Hey there, welcome to Living with Ben’s Friends. I love the positivity and courage from your determination. It can be the hardest part in this whole journey, but you’ve already got the key! How are you feeling nowadays? Although I don’t have AVM myself, I have heard that people experience different symptoms with varying length after their surgery. I wish you all the best on your road towards recovery.
I have just been a week and a half out of hospital after having my surgery to address my SDAVF. I’ve been catching up on the posts here on the AVM Survivors network and noticed you, a fellow @Spinal Member.
You have a 6 month head start regarding your recovery post surgery on both @Gumlan and myself, but your words of encouragement to @Gumlan (especially your use of the word “amazing”) resonate with me as well.
I hope, in the weeks and months to come, I will be able to replicate your most impressive results.
I am here for any questions you may have regarding your recovery. I can pretty much tell you what to expect if you give me your status post op. The good news is you are out of the hospital. Took me 6 weeks to get out of the hospital.
My husband is nearly 6 weeks post op for a SDAVM Fistula closure. He was in hospital for 2 days. Obviously still has post op pain but can now walk around the house and garden without his legs feeling like they want to give way. His feet are also feeling warmer - don’t know if anyone else had very cold feet prior to any procedure.
He can now see his veins in his legs and feet as prior to the op they were non existent to the eye.
He had been backwards and forwards to see his GP in the last 18 months where he had had an x-ray which showed degeneration at L4/L5. Was told no further action.
He paid to see a private surgeon who within 4 hours after having an MRI scan that he had spinal Dural AVM fistula which needed urgent attention.
He was relieved to get a diagnosis as he was walking as though he had had a stroke and had severe pain in his back.
He had a spinal angiogram first at Leeds General Infirmary where a coil was placed as near as possible to the fistula - specialist radiologist said it was too dangerous to go too near it.
So after a pre op my husband had a laminectomy and the closure of the avm fistula at T8.
If anyone has any questions, we will try and answer them. The Consultant who performed this surgery was a Mr Ian Anderson at the NHS Leeds General Infirmary, Leeds, West Yorkshire.