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!

[irislita]

Hi.how far away post op are you.if u r ovef 6months doctors might do further testings for cranio cervical issues for example.i dont know a place for post op issues sorry.

[champ40]

I'm 7 months post op.  I have  cervical degenerative discs as well, but that wouldn't cause numbness in my leg or foot.  I had an MRI at 5 months post op and everything looked great.  

[irislita]

I just had a flexion xray...and am awaiting the result now and craniocervical instability can cause issues like that.but as always said decompression is not a cure...and symptoms do cycle.

[selmaS]

  Hi...well as Iris is getting at, there can be post op issues that  u may be dealing with that could be chiari related and then again my not be.

Did u rule out Ehlers-danlos b4 surgery? A syrinx in the thoracic and lumbar spine?

And do u know if u have ne other disk issues? here is a link to a chart that shows what numbness u may have from diff levels of the spine.

http://www.medhelp.org/user_photos/show/229729?personal_page_id=197028&photo_collection_id=20895

And then lastly if all the above was checked and ruled out, chiari regardless  of having surgery can continue to cause symptoms, surgery is not done to eliminate symptoms, but to restore CSF flow and slow progression. Also many times we can experience perm nerve damage as a result of how long the nerves were compressed.

SO how long prior to surgery u actually had symptoms....I know I had them mostly all my life...so, surgery is not going to make them all go away.

AS I said it all depends on what else u may have going on, and how long u had the symptoms.

Most web sites do explain this, as for docs not sure what u want or need?

[champ40]

No syrinx, no other disc issues other than cervical spine, no symptoms of ED.  After surgery, the  majority of my symptoms went away.  I just have occaisional numbness on my left side, which is similar to the same pattern as it was before surgery.  So I guess my question/comment is this...our nerves continue to be a little freaky because of the pressure that was put on them for so long?  I guess that 's what confuses me...and I guess it's just going to be living with chiari post op?  Seems like if nerves are permanently damaged, they'd always cause the feeling of numbness, not come and go...but I'm learning that may not be the case...is that right?

[selmaS]

  It is possible that depending on ur daily activity u can have swelling or inflammation that may affect that nerve that is causing the numbness.

So say u went for a walk longer then normal and it caused some inflammation, it may just be enuff u do not notice but enuff that if affects the nerve???

Chiari symptoms do cycle, and I am not sure y, except this theory may hold true pre op as well as post op for the inflammation.

If it was more steady/regular of an issue I would lean toward nerve damage, the fact it comes and goes I  would think more inflammation affecting a touchy nerve.

[champ40]

Thanks for the feedback, I do notice it's exacerbated when I exercise...Monday I did a workout and I've had numbness on my left side since Tuesday...;.your theory would be supported by that!  :)  My surgeon had mentioned to me at 5 months post op that I have residual fluid in my medulla that was most likely caused by the pressure in there for so long and that might be the cause of some numbess...not sure.  

[selmaS]

  Well I base my theory on the CINE MRI they do to watch for the tonsils to pulsate with the BP, this happens with out activity, and then when u add more activity it increases the amount of fluid that is trying to move thru a small area and this is y we have symptoms, even tho with decompression surgery they made more room, it is still going to take time for our bodies to adjust to this change and handle that pressure.

I know that we r also prone to auto immune disorders, some can involve inflammation, even RA is listed on chiari symptoms....

Chiari just gets a hold of us and will not let go, huh?

[champ40]

Yes, they checked me for Autoimmune disorders early on...one of the many needle pricks I had...just like everybody else on this journey!

I really can't complain about my results.  I count my blessings to be doing as well as I am...I'm just a very black and white thinker and like to know how and why things are the way they are.  I have come to the conclusion that there are things that just can't be explained with chiari and that many doctor's don't even know.  Our bodies are so amazingly complex!!

[selmaS]

  I agree with u completely on that, that Drs do not know and our bodies r complex....a friend of mine is a Dr and he always would say they do not say Practicing  Drs for nothing, they r figuring it out as they go many times....

This is y I do not understand y more r not willing to listen more to the patient,....sigh

[cash242]

I am 1 and a half years post decompression and have nerve pain everyday. Some days it is more than others depends on what I do. I do take neurotin which has helped so much. I don't know why we have it but we do and I have had to realize that chiari is with me for the long haul but am so much better than before surgery. Hope this helps and wish u well.

[alimcat]

Yeah no kidding, makes ya kinda wonder. Why put ourselves through such a risky surgery, unless it was at a point of being life threatening. I do not, but you have sparked my interest.

[crystalchiari]

As for the inflammation, how do you get checked for auto immune disorders? Do you get inflamed? Is it okay to just take steroids every time you get inflamed?

[selmaS]

  Steroids r not a good long term remedy....and u should find out the cause, using steroids is a temp relief at best.

There is no one test for auto immune issues, the best way to start is take a family history and see what is there.....keep a symptoms list.....then start with ur PCP and get referrals for AI specialists in ur area.

Many of us with chiari r prone to these conditions, like Hashimoto's thyroiditis, a blood panal and a ultra sound of the thyroid is done to determine this condition, so u can see how  symptoms, family history can work together to narrow down which tests should be done.

[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

[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......

[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 :)

[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.

[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]

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]

  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?

[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]

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]

Yes. I agree. Thanks for your input!