Hi from Australia!
I’m really hoping someone may be able to shed some light or at least point me in the right direction to find out more information about lumbar surgery after Chiari Decompression.
I had Posteria Fossa Decompression in Oct last year which relieved many of my debilitating symptoms or reduced them significantly. Although I’ve still got symptoms I class the surgery a success and had started to settle into my new kind of normal lifestyle
I am 46 years old and going back 23 years ago I had a lumbar fusion L4, L5 ,S1 after fracturing my spine. I recovered well from this however suffered with neuropathic pain from the injury.
I had a dorsal column stimulator implanted to help with nerve pain. Unfortunately the device was not MRI compatible so for the last 6 years I’ve not been able to have a lumbar MRI to check my spine. I’d experienced increased lumbar and leg pain more and more but because I’d been recovering from Chiari Decompression I’d hoped as I got stronger and was able to do more this pain would get improve - it didn’t
Six weeks ago I ended up in emergency after losing bowel and bladder control. My Neurosurgeon insisted the device be removed because he needed to get an MRI done. It was removed urgently and a MRI and subsequent extension and flexion X-ray identified instability worse than he had ever seen. Several of my vertebrae were moving 9-12mm which is apparently a significant amount. Spinal Stenosis was noted. It was also reported I have a condition called Juvenille Disc Disorder which I believe is where the discs in my spine are smaller than they should be and consequently don’t do the job they’re meant to creating all kinds of problems as you age. There were problems noted with areas of the thoracic and cervical spine however they were way less of a concern compared to the lumbar region. I was pretty much confined to hospital bed until a fusion could be performed.
The surgery involved removing part of the first fusion, laminectomy’s at several levels plus a few other bits and pieces (tidying up, removing and putting in bone etc…) and ending with fusion and placement of rods from S1 through to L1. It was a massive surgery and afterwards I was transferred to a rehab facility where I learnt to walk properly again, manage my balance issues more confidently and general build up strength
Fast forward just over a month and I’m slowing regaining strength. I have a lot of muscle wastage after spending over 4 weeks predominantly in bed and the muscles and surgical pain are working against each other as each relies on the others strength to repair.
I’ve begun to have quite bad headaches similar to the Chiari ones pre Decompression that would almost bring me to the ground with their intensity. They are as bad as what they were but there’s been a definite gradual increase over the last 4 weeks. In addition I’m having a few problems swallowing which had almost gone after Decompression and which concern me a little bit.
The NS who did my Decompression is based across the other side of the Country and I have my review for spinal surgery with my other NS in a month. So now my question! Does anyone know anything or could they refer me to someone or a website that might discuss spinal surgery post Decompression. I’d like to understand more about why I’ve had this change in headaches and swallowing. I’m assuming it is simply due to the fact I’ve had such huge surgery and there’s maybe been altered ‘whatever’ it is and it will return to normal as my body heals. I’m not one to get bogged down in reading heaps in information about conditions as my memory is very poor and I get myself confused. Plus I strongly believe we can talk ourselves into symptoms we actually didn’t have before reading about them. I would like to find out a bit more info about spinal surgery risks after Decompression surgery.
Sally,
So sorry to hear about your issues. I can’t imagine the frustration and anxiety that must come with your current health issues. Although the dysphagia (problems swallowing) is a symptom of the Chiari, it can also be a side affect of one of your medications, assuming you are on at least one with your issues. Also, I have learned, significant weight gain increases my issues with swallowing. I also have syringomyelia. Heavy duty pain killers can bring back your headaches on too (Yes they can! …although administered to “stop” the head pain).
I just don’t think they were designed for our condition. So, if they do have you on any heavy narcotics, try to ween yourself off of them. Flush with water, flush, flush, flush.,drink! They also bring on much depression and weight gain (things most of us suffer with because of deprived quality of life and inactivity).
Also, get up and move as much as possible. It increases bone density. Even it you just take walks around the house, your yard, etc. move…it will also do wonders for your mind.
My doctor is not comfortable with the amount of Excedrin, Ibuprofin and Tylenol I take. However, I am convinced it is much less harmful than things I could get addicted to.
I am reading again that you have poor memory issues, as I do to. Keep trying to read, read read…and not social media, internet, etc (just brain rot and bad for our depression/anxiety). (good old fashioned hard cover books)
I have receive a sense of accomplishment whenever I finish a book. Might sound silly, but with my life there is not much I can feel accomplished about. Feel free to write or send personal messages to me as well…I tend to be a space hog on here when my thoughts flow and sometimes don’t leaves space for others.
Thanks Catlover72, it’s always good to get reminders of all the things that help to manage the symptoms we might come up against.
Most of the things you’ve suggested I do already drink 2-3 litres of water a day, take regular walks around my yard and/or house to keep the muscles moving and build up those that have weakened from 5 weeks in bed. I’ve got a set of rehab exercises I do 3 times a daily some of them more than that. I’ve ventured outside of the house with someone for small amounts of times but to be honest I’m actually better for now to keep the exercise up around the house or yard as it’s familar territory which for me means reduce chance of falling. In 2 weeks I can start hydrotherapy which will help.
My memory, well that’s just hideous. I read 3 pages of my kindle at a time but I have to read each 3 pages 3 times over in order to even come close to take it in. It’s so frustrating! I’ve the brain training app lumosity to try to hold onto or hopefully improve it and I think I’m worse now than I was a year ago. It’s like there’s a glitch in the system somewhere somehow.
I am on a few medications but as soon as I can reduce I will be. Fortunately I have an amazing GP who is right onto that kind of stuff and if he can reduce or stop one without too many adverse effects (which would normally be pain) then he’s keen to.
I also practise meditation daily which helps me enormously and I maintain a reasonably positive attitude. I can chose to live with this and be miserable or I can choose to be happy. The benefits of being happy far outweigh the other so I try to keep a tune on my mental health.
I am a little concerned about the headaches and trouble swallowing which have definitely been more prominent since lumbar surgery a month ago and whilst it’s probably nothing to be bothered by, I can’t help but have that ounce of fear that it could be Chiari symptoms which have increased as a result of the lumbar surgery. I don’t know enough about spinal surgery following Chiari decompression and of tbere are risk associated. I obviously can’t change it now but then I never could because the fusion was not really optional when I was suffering bowel and bladder incontinence and instability was so bad.
It’s still early days and I’m really hoping the increased Chiari symptoms do settle down again. Fingers crossed
You could get a second opinion online from Weill Cornell Brain and Spine Center. I did so before I finalized my decision to have decompression surgery in 2016. You have to upload MRI images, share symptoms, and pay $300, which I realize is not cheap. It took weeks for me to get the report in response, but it was extremely helpful.
Hi Tricia, I’ve have had Decompression in Oct last year and my recovery was going okay but then I had an emergency 6 level spinal fusion a month ago.
What I’m concerned about is the increased and type of headaches and trouble swallowing both of which had resolved post PF decompression.
I had read somewhere ages ago that spinal surgery after you’ve had a PF Decompression can cause increased intercranial pressure and even cause the brain to slump again. I could have the info wrong as my memory is really bad and different info from different topics gets mixed up.
, thank you.