Help me!

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi, I am a 31 year old female just diagnosed with CM and I have severe headaches and off balance ringing in the ears etc but I decided not to go with the surgery because its a 50/50 chance and with my body it always acts up with surgeries so My Question is there anyone out there living with chiari Malformation who didn't get the surgery? And if so how are you maintaining without it?

0 likes, 8 replies

Report

8 Replies

  • Posted

    Hi,

    You can have a Chiari Malformation and not have problems. If you become symptomatic is when the problems begin. Chiari damages your nervous system. I had the surgery and it has been a downhill spiral. I would contact a neurosurgeon if you haven't already and discuss your situation. Neurologists don't typically know as much as the neurosurgeon. Probably not much help but either way you can have problems.

    Report
  • Posted

    Hi crystal26235

    It seems that CM can mean different things to different people and how it impacts them.

    I too am newly diagnosed, and am I'm process of scheduling decompression surgery with NS for August

    For me there appeared to no alternative treatment that will give an opportunity to improve headaches, and possibly my associated chronic fatigue & cognitive problems.

    As sole income provider, I have looked at options and appears my best chance of getting back to where I was, otherwise I will probably lose my job.

    Your decision is based on you and how you feel and especially how much your symptoms impact your life.

    Unfortunately there are people who have negative reaction to surgery as well.

    Get best advice possible is my suggestion. If you can cope, perhaps no surgery is right course for you.

    Report
  • Posted

    HI Crystal,

    You have both right answer there, in my opinion it is depend on your condition and how you put up with it, just like you over 3.5 yrs ago I waas diagnosed by it, but I resisted not to have surgery because i was scared what was the result was, I was the main income provider - I was earning up to £84.000 per annum, but it was my own unrationale decission for not having surgery because after 2  yrs put up with it, I ended up blacking out frequently and damaging my nerve and anything the connect to CSF...I was houseboundI was lucky, the pain was excruciated, I could not manage with my pain so I decided taking the advise of my health care porfessional, but I got up to 2nd opinion - I was lucky enough to get the one of the best , if you are in the UK contact Ann Conroy Trust, but if you are in the US contact Mayo Clinic... by that time it was too late, I think I damaged my condition so much..the operation was successful, I am free drugs now, no more excruating headache, my balance working well, no dizzyness, is just my back killing me on and off, but after having checked they said they have nothing to do with CM..I can say now ; HOW GLAD I am taking that decision..I have to resign from my job as I said I think I decided too late hence had damaging a part of  my nerves ( I think)..so I have to resign from my job...but I trully suggest  any one who is suffering like me, not to delay and have decompression..MAKE SURE TO GET THE BEST NEURO SURGEON

    Report
    • Posted

      Appreciate your opinion as a person who has experience of the condition and the operation.

      Gives me confidence in my decision

      Report
    • Posted

      Hi there,

      Just make sure you have got the right NS...mine did not even put dura after ..he said more complicated.

      Let us know ..Good Luck what ever you decide

      Report
    • Posted

      My NS also suggested may not put duration in. Apparently he used to, but less likely to do now based on his experience.

      And yes, this NS is on Ann Conroy (for UK) website as one of beat to go to in this region.

      I am not sure if it is recommended by other surgeons or not.

      Anyone with recent decompression experience do please add any personal experience on this issue would be most welcome. Am due to see him again in a few days

      Report
    • Posted

      Hi Stabble , sorry delaying my respond, .. i think you need to speak to your GP, who do you have in mind (NS) walton and QE Birmingham are really great mostly Mr Flint...if you can get it..that is great..but I feel I have done the best decision by having it done..I do not think I can survive other wise..so let us know how you are getting on
      Report
  • Posted

    Hello crystal, I have bee living with CM without surgery. When 1st diagnosed I was 5mm then several years later 1.4cm. My last MRI this year I am at 8mm. I have been working on self-healing and was pleasantly surprised at the shrinkage. I was using a walker when I 1st had major symptoms having been placed in lumbar traction each night with 40 lbs. of weight pulling on my spine for 3 bulging lumbar discs. I was working 3 jobs and at the end of 6 months, I could not work any of them. I would not have been placed in traction if the radiologist had stated in my MRI report that I had ACM. I have other spinal problems too. I paid out of pocket to be evaluated at The Chiari Institute on Long Island, NY after getting no answers from my doctors. I was diagnosed when MRIs 1st became available.

    I have been doing so much better over the years but cannot do a lot of what I use to be able to do. Some from the CM and the rest due to my other spinal problems. I am 62 yrs. old and have been 100% disabled since I was 47 yo..  

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up