[16753438]
I was diagnosed with a high flow, superficial arteriovenous malformation/fistula on the left side of my forehead. On (b)(6) 2012, it was fully embolized via femoral and percutaneous approach using trufill nbca mixed with ethiodol at a 1:4 ratio. Approximately 12 hours post embolization my blood pressure dropped. It resolved quickly with treatment and was attributed to anesthesia. I was discharged on (b)(6) with minimal discomfort which was treated with ibuprofen as needed. When i woke up on (b)(6), my upper face was so swollen that my eyes were swollen shut. I was also experiencing fatigue, lightheadedness, brain fog, orthostatic hypotension and some scalp soreness/shooting pains in embolized area. Most of the symptoms slowly resolved over the next 7 days. On (b)(6) 2012, the embolized area began to itch. By (b)(6) 2012, all areas treated with nbca were swollen again (forehead, left jaw and below right eye). My neuro interventional radiologist was puzzled as to why the reaction was occurring so long after the embo. Then i remembered that i had been taking fluticasone during (b)(6) but had quit sometime around (b)(6) 2012. My doctor prescribed methylprednisolone dose pack. The swelling resolved in a few days but my body did not react well to the steroid. I completed the dose pack and horrible withdrawal. By (b)(6) 2013, the swelling had returned, this time with hives. I put myself back on fluticasone, because it had worked before and i wasn't going to take anymore oral steroids. I also took zyrtec for a few days until the fluticasone began to work again. It took the facial swelling down in 2 days. I was also told to take zantac. My doctor seemed satisfied ((b)(6) 2013) and said try to wean from the fluticasone in mid-(b)(6) and we will reassess. At this point, i was experiencing varying levels of fatigue, lightheadedness, brain fog, orthostatic hypotension, low blood pressure, palpitations, and some burning, itching, tingling, and shooting pains in my eyes and head and neck. I continued to take fluticasone and zantac so that my face wouldn't swell up again. During the second week of (b)(6), i began to further decline and spend more time on the couch. I also began to experience more pain in my head and neck, nausea, stomach aches, and full body neuralgia. At this point, the treated avm seemed to have soften and change shape. It looked more puffy and a new pocket had formed. I began to explore surgical options for the removal of the glue and called into my neuro ir to tell him that something needed to be done. I also saw my internal medicine doctor and an immune/allergy specialist. I identified an avm specialist and scheduled the resection of the avm and glue for (b)(6). On (b)(6) 2013, my internal medicine doctor ran several blood tests that all came back normal except for elevated ige. I saw the immune doctor on (b)(6) 2013. He wanted to do a skin test with the glue/oil, but we were unable to obtain a sample. He attributed some of my symptoms to overactive mast cells and prescribed oral cromolyn sodium and allegra. Within a few weeks my energy levels were back to normal and the stomach issues resolved, but the other symptoms remained. The immune doctor also ran many blood tests. All came back normal except the elevated ige, which he said could be due to seasonal allergies. On the morning of (b)(6) 2013, a small hole on my forehead opened up and approximately 2 ccs of a grainy, mustard yellow paste and a little liquid ejected from my head. I wasn't sure where it was coming from or what it was. Later that evening more paste ejected followed by a mustard yellow liquid and then followed by an opaque yellow liquid. At this point, it was obvious to me that the embolized avm was draining through the previously healed percutaneous injection site. I kept tracing all of the veins and pushing the stuff out of my head. On (b)(6) 2013, i had surgery. The surgeon worked through 3 separate incisions to access as much glue as possible. There is still glue in my ophthalmic veins and cavernous sinus bilaterally. Less than one week after surgery, it was obvious that he had not been able to remove enough glue to stop my symptoms. I went right back to where i was but with much more fatigue from the stress of the surgery. It is now 2. 5 months post surgery (5. 5 months post embolization). My immune doctor was continued to run multiple blood tests which have come back normal. I am taking allegra, fluticasone, cromolyn sodium and gabapentin. My energy levels have improved since surgery, but i am not back to my normal. Current symptoms include orthostatic hypotension, dizziness, mild face swelling, some stomach issues, full body neuralgia, burning/blurry eyes, itch/sore scalp, and some headache/shooting pains in embolized area.
Patient Sequence No: 1, Text Type: D, B5