I don’t even know where to start, my head is all over the place…. Here we go…
My name is Denise from Manchester, UK and I am / was a very active middle aged woman. My life was amazing!
In 2022 I had a subarachnoid haemorrhage( no aneurism), I have recovered pretty well pretty fast. In 2023 I started having problems with my knees and was seen by an orthopaedic surgeon, who eventually recommended a lower back mri. My symptoms started with pain in my knees, then some numbness(pins and needles)in my feet and shins as well as burning sensation slowly making its way up to the top of my right leg- my left leg is not as affected mainly below knee. Recently I have burning between my thighs and around groin area.The Mri has revealed a potential av fistula presence. So I had a full spine mri with contrast as well as an angiogram, which confirmed a spinal avm at T8 level. Unfortunately due to these new findings my fistula surgery had to be delayed. I have an appointment coming up with the neurosurgeon to discuss the exact findings and treatment options.
I wanted to see if there are people from the uk with experiences around Manchester, also what treatment is preferred and how quick do the symptoms develop. I do suspect the brain haemorrhage could have been due to the spinal avm presence- anyone who had a similar event?
Do people know or have looked into prices in the US?
I am terrified of what’s coming and I am so glad I found this community.
I’m not familiar with spinal AVMs particularly but I’ve added you to our @Spinal group. Whether there’s any connection between what’s going on in your spine as well as your SAH, I don’t know.
I had a dural AV fistula in my right occiput back in 2016+17 and had a catheter embolization procedure to sort it out. I was quoted about £12k for the procedure and £12k a month if I should need to stay in hospital for recovery but that was in the UK and about 7½ years ago. I didn’t go privately as it seemed a lot of money to spend rather than wait for 3-4 months. (I did find them very challenging months but still didn’t feel the need to spend the money!!)
If you click on the “visit topic” button, you’ll see the whole conversation. Then you can reply to her more directly but I’m sure it won’t matter how you reply.
I also have an AVM, it is at my T12. An aneurysm burst in my spine and that’s how they found it. It happened in May of 2018. I’ve had a total of four surgeries, the last one in December of 2020. I have constant pain from the lower back to my toes. I also experience waves of acute pains randomly throughout my lower body with no warning. I’ve had numerous MRI’s and tests. The doctors say it takes a lot of time (years) for your body to recover and heal. I was very active middle aged man in the USA at the time and it all changed in seconds. I’m sorry you have to go through it all! But hang in there! You are not alone!
Hi Denise welcome to the club you never wanted to join!! That being said I have learned more about AVMs from the lovely people in this forum than any of the Doctors I have encountered.
My AVM is on T-5 and discovered during the height of the pandemic so it was several months before I could even get an MRI.
I went through two unsuccessful attempts to embolize before I was sent to Dr Michael Lawton at Barrows Brain and Spine in Phoenix. He is touted to be one of the world experts for brain and spine AVMs.
My initial symptoms were excruciating pain in my upper back and progressive weakness in my legs feet hands and arms. My neurosurgeon and the intervenal radiologist both said it couldn’t be the AVM because there was no edema in my spine. And I continued to get worse. By the time I got to Dr Lawton he said ALL of my symptoms were from the AVM and I needed surgery immediately. He successfully clipped the AVM but told me my spinal cord essentially had a stroke.
I won’t lie to you recovery from surgery was long and painful. I spent over a year in intensive OT/PT relearning how to walk and basics like using a knife and fork.
It’s now four years later and I can walk short distances then neuropathy in my feet ankles and legs require me to rest. I still get pain in my upper back and lying in bed on a heating pad helps. I have a massaging mattress which also helps. (You can buy a full body massager and heating pad which I have for travel. The first year I got weekly acupuncture treatments which helped a lot to improve blood flow and nerve stimulation.
And like I’m told almost all spinal cases result in some bladder and bowel issues. Mine are manageable.
At the end of the day I guess I have to be thankful I’m not paralyzed which many can be.
If you have the opportunity I highly recommend talking to a therapist. It helped me immensely to totally be able to talk through my feelings with the many changes in my life.
I wish you all the best on your journey and know it’s different for each of us. You will have the love and support from this unique group because we have all been through what you are facing.
A huge virtual hug to you and your family!
Nancy m
Hi Denise, glad you found the avm survivors org. Such great information and support here. I was diagnosed with a spinal AV-fistula in July of 2023 at the age of 43. I had been suffering symptoms for more than 20 years but just never thought they were anything serious until my hands and feet started going numb and I was losing the use of my right leg. I underwent an MRI and spinal angiogram and was diagnosed with a spinal AVF that ran the whole length of my neck (brain stem to C7). One of the arteries was triple the size it should be and was greatly compressing my spine so that I was going paralyzed. Five days after being diagnosed I underwent a spinal dural embolyzation (at the University of Alberta Hospital in Edmonton Canada). Had 14 platinum coils put in at about C4 to shut down the avf. It was a risky procedure but since I was already losing function I didn’t have much to lose. Thankfully everything went well and I have regained feeling in my hands and feet and although I am still recovering (its been 9 months) I am actually in less pain than when I went in (neck and back feeling better than they have in a long time!). Hope you are able to get a treatment plan sorted. It really felt good once a plan of action was in place for me. The waiting was the hardest part!
I had an AVM located at the junction of my cerebellum and my spinal cord, above C5 (cervical nerves). I was also a very active middle-aged woman when the symptoms happened suddenly and aggressively; in 5 days, I lost my ability to walk and feel my legs. But, as my neurosurgeon told me, I was ‘‘lucky’’ that I was in the ER when my condition worsened, because the medical team had to think and respond quickly. She also added, in my last annual visit, that I would have probably been diagnosed with a neurological disease like MS, if my AVM hadn’t been so aggressive, as very few medical practitioners are aware of AVMs.
The surgery (embolization + craniotomy) was a success, and my spine is no longer swelling. However, I have what it’s called a residual myelopathy, because of the AVM, reason why I have bowel and bladder issues, muscle fatigue and heaviness, tremors and spasms, burning sensation in my lower body. To manage these symptoms, I must train daily and work on flexibility, mobility, strength and endurance, as I am not taking any meds.
It’s been almost 4 years post-surgery, and I’ve been improving slowly but steadily. I still have trouble to walk, even though people don’t see it. I get tired quickly. I use walking sticks if I want to walk more than 2 km.
Recovery is unique to each individual. However, one can say that it is NOT linear, and it can be discouraging sometimes, but we must keep going and have a positive mindset.
I’m an active middle aged man (Is 62 still considered “in the middle?”) with a right neck, extra cranial, cervical AVM involving the external carotid artery and the jugular vein in addition to many others. I was diagnosed in 2016 after I began blacking-out, losing hearing in my right ear, and losing the vision in my right eye. I went to Mayo Clinic in Phoenix for treatment initially and had eight embolizations with Onyx and coils. Since 2021 I’ve been treated at the Yakes Vascular Malformation Center at Swedish Hospital in Englewood, Colorado, USA (45 minutes from home). I’ve now had twenty-four embolizations with alcohol (next one will be June 6th) and the fistulae are much reduced. I still have single-sided deafness but haven’t blacked-out in a few years and my vision is much improved. It’s been a long road, but I’ve encountered a lot of good people in the medical community as well as folk with similar issues. They’ve all been helpful in navigating a challenging diagnosis that is largely unknown in the general population.
You are not alone, Denise! I’m praying for your treatment and recovery.
So I came off for a while as I was reading more and panicking immensely. I now have had the operation, the surgeon in Manchester UK has managed to obliterate it all successfully. I walk with assistance and I urinate by myself 2 days after surgery. Back where the incision is not too bad painful, thank god for pain relief, however my right leg is nearly completely numb. Feels like my symptoms are worse than before surgery. Wonder if that was the experience for everyone else. time will heal and a lot of Phisio .
Great news on resection! Time will heal and you have this brain bomb out of you so you don’t have to worry anymore about it only recovery now. Blessings !
time will heal and a lot of Phisio .