Spinal Dural AVM

Hi Members, I was diagnosed with Spinal Dural AVM in 2015 involving the distal cord and
Conus cord. I have had repeated MRIs and there is no change. I live in Virginia, and have seen
several Neurosurgeons. Several of them want to do an angiogram. My problem
with the Angiogram is that they will use Iodine. The last time I had Iodine injected was twenty years ago and I went into anaphylactic shock. The Neurosurgeons here say I have to have the Iodine and they can pre medicate with steroids. The problem with steroids is that I have
Lyme Disease in remission. Steroids can cause Lyme Disease to reactivate again.
I feel like I am between a rock and a hard place. Any ideas or thoughts would be much appreciated. Thank you. Jose3

Jose

Welcome to the site! I know @Angela4 has issues with iodine as well.

Angela,

Do explain how you manage with the iodine / what Jose might ask about with his doctors.

Many thanks,

Richard

Thanks @DickD for tagging me
Hello Jose
I am so sorry you are going through this.
You are between a rock and a hard place. I too will die from Iodine. So each time I go in for an angiogram I take steriods for a few days before and they pump me up with injectable benedryl,
Now the last time I went in I forgot to take the meds and told them to just pump me up with loads of benedryl and if I stopped breathing I said you guys can just bring me back…its a teaching hospital-Stanford- they said no-we dont want to practice that on you… but I said I know you guys did this when I had my massive stroke and was in a coma ( unrelated to my avm) for my contrast MR’s they said that was a life and death situation.
So I dont think your drs will not do the Iodine. I can totally understand not wanting to trigger your Lyme disease coming back-

Now the only true way to know what is going on with our avms is the angiogram

My scans showed my angiogram making my blood flow go backwards but when they did the angiogram they saw it was way more complex then the scans showed.
I guess I would ask them what the long term issues would be if they dont take of your avm-

Hugs
Angela

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Hi Jose

You do not mention if surgery is an option over the angiogram. Has your Dr discussed it? My AVM was at T12-L3. The embolism procedure was unsuccessful, so they did a surgical procedure to remove the AVM. This was successful. The surgery was in Aug 2017. I am still recovering and dealing with symptoms and side effects, but I am walking with no aides, am back to work, and have resumed business travel. There are still good and bad days. I am happy to be where I am given the alternatives. If your Dr has not discussed surgery, you may want to ask, or seek other opinions. Good luck!
Chris

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Like me Chris. 5 angios, 2 embos - but then 2 laminectomies killed the beast. T8-T12, Mylopathy up T6. Was 2012-2013. Still improving, many sideeffects like numbness, brown sequard syndrome, DVT and pulmonary embolism. But the worst is bowel and bladder. Better - but still afraid of accidents with B&B. Best wishes !