Chiari Online Support Group

How long is the wait from diagnosis to surgery?

How long is the wait for surgery? I’ve been diagnosed w Chiari 1 9 months ago, have had two MRIs, a CINE, and see the neurosurgeon in three weeks. What’s the time frame I should expect from that appointment to surgery? My symptoms have become progressively worse.

I believe for me it was a month

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Dear Malibuski,

Goodness. I think it all depends on how popular your neurosurgeon is. I was on a waiting list for nine months. But, my neuro-doc’s office asked that IF there was a cancellation at any time, would I want to take it. I emphatically said, “Yes!” And, a cancellation did open up after a ‘mere’ six month wait. Those were the longest 6 months of my life. Healing was very slow afterwards, though. It took my CNS years to gradually pick up where Chiaris had squished it.

Oh wow 9 months, I dont think I can wait that long! Seems like an eternity. What was recovery like? Did you loose any coordination or have to relearn how to walk or run etc?

Ok. What was recovery like for you? How long did you need off of work to recover?

Dear Malibuski,

I don’t think a 9-month wait for surgery is very common. I had the issue in that my Chiari surgeon is one of the best, and takes patients from all over the world. In fact, Chari decompression surgery is pretty much ALL he does. Neuro-docs from all over the country sit in on his surgeries to watch how the expert does it. He was well worth the wait. I’ve talked to several post-Chiari patients whose immediate recovery was rough - they ended up back in the ER or ICU for days after their surgery. My doc sent me home after a mere 24 hour hospital stay. He told me, “Get out there and start living life! Move! Get your nerves talking to each other again.” And, I did.

However, I think I began in considerably worse shape than you. Maybe. My
Chiari’s went mis-diagnosed for 10 years. I gradually was going totally paralyzed and brain dead. From 2008-2012, I was near vegetative state. I have very little memory of those 4 years other than they were a mass of excruciating agony that had no end! I applied for disability in 2008 - and finally got it in 2010. So - I was way past being able to work. I was not even able to move! I really think I was on death’s door! :expressionless:

That’s why I ended up having to move to NC. I had lost my job. I lost my townhouse (couldn’t pay for it anymore w/o a job!) My health was gone. My friends and family disappeared - especially after 4 years of shut-in life. It was a massive nightmare I wouldn’t wish on my worst enemy! However - being forced to move in with a friend in NC also led me to one of the best Chiari surgeons on the planet. (It also led me to finally being diagnosed with Chiaris!)

Because I came into my Chiari’s surgery already with so much permanent CNS damage - due to being diagnosed so many years after symptoms first showed up in 2002… I never recovered 100% post-surgery. I have recovered 75%, though, and am LOVING IT! I’ll take 75% over 0% any day!!! Weeks right after the surgery, I didn’t see any change at all at first. But, my neuro-doc told me that CNS recovery is NOT like muscle or bone healing. CNS healing is like a roller-coaster. You’ll feel the ‘usual’ awful - then suddenly you’ll get an hour or two of “normal.” Then, you plummet back into awful. Gradually, over days, weeks, months… those normal, wonderful peaks should increase and increase.

That is exactly what happened to me. My spats of ‘normal’ always came in 2-hour increments. And, I didn’t really get my first peak of normal until about 3 weeks post surgery. And, WOW! Did I ever know it!!! I just started giggling, tried to dance - went for a walk - really over-did it. I had not felt normal like that for over a decade!!!
Then - in a couple days, it happened again. And again. In about 3 months, I was up to two normal DAYS - followed by two bad Chiari days. Back and forth. The healing process just kept going on for years. I was told once that after 4 years, whatever symptoms remain - those are the permanent symptoms. But, my neuro-doc said that’s not true. He said healing can go on all your life. But, it does slow down - “plateau out” after years and years.

Now, I am 6-years post surgery. My roller-coaster of healing has pretty much leveled out. I think. I get 3 days of wonderful, ‘normal,’ pain-free life. Then, every 4th day, all my Chiari agonies return. I always say "return’ when in reality, these symptoms are the parts of my brain that just will never heal. They don’t ‘return’ - they never left. But, the average person doesn’t understand that. I don’t understand it! Even my neuro-doc doesn’t understand it. My 4th day of agony has been extremely regular and predictible for the past 4 years. I can mark out my calendar as to when the bad “Crash” Chairi days will return. :roll_eyes: All I can say is that I think it is my brain stem that got the brunt of the Chiari “squish;” and the brain stem is in charge of your body’s cycles. I think the biological clock in my brain stem got permanently sprung by Chiari - and that’s why my re-appearing symptoms are so regular. If anyone else has a better explanation, I’d LOVE to hear it! :wink:

On my “normal” days, I still do have to be very careful even still. If I over-exert on any activity or emotion - I can bring on all my miserable Chiari symptoms in short order. Especially stress. Even FUN stress. For example, over Christmas, I was determined to do a whole bunch of Christmas cookie baking - and share the treats in festive tins with friends. It was SO MUCH FUN. But, wouldn’t you know… I brought on at least 3 unscheduled, unplanned Chiari bad-symptom days from the effort of that cookie baking.
And, just yesterday, the frenzy of preparing a dinner for guests - in a matter of an hour, my Chiari “Crash” symptoms decsended on me unexpectedly.
Again - only guessing here - I think it is extra exertion that provokes the permanently damaged nerves.

Hopefully, you will not have that problem! Everyone heals differently. Some do heal 100%. Some heal only 10% It is a big variable. The younger you are - the better. (Although I have met a 66-year old who healed 100%! So… there you go!) Sorry I got so verbose.

recovery varies I had complications due to allergic reaction to medication given to me and also me being in a wheelchair delayed some of my recovery because I made some movements that normally you shouldn’t after surgery plus lifting my own weight.

I have read that many Chiarians on this website were given activity restrictions post-surgery. It makes sense. I was not. I was told to “go for it,” and make myself do everything - walking, lifting, etc. But, I don’t think that may have been the best thing. Even now, if I do too much vigorous work with my arms - like trying to mix baking ingredients in a 58-degree apartment, and the ingredients are stiff-as-a-board and won’t stir… the stress of doing activities of stress STILL brings on a relapse of paralysis and ‘old’ Chiari symptoms.

My surgeon could schedule anywhere from 2-3 weeks out. I chose the timeframe that was right for me. I needed to get quite a bit in order for my recovery, and wanted to optimize my health prior to the surgery as much as I could. I decided to do the surgery in May, and scheduled it for late August. That worked very well for me, although my condition had deteriorated quite a bit. I did a few courses of steroids in May, June, and early July, which was the only thing that really helped the pain. I couldn’t do them too close to surgery. Talk to your surgeon about making you as comfortable as possible while you wait.