Feb 15, 2012
My journey with Chiari began in 2007. I had been seeing the same primary doc for a while and kept returning with a set of rather vague symptoms. I often had headaches, pain on the left side of my face, swelling, and so on. Most times she diagnosed it as a sinus infection and gave me antibiotics. In 2007 I started having more symptoms, tingling in my hands and feet, shortness of breath, and fatigue. She checked me for Lyme (which I previsouly had), thyroid, RA, etc. During that workup she sent me to a neurologist who ordered a brain MRI, thinking possible MS. Prior to the results of the MRI, it showed in my bloodwork that I was severely deficient in vitamin b12. I went to the neurologist who mentioned that I had something called "arnold chiari malformation", briefly explained that in his view this was an incidental finding and not the cause of any of my symptoms, which he believed were solely due to the b12 deficiency. I started a regimen of injections followed by supplementation and was considered "treated" by the Neuro and my primary.
However, although I felt better; the tingling went away and I had more energy, the headaches and facial pain persisted and I was treated repeatedly for sinus infections. Eventually my primary sent me for a CT scan of my sinuses, and lo and behold they were absolutley normal. No polyps, no congestion.
Finally, at my regular physical in the summer of 2011, I mentioned to the PA in my primary's office that although I felt essentially healthy, I continued to have persistent headache pain and facial pain. She decided to repeat the brain MRI. Again, the MRI report noted Chiari Malformation Type 1. The PA asked my primary what the finding meant and was told that it was some sort of "blood vessel thing" and nothing to worry about. I decided to do some digging of my own and when I did, it became very clear that I needed another opinion. I attemtped to convince my primary that I needed to see a neurosurgeon, however they were insisting I see a neurologist. By this point, I knew the chances of getting anywhere with a neurologist were slim, so I made some calls myself. I found that there was a Chiari specialist working at a local hospital, and although their policy was to only accept direct referrals from another doctor, I was able to convince the secretary to let me send her my MRI report and show it to the neurosurgeon to see if he would see me. Luckily, she did and he was!
I met my neurosurgeon, Dr. Matthew Adamo of Albany Medical Center, in October 2011. He agreed that I clearly had a significant (possibly up to 15mm) Chiari malformation. We discussed my symptoms, the daily headache and facial pain, issues with balance and coordination (I thought I was just clumsy), snoring, swallowing difficulties, etc. We discussed the possibility of a syrnx and tethered cord and he ordered a full spine MRI. He did not rush to recommend surgery and was an excellent listener with whom I felt very comfortable. When I received the results of the full spine MRI, which was negative for syrinx and tethered cord, I was pretty sure I would not be a surgical candiate. When I went for a swallow study and the results were inconclusive but leaning more toward reflux than Chiari I was even more convinced that Dr. Adamo was likely going to refer me for pain management.
So when I went early January to discuss all of these results I was fairly sure I would be leaving without the possibility of surgery on the table. However, in the time between October and January, I kept a more keen eye on my symptoms and realized just how severe they were and how I had come to accept them as normal. In talking to other people I learned that not everybody has a headache every day. It sounds silly now, but to me this was a true revelation!
Dr. Adamo went over my test results, we talked about my symptoms and how I had been more closely monitoring how I felt each day, and he showed me on the MRI why he believed that surgery would likely relieve my symptoms. He could see that the space below the foramen magnum was very crowded and that a decompression would open up that area to allow CSF to flow as it should. He said that he would do the surgery as conservatively as possible and would not do a duraplasty unless it was clear that the bone and ligament work did not create a decompression. By the time I left the office, I had signed the consent forms for surgery and was told it would likely be scheduled 3-4 weeks from that day.
Needless to say, this was not the outcome I expected that day, and my anxiety immediately began to climb an the reality of the situation sank in. I also had to tell my family that depsite what I had been saying for months, it turned out I really did need surgery. They were shocked and concerned, and so we all went into "planning mode". We discussed the likely length of my hospital stay, rotating who would be with me at home, etc.
When I called Dr. Adamo's secretary I got another surprise, the surgery was scheduled for just two weeks away! This brought about another round of planning, which is how my family deals with thing like this. My repeated statement was "Well, I know where I'm going to be, it's the rest of you that have to figure it out!" :)
On Thursday January 26th, I arrived at Albany Med for surgery. I was in the pre-op area for about an hour and a half getting ready. The usual stream of doctors, anesthesiologists, nurses and even a med student paraded through. Eventually Dr, Adamo came in and again explained the surgery to me completely. I was given a mild sedative and wheeled into the OR. As with every surgery I have had, I did my best to stay awake as long as I could, I find the whole OR atmosphere so fascinating! Eventually the anesthesia got the best of me and I was OUT.
The next thing I recall was being awakened and told the surgery was over and I was in recovery. In my slurred speech the first thing I asked was "Did he do a duraplasty?" I'm not even sure the nurse knew what I was asking so she just said everything went very well and I should rest. I had several bouts of nausea and vomitted 4-5 times, despite the anti-nausea meds they had me on. Dr. Adamo had mentioned in our appointment that this can happen because they stimulate the area of the brain that can cause vomiting during the surgery. I wasn't all that bothered by it, as I always have issues with general anesthesia with surgery. I don't recall feeling a lot of pain, more a soreness and tightness in my neck. I was in and out of sleep.
Eventually I was moved to the Neurosurgery step down unit. It was a crowded night and there were some issues with other patients being combative (post stroke) so at least things were interesting. I slept on and off, had a few more bouts of nausea, and was kept on a steady stream of pain meds. By this time I knew that Dr. Adamo did not do a duraplasty. My partner explained that when she spoke to him he said that once he did the craniectomy, the dura "outpouched" and ultrasound confirned that the space was open and CSF was flowing. There was an issue during that night with keeping my blood pressure stable, though by morning it was back to normal. The on call Neurosurgeon removed the bandage from the back of my head, which was the most irritating part of the entire process!
That night (Friday) I was moved to a private room, where I was able to get some better rest. But for me, it was also boring! I was fully stable by Saturday and was offered the chance to go home that day or stay another night. I decided to go on home, since I found that once I was in a room it was a little harder to get pain management as quickly as it had been in the step down.
Once home I egan to feel better each day. I was off pain meds after 3 days though I continued with the muscle relaxer at night. I rested as much as I could and marveled at the lack of headache and facial pain. It was like the world went from black and white to color over night! My cats were thrilled to have me home. However, once I really started to feel better, I began to get restless. I started doing light housework and some not so light housework. So, when I went to my two week follow up with Dr. Adamo's PA I asked about returning to work. She gave me until the following Monday and said at that point it would be OK.
So I returned to work on February 13, almost a month to the day of the decision to have surgery. I realize this is a very quick period of at home recovery, but the job I have is mostly desk work and meetings, and it's actually a little "safer" for me to be here than at home. I am also lucky in that my office is less than two miles from my house and I am able to work at home whenever I need to. My employer, of only 4 months when I went out for surgery, has been incredibly supportive and I had no worries about my job. My first day back at work I started to feel some twinges of facial pain. I realized that although I felt good, I am still healing and need to allow for some bumps in the road.
I am now 3 days into my return to work and boy am I sleeping well at night! Luckily this is a three day weekend so I will get some extra trime to rest on Monday. I know my Chiari journey is nowhere near its end, but so far I am so grateful for how it has gone. Dr. Adamo was not practicing in this area in 2007, and the timing must not have been right for this to happen then. I am so glad for the way it did and try not to harbor any bad feelings toward the other doctors who don't know about Chiari. My primary has been copied on all of my tests and so on, so she knows a little bit more now than she did. Next appointment should be interesting!