Tomorrow at 6 am I will be having my 3rd round of embolization on my very large pelvic/hip/butt AVM. I’ve been stressing over it since yesterday because I have pretty bad anxiety. I’m going to talk to my doctor about hopefully getting some stronger pain medication because they normally only give me 5 mg oxycodone which doesn’t even touch the excruciating pain that’s a result of the procedure. I’m also nervous because everytime I go I have so many questions that I bombard my doctor with and I feel like I’m being annoying lol. Oh well it must be done so I’ll just have to power through!
I wish you the best for tomorrow, and don’t ever be worried about asking your doctors questions! Also, it is rare that pain cannot be managed, so don’t be shy in letting the medical folks know what you are feeling. Take Care, John.
Hi. First of all, I hope all has gone well with the procedure. With each angiogram/embolization I have had, I would have worsening headaches post op from the combination of anesthesia and the contrast/dyes. In addition to pain meds, they gave me decadron in recovery to counter the effects. Not sure if a steroid is an option that could work in your case to help reduce the pain. It could be worthwhile to ask your team. Best wishes for your recovery. -Chris
Likewise, I hope today has gone well. I’m sorry to be slow in responding, otherwise I would always recommend you tell the doctor and nurses how you feel about an operation. Hopefully they have looked after you well.
I do think embolisation is more uncomfortable than we give it credit for and I know a lot of extremity people find ethanol embolisation and sclerotherapy very uncomfortable, so I hope you’ve had a good day.
Very best wishes,
Dick must know that I’m such a fan of embolizations. At last count, I’ve had 18 of them!
I woke up a few hours ago still kinda disoriented but I did tell them that the pain afterwards is unbearable and excruciating for me so they are going to discuss a better pain managemt plan. My doctor told me that my AVM is one of the worst he has ever seen. Lucky me lol
Well, I’m glad you’re through it. I hope the operation improves your pain in the medium or long term (I recognise it is dreadful at the moment). Well done for being open with them about the pain. I never see any point in being quiet about worries or things like this: medics are not clairvoyant: we need to tell them how we are.
Lots of love and best wishes for a proper recovery!
I am glad you are well and thanks for updating the thread so quickly with some news. @Mels, another extremity member, went in for an experimental procedure at the Glenfield in January and we haven’t heard anything since. I have been really worried.
I hope 3rd time’s the charm and that they give you suitable pain management x
Unfortunately they did not, they upped my 5mg oxy to 10 mg which still doesn’t do much and I told them that, but luckily this particular procedure has not been excruciating like my previous embolizations. I’m still in pain but it’s tolerable at the moment. However my doctor told me that my next embolization is going to be extremely painful because of the area he will be working on so it really sucks that I won’t have proper pain control.
I’ll just send you virtual hugs. I’ve no idea what else to do to help.
If you go through that, I just hope it sets you up better for some time. I assume that you’re having treatment because it is giving you pain and the treatment should reduce that.
I do think you extremity folk are very brave. It doesn’t sound nice at all. I know we brainers worry about the risks of intervention a lot (and not unreasonably) but you extremity folk have a hard deal of it, in my opinion.
Lots of love,
I only get the treatment because since I have a very large and complicated stage 4 AVM my doctor said without treatment it could lead to heart failure and the loss of my leg. Luckily the pain isn’t too bad in general mainly just uncomfortable, the pain I experience is a result of the embolization.
Hello. I have a large pelvic avm and take 10 mg norco for pain. 3-4 daily. It helps better than all others. Hope you feel better
Are you having any problems walking? My doctors spoke of heart failure and haemorrhage (stage 4 pelvic avm too, enlarged heart bla bla bla) but never loss of limbs.
However, since my diagnosis in 2019, I am progressively losing the ability to walk. I have also episodes of dizziness followed by sharp tingles on my face and limbs. My doctor said as I am ageing, my body is coping less and less. I am 49 in 2 months, which doesn’t bode well. How old are you, if you don’t mind my asking?
I am in pain intermittently but they won’t give me anything more than what I have at the moment, which is why I have been in a scalding hot bath with lavender since 5am this morning (hot water/ lavender help with blood circulation).
Norco not prescribes in UK. Oxy not sure Frankly when I am in really bad pain, which hopefully is rare, nothing touches it, worse codeine and tramadol make me sick anyway. I only cope with it because it doesn’t last more than a few hours at a time.
And that brings me to the new thing, liver/digestive issues. Bo, have you got any liver problems? I am nauseated all the time, can’t cope with any alcohol or fatty food or any food in too big quantity. Pain in the right kidney too. I haven’t consulted : my GP is more than useless.
From my understand my doctor said that without treatment eventually my leg would become to weak to walk on because of all the extra blood flow. Due to my AVM being so large and the embolizations making it larger, my bad leg is longer than the other so they said eventually I’ll have to meet with an orthopedic surgeon to get them evened out so that I don’t get arthritis in my hip. Also I am 20 years old, diagnosed at 18, started treatment at 19. I would suggest getting a CTA of your brain which my doctor told me I will have to do every couple years for the rest of my life because apparently the older I get the more at risk I am for strokes and aneurisms because I believe he said I could get an AVM on my brain. It sounds to me like your symptoms could be indicative of something going on in the brain which I really hope not.
Really wishing they would have given me more pain meds I’m hurting really bad right now and I’m having trouble coping. I can’t imagine getting any more of these surgeries but my doctor said I will have to unfortunately. I don’t understand how people can bear this.
Big hug from me!
I am glad that you are getting it treated early before it causes you any problems.
I have had an MRI of my neck and head before and there are no AVMs lurking there. My understanding is people who have multiple AVMs usually have an underlying medical condition such as HHT and there is no risk of developing an AVM later on in life unless you have had some sort of surgery/injury (uterine AVM are a good example of that). So, I think I am covered.
Risk of strokes etc are part and parcel of anything messing enough with blood circulation and definitely a risk for people with large avms but nowhere near as much as our brain avm friends. Well, that’s my understanding anyway.
Oops that last message was typed days ago…looks like I didn’t press send again.
Sorry to hear that you are in pain.
Lots of love from me x
Hi @Nathalie i am so sorry I didn’t reach out sooner they got some of the mass out and I went a good few months with quality of life which to you and I means no pain relief but with limited mobility, the aftermath is that I am on permanent blood thinners we have been refused fertility because of the contraindications. Leg is swelling due to residule clots and I’m gradually dragging what feels like a dead limb! So I can’t really tell you what’s better…
sorry I didn’t get in touch sooner, mental health some days has been debilitating
I hope you have been coping it would be lovely to meet some time for all of us sufferers to host some kind of charitable event xxx
I am so happy to hear from you. No pain relief is definite progress and blood thinners instead a worthy trade.
The fertility part is not good at all, however. Didn’t they warn you beforehand? You could have waited to finish your family before having the op. Do you have children already Mels?
My doctors said, should they have diagnosed my avm before my pregnancies, they would have been massively against it. I had one miscarriage which led to a haemorrhage but they managed to deal with it.The trade off for my two children is a larger avm and a shorter life span. I was unbelievably lucky not to lose my life and the children theirs.
What about your leg? Are they saying it should improve with time? Are they going to remove the clots or let the blood thinner dilute them? What is the prognosis?
Have you seen the thread about the Royal free AVM ward in London? Is it worth considering a transfer? They might be able to help. They are conducting research with UCL and they are the one using Thalidomide. They are treating symptoms and providing after care.
Hang in there and yes a UK meet would be good . xx