Really struggling during post-op

General
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Hi all,

I’m just entering 8 weeks post-op from my decompression surgery (craniectomy with duraplasty and laminectomy of the C1 arch as well as part of the C2 arch) which, according to my surgeon, went well.

During the first couple of weeks, I had really awful neck and shoulder tension that eventually led me to the ER looking for relief since my surgeon was unreachable. Turns out I had extreme inflammation that required prescription anti-inflammatories, which the ER doc obliged with. I’m still unable to move my head to the left or up and down too much, but the extreme pain isn’t there anymore thankfully.

Also, the hearing in my left ear gets very muffled at times, as if I have swimmer’s ear. This hearing symptom has been present since my neck and shoulder muscles were inflamed and persists today. I noticed that when I iced my muscles back in week 2, the hearing would clear, so I’m curious is there’s a correlation between the inflammation/tightness of my neck and my ear.

Now, for the reason I’m writing this. I’m going into week 3 of having balance issues. It’s not true spinning, thank God – just the sensation that I’m leaning to the left. My eyes won’t focus fully and I get nauseous easily.

I had pretty much no balance issues to speak of for the first 5 weeks post-op and then as soon as I set off for home (I’d had my surgery out of state), the balance problems ensued. I’ve tried convincing myself that they came on due to the long periods driving through different elevations and the general strain of traveling, but since they’ve persisted, I’m starting to wonder if something is really awry.

My surgeon has washed his hands of me, I’ve been to an ENT who had trouble checking my “crystals” since the range of motion in my neck is very limited at the moment (and subsequently referred me to a neurologist to have an ENG done), and my physical therapist thinks I may have a peripheral (vestibular) issue but isn’t totally convinced my problems aren’t actually central (brain) in origin.

My sincere hope is that the limited range of motion in my neck is what’s causing the balance issues as well as the persistent muffled hearing and that these symptoms will resolve as I continue doing PT.

Can anyone relate to these symptoms or my experience? I really fear these balance issues may be permanent and while I’m trying not to panic, I see little light at the end of the tunnel as these issues persist.

Thanks so much,
Kate

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Yes your story is eerily similar to my own. After much searching and lots of despair of having anyone believe me I found answers to my concerns.

For post-surgery balance I found primitive reflexes that addressed the vestibular processing systems in my brain through shoring up the neurodevelopment of my vestibular system. My “crystals” were fine and my peripheral vestibular system wes fine. Basically, my brain had forgotten how to process vestibular information from my eyes and body. I have a big posting here outlining the specific primitive reflexes that target the vestibular system among other things.

Nausea and eyes were helped by the primitive reflexes but I also needed to address muscle triggers which can affect them (and hearing and balance and neck and shoulder pain!). I found Clair Davies’s book " The Trigger Point Therapy Workbook". It has an excellent system of listing what is wrong and sending you to address the muscles that could be affecting what is ailing you. Of course I also had to use motor control exercises to normalize movement patterns in my neck and shoulders.

Given the ease of finding the Workbook and the difficulty of finding someone to help with the primitive reflexes, the muscle triggers seem like a good place to start.

I also had to do vision therapy to work on vision given my visual processing was also affected pre and post surgery.

Good luck and hopefully you can get your physical therapist on board with what you need.

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Hi Gabby,

Thank you so much for this info. I’ve already ordered the workbook and am looking into primitive reflex therapy near me. Do you mind me asking what your standard of living is now that you’ve done these therapies? Have you made a full recovery, or do you still suffer from symptoms that require attention?

Thanks again,
Kate

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Please keep in mind that my Chiari journey is different then yours. My start and end results are different. I am pleased with my recovery in that I am no longer bed-ridden though I am sure that my standard of living is not what you would wish for yourself.

In terms of dizziness, that is now resolved though I have to do a series of the primitive reflex exercises every 12-18 months. My head, neck, and shoulder pain have resolved. I do not take any medication. Vision is greatly improved though I am due for another maintenance therapy bout. Though perhaps reading glasses are in my near future!

Ask away if you have any other questions. It is difficult to get the help you need!

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I am sorry that you didn’t have the support you needed from the surgeon. I had that same experience at Hopkins in Baltimore. As soon as I woke up and was still in pain, he was visibly angry and I was referred to another doctor to try to clean up his mess.
I am hoping that you have much better post op (and after) results than I did. It has been almost 20 years with constant problems that all stem back to my surgery. I am now paying out of pocket to have acupuncture treatments weekly and finally having some good results and good days.
Try to stay in good spirits. I found my attitude could make a bad day so much worse and if I stay positive and keep looking for my answers, then the bad day isn’t as bad as it can get.
I pray that you begin to feel better and your inner ear issues resolve soon. That has to be unsettling. But you got this far, you are a warrior! Your body will learn to heal and so will you. Keep looking for the little things that help and make a note of them. So when you start feeling bad, pull them out to see which help that day. I use heating pads on my head and neck, longggggg hot baths, acupuncture, sitting under a shower running on my neck feels great too. Massage is wonderful. Anything that helps decrease your bad symptoms is valuable, your list may look nothing like mine or be the same, who knows. But start finding those gems to help you get through the rough spots.

I hope this was helpful for you. My heart goes out to you.

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Your story is the same as mine I went through everything You’re going through after my surgery I’m still going through it my surgery was September 6, 2018. However I do have good days I have bad days my neurosurgeon has washed his hands with me also. I’ve had EEGs done, EKGs. MRIs. Cat scans, blood work you name it. Right now I’m dealing with my neck cracking every time I move it it makes it hard for me to drive by myself I need somebody in the passenger seat to let me know if a car is coming I’m not able to easily move my neck. I’m sorry you’re going through this Chiari malformation can be a pain in the butt but we will make it through. Sending positive vibes your way