teen surgery

[Kodysboy]

My 15 year old son had a decompression recently for Chiari I that was originally diagnosed at 2. We were told that it was unrelated to any of his problems (he has mild devel delay with speech and motor difficulties incl balance, writing, arm strength, "some autistic features") for 13 years, then a new doctor informed us the surgery should be done.  He never had the headaches, the only symptom we were ever told to watch for. All docs involved are hopeful for some improvement of his motor difficuties, but also say it is possible to see no change at all. They say the length of time of compression and its timing in brain development could minimize effects of decompression. We are planning to stay on the side of hope and faith.  Has anyone seen changes in a child of this age with speech (articulation) and motor problems? He has had years of speech, occupational, and physical therapy which we will try initiate at home again, but if any knows more, we'd love to hear. Thanks

[selmaS]

Hi I think I understand what u said...and I think it is great that they were able to confirm their thoughts on how the blockage occurs.

I am sure u r right about the spams causing the pain in adults also.

My last surgery I was given oxycotin and was surprised I had a reaction...I had it b4, but the last time I was itchy all over, but inside so I could not scratch...I can no longer take it.

I also believe the graph u were disscussing is where they remove the bone on ur grandson's skull to make room for the cerebellum which is overcroweded as well as herniated.....but they do have to put something there with a bit more room....if left open the cerebellum could fall again and crush the spinal cord. Some drs use bovine graphs...some use titanium...and others use a mesh.Each dr uses a diff method...and there r those that do not use a patch ....I think it is risky not to...just my opinion tho.

I pray all goes well...Wesley will be in my thoughts and prayers as will u so u can relax....

"selma"

[Kodysboy]

Way to go Wesley! Your efforts are bound to help everyone.  Good luck with surgery.  My son only had difficulty with a little nausea and waking from anesthesia, but the pediatric nurses are really on top of it!  And the surgery was a rather quick 2 hours. I'm sure it will go well for you. We'll keep you in our thoughts.

[Kodysboy]

Thank you for your info.  It's helpful to hear anything!  He seems to be recovering well but still not much change to the balance and speech issues-maybe it's a slow process.  He also complains of occasional visual disturbances like colors?  We are being sent to UCSF this week as well, so maybe we'll have more questions answered soon. Hope your recovery is continuing to go well.

[mjq399]

Thanks for your replys, I wanted to clear up that it was when his head was pulled down towards his chest that blocked the flow & made his brain swell.  His tonsil is 22mm, they explained to us that the post surgery pain is caused mostly by musle spasm's in the neck, and they said kids don't tolerate morphine very well, so they go to oxcy-cotten not sure of the spelling, And they often have trouble w/also, so I'm wondering if muscle spasm's is the main cause of aldult pain too.  I also didn't understand about graphing tissue over the skull bone removal, they said it's to make a seal to alow the spinal fluid to flow arround the brain & spinal cord like it's supposed too..  They said his surgery will take 5 to 6 hrs.  Mom told me tonight he's starting to get worried, we head up to Ann Arbor tomorrow night.  Best Regards, Wesley's grandma  mjq399

[selmaS]

WOW!! As Sue said this is GREAT News...for All of us with this condition.

Thanks for sharing this exciting news and thank Wesley for me and all of us here in the Chiari forum, bcuz this will help all of us!! : )

And also give him our best for his surgery, I will keep him in my thoughts and prayers.

Please keep us posted on his progress.

"selma"

[Hursty48]

This is really fantastic news not only for your grandson but also the rest of the world....
Wish you all the absolute best, especially Wesley, for April 22nd.
I'm not sure about the sling but what you describe is what i had done 4.5 weeks ago - my doctor doesnt go into too much explanation which is very frustrating for me - I like to know everything but sometimes its just like getting blood out of a stone.
Will be thinking of you all.
x Sue

[mjq399]

Yesterday we spent most of the day at U of M getting pre-surgery testing done for my 7 yr. old grandson.  And I have great news.  They were able to get the best pictures EVER of the Chiari blocking the flow of spinal fluid in the head, when the head was tipped back it showed so much fluid gathered and started making the brain swell!  They said they had never been able to get anyone to be able to hold still long enoungh to prove their therory, during his by the time his mri was over ther was 9 people in the room watching and jumping up & down with excitment.  They gave him several breaks before they got finished & his mom was in the rm. w/him, she couldn't imagine what all the excitment was about!  When they could they came and got the rest of the family to tell us why they were so pleased, they told Wesley how what he had done was going to help so many Chrari people get the surgery they needed, because they could now prove what they suppected, but had no proof.  Wow you can't imagine thier excitment, they kept thanking him & praising him, told him he would soon be in the medical journel.  Luckily Wesley would go to sleep alot during the position movements!  They then did mri of spine and he had 1 turned disk area.  Wed. am April 22 he will have his decompression surgery, they will remove c1 bone, then bone at back of head, then they will graph tissue to cover where the skull bone is removed ( is that what you refer to as a sling?)  He's very uncomfortable now, so were praying all go'es well! Happiness to all!  mjq399

[selmaS]

HI and welcome to the CHIARI forum.

I am sorry to hear ur son is having so many issues.As most of us have learned in researching this condition is that when we see a regular NS the tell us our symptoms are not from chiari and we do not need to do a thing...and then we find a chiari specialist and we are told the exact opposite......

The most important thing we can say is find out as much as u can so u understand what the dr is saying and that u r getting the care needed...if not find another dr and be sure they r a chiari specialist.

There are members here that are parents and may be better able to inform u on what their child has experienced.

I hope u continue to share ur and ur son's chiari experience with us.

"selma"

[Hursty48]

I'm sorry I cant answer your questions directly but what I can tell you though is that all my life I had pain on straining though didnt ever seem to suffer the excrutiating migraine like headaches. I had other little weird things which were starting to get worse (mind you it has taken years - I am almost 49yrs now) - like difficulty swallowing which was put down to stress - like all the other "little" symptoms. Late last year I had a bad visual disturbance standing in line at the bank along with nausea and then a headache. I went to hospital where they diagnosed migraine. After a week I still had a headache so went to a doctor who did a ct scan then when that showed possible chiari 1 I was sent off to have an MRI where it was confirmed.  I am now just over 4 weeks post op and I have to say "the whole swallowing problem has gone", I still have a headache but am supposing that will go once the surgery has healed  - I hope you also see some improvement in the "little" things (which add up) for your son which they say are'nt really symptoms of chiari alone. Personally for me I think they are. Its not just about the headaches. Once things started going down hill for me yes I did have a constant headache but it was dull and not much to stop me doing anything but the lots of "little" symptoms were bothering me AND getting worse. These are just my personal opinions and I am no doctor but its how I saw things from my own perspective. I wish you all the best and send lots of healing thoughts for your son.
Sue