Chiari Online Support Group

Post op since 2/26


#1

I had surgery on 2/26 due to a 22 mm herniation. At the end of January I had been having a fair amount of pressure at the base of my head and would wake up with my left arm numb. Prior to surgery I would have intermittent dizziness that would only occur after I would work out. The dizziness would last about an hour and then resolve. After surgery I have had continuous dizziness that seems to improve slightly at times after I do yoga or light work outs, but never goes away. I am terrified that this is my new life, is there any hope for me that this will go away? I am post op 3 months tomorrow and hope that I am just being impatient. I am also experiencing heaviness in my feet and a tingling sensation in my palms, has anyone had this? Does this improve? Also, when I walk I feel like I’m disorientated and that my feet and legs aren’t attached to my body, anyone else ever felt this? I started going to a neuro PT and she has been great with showing me exercises that improve the vestibular system, eyes, etc. I felt like it was helping and then this last week I feel like I took a step backwards. I have been praying and trying to remain positive throughout this experience. Any insight will be greatly appreciated. Thanks!


#2

Hey HopefulNeen,
I too have had the ‘joy’ of neurosurgery/s, not specifically chairi, but I have had issues with all of those symptoms and a few still occur, some daily. I’ve have taken all of the medical advice I’ve been given from PT to OT, from psych to pathology. I’ve gained a fair bit of knowledge but I couldn’t name one single dr/specialist who had the answers. It’s been a combination of advice of from many of them that has assisted me to progress somewhat. Unfortunately I’m not back to my original self and I’ve been told I probably never will be, so now I have to change who I was and the direction I was headed and manage around life now, and that ain’t easy. I am now 5yrs post my last surgery and I’m still trying to recover.
Now this may sound lame but I am some advice for you:-
Be kind to yourself-Your body has just suffered a major trauma. Neurosurgery is about the most traumatic surgery possible. Take the time your body tells you it needs. I didn’t do this and forced myself to recover, doing myself more harm than good. Don’t do that.
Listen to your body- Your body will tell you when you need rest, learn the signs. A headache can be just that, but when you get ‘an ice-pick’ headache it may be a bigger issue. I give up counting the number of people who say ‘The dr’s don’t believe me’. You know your personal limits, not the dr’s, don’t push those limits. I didn’t do this, my body was telling me ‘STOP’ but the dr’s told me I simply had a low tolerance to pain “Push past it” they told me, so I did. That was a BAD idea. I pushed too hard and crashed, ending up back in hospital requiring further surgery. Your body has many signals, gives many signals. We have to learn to listen.
I’m not going to say things are going to get better, they may and we hope they do. But by the same accord they may not. It’s how we move on that counts. Begrudgingly, by trial and error, I had to learn some of my body’s signs. If I ignore and push on, my body pushes back, telling me “Laydown or I’ll put you down…” and if I don’t listen I can be bedbound in agony.
I get the dizzies everytime I stand up and at night when I stand I always have to brace myself from falling. My wife has had to catch me numerous times. But now I know it, so I self prepare. If I get up and move in one motion, which used to be normal, I’m on the floor.
My eyes are a massive source of pain. Bright lights and flashing lights are awful. Changing from outside to inside, light to dark(or vice versa) and often my eyes want to explode from my skull. So now I take precautions ie sunglasses, hat for outside and pacing myself coming indoors, giving time for me to adjust. Driving can be a real issue with sunlight flashing through trees, it’s like a strobe light.
I get some ‘funny’ (if you can call them funny) tingles in my limbs, usually on one side. No one can explain it, some have said ignore it. But the tingle can progress to a full on ache if I don’t stop.
And then, well, then there’s the headaches. Ohh the number of dr’s/specialist and wizards who have given me all the differing opinions and ideas about headaches their causes and origins. Every thing from sciatica to vestibular to psychosomatic to psychogenic in origin. Pain is debilitating and don’t be letting any dr tell you otherwise. You are the one living it not them. But you can learn your pain, learn when a pain can be managed, learn when a pain tells you to stop and LISTEN. Learn the tools you need to cope. If it’s sleep, do it. If it’s rest, do it. If it’s simply time out from a task, do it. I didn’t I pushed way too hard way too soon and I didn’t listen and OHH BOY am I paying for that now. Don’t do what I did.
Do things get better, yes they do. But it takes time. You say you are 3 mths post surgery, for me that was early, early days. Heck, I’ve probably recovered more in the last two years than I did in the 3 yrs before that. This is a slowly slowly thing. At times VERY SLOWLY.

Merl from the moderator Support Team


#3

Girl, you sound like me!! I had my surgery a month before you. I’ve posted a couple of times with the same symptoms Post-Op looking for answers. Like you my dizziness was intermittent before surgery, however post-op it is continuous, it just doesn’t let up and nothing helps it and I have to hold on to things when moving around. Disoriented for sure. Sadly, I had to return to work before my body was ready and all my symptoms reappeared. I also get heavy legs that have trouble carrying my body and buzzing/tingling from head to toe. Since returning to work I have frequent episodes of nearly passing out. I too wondered and feared it would be my new normal, but so many people have said it WILL get better. Like Merl and so many other people have said, you have to listen to your body. I don’t know about all the other symptoms, but dizziness appears to be a normal part of the recovery and with varying degrees and lengths of time. Have you had a post-op MRI? I just requested one because something about this just feels wrong, and while it showed some improvement in CSF flow, it also showed some worsening and also a budge of CSF into the brainstem, but Chiari is gone. I don’t know if that really means anything, but neurosurgery has requested I come back in to discuss the MRI. Maybe request a post-op MRI and let your surgeons office know what you are still experiencing. They’ll either want to follow-up or tell you to give it more time, either way it’s good to touch base so it’s documented I think. My neuro nurse said dizziness after 3 months is not normal however my neuros physician assistant said it was normal. Lots of time & patience I’m finding. I don’t know if it’s ‘normal’, but so many people have posted about post op dizziness, it seems pretty common. Whether it means surgery was successful idk 🤷 time will tell. Best of luck to you for a speedy recovery!!!


#4

Unfortunately surgery has no guarantee and whilst having reduced symptoms, whatever they might be is a bonus it’s not always a guarantee. The purpose of surgery is to increase space within the skull to alleviate pressure on the brain and maximise cerebral spinal fluid flow to and from the brain. To get relief from any symptoms particularly headache (the predominant Chiari complaint) is a bonus but some people will continue to have similar symptoms than before, or worse.

You’re also still in the early days. I was told a full 12 mths recovery is necessary before being able to really assess how successful surgery has been. It’s major surgery, enjoy the small changes, work on regaining strength particularly in in the neck muscles which benefit from regularly daily stretches and try not to worry too much about how things might be in the future. None of us have a crystal ball and all we can do is live each day as best we can, enjoy the improvements no matter how small and be kind to ourselves always


#5

Thanks Melissa! Seems like we have very similar stories. Keep me posted on how your recovery goes for you. I had to go to work too and it was challenging for me, I was able to go on light duty so that has been helpful.


#6

HopefulNeen,
I had to re-read the date you had surgery after I read you were doing yoga and light exercise. Recovery from decompression surgery takes a lot of time (up to 2 years). Good for you you are getting back out there but please give your body and brain time to heal. For me symptoms come and go still after decompression surgery in 2013 but overall are a lot less severe and pronounced than they were before surgery and post-op for around 2 years. Some exercise like swimming brings on dizziness for me I think due to the head movement.
Please do not get discouraged. Over time you will likely get better and also figure out what works best for you for exercise.
Good luck with your healing!
-Shannon


#7

Hi Shannon, your words are so encouraging. I get nervous that I’ll always feel this way. Like my screen name, I am so hopeful!!! Hearing a real life story is incredibly helpful. Thank you for sharing.

Shaneen


#8

Hopeful, I’m also about 3 months out from my last experience with surgery and my advice is much the same. Be KIND to yourself. You have endured a major trauma to your system. That being said, I’ve not been decompressed yet, only shunted twice this year so I do understand.