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]

  I also have tethered cord and I have a neurogenic bladder...and for yrs I did not feel the urge to go, but I would get such pain down my spine...that I was doubled over....after emptying my spine would begin to feel better...
Then I got the sensation to go, but if I wait to go I get warm and the longer I wait the hotter I get to the point of sweating...it is all very odd but can affect how we know if and when we need to go,....as an adult I know that as a child, I am sure they do not.

Oh ok...so it was a build up...that is great u did it that way....kids do bounce back quicker, I just know I personally would not have been able to go back to nething at 8 weeks....I am older and have other issues going on....but since u see this bladder issue it makes we wonder what might be going on....getting checked for EDS is a good one and mayb a urodynamics testing of her bladder may help too???

No worries I hope u hear back soon,.

[charlotteKulow]

hi, she had her opperation in aug/sept and didnt return back to school full time untill after christmas , she did the odd morning 8 weeks after her opp ..but if i felt she couldnt manage it , she wouldnt go in or i would pick her up early. It has been a gradual progression back to school. She also has only just started sport again since after the easter holidays(april) which includes catching , abit of running and swimming.
im sure they did a full spine MRI post opp at 5months ..although she moved about a bit so im not sure it was as clear as it could have been.She does occasional wet herself at school but it is not everyday and it will only be once...she seems to hold on to it ..then has a panic run to the loo , not quite getting there in time.
I will request another and chat to her consultant her bladder doesnt improve and also get her checked for EDS. i have emailed the consultant today to see if they will tell me what the patch was made from. thx

[selmaS]

  How long post op did she return to school?....that sounds like a long day....does she have ne bladder issues while in school?

   I had leg pains as a child and I know all too well how it felt....I know now it was that I also have Ehlers-Danlos....do have her checked for it....as it could explain the issue with the leak....those with EDS tend to reject patches that are nething but their own skin....Drs will say the patch failed but not that the patient rejected it...and it seems those with this issue tend to find out they do have EDS....so do look into it as it may help in treating her....

The lumbar drain when removed may have caused scar tissue to form, and that could have created a tethered cord...which is causing her bladder issues....did they do a MRI of her lumbar spine?

[charlotteKulow]

hi thx for your comments
im not sure what conditions where related , hence not knowing if they where ruled out?
she had a CSF leak D11, showed WCC 448 , she had flucloxacillin and cefataxime. plus a lumbar drain.
she really has made an amazing recovery.
I will find out what duroplasy she had, i know it was synthetic.
As for bed wetting,it maybe chirai related - she started to go throu the night before she was two and then we had to be admitted for her first opp and was bed ridden for a while ..so dont know if that had anything to do with it.
I have tried evrything , whilst she was in hopsital this time she wet her bed almost evrynight and since returing from hopstial if i dont take her to the loo before 10 pm ..she prob has wet her self ( i know she can do it ) ..i do put it down to her being very tired as she is at school from 8.20-4pm !!
she will have another MRI in jan 2015 ..and then if all is well they said 2 years after that ..so they are monitoring her .
she has one strong eye and one weak eye ..she has it patched and that has made a difference to the strength of her weak eye.
im never quite sure what symptoms she gets as i have a feeling shes had weird symptoms for most of her life and she has just thought they were the norm !! ....i know her leg pains sometimes bother her when shes tired and she ocasionally says ants are crawling up her legs ..but she has very rarely complained of a headache.she is quite an inspiration . thx for all your kind words .

[selmaS]

  Hi and welcome to the Chiari forum.

It is typical for needing a 2nd surgery as the one without the dura plasty is viewed as less invasive and preferred for children, however it does not make more room....hence the need for the 2nd one and a dura plasty.

IMHO once u have Chiari u will always have it...we all have our own version of what is "normal" for us...some contact type sports should be avoided .....roller coasters things that can throw her around....again some Drs and people may say not an issue, but if she tries it and has HA's or other symptoms afterward, then avoid that and she may be able to  live as normal a life as possible....as a child I avoided those things bcuz how they made me feel, so I did not "like" them....I had no idea I had Chiari but stayed away from things that made me feel "off"....

Kids tend to bounce back much better then those that are later in life when finally getting a DX....plus, it does more damage the longer u have it untreated....so she may be able to do more then I will ever do at this point....lol..


Is she having issues at school?...blurry vision, difficulty concentrating, following....carrying books, bookbags?

Bed wetting? How long is it going on....bladder issues could indicate tethered cord and this can get worse post op from decompression....

Since she had a syrinx, u will want to take care in knowing if the LP is medically necessary and the tech knows to draw slowly and knows what Chiari and Syringomyelia is....if they draw the fluid too quickly it can pull the cerebral tonsils down and cause another obstruction....so they can be done with care.

A syrinx can begin to grow again....as they can form due to an injury or trauma to the spine/back....so this is y contact sports may not be a good idea....or even something where she could fall and get hurt...if she likes to ride horses, I would not think jumping on a horse would be advisable...for example...

Were ALL related conditions ruled out?

U said she had an infection....do u know what type?

With the dura plasty what type of patch was used?

The biggest thing is  to keep track of things she tries and how she does a day or so later how it may affect her....we are all different and we will only know by trying....and even if she can not do it this yr, she may be able to try again next yr.

  I will be 5 yrs post op the end of this month and I still live with Chiari symptoms....but I do have related conditions too and I am much older and older when I had surgery,....that also affects how one will do post op....I suggest to move forward slowly and cautiously.....and know a Dr can not know how we will do until we do it.  : )

[charlotteKulow]

hi..im looking for a bit of advice.

My daughter was diagnosed with CM type 1 , 15mm herniation - no syrinx when she was almost 2
.Her symptoms were -blacking out when she bumped her head, no other symptoms that we were aware of ( im an osteopath and requested an MRI scan due to a mild scoliosis occuring and a fantastic consultant) it showed the chiari and a high resolution are in her medulla.
she underwent decompression surgery - partial removal of c1 no duraplasty.- Mr j Ross , Sick kids edinburgh.
all was well ..opp a success ?!...fewer black outs but no one could tell us if they where really related to the chiari.

Unfortunately her consultant went of on sick leave and we where slightly left to ourselves, however she was due to start school in sept 2013 and i wanted to make sure all was ok before starting so i push for another MRI.

This time it showed that she had developed a syrinx the length of her spine - her symptoms as she described to me later - but had not really been evident where - Fizzyness in head/legs on defecating, wobbly to stand on one leg , slight balance issue when doing tap ! ....and then the hospital said she had reduced sensation in her right hand.

She had a new consultant Mr D Sokol - surgery was to redo the compression , reduce the cerbelar tonsils + duraplasy . The surgery went well and she was fine - unfortunately she developed a leak form her scar , so had to be readmitted for a spinal drain ..then she got an infection ..finally we where released after a month with no problems?!

She had a follow up scan in jan 2014 ....it showed that the syrinx had almost gone ..the consultant said she was "perfect" and all was well - MRI in one year time and another if all well 2 years after that.

We have been very lucky !

My questions are as follows:

A, what is the likely hood of any more problems - or is she now chiari free and a "normal" child.- ??    what kind of problems can reoccur and why - can syrinxs come and go ?? could she start getting problems later in life?
B,Should she be allowed to do all sports - the consultant said it was fine one year after surgery.
C, Is there anything i should be on the look out for .
D, Is there anything i need the school to be aware of - she has only just started participating in sport ( ie running catching) swimming.
E,Should i record when her legs are sore ..is her bed wetting related to the chiari ( she has been dry and can do it )
F, Is she allowed a lumber puncture ..is there any medical intervention/procedure i should make sure she shouldn't have .
G, Anything else i should be aware of !!


many thanks for any help you can give me post op care/ living with chiari ..or are we not now ?...its been a full on 4years  but in the back of my mind even though the consultant has sort of said its all over ...im not sure !!!

[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?

[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

[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.

[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?

[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.

[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.

[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

[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!!