I also have an AVM in my Right PONS; I also recently underwent a craniotomy. My bleed was underneath the cerebellum on my brainstem. My rupture was in July 2016; they placed me in a self-induced coma for 16 days the same day as the bleed to reduce the swelling before they were able to do the craniotomy. I also didn’t have control of my airway and was placed on a ventilator the same day as the bleed; I was on the ventilator for 18 days. I am a very truthful person and don’t mean to scare anyone, however I thought I was in a nightmare for awhile once I gained consciousness you can read other post on here of that specific experience.
Now specifically the AVM in the right PONS; we have looked into several options and direct surgery was crossed off our list because of the dangers it posed. Unfortunately, the PONS is in a place in the brain where at least 4 cranial nerves cross. Direct surgery is scariest for even the most gifted surgeon because of those cranial nerves. There was a chance I could be on a ventilator for the rest of my life and also lose control of several facial muscles. The surgery would entail an ENT drilling an estimated 2-3 hours to reach the PONS and then a very talented surgeon removing the AVM without damaging or cutting into the very vascular area that it is. I was referred to the best surgeon in the NC area that could possibly undertake the task.
After an MRI/MRA and a CT scan we decided along with the surgeons; that direct surgery wasn’t the most practical plan to remove the AVM; too much risk was involved. We also discussed a procedure called Cyber Knife surgery, which is more advanced than Gamma Knife. I have already undergone Gamma Knife back in 2003 and they were recommended for Cavernous Malformations only. The surgeon that recently did my craniotomy suggested that the Gamma Knife I had back then more than likely weakened the structures in my brain leading to the craniotomy; but life cannot predict your present circumstances and that Gamma Knife surgery cannot be convincingly blamed for the craniotomy. We decided to take a back seat and watch the AVM in the PONS; every 6 months we will have a MRI done. If they notice any growth, we will more than likely choose the Cyber Knife option.
I have only been recovering from the craniotomy for 18 months and I don’t know if some of the symptoms I’m experiencing are damage from the AVM bleed in the brainstem or the medication they recommended that I take for one year post-op; or perhaps it is from the AVM in the right PONS. I also have problems like intermittent balance problems, lack of coordination. I also experience feelings of being high, paranoia, and confusion (I feel like I’m in a different world). I also think I’m losing my voice, but people in my life say it’s my imagination or I’m losing some of my hearing. I know the “high” feeling, paranoia, and confusion were from the Keppra they had me on. I hope those feelings will go away in time. I have read other peoples experiences on these medications and with past experience, especially for me; I have more problems with the side effects of the medications, then help with these medications. I have been off Keppra for almost 2 months and I still experience withdrawal symptoms, I hope it ends; it is not fun.
I know it must feel like it is a lot to swallow; but I have been through a lot in my life. The craniotomy was the 4th procedure I had in my life. I was first diagnosed with AVM’s in my spinal cord in 1994. I had 3 surgeries to remove them; once in 1994, again in 1995, then last in 1999. They told me each time I’d be in a wheelchair; I proved them wrong. I also mentioned Gamma Knife in 2003; then the craniotomy in June of 2016.
Take the time to read each of the different experiences on this forum. I wish this type of forum was available when I first experienced an AVM. I don’t know if it would have changed any of the decisions that I made concerning them; but it would have helped getting some of the concerns I had off my chest. You mentioned a career future; I was a firefighter/Paramedic for 25 years. I fought the fight and survived for longer than I thought I would. I am 55 now and I’m tired. I know better than to put other people’s life in the balance, so I accepted that my career as a firefighter/ Paramedic has ended. Good luck in your decisions; and if you make one, please don’t look back and doubt that decision.