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4760166 tn?1398357313

New syrinx AFTER decompression. Has anyone had this happen?

Hey guys.  So I have not had a follow up MRI since my first decompression in December of 2013.  Shame on me for not asking for one.  Got sterile meningitis / hydrocephalus / was shunted.  Since then I've noticed a marked weakness in my arms and hands, with numbness and almost complete loss of temperature sensation in my hands.  I have also had to bear down to urinate -- sometimes so intensely that it feels like I might pass out.  Haha.   (TMI?!) and I've read that bladder and bowel issues can be caused by a syrinx?

Anyway.  Worsening headaches, choking, hoarseness and weakness in my arms forced me into seeing my neurosurgeon, and he redid my decompression the very next day.  The questions I have for him so far are:

Why didn't I have a follow up MRI?
What can cause a syrinx to develop AFTER decompression surgery?
Should I have an MRI of my entire spine?  Is it possible that I have MORE?
When can I expect my headaches to stop? might they not?
Will I regain strength in my hands / arms? should I be in PT?

Can anyone think of anything else I should ask?
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620923 tn?1452915648
COMMUNITY LEADER

  If they drew the fluids too fast on the LP it may not have done you any good.....not sure if it caused them to re herniate since most times they are not retracted completely post op...and remain herniated a little....

But it is possible to have pulled them down.

My concern is if you have EDS and the tubing is something your body is trying to reject and causing issues....many with EDS will have issues with foreign matter and why it is so important to know pre op.
Helpful - 0
4760166 tn?1398357313
My shunt was placed after my first surgery.  It has been an absolute nightmare.  On the first shunt I think I had 3 revisions? then the whole thing replaced September third .. and two revisions so far with this one. My abdomen is not a fan of this tubing.   After one of my surgeries I saw a urologist in the hospital and he gave me his card to make an appointment.  I'm SCARED of that testing. It looks really invasive and painful, but probably no more painful than a foley going in while awake ... I know it's something I should do.  What is the treatment for neurogenic bladder?  I just always thought I had a "shy" bladder.  But it's gotten much worse over the years and the bearing down has gotten INTENSE.

I don't THINK he used a patch ... I think he just removed what little was left of my cerebral tonsils.  But I will ask.  I see him tomorrow and get my stitches out.  I'm actually taking a tangible list of questions.  I always forget things.

oh, another thing ... in September I was in the ER (actually transferred to the hospital from an urgent care) I was transferred SPECIFICALLY to a hospital that had interventional radiology for an LP with fluoroscopy.   Instead two doctors tried to give me LPs bedside.  Both tried about 5 times (my mom saw, I didn't know they tried more than once, since all I felt was the lidocaine sticks)  ...... Is it possible that these botched lumbar punctures caused me to re herniate?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  I would ask if you got a dura patch and what type it is....and was EDS ruled out.

When was the shunt placed during your first or second surgery?

Bladder issues can be due to other issues....and a urodynaics testing to check your bladder mine is a neurogenic bladder....have you had this testing?

What type of patch was used during the 2nd surgery?
Helpful - 0
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