Hi, I feel the need to tell my tale , as it may help the select
few that have been diagnosed with spinal AV Fistula.
Am I in the right place ?
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Welcome to the site, and you are for sure in the right place. Folks on here with a wide variety of AVMs āet alā in locations all over the body. I have an AVM in my left temporal that bleed in May of 2016 and still in the ājourneyā. I would love to hear your story, and again welcome to the site! John.
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Iāll get back soonā¦Thank you
[quote=āJblyon, post:1, topic:19346, full:trueā]
Hi, I feel the need to tell my tale , as it may help the select
few that have been diagnosed with spinal AV Fistula.
Am I in the right place ?
May 2012
started with a minor auto accident. I was rear ended while at a stop light. I thought that I was fine until a week later when my feet felt heavy. After week two, legs were very weak and I had trouble standing. After week three, I couldnāt urinate .
While waiting for appt. with the best back doctor around, the symtoms worsened and I could no longer walk without falling and I started losing control of bowel n bladder so I went to emergency room at local hospital July 6, 2012. After MRI and diagnosis,a bulging disc was revealed and surgery was scheduled.Along with other symtoms,I was in a great deal of pain . After surgery,the pain was gone,but I could not move my legs. I had also lost feeling from waist down. I couldnāt believe it. Suddenly Iāve gone from being a healthy, happy guy to this. Gotta go , Iāll be back w part 2 itās a doozy
Part twoā¦Not 20 minutes after trying to move with no luck,The head nurse comes in and tells me that I need to be in a āskilled nursing facilityā and we donāt offer that so we are discharging you.She told me that I should call around and find somewhere to go.I had never been in a hospital,so I didnāt quite know how to handle that one So I decided to use tact in saying , I walked in here and I expect to walk out.Among other expletives . it was the right thing to say because they went in to immediate damage control.A vast array of doctors examined me and diagnosed many different āpre exsistingā conditions that caused this problem 23 MRIās 23 different opinions.
I had spinal taps , cat scans , pet scans , and any other type of test imaginableā¦Finally in mid August they came up with the final diagnosis. A disease called Transverse Myelitis. My spinal fluid is ruined and Iām screwed.We are going to put you in an occupational therapy course to teach you how to live life without legs.
I do not believe it , not for a second but I go along just so I can get out of there and find a Doctor that can figure this out. ā¦Back tomorrow, sorry about the length of the story as Iām leaving out as much as possible
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Hi. I too was diagnosed with a spinal AVM at the T12/L1 level of my spine. I have a lot of similarities to your story, however your ātriggerā seemed to be the car accident. I did not have any specific trigger. My symptoms came on slowly. Like you, I had trouble walking, numbness in my upper legs and feet, urinary and bowel problems. I had initially see an orthopedic doctor, who prescribed physical therapy. He later ordered an MRI. When he got the results and called me, I could hear the fear in his voice. He said to go to the ER. I went to the ER and they ran more MRIās. I was told by the Neurosurgeon on duty that I could have MS, and auto immune issue, vascular issue, or cancer (I am a cancer survivor as well since 2000). He then ruled out the vascular issue, so I was left with the other possibilities. I then saw a neurologist, had more MRIās from brain to base of spinal cord. I had no lesions typical of MS, but I did have a large cloudy area in the base of my spine, where it should be clear. He sent me for a round of immunoglobulin infusion treatments to improve my immune system. He also indicated I could have Transverse Myelitis. The infusions had no effect. He eventually told me to seek care in NYC (I live 2 hours from NYC) from an MS doctor even though I did not have MS. All this time my symptoms worsened. I found a doctor at NYU who listed Transverse Myelitis as a specialty. I had one appointment with him and his fellow. After two hours and review of all of the MRI results, they said they strongly believed I had a vascular issue. They sent me to an interventional radiologist at NYU. After another MRI with a more powerful magnet, he diagnosed me with the AVM. The cloudy area at the base of my spine was blood that was leaking from the AVM and pooling there. This cause swelling and put pressure on the nerve endings there, which was the major cause of neurological issues below the waist. This was in August of 2017, 2 months after a neurosurgeon told me it was not the vascular issue. The week after the the diagnosis, I was scheduled for an angiogram so they could close of the AVM with glue (the embolism procedure). Before the procedure, I asked about success rate with the procedure. I was told that 70% of the time the can fix the problem with the embolism. Well, I was in the 30 % category. The angiogram did not work, and two days later I had surgery where they cut through a small section of my spine to access the AVM. They cut it out, While I was still under anesthesia, they did another angiogram to ensure they got it all out. Thankfully, they got it all. Since the surgery, I have seen major improvements. I had lost twenty pounds and that has come back. I can walk without any aids. A recent MRI shows that the cloudy area at the base of my spine has significantly decreased. The doctor is saying it can take up to 18 months or more in some cases for the nerves to repair themselves. I am optimistic that this will happen. My advice to you is to continue to push your doctors and seek care at a major medical facility if you can. I always speak highly of my experience with NYU -from diagnosis, to surgery to follow up care.
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