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!

[andi67485]

I have about a million questions. But right now my main concern is my son. He has played tuba since 4th grade and is now a senior in high school. He plans on going to college for tuba performance and his NS says that should be fine. But my NS who specializes in Chiari says no. I'm scared because he plans to continue playing once he is healed from his surgery. I'm afraid that he could hurt himself somehow.

[selmaS]

  Hi and welcome to the Chiari forum,

First- Chiari is not rare, just not well known, but Drs well experienced with it are rare.

What questions do u have?

I agree , it is helpful to know we r not alone in this, and for as many of us that there are if only half were Drs, then we would get the proper care we need and deserve.

[andi67485]

Hi everybody. I am new to this wonderful world of Chiari even though I have been unknowingly dealing with it my entire life. In May 2013, after years of symptoms I had decompression and craniocervical fusion surgery done. I am still experiencing some symptoms and probably will for the rest of my life. My 17 year old son was also having symptoms so I insisted on an mri of his brain and spine. He too has Chiari and a syrinx and just underwent posterior fossa decompression 3 weeks ago. This has all been very scary. There seems to be nobody to turn to who has ALL the answers as this is a rare and poorly researched condition. My NS seems to have a pretty good handle on it, but he is hours away from me and it's not always easy to get answers. I'm hoping this site will be helpful to me and my son. We are both still reeling from this. It's good to know there are others out there who understand.

[linnielou232]

It is complicated having Chari.  As I have learned since I just celebrated my 2nd ann. from 4th surgery having Chari is hard for some of us to recovery.  It is a fight, but a fight worth fighting.  Some of us heal well.  As I tell people, if I only had the 1 surgery I would be a lot better off, but that is not what life gave me.  As Selma reminded me through my recovery that patient's with ourselves is a must.  If you like to read I recommend a book called "Conquering Chari".  I also have another book which holds a lot of factural information in it called: ConQuer Chairi, information on Chairi malformation.  This life altering issue of Chari is hard for all of us to understand, and I also want to know Why?  but getting to the excepting of our life changes are important and it took me a long time to except this.  Just do what you can do and except the things we can not change.  You are still healing so patience is the key.  Thinking of you and hope the book info will be helpful.  I enjoyed the read and helped me understand it is O.K. to have our bad days, and appreciate the good.
Linda :)

[Viva001]

My NS is considered a Chiari expert, and he has expressed to me what he does not know, but wishes he did.  The information about this condition is still in its infancy (or fetalhood, or something like that, Selma said, lol).  
They really don't know why some recover well, some get some life back, and some decline.  
I think my NS would say that that cervical degenerative disc disease causes numbness elsewhere.  He asks a LOT of questions about the lower body.

I like (ok, demand) answers too--have a science background--but there isn't anything conclusive yet.  My NS gave me his outcomes on nearly 300 patients, which is extremely informative, but he does "not like to write".

Im only 3 mo post op, and I can say that there has been improvement across the board.  If I can see, tolerate pain, & not vomit, I can ignore everything else.  Actually, Im forgetting how many symptoms I had......

[jmr76]

Do the symptoms persist? Have you ever been checked for a tethered spinal cord? Those can often be seen together but only one gets noticed so some of the symptoms continue.

I, too, say do research EDS. Symptoms can be very mild and deceiving!

I hope all is well