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Newly diagnosed - would love to hear opinions

Hi-

My 15-year old son has been recently diagnosed with chiari I and syringomyelia.  He is not having any neurological symptoms other than bad headaches periodically (which could be totally unrelated).  His syringomyelia is however pretty large from what the doctors are telling us.....9 mm in width and he has developed scoliosis, which actually led to the chiari diagnosis.  Doctors are suggesting surgery (without duraplasty) because of the size of the spinal cyst.  I have done a lot of reading on the subject and I actually feel okay with the surgery itself, however, I have been a little disturbed by many things that I have read about people suffering from things such as occipital neuralgia and memory loss after having the surgery.  I do not want to put off surgery if the cyst is putting him in danger for future neurological issues, but do not want to expose him to these dreadful post-operative possibilities either.....especially since he is pretty much asymptomatic right now (excluding the scoliosis).  We will be seeing another neurosurgeon this week for a second opinion and I have jotted down many questions for him, but I would really like to get opinions from people who have had the surgery.  Thanks so much.  I appreciate any feedback I can get.
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1751596 tn?1406773160
Don't go for the surgery without duraplasty (it actually doesn't make sense). It's better to wait until symptoms get worse and then perform adequate surgery which will improve the quality of life.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I am glad you are doing research and I pray his Drs have ruled out ALL related conditions....the less invasive procedure can sometimes require another surgery somewhere down the line...

Scoliosis can sometimes indicate tethered cord...was this ruled out?

I also wanted to mention the absence of symptoms does not mean the absence of an effect from  this condition...many of use have adapted to symptoms and how we feel and consider how we feel to be "normal" bcuz for us it is...and if you always feel a certain way, you do not realize it is a symptom...

Some of the post op issues you mentioned may have been present pre op for some and the other symptoms covered over them so they were not as noticeable ...but may have been there....

And sometimes those are just something that develops post op and there is no rhyme or reason as to who may develop them...but it is known the longer we wait for surgery the bigger the chance of having some issues post op...such as nerve damage....

It also seems the younger they are they tend to bounce back better then those of us that are older when we have surgery.....

  I had surgery 5 yrs ago and do not regret it one bit, but I strongly believe that teh Dr should be a true Chiari specialist and should rule out ALL related conditions b4 surgery is offered.

Helpful - 0
Avatar universal
Hi since you have asked for  opinion and feedback I tend  to give mine.
However it is you and family who have to decide after full detailed  consultation with the treating  dr.,regarding the pros and cons and make an informed decision.Also I dont know   if scliosis can wait without the required  treatment in growing children.  
1,As selmaS says always(you can also refer to other topics here  for this list in detail  ) make sure that  your son has to be  checked for all associated conditions before surgery which might influence the outcome of the  surgery  .
reg whether to have surgery or not
As far as I know the drs handle  problem you have mentioned like this.
First way:(primarily conservative approach)
some drs see If the syrinx  present  is causing debilitating  symptoms (affecting the quality of life like reduced  mobility etc., )or if it  it is largely asymptotic .
In such an asympotic  case ,irrespective of the cyst size they chose wait for some time.becoz they are not sure how the syrinx might be after some time .. But they follow the syrinx every 6 months most importantly for growing children to see whether the syringomyelia(the cyst) is growing in size or remaining the same.
during such routine dx through MRIs and also physical findings  If they find that the size has increased and there is a likelihood of damage they tend to operate .
That is they operate when they feel it is absolutely necessary.
second way(immediate aggressive approach).
Some drs as soon as they find syrinx especially large ones they tend to suggest surgery immediately not leaving things to chances .They are not that much bothered about the presence or absence of any symptoms .They mostly go by the MRIs taken even at the first time and act  immediately  .
and also dont read negative stories too much and get scared .A lot of Positive story people tend to move on with their own lives .
As you must be aware any surgery has its own risks .You need to make an assessment on the surgery aspects in consultation with the drs.
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