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My Chiari Journey

Feb 15, 2012 - 6 comments
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Chiari

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Headache

,

Anxiety



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!



Comments
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by selmaS, Feb 15, 2012
So many surprise me in how quickly they bounce back, and u r one of them...to be back to work, and to go home as quickly as u did is amazing....I still want to caution u to take it easy.....listen to ur body and I am sending prayers u continue to have a remarkable recovery : )

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by ljturner5366, Feb 15, 2012
Thanks Selma. I did take an early leave from work today. We're having problems in the building and I had no heat in my office. By noon my neck was in spasm so I left. I will be sure to pay attention to how I feel and work at home when I have to!!

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by Allie2076, Feb 15, 2012
Hi, I am such a newbee at this chiari condition. I was just recently diagnoised and told I should have the surgury. I am scheduled for 3 weeks away March 9. I am or was really nervous about the whole surgury thing but after reading your post, that is exactly how I want to be! You have really helped me tonight with your positive story, My tonsils are at 14mm, but luckily I dont have CFS fluid leakage, but the fatigue and dizziness are tough.I have a loss of words and even stranger, I feel liek i keep spacing out every few hours.  I never knew I even had this condition until I got a severe headache a few weeks back, that landed me in the ER. My quick thinking Dr. asked a laundry list of health questions which at the time made no sense to me but  got me an MRI a few days after my visit and had me admitted the minute she saw the results to get me a consult with a NS who is a also a Chiari Dr. All things considered I am very lucky and lucky to have read your story. I pray my surgury and recovery go like yours.

Hope you continue to improve, remember day by day!
Best wishes,
Allie

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by ljturner5366, Feb 16, 2012
Hi Allie,

Glad my post was helpful. I am a firm believer that your attitude going into something like this will make a difference. We all heal in our own ways and in our own time, so be careful not to feel badly if things don't go as smoothly for you as they have for me. I know I am lucky to have had an uncomplicated case and surgery. One of the things I did leading up to the surgery was visualize the whole thing going well, and remind myelf that as hard as it can be I had to trust that the outcome would be a good one.

Best of luck to you in your Chiari Journey.  I look forward to hearing how things go fo you!  :)

Laura

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by ChristineStar, Feb 19, 2012
Thank you for writing about your experiences.  My sister and I have both been diagnosed with Chiari 1 and she underwent a decompression surgery on Feb 2.  She was told on Jan 31 that she needed surgery due to a syrinx and they had her scheduled for Feb 2.  She didn't have long to stress out about it.

My question is:  How long post op were you able to start doing things for yourself (i.e. walk to the bathroom, eat, get out of bed)?  How long before the pain and nausea went away?

My sister is having a really hard time with everything.  When she vomits it causes pain which in turn causes more vomiting.  She can't walk yet and she has now lost 20 lbs.  I'm just wondering what others have experienced.

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by ljturner5366, Feb 21, 2012
I was up and walking the day after surgery, with supervision. By that night I was using the bathroom by myself. I had a relatively easy go of it, it's different for everyone!

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