MY MRI

[Chiarimomandwarrior]

I am 32 years old and was diagnosed at 27 with IH, in 2012 my son was diagnosed with Chiari. I believe I was misdiagnosed and would like some opinions I am in NC and am having a hard time finding Drs. My son had surgery and still has symptoms of maybe Chiari or other issues....

[selmaS]

  No dura plasty then this was a bony decompression and may need to be redone....Drs do this procedure in hopes to minimized a CSF leak, they feel this is better and any benefits are short lived.

I have seen sooooooooo many of this type of surgery need to be redone with the dura opened as there is not enuff room made by the bony decompression.

Do get a MRI of his brain and get opinions from other Chiari specialists.

[selmaS]

  Hi no worries....was he checked for related conditions?

EDS( Ehlers Danlos ) can cause a lot of pain ...even headaches....

ICP as Kristy indicated above could be an issue...

POTS- blood puddles in the lower extremities and can cause fatigue as well....

AS for no brain MRI, the NS can order it, did he feel it was not warranted?

I would see if there is a PT that can be set up for him to work with his limitations and help him be more active in order to lose weight, could be the added weight causing issues as well...not sure how much weight he has, but speaking for myself I know my weight is not helping me any....

Do look into a safe way for him to get active and help with his ability to be more active and help him lose the weight needed to be healthy and active.

[Chiarimomandwarrior]

This is mine, I know my son has Chiari and he has already had one decompression they removed skull only no duraplasty.

[Chiarimomandwarrior]

So sorry it took so long... My son is now 8 will be 9 soon the surgery was back in Jan of 2013. He is having issues with numbness and being able to use his legs. His NS only did MRI of total spine, I asked why not the brain and they said it was not ordered. I feel like I can not even tell he did surgery by looking at his scans. He is not having headaches anymore which I am so thankful but everything else is the same as far as symptoms. We thought he needed time to recover from surgery but plenty of time has passed and he tries to ride his bike, and run but he feels restricted. He is overweight, he was suffering from central sleep apnea before surgery and was retaining 75% CO2. We did a post sleep study and it came back normal. He hurts in his legs before he gets winded. I am use to him saying I can not go much farther and be painting but now he is experiencing pain we cannot even go to the grocery store without it acting up.

[selmaS]

  I see you since added a picture.....since I am not a medical professional I can not  speak to issues I was not shown for my own MRI's

I do see in the above MRI what looks like Chiari...this can cause a build up of CSF and too much CSF can cause Chiari....a true Chiari specialist will be able to tell which came first since the lower portion of the skull will be smaller for  a true Chiari Malformation....the other would be low lying tonsils due to the ICP or IIH....

Whose MRI is this yours or your son's? and if your DS's is it pre or post op?

[kristy12]

IH is a symptom of chiari and on the picture that you have enclosed the malformation is clearly present.
Also it's possible that your son needs another surgery before he will get worse. The problem with this serious neurological illness is that most doctors just don't care if they help or not, they just do procedures that sometimes are 100 y/o.  

[selmaS]

  Hi and welcome to the Chiari forum,

This condition is difficult enuff for adults to deal with....but for you to have medical issues as well as your Child is not something I would wish on anyone.

You said your DS had surgery....how long ago was his surgery and was his NS made aware that he is still having issues?....Depending on where he is in his recovery, it is possible to have some symptoms return around the 3 month post op time frame....this is part of the healing process....and should calm down in time,.
The question is it new symptoms, or as bad as it was b4 surgery or worse?

Did you have  a brain MRI done...and do you have copies of the MRI and report? If not, contact the facility that did your studies and request them....

All you can do is ask for a 2nd opinion.....

There is a list of Chiari Drs....it is here for you to use to get started researching Drs....be advised it does not stipulate which ones treat Children....we do  have one I know of that treats children in FL and one in NY and one in the Baltimore , MD area....

Some of these Drs treat adults as well....I will bump that thread up.

May I ask what issues your DS is having, and what type of surgery was done?...Decopression with laminectomy and dura plasty? If a dura plasty what type of patch was used?