaw as that is we’re my AVMs are located. I am on morphine daily for chronic pain due to old shoulder injuries plus to help counter the pain of my AVMs and VMs. I remember being discharged and cont inning the severest pain from teh Onxy, like you describe, lasting for about two weeks. It does get better but it is an extremely slow healing process. I not only experienced phenomenal pain but also discovered t hat the glue gives off a putrid smell; anyone entering my hospital room commented on the awful smell from the glow. My oldest son, a Soldier, who had just returned from fighting in Afghanistan told me the smell was the same as that of dead bodies which worried him for me plus eriused bad memories from the battlefield. Anyway, it will get better but takes much patience and many pain medications to get through it. I know this isn’t much help but I will be praying to you get better soonest! Regards, Steve
Steve, thinking about your soldier son's visceral reaction to the odorous onyx, causing PTSD memories. There is a charcoal-infused mask that prevents smells for the person wearing it. I will give you order info if you wish.
Praying for you as you continue this journey. I have also had Onyx injections. Great to get a consensus as you've done. Welcome to the "family" ;) XO.
Hello my name is shannon my son was 9 when his ruptured so the bleeding went away july 2015 jan 2016 he had emblozation done than the next day they went in and removed the whole thing from his left side of the head and 2 days he was out and back to school 2 weeks later i think ppl will have to keep getting emblozation once they told me that i prefer to just get the whole thing taken out instead of going thru that he is now 10 years old avm free he told me when they go thru ur leg that hurts worse than brain surgery but i have a strong younf fella hope all is well with u and stay strong
Not my area of expertise but Welcome. Your son's comment cracked me up! Yes, the IV insertion does hurt a lot b/c you are awake! Then the med goes in and you feel nothing. Precious! May I pass that on to AVM friends?
I often get mad at how much it hurts for that stick; let the anesthesia doc do it. Always gets it first time around.
Hi Jessie, My surgeon used Onyx in an aneurysm that was starting on an AVM I had on my brain. I really didn't have much pain afterwards. I'm sorry you are having all that happen at such a young age, bless your heart! My surgeon was one of the researchers who discovered using Onyx, and that may have made a difference, I don't know- but, sweetie you need to tell your Doc no matter what. Be your own advocate and if you feel something is wrong or different then it's not just you being unrealistic! Pain is real, and you should tell them and possibly even bug them until they answer. I had to do that myself. Don't try to be brave, just be open and honest with your doc- I have never had a doc not appreciate that. I found a page on Onyx....I will find it again and post it to you. Hugs! Jacque