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Syrinx-Mayo

My pain specialist is giving me a referral to Mayo in Rogester, MN for a idiopathic thoracic syrinx.  Has anyone gone there for a syrinx, and if so, what did you think of the care you received?  

Thanks!!

Puppiesrcute
6 Responses
620923 tn?1452915648

  Hi and welcome to the Spinal Cord C/D forum.

May I ask what testing was done to rule out the possible cause of ur syrinx?....Stating it is idopathic means it has no known cause, just wondering what testing was exhausted to come to that DX.
Avatar universal
I have had both a head and spinal mri with contrast.  No Chari or tumor have been found by the radiologist, neurologist or neurosurgeon.  
620923 tn?1452915648

  The reason I asked and I am sure u know since u mentioned Chiari is that many times it is over looked as an incidental finding or it does not meet criteria the Drs  use to classify it as Chiari....most of that data is out dated and it is possible to have it even tho they do not DX u with it...

  To have a syrinx in the thoracic area the most protected area is diff from an injury.....so there must be a reason....JMHO.

  I know a few that had both Chiari and a syrinx that went to Mayo....I do not recall who they saw tho.....

I wish U the best keep us posted as to how it works out for u.
Avatar universal
It's been a week ago today since my pain specialist gave me a referral to Mayo but haven't heard yet to whether I have been accepted.  I am getting a little impatient but maybe that's the norm since my case isn't a matter of life or death.  I keep telling myself I'll be accepted if it's God's will and in his own time.  

Thanks!

Puppiesrcute
620923 tn?1452915648

  It is one thing all of us with a medical issue learns is patience as we do a lot of hurry up and waiting....lol...

From my own Drs receptionist I was told they review all cases and contact those with the most dire issues first and to expect a 4 to 6 week wait b4 I would get a call and many appointments are another 4 to 6 weeks out....

Over the yrs I have developed patience and take it in stride....not so easy when u r trying to find out what is going on and in pain....

Time takes care of everything....lol.

Good Luck
Avatar universal
I have heard the same thing, that they take the dire cases first, and I can definitely understand that.  

I can relate to the hurry up and wait.  It's wait 2 or three months for this appointment then maybe another three months for another, and so on and so forth.  Been at this for one year and seven months now.  I know some people have been waiting for help much longer.  

My sister was referred to Mayo several years ago and she was told it would be a year before they could get her in.  Thankfully she was able to get into the Iowa City Hospital for tests because they discovered she had cancer.  A year wait for Mayo might have been too long of a wait.

My neighbor's daughter was able to get in the next day after her referral.  I have a friend that only had to wait a few weeks.  I'm sure my case won't be considered as anything serious and will take some time before I get in, that is if I am accepted.  

I'm really trying to be patient.  As you said, it's tough to be when you are in pain and life is kind of at a stand still.  This has sidelined me to the point where I can't work and pretty much only go out to take my kids to school or to doctors appointments.  I'm not any fun for my family anymore as far as having the ability to do anything fun.  Miss the family outings and traveling to see family.  Oh well.  Such is life.  So many people are much worse off than I am.  I am really blessed in many other ways.  God has been good to me.  

Good to hear from you!  Take care!

Puppiesrcute  
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