Hi @jenniferhunter. I didn’t have any symptoms prior to the rupture. At the time, I felt something was wrong as I lowered myself to the floor to vomit. I later passed out. I woke up in ICU at a Tampa hospital after being in a coma. I was told I wasn’t expected to survive. I had no definite answers so I didn’t know what to expect. I had to have additional surgeries to correct the AVM. Luckily the 2 involved going in through the groin, no incision. My last repair in January 2017 left me with the neuropathy on my left side of my body. From my very first surgical repair, I felt my neck in the back being tight at the base of my scull. In time it became less tight as it healed. My neck muscles did hurt and feel tight and still do with less intensity. I had a cerebral angiogram in the fall 2017, recommended by the neirosurgeon. The results proved there was no reoccurrence of an AVM. I did not need to get authorization from my neurologist to take any OTC medications or supplements. Although I was told I no longer had an AVM, I am dealing with the after effects. There has been some progress like with the walking but I still am feeling dizzy no matter where I move my head. I still have the neuropathy, headaches, and double vision. Eliminating the motion sickness would allow me to take part in activities again. I no longer see the neurosurgeon regarding the AVM. I now do have a PCP for general exams. I don’t think anyone wants to deal with my symptoms. Other than the symptoms of a ruptured AVM I am healthy. Prior to this I had annual exams and was not on any medications. My physicians had no alarm for any concerns since I ate healthy and followed an exercise program. After my hospital stay, I was briefly on Keppra until I got it discontinued. My neurologist had agreed with me so I was never on any medication again since then. The neurosurgeon had no answers for me because I was told that not enough people survive to collect any data. I have stopped with the questions and feel that I need to figure things out by trial and error. I appreciate the emails. It has given me an insight to ask my PCP in Tampa questions. I don’t think he knows either but I will try.

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