Hello. Just checking on how you are doing. Hope you ok and keep fighting I know it’s hard but maybe there will be some hope.
Eddie
Hi!
I had been thinking about messaging you too to see how you are getting on.
I am actually much better than I was since my first procedure. I have more energy, I can walk longer and a tad faster and I have no longer any digestive issues. Eating food and walking were becoming my two nightmares and, they certainly couldn’t happen close to each other. So I am happy about it. The trade off was horrendous pain after the first embolisation, but it seems to have improved with the second. I still need a few more procedures and we’re never really going to be completely on top of it but as long as I am gaining some quality of life back … I am also going to start Thalidomide by the end of the week an I am a bit more weary of that.
How are you?
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Hello
I’m glad that you are doing better. Hopefully it will continue to improve.
My symptoms are getting worse and still struggling on whether to get more procedures done. I’m at the point of barely able to walk and eat. Also I’ve lost slot of muscle mass and strength on my left side. Arms and legs.
Having difficulty swallowing and breathing at times. My Adi-Buddha is getting worse that is why I don’t know if it’s worth having surgery.
I was wondering if you have/had tinnitus issues. I have a loud swooshing noise that is constant now. I’ve read that this is contributed from avm issues.
Anyway I’m glad that you are doing better and gives us some hope.
Sorry for the rant. Lol.
Best to you
Eddie
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It sounds very similar to me before the first procedure.
I would encourage you to find somebody who can help you.
You’ve got nothing to lose, it can’t get much worse.
Strangely enough, I didn’t realise how much I had lost until I started gaining it back.
I didn’t have tinnitus but I did have an occasional rhythmic clicking noise in my nose which has gone now
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Hi Bo, I did not have tinitus either, but a guy in the FB AVM group used to have the exact same swooshing sound in his ears before the embo. His AVM was almost the mirror image of mine. He had it successfully treated in one embo with onyx and coils and he keeps recommending his US doctor. His AVM was completely obliterated and has been stable for 6 years so far. He’s on a FB group on Extremities AVM (essentially for anyone without brain avms). So it’s very likely due to the AVM, it’s pulsating blood after all. I know it’s difficult with insurance in the US, esp if you need to go to a different state, but I’d probably try his doctor if I was in the US.
Hello. I had my last embolization on 8/22/23. Hoping to help with advanced symptoms of arm and leg pain/numbness. Abdomen pain when I eat or drink anything. Well 6 weeks post my symptoms have actually are getting worse. Nothing else can be done after seeing 6 specialist. I’m 61 and living now that can’t eat or drink hardly anything. Lost 60 lbs in 8 months.
I’ve learned a lot about avm’s (pelvic avm).
Im glad that you have found some relief and continue to get better.