Symptoms after decompression

[champ40]

Does anyone know of a good article or place to gather information of why we can still experience symptoms after decompression surgery?  I would love a good physiological explanation on that because it doesn't really make sense to me.  In my particular case, I had no syrinx, my csf flow is restored and I feel great most days.  Then periodically the numbness that I had before surgery returns. I know there is not necessarily a rhyme or reason to chiari but I would love a good explanation of this, if anyone has come across one.  Thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

U said the brain is sagging...did they happen to call it cerebral ptosis? If so this could be that too much of C1 and C2 were removed....and  another surgery to put in a sling, possibly made of titanium mesh or a plate can help with some of the issues.

As for the fusion, how much needs to be fused will cause how much of an effect it will have on her life...my friend had a fusion and still drives and does  a lot with her 3 boys....

Are these Drs true Chiari specialists?

[casandra7777]

Hi am new to this forum.  My daughter, now aged 22, has a very complicated Chiari + Skull base malformation -- with a basilar invagination (brain stem compression) and craniocervical instability.  She was decompressed for Chiari (not brainstem) in 2006 when she was 12.  She has had ten years of worsening symptoms since the compression but a few years relief of symptoms right after decompression.  She underwent a C6-7 disc repair last Spring when we learned that her midbrain had bent and the brain was now sagging into the junction at her spine along with pressure and slight cracks in the other C3-C7 vertabra.  We've seen nine NS's at top hospitals.  We are now faced with the decision to remove C2 (C1 is already gone) and do the fusion surgery where she will lose mobility in her neck.  My daughter has been in severe pain her entire life and wants some relief.  The NS has left the decision to do this surgery up to her/us but cautioned that it would be life changing -- has anyone been through this procedure and if so, could you share some light on limitations, quality of life and improvement of symptoms post op?  We are truly wrestling with a very difficult decision and want to have insights from others who have been down this path.

[andi67485]

Yes. I agree. Thanks for your input!

[selmaS]

He may want to work on playing a lighter instrument just in case...clarinet...or other woodwind or brass instrument...I know it is not the same, but it is music and something he can do while he heals....just a thought.

[andi67485]

Sure. My NS doesn't take his insurance,but his NS specializes in pediatrics and has a lot of experience and a good track record. And yes. He needs to slow down a bit and wait to heal up b4 playing. He sits his tuba on a tuba stand while he plays so the weight isn't a big issue. He was in marching band in the fall but had to drop out because of his symptoms and dr's recommendation. As far as playing the tuba I guess that time will tell like you said.

[selmaS]

  It is really a wait and see how he does and not to push to get back to things too soon as that can cause set backs....we are all different....so he may have no issues going back to playing....

But a tuba is not a lightweight instrument and a lot of pressure may be on his shoulders...so I would tell him to wait a good long time b4 he tries to go back to playing as it can take up to 2 yrs for nerves to heal...while the incision may look fine, we continue to heal inside too...so, it should be a slow  pace.....and he needs to listen to his body, if he tries and it hurts, then he has to wait longer b4 the next attempt.

May I ask y u have different NS's?