I have looked through these forums quite a bit, but have not posted much. I have become extremely frustrated because it seems as though no one understands what I am going through, so I am hoping I can find some support here.
I have suffered from debilitating migraines my whole life. In 2007 I had one that was so bad that I was rushed to the ER. They treated me like I was faking it (maybe just looking for pain meds), and left me laying in the room in pain for over an hour before they just gave me a pain shot and sent me home. I was obviously concerned, so I went in to see my PCP the next day. This led to a CT scan, then an MRI. When I got the call back, I was instantly concerned because they wanted me to see a neurologist right away, but would not tell me what was wrong.
When I finally arrived I got the news that changed my life forever. The neurologist told me that my migraine was actually a small bleed, and that I had a rare birth defect called an Arteriovenous Malformation (AVM), located in the left occipital lobe of my brain. In the coming months I went through a series of invasive tests, MRIs, fMRIS, and saw numerous specialists and surgeons. I became extremely depressed, and had to be prescribed Cymbalta and Klonopin just to maintain. I was also prescribed narcotic pain killers and anti-seizure medication. From someone who had never taken anything stronger than a Tylenol, I felt like I was a walking around like a zombie 90% of the time.
Along with my surgeon we decided to try embolization first to close up the AVM, hoping that it would stop the blood flow and die off. After two of these procedures it was still there. After these unsuccessful attempts I made the extremely hard decision to have a craniotomy done so that the AVM could be completely removed. My neurosurgeon was compassionate, but at the same time very realistic about the fact that there was a possibility that I wouldn’t make it out of the surgery. At 25 years old, with a husband and daughter at home, I went to the lengths of writing up a will, signing a DNR order, and making sure my life insurance was in order. Thankfully, after 9 hours of surgery, I was out of the operating room with my AVM obliterated. The recovery was hard, and extremely painful, but I was back to work in about 3 months and glad to say I was a survivor.
If only I knew that the surgery would be the easy part. The past three years of my life have been a complete disaster. I have been in serious legal trouble, battled with prescription drug dependence, been diagnosed with numerous mental illnesses, have serious financial problems, and in general just feel like a completely different person. I feel a lot of guilt because everyone around me feels like I should just be happy to be alive and that by now, I should be over it. I also feel like the psychiatrists and doctors that I have seen feel the same way, and just diagnose me and drug me up because they don’t really know anything about post-surgery mental illness. I’m not trying to use it as a “crutch” but I really think I have psychologically changed my surgery.
Looking back on the past three years, I have completely lost the ability to understand the consequences of my actions, am extremely spontaneous, and have emotionally distanced myself from everyone. I don’t have any motivation or drive to do anything, even daily tasks like laundry and cooking.
The past week for some reason has been absolute hell. I am facing the reality of having to file bankruptcy (medical bills turned into collections), my husband is ready to divorce me, I haven’t eaten or slept in four days, and I cannot find anyone to listen to me. To top it off I started Suboxone treatment for my pain pill addiction, which has been one of the hardest things that I have ever done. I suppose I am just lost and am hoping someone can help that has been in a similar situation. I feel a lot of guilt for how my life has turned out, and want to turn it around but I feel like no one here can help me.