living with Chiari

[littleone3611]

How can I help my parents understand that there is no cure for Chiari and that surgery is only for preventing paralysis. When I found out I had Chiari and had to have surgery I did a lot of research on it and printed some of it so that they could understand what I am going through. Also I took my mother along with me to all my neurosurgeon appointments. It has been 3 1/2 mnths since I had surgery and now I am having a lot of neck and shoulder pain as well as hip and leg pain I had before surgery. Every day my father asks me the same question of how are you feeling today and every day I tell him that I'm in pain. I know that it can take up to 2 yrs for the pain to subside and I told him that but he just doesn't get it. Also has anyone gone to a pain doctor to help treat post op pain and if so did it help? What did they do to help? One more thing, should I avoid hot tubs? Thanks again for all the help!

[selmaS]

Well since u know u have a syrinx, depending on its size....it may not have shrunk yet....and that is the hopes with decompression surgery that the syrinx will shrink...and it may take time...it took time to fill too.....

  We all live in a world that expects instant everything, relief from pain does not come from surgery or even meds....it all takes time.

  Keep us posted....

BTW- try keeping a journal,  u will be amazed at the diff u see in urself from month to month!!

   "selma"

[littleone3611]

Thank you Selma! Once again you have been very helpful!!!  Unfortunately I do have a syrinx and it goes from my cervical spine into my thoracic spine. I don't think I was tested for Ehlers-Danlos or tethered cord. I just got down with PT and my surgeon wants me to have more but my insurance only allows 20 visits. I did join a gym so I use the pool and walk. I am getting an mri over the summer so I guess then I will see if the surgery helped.

[selmaS]

  Hi...On the 28th of this month I will celebrate my 2 yr zipperversary...and I still have pains....
once u have chiari u will always have chiari...but surgery can help slow progression and possibly prevent the formation of a syrinx which could cause perm nerve damage.

But, many of us do have other related issues going on as well...so I have to ask...were u tested for Ehlers-Danlos, tethered cord?...these r chiari related and will cause pain, just as a bulging disk can...so do make sure u know if u have ruled these things out...and know y u have pain,.


  U can have ur parents join the forum here...there r many of us here that would be happy to explain just how we feel post op : )
And, I don't know what u r doing at 3 1/2 months post op, but u r really just getting into getting pain from healing.....
U r in the early stages of recovery and pain as u heal is typical....and what u r doing will affect it...so do go slow...rest.

I would check into issues related to chiari like POTS...to see if u would want to avoid hot tubs.....

  "selma"