Hello Chiari…It’s Me…Jane…


Yesterday…wasn’t my best day…I woke up still feeling kind of…fuzzy headedwhich had nothing to do with my coiffure…although…now that I think about it…that would have applied as well…

It had all to do with the fact…that a passing weather front had decided to…stop and stay for a few hours…which…sometimes…activates…my Chiari symptoms…

Thankfully…those pesky fronts…rarely cause the headaches that they did before my decompression surgery two and a half years ago…it’s more of a feeling…that…anything…and…everything…is just too much trouble…

The bed went unmade…the blog unwritten…the dishes unwashed…and…I rested until early afternoon…when…the rain came and the temperature dropped…and…suddenly I felt great again…

But…the bed went unmade…the blog unwritten…the dishes unwashed…well…I had made it that far into the day without doing them…I didn’t see the point in starting then…and I had other…fish to fry…as Mama would say…

I’m writing this today…because…there isn’t a lot of information about recovery from…Chiari I Malformation…and…that’s partly because…until a few years ago…many people…doctors included…had never even heard of it…although with MRIs…it is becoming a more common diagnosis…so…there hasn’t been time for a lot of studies and research into the long term effects…

The other reason…is that there is no one predictable course…everyone is different…as would be expected considering the nerve damage the Chiari causes…also…any co-existing conditions the patient might have…

I get numerous hits on my blog…from people who are seeking information…what to expect from surgery…what to expect in recovery…what to expect from life…

I will say for those of you who are seeking such information…my herniation was significant…35mm…all the way to T-1…and I had a thin syrinx from C-1 to C-7…I was 56 years old…my primary symptoms were…headaches…numbness of my face, arms, and hands…and increasing episodes of choking…and overall just not feeling quite right…the syrinx was detected by a Chiropractor who was looking for a ruptured cervical disc…I then went to a Neurosurgeon for treatment and decompression surgery…

I would love to be able to tell you what to expect…however…I can only share my own experience…which has been remarkable by many standards…but…slow and cantankerous…by mine…

I think…I know…I wanted it to be like my tonsillectomy…once it was done…my throat was sore for a few days…and then…I was back to my old self…

But…it didn’t happen that way…I guess…it’s just not the same with…brain tonsils…I was off work for three months…and…honestly didn’t feel like going back then…but…I did…knowing that I only had to survive two months before having…two months off for the summer…I ended up working four days a week…for the remainder of the school year…

For the first six months or so following surgery…I had a low grade fever…every day…which was controlled by taking ibuprofen…we never found a cause for it…no infection…or anything like that…probably just my brain parts readjusting to having a bit more room…

For the first year…I also had almost constant…low grade nausea…and craved…carbs…and…ice cream…which wasn’t the diet I’d planned for weight loss

The next year was better…but…I continued to be exhausted…not even having the energy to exercise…as I had hoped to do…

Last summer…I went gluten and sugar free…and started to feel better…this past year was a much better year…I had more energy…my thought process cleared…well…as clear as it will probably get…LOL…and…I felt like a person again…I was able to begin an exercise program…and although I didn’t push myself…I did exercise…

I continue to have some numbness mostly of my right arm…but…it’s not severe…I can deal with it…my neck gets tired when I sit at the computer for too long…which is almost every day…between writing and working as a school nurse…but…I’m learning to take breaks and change positions often…which helps…

Overall…this summer has been wonderful…with the exception of a few…weather days…I feel good…I’m enjoying life again…I just released my second book…Becoming Bertha…and am considering what to write next…sometimes…I think I should write about…Chiari…but…then again…I just did…

Jane

PS…please feel free to leave comments or contact me via the contact page…if you have questions…

6 thoughts on “Hello Chiari…It’s Me…Jane…

  1. I was back at work after three weeks. But I only ever worked 3-days a week so it wasn’t that bad. I think it was easier on me because I didn’t have a syrinx, I was relatively young (41) I didn’t need a duraplasty and I was in good physical shape prior to surgery.

    They say it’s approximately 1 month for every hour you’re under anesthesia before you even start to feel like your old self, which was about right for me. Also, I didn’t feel like exercising for several years afterward, and boy do I regret not forcing myself. Though, when I do exercise now, I have to be careful to not overdo it. Lifting weights must be done VERY carefully. Yoga is best, only without the neck stuff. Also, obviously, swimming is pretty awesome.

    Other than do your homework on your doctor, my advice to anybody planning to go through this is to make sure you’re in as good physical shape you can be prior to surgery, make sure you have a forceful advocate for your time in the hospital, make sure to get the contact numbers for one or two of the residents that assisted during the surgery because most neurosurgeons are egomaniacs and can’t be bothered answering simple questions once the surgery is done, understand that the steroids they give you to keep your brain from swelling afterwards can have lovely side effects like anxiety, walking-corpse syndrome (that was awesome…NOT) and high blood sugar. Oh and there’s withdrawal symptoms once you start tapering off of them. Also expect some of your symptoms to get worse immediately after surgery due to swelling which really kicks in 24 hours AFTER surgery when all the anti-inflammatories are out of your system.

    Yes, it’s a nightmare, but it’s doable. Don’t expect to sleep comfortably for a few weeks. Get yourself an awesome, expensive pillow. No, you won’t be entirely cured, especially if you have nerve damage. The chiari will always be there only after the surgery, you can be fairly confident that it won’t get worse barring an unforeseen accident. (Rear-end collisions are a disaster for zipper heads since most of us don’t have a C1. As a result, whiplash happens super easy.)

    Hope I haven’t scared anybody, but I’m one of those that prefer to get the truth, ‘straight up, no chaser’.

    Oh, and one more thing: there may come a time when surgery isn’t necessary. Stay on top of treatment options and try as many of the non surgical methods you can before you go through with the decompression. I’m pretty sure that in 50 years, they’ll be saying “OMG. Can you believe they used to cut into people for this?!?”

    • Roxanne…thank you so much for your reply…we are all so unique…but…I’m happy to be able to share experiences like yours and mine…that while they are not pleasant by any stretch of the imagination…can offer hope/comfort to someone who will be going through the procedures. Have a wonderful life!

  2. Jane,

    I commend you for sharing your story of your healing and surgery. I truly think it helps each of us when we share our experiences. That is part of the healing process—would you agree? And by you taking each step in your recovery (like writing your blog/book and going back to the gym), you offer hope and support to others who are going through the healing process after a surgery. Thanks for your continued support and encouragement to others. And WHOOHOO! on the second book!

    • Thanks so much, Teresa…yes…I agree that sharing helps with the healing process…as long as you don’t keep ‘digging’ in the wound…which I know is not your intent. 😉 Thanks for your support…it means the world to me!

  3. Wow!!! You are strong women! Yes I think you should get a book together and include as many stories from others as you can about Chiari Syndrome…. and its causes and the surgery and recovery after. How to deal with the doctors and health care providers etc.

    PS Way to go on your new book too!!!

    Hugs!

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