Tuesday, 21 December 2010

A Rare Condition - SDAVF

If you have numb legs and/or feet and your doctor can't figure out why, consider an arteriovenous malformation (AVM). An MRI with contrast die is the diagnostic tool for this.

It's been a loooooooooooooooong six months. In the spring I was diagnosed with benign prostatic hydoplasia as a result of an ultra-sound and lower spine x-rays. In May I had a pretty significant fall on my dock which bruised and numbed my right leg and foot. The numbness continued and was also noticeable in my left foot. In June I first noticedwhat I would call 'wobbly legs - very occasional unpredicatable muscle behaviour which would affect my walking. I also found kneeling awkward. By the end of June my legs and feet were numb but super-sensitive to touch and temperature. A wet dog rubbing across my legs felt like hot oil being splashed. The numbness and weakness continued to increase and by July 1st I was using a cane to walk.

Another visit to my family doctor resulted in a consultation with a neurologist, a urologist, and an MRI of the lower spine. These consultations took their course and eventually I went to St. Mary's of the Lake hospital for conduction tests - the tests ruled out peripheral neuropathy and pointed higher in the spine. Meanwhile the urologist was checking out the bladder and prostate and could find no problems other than a lack of 'sensation of fullness'. I could have told him I was numb without him putting two litres of fluid in my bladder.

Several appointments with the family doctor and another consultation with the neurologist resulted in a die-enhanced MRI of the entire spine and brain. Within hours the problem was found. A spinal dural arteriovenous fistula is causing congestion of blood around my spinal cord. The list of symptoms describes me exactly and the MRI clearly shows the congestion of the cord. Everyone was ecstatic because this condition takes, on average, two years to successfully diagnose. Prompt diagnosis and treatment can mean full recovery.

I got an appointment within three weeks at Toronto Western Hospital for a catheter angiogram and, if possible, embolization of the artery by 'The Glue Man' Dr. Karel terBrugge. Unfortunately, the fistula is in the artery connected to the main artery serving the spinal cord and embolization is not safe because of the high risk of paralysis. Under most circumstances, a surgeon would then , within a few days, tie off the offending vessel with the same result. Unfortunately, in my case, both surgeons who could perform this surgery were out of the country so home I went.

Two weeks later the surgeon's office called with an appointment for a consultation two weeks later and then surgery sometime in the future. This is frustrating because the fistula was found much earlier than usual and my condition continues to deteriorate as I wait for treatment. In early November everybody was high-fiving about diagnosing the problem and it now looks like treatment may be delayed for three months.

The main purpose of this post is not so much to inform family and friends of progress but to create an internet presence of my experience for the benefit of others. When I was googling numb legs and other symptoms, I never once came across a mention of SDAVF or spinal dural ateriovenous fistula - if I had, I would have gone running to my doctor insisting on a full MRI. Promptness of diagnosis and treatment is crucial to complete recovery. This condition is very rare and not likely on your doctor's list of things to consider.

If you are suffering numb feet, numb legs, arms, hands, hypersensitive skin, numbness to the midsection (especially when sitting), lower back pain, aching hips, difficulty walking, difficulty lifting your feet - ask you doctor to consider an arteriovenous fistula. Although these symptoms may not appear all at once, they will get progressively worse and only treatment will put an end to it.

I would be happy to answer questions and hear your comments.


asd161 said...

Hi, I was just diagnosed with SDAVF after about 10 months. I'm waiting to hear back from the specialist to see what they are going to do.

Was there anything that you were able to do to ease the symptoms?

Bluff Dwellers said...

Sorry to be so long answering. My doctor prescribed Gabapentin right away to relieve the nerve pain. I am now 17 months post-surgery and a long way from being back to pre-AVM function. However, I am getting accustomed to the 'new normal' and engaged in most of the activities I want to do. In addition to the Gabapentin, I take Ultram (Tramadol) as necessary to relieve pain.

asd161 said...

Thanks for responding back. My doctor prescribed Gabapentin. Did stress make your symptoms worse? I go back for a second angiogram July 16th. The first angiogram didnt show the sdavf, but the Mri does.

The waiting is frustrating, July 16th the have me scheduled for an angiogram and exploratory surgery. I'm hoping they find it this time.

I'm guessing the SDAVF could be very small.

DeadlyNightShade11 said...

Hi~! :D I was diagnosed with SDAVF on May 1st 2013. I'm an 18 year old girl and I started feeling symptoms last year with the numbness in my hands, well it started out on my thumbs and progressed to my hands. I finally went to the doctors who sent me to a neurologist who got me 3 MRI scans. My second MRI scan showed I had it. Then that same week off to Toronto. There I had an angiogram. Then the next week on May 9th, I had an 8 hour endovascular surgery. My SDAVF was rather big and they had to go through two arteries in my groin area. They found my spinal cord as thin as paper. This all happened within 3 weeks. It's still taking awhile for it all to sink in but I'm now home with a big bruise on my groin area and a bit of a sore neck. I have another MRI next week at the same hospital and a check up. So that is my little story and really hope it's the end of my SDAVF.

Endre Jandl said...

Hello there, I am a 39 year old male from Norway. I went through a open surgery on the 28 of Feb 2013 to seal of the SDAV fistulas. I got all the symptoms that you mentioned and to day as writing (5 Mar 2014), unfortunately, I can still barely walk, my back hurts, my legs fill like they are filled with glue and concrete, my feet like they are sleepin and they are pulsating in a unconfertably way, I have spasms, I feel weak and I got tired really fast, pluss I am dizzy half the day. I really hate the condition I am in. And really, I am doing my best to get better, I exercise thre times av weak...strength, balance, and stretching. But I really can't say I am getting better. Three months ago I had new MR shots taken, but they were fine.I don't know what do...I feel crippled. Nobody can tell my if I ever fill get fine again...but the way it looks like now the chances are microscopic. Statistically, If nervefunctions have not improved much within a year after surgery, chances are really low.

Jeff said...

My 83 years old dad was just diagnosed with SDAVF last week. The chief surgeon does not recommend surgery due to the age. Not sure what I can do to help him.

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