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Risks of recurring Chiari do to physical labor?

Posted , 7 users are following.

elizabeth15427
elizabeth15427

I had surgery on June 6, 2015 and I'm hoping to return to my cleaning company soon. I have concerns as to if this type of strenuous work can cause my symptoms to reacur or progress my Chiari further.

I was diagnosed in may and in hospital for three weeks prior to surgery. Spent another 4 weeks in hospital post surgery. I had lost the use of my legs 2 days before surgery as my Chiari had progressed so quickly:-( I can't seem to find any information on if physical labor can cause Chiari to progress further and surley do not want to go through surgery again if I can avoid it. HELP!! Elizabeth

0 likes, 26 replies

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  • susanrad
    susanrad elizabeth15427

    Posted

    I would think your Neurologist should know that?

    Good luck to you. I hope you are fixed and good to go!

    Was your detected by MRI or CT Scan? What where some of your symptoms

    • elizabeth15427
      elizabeth15427 susanrad

      Posted

      My surgeon is not a Chiari specialist and has been saying everythings fine since surgery. But doesn't seem to have any answers for me. Also said he didn't think he needed to see me again after my visit last month. Which my doctor finds odd as I had fluid on my brain twice after surgery. He did a great job with surgery but seems to just want to wash his hands of me now. Still recovering.

      My symptoms were what I thought was a pinched nerve in my neck..pain and stuff. Numbness in right arm, hand and leg. Migraines with the pain being localized on back of my head, right side. Had suffered from falling. Lost use of my legs 2 days before surgery. Can walk again now but still battle with control some days.

      I was diagnosed first with a ct scan followed by an MRI. Once they opened me up is when they found the fuid was completely blocked in my brain. On the ct they had found the Chiari and that my top 2 vertebre were crushed due to the pressure.

    • susanrad
      susanrad elizabeth15427

      Posted

      Wow, that is strange that he dismissed you after having water 2 times.

      Does he or your regular doctor recommend either MRI or Ct scan as a follow up soon to see if everything looks ok?

      I've been diagnosed with fibromyalgia, but have chronic nausea and a small Chiari Malformation shows on CT scan. So I'm not sure what to do. They say it should effect me, so mine isn't as clear as your was to see.

      I would definitely want to have yourself monitored some how.

    • elizabeth15427
      elizabeth15427 susanrad

      Posted

      Yes has been a very unsettling and scarey time. :-( Which is why I have concerns about returning to cleaning as I don't want to do anything to make it worse.

      My Chiari Malformation was just under 5 mm and as u can see caused a significant amount of damage. What was your CM at?

      I'm seeing my doctor again today. She is amazing and thank god was the one to make me go to hospital for CT due to symptoms. I am truly thankful for her and have some price of mind that she is there for me. But has been honest that she doesn't know much about CM and had never had a patient with it before me.

    • susanrad
      susanrad elizabeth15427

      Posted

      I'm not sure what the centimeters were. I'm going to request that information. Thank you!

      Since you have a good HP that supports you, I would think she could find out what the recommendations are for follow up regarding monitoring.

    • elizabeth15427
      elizabeth15427 susanrad

      Posted

      Yes I will talk with her today about follow up.

      Please keep me posted on how you are doing and what you centimeters are.

  • Hope255
    Hope255 elizabeth15427

    Posted

    After seeing alot of neurologists and neuro surgeons before and after the decompression. They didn't know much about chiari. But I found experts in Aurora, Coloardo, all they do is chiari. They are even better than Mayo.

    Doing physical activities does not make chiari progress. You might have some limitations. Just wait to do everything you used to do. Get better and find out what you are able to do. As time passes you will be able to do more. I hope this helps.

    • elizabeth15427
      elizabeth15427 Hope255

      Posted

      Thank you Hope255 this is very helpful and encouraging :-) I am still recovering and will wait to go back to cleaning. But will definitely give it a try and see how it goes! Thank you again!!
  • nihilo
    nihilo elizabeth15427

    Posted

    Hi.

    I was discharged from neurosurgery also after being told there was fluid on the brain. The surgeon told me that this fluid can reabsorb on it's own and that they don't do anything with it unless it is problematic down the line. So 2 years after surgery I am going back to see the surgeon as the fluid is still there in my case. Personally, this fluid creates more of a barrier to me returning to certain activities but it has had to be there for this long before anyone has said that maybe something should be done.

    There is a good chance the surgeon will say do nothing, as I am told that the usual treatment for this fluid is to simply observe it. This fluid can stay there forever as long as it is considered safe by a NS, so do not worry that it will mean more surgery.

    As for your job, each patient is different but as a general rule listen to your body. It's an annoying phrase but true! If you can do backflips without feeling worse, then it is ok to do backflips. Alternatively, if walking slow makes you feel worse, then it is not ok to do this yet. Don't make assumptions like "if i'm ok to do backflips then surely walking slowly should be ok too" as i have found it varies massively!

    Myself I avoid any movement that requires any burst of effort. I was a personal trainer and taught Parkour before I got ill so I was lucky to have alot of strength after surgery. For me, I am ok lifting and moving heavy objects as I can do this slowly and carefully, even though lifting is something we are told to avoid. Alternatively,I cannot shake a tiny bottle of juice due to the pain I get from the sudden movement. I can do any activity that I can do carefully and in "slow motion" whilst still struggling with some easy day to day tasks. 

    My knowledge as a personal trainer has allowed me to modify alot of the things I do appropriately so that I can avoid pain etc. I would be happy to help anybody do the same if there are particular movements that you find difficult?

    For now I would work on the basics, like neck mobility. Did you see a physio at any point after surgery and if so did you get any benefit?

    Do not worry though. it has not been long since your surgery there is alot of time left for further improvement. Most people find that they can return to activities, as long as you modify them appropriately to protect yourself. For you this may mean simple changes such as the way you lift/move a vacuum cleaner, or just your neck and body positioning whilst crouching or leaning. It will take patience, but as long as you want to return to certain activities you will find ways to.

    Please do not hesitate to make good use of this site and ask for help, we all know what it is like to deal with a condition that so few know about so we are good at offering each other support where possible.

     

    • Hope255
      Hope255 nihilo

      Posted

      Hi

      After 5 months of my decompression, my NS dischaged me after I advised him that I was still having problems plus nausea, vomiting without notice, bad taste in my mouth , nothing tasted good, which caused me to loss 60 lbs. The NS said that I needed to see another doctor as he had done all he could do. Saw all different kinds of doctors but they didn't know what was causing what I was going through. After 3 years of this I finally was told that I had lickage of the celabrial spinal fluid (CSF). Had a blood patch and all the symptoms were gone.

      Even 6 years later, still working on getting my life together. And you are right, one does need to make modifications on how we do things. Just need time to heal.

    • susanrad
      susanrad Hope255

      Posted

      Hi Hope255,

      I read your last post.  So it was the leakage that was creating you nausea?

      I've been diagnosed with Fibromyalgia, but have chronic nause (3.5 years) and have a "small" Chiari Malformation that Kaiser said shouldn't be causing problems.  I am thinking, they may be missing something? 

      As soon as I wake up, I get the nausea wave and it comes and goes all day, somedays I have dry heaves in the am if I push myself to do anything.  I also most always feel a bruise type feeling in the lower back part of my head.  Especially if I step down off of a curbe and jar it a bit.  Does any of that sound familiar? Thanks in advance smile  TGIF

    • Hope255
      Hope255 susanrad

      Posted

      Hi susanrad,

      I guess that the fluid that is in your brain is the same fluid that was kicking out of me. The vomiting stopped but I still get nauseated. Does it wake you up, do you get nauseated when you are in a car?

      I was misdiagnosedan with fibromyalgia.. Took the meds and treatments, the pain was worst. Got 2nd opinion, did not have fibrom.

      Do you get dizzy when you do some things?

      Hope to hear from you again.

    • susanrad
      susanrad Hope255

      Posted

      That is very interesting that you were diagnosed with Fibromyalgia as well. Yes, I do get dizzy. My hands and arms are numb, I get ringing in my ears, hard time thinking/concentrating, fatigue/fog, bruise feeling in my head, over 1 year ago I started feeling limited when turning my head side to side.

      So, today, I changed doctors to an internal medicine from a family practitioner (who the Rheumatologist sent me back to that I did not like). I see him Monday and will request to have a MRI for head and upper portion of the spine. So I am hopeful having someone new will be a positive.

      Thank you again for the support.

      Susan

    • Hope255
      Hope255 susanrad

      Posted

      To tell you the truth I think since we are in too much pain doctors don't understand the pain that we are in with the chiari. My internal medicine doctor was the one to tell me that I had chiari after seeing her for 7years. When I asked her what it was, she stated that my right side of my brain had fallen. So all the time I kept saying my brain had fallen, it was't until I saw the second NS that explained it to me.

      I also get dizzy when I look up, turn my head to the right, band over then I get this pressure in my head like I 'm going to pass out. About 6 months ago I started getting a new pain, almost where the cut on my head-neck I get like a muscle spasm and as the pain get harder it travels to right side of my head.

      I also have difficulty thinking and short memory loss, having problems speaking.

      Good luck with the new doc. Hope he can help you. I sure would like to know how it goes.

      Have a happy Halloween!

    • susanrad
      susanrad Hope255

      Posted

      Good morning,

      I will definitely check in after my visit with him on Monday, but he will be ordering the MRI after that appointment at my request.

      I also have difficulty thinking and short memory loss, having problems speaking.

      Thank you for all of your kindness.

      Happy Halloween 🎃

      Susan

    • elizabeth15427
      elizabeth15427 nihilo

      Posted

      Thank you!! I am soooo glad I joined this site. Very helpful and I no longer feel so alone!
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