Chiari Malformation Community
After care
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After care

Good morning, I am just curious about the care you have received after decompression surgery.  My decompression surgery was Nov. 5th, so I am about 5 months post op.  I am fortunate that my diagnosis was very quick, and after my family dr. ordered my MRI, I was sent straight to a NS.  As far as I know, I do not have any other issues.   I saw a regular NL once to confirm the Chiari, but I didn't like him at all.  I guess I am feeling like my NS isn't listening to me.  I am still pretty dizzy on a regular basis, and still sore.  I have been doing the exercises and they help, but I am still sore.  I do think in reading a lot of posts here, my case is not anything like what some of you have gone through.   He is chalking up my dizziness and general not feeling right to emotional stresses going on in my life.  Which may be the case, I don't know?  My father is about to have a heart transplant, and I have other family issues that are very difficult.  I work 4 days a week, but it is difficult by the end of the week.  I walk occasionally and bike ride occasionally fine.  

I guess my question is this, who are you seeing for your care after decompression surgery?  I am seeing my surgeon, but that is it.  I just saw him and don't go back for another 6 months.  He doesn't feel it is necessary for a follow up MRI, but I think that sounds crazy.  Thoughts?

Thank you! :)
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620923_tn?1413427272

Hi I had about 3 post op visits with my NS....the one yr visit I did have a MRI....some have an MRI sooner if they r having issues...it is up to the NS.....not all do the same follow ups...some do more but again it depends on u and how u r doing as to how many u may have

Is ur NS a true Chiari specialist?

Many times it can be what u r doing, as u r still healing...bike riding can be too much at this point since u r having issues....just working 4 days may be causing it depending on what u do at work....then u have stress it all can be the reason u feel as u do....as I said u r still healing.

Where do u feel sore?
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Thank you, I do not think my NS is a true Chiari specialist.  Since we have "talked" last, I really do not ride my bike very often/or a lot.  Maybe just once around the block with my girls.  I mentioned this to my dr. and he didn't really say anything.  I am listening to my body, at least trying to.  Maybe you are right, 4 days may still be too much for work.  Maybe I am just really refusing to believe that things have changed.  I don't know.....I am a teacher, so I take off every Wed. to rest.  HOnestly by Friday it is  a lot.  Some weeks it is better than others.  I guess I just wanted to know what was "normal" for who to see after for care, and was an MRI necessary.  I know I am not suffering NEAR as bad a lot of people on this site.  I never had any leaking, or anything major after surgery.

I am mostly sore along my neck and into the bottom of my skull.  My dr. did some pushing around and said everything feels very normal back there and he is not worried.  

I do notice my dizziness is worse the day after I am stressed about something.   Ohhhhh Chiari!! Gotta love it?!
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By the way, the neck exercises you recommended really have made a big difference for me!!!  Thank you! :)
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After my surgery I continued to have issues and was sent a NL and also a pain specialist. Having a chiari specialist is huge but from my experience he NS don't continue with your care. Whoever you go to next make sure they understand your condition as it will always be there. I work in the schools and know how much work you do during the day. Hang in there!
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620923_tn?1413427272

  I am glad to hear the neck exercises are helping.....recovery can take some time and I really feel that many Drs under estimate how long it may take,,,,

Luckily we r coming to the  close of this school yr soon....and u can get a break this summer.

Yeah Chiari can throw some curve balls we do not expect....

Hang in there : )
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Thank you both for your responses.  cash242, that is what I was thinking about the NS, and expected to be referred, but not yet.  Maybe he will next time.  

Yes, summer is coming and don't think that isn't in my mind!!! :)

Thanks again, ladies. :)
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