AVM in parietal-occipital lobe

[Steve]

On June 21, 2008, my husband Wesley woke up with what he thought was a killer migraine. Since he occasionally had bad headaches like this, I was only slightly concerned and suggested that he take his migraine medicine (which had been given to him by the neurologist who had diagnosed him with migraines without ever having taken a CT scan). My concern grew when he began vomiting and having vision changes, along with saying he felt "weird." Finally, at 4a.m. on 6/22, I took him to the ER.

He was given pain medication and told that it was most likely a cluster migraine. The doctor on duty was going to send him home, but THANKFULLY, he had just seen a case identical to Wesley's the previous day where the young man (26, just like Wes) was diagnosed with an AVM; so the doctor was on alert and suggested that Wes get a scan just to "rule anything out." Boy were we glad he did. The scan revealed a fist sized AVM in his left parietal-occipital lobe that was thought to be within days of bursting.

Wesley was admitted to the hospital nearly immediately and underwent a ten hour craniotomy to remove the mass. He was kept in a drug induced coma, during which a blood clot developed in his brain and a second emergency craniotomy was performed to remove it. There was also residual AVM found during the second surgery which was removed as best it could be without causing too much damage to his brain tissue. The surgeries were very traumatic and we were told he probably wouldn't make it. This was especially heartbreaking for me given the fact that I was 9 weeks pregnant with our first child at the time (I am now 7 1/2 months along).

Thank God, he DID make it, although he lost his complete ability to function as a human. He was reborn as a baby in a grown man's body; he had to learn to walk, talk, brush his teeth, toilet, take showers, dress, etc, all from scratch. In total he was in the hospital for 6 weeks, inpatient neurological rehab for 3 weeks, and to this day (11/25/08) is still in outpatient neuro rehab. He has never regained sight in his right eye, and has little to no sensation in the entirety of the right side of his body (although he has learned to control the muscles and use it anyway). He has sustained some cognitive and communication disorders as a result of the surgery, including apraxia and aphasia. He did go through a bout with depression and constantly questioning why this happened to him (to be expected I think).

Despite his struggles, he has maintained a mainly positive attitude and has refused to give up his recovery. Doctors said he wouldn't live, he did. Then they said he would most likely be brain dead. He's not. Then they said he may never be the same...he is exactly the same, except for occasional word finding difficulty and a heightened sense of compassion and awareness of others' suffering. DO NOT GIVE UP if you have been diagnosed or told you need surgery. Your recovery is up to YOU.

I am currently writing a book about our ordeal and the drama surrounding it; while Wes was in the hospital, our house was COMPLETELY burglarized, my employer filed for Chapter 11 bankruptcy, and all the while I was trying to maintain my composure while paying bills and simultaneously holding my husband's hand as he neared death in the hospital (oh and living near the toilet due to EXTREME morning sickness). Along with the suffering came numerous blessings...we had amazing support and used our mind power and refusal to accept defeat to get through it all.

I am going to be starting a critique group (via email) to read pieces of the book as I write it and tell me what you think. If you are interested in being in the critique group, please email me.

Thank you,
Jess King