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Symptoms coming back full force

Posted , 5 users are following.

carolali
carolali

Well I had a good 3 year run since my decompresion surgery and now most symtons are coming back.  I'm starting to walk into walls (broke my toes) on my right side, gaggying at night if I fall asleep on my back, very dizzy, nauses, migraines, etc.  Has anyone experenced this situraction and if so does your neurosurgeon take you seriously?  I'm going to see him after I have MRI again.  I'm just afraid he will say it looks fine. I know deep down I'm heading to many disabilities and I don't want to stop working.  Thank you all for your time and wish everyone better health smile

-Carol

0 likes, 8 replies

8 Replies

  • diana99730
    diana99730 carolali

    Posted

    I am very sorry to hear that I had mine done on July 10 so hearing that is very scary did they open your durum? I don't know a lot about the surgery but do know there are different procedures I hope they can help you that is one surgery I never want to do again good luck to you would be interested in what they say 

    Diana

    • carolali
      carolali diana99730

      Posted

      Hi Diana,

      You know good question about what they did exactly but I will ask when I see the NS next week. I hope you have a quick recovery, I did and was back to work in 4 weeks.  I had a great 3 years of not walking on the moon walk! LOL It will take a year to get your full strength back but It's worth in..you will see & hopefully yours will last.

      Feel good, Carol 

    • diana99730
      diana99730 carolali

      Posted

      Wow that was a quick return to work I am in USA I am not even scheduled to see my NS until 6 weeks after except I had staples out I am still feeling very weak walking 1 to 2 miles a day to build up strength 

      Good luck

  • b2wc97455
    b2wc97455 carolali

    Posted

    Hi Carolali,

    May god bless and give you strenght, are you in the UK..if you are you could ask to be referred to Mr Flint of QE Birmingham hospital as second opinion you have the right to do so. My NS told me that lots of chiari patients who recovered after a few weeks they just tried to live like a normal life instead of waiting for a while to get them back on her feet (9 months) hence what happened they got their symptom back in a later years, however..some just unlucky enough to have this back again..but not to worry ..get the best NS get 2nd opinion..then I am sure you will be OK...because experienced NS know what to do..in the meantime..try to get as much help as you can from your health care professionals, families and friends...I wish I can help you more..but do not be despair..it will pass..just be firm to your health care professional to treat you..or else you could report this to PALS/NHS to complain..but take it easy now..do not force yourself ..listen to your body..drink plenty of liquid.. stop working..if you have a friend who has a vine tree, get the young leaves..cook it (stir fry) have it each day...after 2 months you can see the difference..if you are in the UK I can post it to you..as I have got plenty from my friends I froze it..I ll be happy to help you..as I know how terrible it was for me..I am pain and drug free now..because I listen to my NS..I resigned from work..I am slowly going to provide deep tissue massage and reflexology for people suffering from chiari and fibromyalgya...so..if you can afford to get reflexology..that is also help..I have been so bad and made me house bound for almost 18 months...I could not walk..but after several massages and reflexoloy treatment and keep taking magnesium and that vine leaves..I started to walk..even though struggling, but ..after decopression..everything back to normal...

    • carolali
      carolali b2wc97455

      Posted

      Hi there!  Thank you so much for your kind words smile  First I have to say, anyone touching me in a massage type of way, would cause me to black out; it's almost like they're stiring up the flow of brain fluid and causing more symtoms. ??  I am in the USA however, I will look into getting the vine tree leaves, is it a regular vine tree of a specific one?  I have vines all over my wall outside...LOL.

      Anyway, I have MRI Thursday and NS, who did my surgery, next week.  Boy I hope he has answers and If not, I will get other opinions.  Feel good and thank you! Carol

    • b2wc97455
      b2wc97455 carolali

      Posted

      perhaps while waiting for any surgery - you like to ask your Neurologist to perform Lumber Puncture for you, you are the same as me,we have higher pressure more than 22..hence you feel like what you are feeling..but lumber puncture can help to reduce the pressure. Let us know how you are getting on
  • yeltzer
    yeltzer carolali

    Posted

    carolali. Had my decompression back in 2008 and as in another post  my symptoms came back. I recently had another MRI under the said Mr Flint who stated that he was happy with the result. However on a letter from him to my nuerologist he stated that about 20% of his patients reported symptoms after decompression.It is generally considered that here is no cure for Chiari only relief of symptoms.
  • Linleel
    Linleel carolali

    Posted

    I had my surgery June 2016. Did OK for a year and then symptoms coming back- NS found that I have a cyst on my recent MRI. But said they wouldn't do anything because my decompression surgery was "successful" and they are "done" with me. I then went to my GP and then to my Neurologist, who immediately ordered another MRI and a Cisterno. Had the MRI M and Cisterno next M. Getting more and more dizzy and unbalanced and walk like a drunk person plus exhausted. I don't think my NS is a good doctor since they turned me away and I'm totally going to report them after I get feedback from Neurologist as to my situation and treatment. Was doing so well a month ago- went on vacation to London, went walking around London everywhere (June 8-16th). But then by July 4th, I was feeling bad and starting to get clutsy again. Now I've been banned from driving. frown  

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