Aa
Aa
A
A
A
Close
Avatar universal

chairi in kids

Hi my 9year old son had decompression surgery for chairi malformation with syrinxs last july. He had a follow up Mri 2weeks ago which showed enlarged ventricles. Surgeon doesn't want to "react to the scan" and is sending him for eyesight tests. My question is he looking at hydro and possible shunt surgery?
19 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER

  Oh ok...I know of another member in Ireland so I understand the issues with Drs there...

Wish I was able to say something that would help him...I had issues walking post op as I had balance issues and used a walker for a short time , but I had a cane yrs b4 surgery.....and I still use my cane when I go out....but not in the house anymore....I have gotten stronger with each yr that passes since my surgery which this May will be 6 yrs....I did however, not have a syrinx.

Sending prayers for your DS.
Helpful - 0
Avatar universal
Hi Selma I am in Republic of Ireland. There are a total of 4 paediatric NS in the country who all work together. He's better this morning but not happy with him. His main problem pre op was his walking as the syrinx was causing weakness. Never really complained of headaches just occasionally being dizzy. Sometimes he would look and feel like he had the flu but no cough or temperature. Fine one day sick the next. He's now showing similar symptoms. Thank you for your comments most appreciated.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Oh...but they did not put a patch on it....hmmm

Go with your gut and try and get him in sooner if you can....are you able to get him on a cancellation list?

May I ask what country you are in?
Helpful - 0
Avatar universal
No just the normal one of the brain and spine. They did open the dura and the arachnoid but no patch. Some days he's fine other days he looks unwell. Something telling me something wrong.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  If there was no patch that could be his problem....I have seen several have the decompression with out the dura being opened and it just did not create enuff room and as a result caused the CSF to build up...which could be why they feel he has hydro.....

  Has he had a CINE MRI since his surgery?
Helpful - 0
Avatar universal
He was decompressed in july last year. No patch used. He has quite a high pain threshold. He has been irritable for a couple of days. He came home from school today very pale with headache and the tic. He's not complaining and i have put him to bed with a painkiller. Not due to see NS till April waiting on eye exam.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi...yes it can, since it affects the spinal cord and all the nerves that run thru there any thing can be affected....

Chiari can be difficult to DX since symptoms can come and go...some return, while others may not....

If he has hydro, it can cause the same issue Chiari does when the CSF builds up, it can put pressure on the nerves....and it appears when the build up gets to a certain point it may compress a nerve that causes him to have tics....

  May I ask, when he was decompressed , did he have a dura patch placed? If so, what type of patch?
Helpful - 0
Avatar universal
Hi another question. Can chairi or hydrocephalus cause tics. My son had tics about a year ago before we knew about chairi. They dissappeared after a couple of months. Tics are back today. He was decompressed July 2014 and has developed enlarged ventricles since his op.So I'm unsure if this is a reoccurrence of old problem or a symptom of hydro. Sorry for all the questions but I'm not in the USA and have yet to find anyone with the same condition adult or child. Thanks
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  As with any contact sport or injury from these activities can cause injury to those that do not have Chiari....so those with it and post op are at a higher risk for injury,,,,

There is no right or wrong decision if she is able to ride without falling off or it bothering her...but it is possible it may....

I would also wait until she was further post op....when I look back as to how I felt and what I was able to do and the continued changes I experienced for yrs post op....I would not try to ride a horse unless 1- it was tethered 2- I had on a helmet 3- I was at least 2 yrs post op. JMHO....

I am sure there are other ways to strengthen her core...sitting on one of those large exercise balls is one way I am aware of.....again JMHO
Helpful - 0
Avatar universal
Hi Could I ask another question.  I had my son at physio therapy today she asked me if the restrictions as to contact sports trampolining etc will always apply or will he always have to be careful.  All the information i have read has mentioned them but doesn't mention if they apply post op.  She wants him to go horse riding to improve core strengh. Any thoughts.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Chiari can add to memory issues as we like to call it brain fog....I tend to use lists to help me keep on task....

Sometimes I may appear a bit  OCD in how I attempt to remember things in order I need to do them....it use to bother me ,but if it helps me get what I need done and in the time I need to, I do not care how others perceive me....lol..I am who I am  and will do what I have to ....

  I am sure both issues are playing a role in this....
Helpful - 0
Avatar universal
Hi again. Just a question.  My son is complaining of memory problems. He has a dx of Pddnos and ADD so memory problems are not new but seem to have got worse since op. Just wondering if his memory issues are a result of the chairi or his enlarged ventricles.
Helpful - 0
9432311 tn?1432825085
Those cancellation lists are so important to be on - and to call to inquire about periodically. People cancel appointments all the times - even for bad weather that may not even bother you. Keep calling. Good luck.
Helpful - 0
Avatar universal
Thanks for commenting selma.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Yeah most of the Drs we need to see are far and few btwn so the wait lists are long....do ask to get on the cancellation list to possibly get in sooner.

Helpful - 0
Avatar universal
I wondered that myself. It wouldn't surprise me.He has hypertonia as does his brother. We NS thought he might hav prader willi but pead says its unlikely
We have been referred to genetic specialist but will be 18mth wait at least.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  If they opened the dura they must have patched it in some way??? Just stitching it can lead to leaks....if he had a lot of adhesion's....scarring....then that could be the issue again after a surgery...

The ventricles are getting larger due to excess CSF building up.....but you have to wonder why...

If he had a dura patch that he was rejecting his body might over produce CSF to flush his body of the foreign matter...since he had no patch placed it could just be scar tissue...which makes me wonder if he has EDS ....
Helpful - 0
Avatar universal
No he didn't have a patch at all. They just removed the bone and opened the dura and arachnoid which the said had a lot of adhesions. The scan show that the syrinxs were smaller. They are sending him to get the presure in his eyes checked because of the ventricles. Thanks
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

It is one possibility.....my question is did they place a patch and what type was it....also was he tested for related conditions b4 surgery? I know you mentioned syringomyelia since he had a syrinx....I wonder if they have shrunk since surgery....

It is good the Dr is not reacting  to the scan and more testing should be done....

It is also possible that this could be scar tissue that has formed or an issue with his patch......

Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1671273328
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease