selma

[buckeye4]

Got a question. with my son his cerebellar tonsils are displaced by 15mm and the syrinx is identified. which part is worse and the most concerning. the syrinx or cerebellar tonsils. Also, I understand the tonsils are and what they are doing but don't really understand what a syrinx is. I take it not everyone with Chiari has a syrinx so the fact that he does makes the chari dx worse?

[selmaS]

  Hi, Did u have a MRI of ur thoracic and lumbar spine? if not, u can only say no syrinx in the cervical spine...we have many chiarians with a syrinx in other areas of the spine, some Drs only look there as it is the weakest area and prone to a syrinx due to injury and in their logic if the herniation is right there so should the syrinx....sigh....

As I say many times, since Chiari is congenital so many of us do not recognize symptoms as we r use to feeling a certain way all the time and consider it "normal" but that does not mean it is...u could have more symptoms then u realize...I know I did.

Are u taking ne meds at this point for nething, pain, GERD, ....???

[MaybeTomorrow]

I have a 7mm herniation, but the MRI shows no syrinx. The cine MRI will need to be redone due to tech difficulties. I just have neck pain and the occasional headache. My most annoying symptom is this itchy, prickling sensation all over. Does anyone else have this symptom as a result of chiari?

[buckeye4]

Thank you so much. I will do that.
Cristy

[selmaS]

  Hi, yes I did see that ur son will need surgery...and I have heard of Dr Oaks b4 and so glad u r happy with him, that makes a diff....and having one that is also well experienced helps too : )

Please post on the surgery date thread when u have a date for Jack's surgery...I would like to post a prayer thread.

[buckeye4]

Hi selma not sure if you seen the post since our visit I got some comments a from everyone and thank you for everyone its nice to have people who care to talk too about this. Jack has to have surgery for his syrinx and chiari he will have the decompresion as well as the syrinx issue which on MRI runs through out is spinal cord. Wasn't prepaired for that. New about the cervical area but not the other areas that  Dr. Oakes pointed out. I spoke with a girl friend yesterday who's child has CM2 he does have spinal bifida and she sees Dr. Oakes (Jack's NS). She said we are in good hands and that we have the best. Her son at birth had surgery in Phili at the spina bifida clinic and was operated on by the #1 Ped. NS in the U.S. and now that Anthony is older he goes to UAB for care and Jack's Dr. came highly recommended by him and his office. At one of his surgeries that was performed by another NS at the time Dr. Oakes was brought in for consultaiton by her then Dr. and since then she sees Dr. Oakes for everything. Very comforting to know that a personal friend who's child as had expierience with our dr. sure gives me a better feeling on the decision that is at hand.Your prayers are so helpful and comforting and I know God is listening. Thank you.
Cristy

[buckeye4]

That's great to know. I was going to bring this up at NS appt. on Wednesday. How funny that his vision was dx in February and he started have H/a in March and not only was the Left eye bad but the Dr. stated he can't focus with that eye its like his eye is constantly try to auto focus and it can't. He put him in 20/50 and 20/30 Right eye. Then come last week took him to Opthamologist and he had to increase his sript on the Left eye and we are patching the good eye for 1-2hrs nightly. if surgery is necessary for him how great that would be if his vision is helped in the process.
Thanks,
Cristy

[Viva001]

My ophtho sent me to a neuro-ophtho, because I could tell him exactly what the visual disturbances were.  Plus, I would get nauseous closing 1 eye during the regular vision test. Between the two offices, I think I had every test available.  Fortunately, my eyes are healthy.  
It was the neuro-ophtho who told me that a chiari malformation could make me lose my vision--that certainly swayed me very quickly in favor of surgery!

The visual disturbances resolved within a few days of surgery.

[buckeye4]

We've been watching movies and doing some school activities and some playing. It summer break here so I've been having them read and do school stuff everyday so they will be ready for next school year which starts in Aug. 20th. we're managing but like Selma said he will listen to his body as well as me watching out for him. thanks for the ideas.
Cristy

[buckeye4]

Hi, thanks for the advise. I know they stated the syrinx was identified but no measurement did your NS tell you exactly how big it was. I look at the MRI I really don't know how to read it. Will he point out the areas in question. How old was your daughter when she had the surgery? Jack is c/f  headache nothing else yet. How ever he does have vision issues. Which I took him to the Opthamologist last week went through alot of eye tests they did a refraxtion he didn't see any swelling around the optic nerve but did change his percription to a stronger script. We never new he had an issue with vision to February of this year. Even thought Optham. thinks vision is not related I still question it.

Have the symptoms for your daughter gotten better and were they always present. Like Jack His H/A were frequent till he got put on antibiotics for the sinus infection now he has them about once a week or everyother week. Not all the time. My thought is the pressure for the sinus infect and playing base ball sparked things to be worse. What do you think?

Cristy

[Viva001]

I can't imagine keeping 2 boys quiet!
I guess you could take them to some library activity, if there is one.  Lego was a lifesaver for me with my hyperactive son (who became an engineer & an attorney).
If all else fails, it's nap time for everyone after lunch, like they do in Italy & other places.  You have to do it too.  :)

[Joalexa]

So sorry for you and your precious son!  My daughter had CM1 and syrinx and NS insisted the surgery was necessary or she could be paralyzed.  Her only symptom was neck and arm pain.  The treatment for syrinx is the decompression surgery and in most cases it resolves the syrinx or stops the progression.  At 3 months out her syrinx already looks much smaller on cervical MRI.

[selmaS]

  I am sure he will understand cause and effect...the more he doe the more he may have pain.....he will learn to listen to his body with out really being told.

Some things he needs to be careful of like not getting hit in the head or neck area, and bumping around like on a roller coaster....but , u can let him be a kid....again with in reason....

  Again good luck Weds and post an update afterward.

[buckeye4]

Thanks Selma. I will keep it in mind. It won't be for a few more weeks at least and the NS appt is this Wed. I will have do and don't questions regarding what activities he can do. Like I to told Viva001 its hard keeping a 6yr old with alot of energy at bay. Oh by the way he has a brother to that is 7yrs and both are very active with each other if you know what I mean. can be a love hate relationship at times. Thank you for the prayers.
Cristy

[buckeye4]

His name is Jack. I'm sorry if I haven't told you guys. I am trying to be more cautious now that we know its Chiari. Yesterday we went to the park to play and then ended up at the golf range with dad. That evening at home is when  he said he had a headache. I'm trying to watch things but he is a 6yr. old and a little boy with alot of energy. its hard to keep him at bay my guess is that he now had it before but didn't want to stop playing.

BY the way he just lost his front tooth. Dad tied it to a nerf gun then Jack shot it. He was so proud. Thank you for the prayers. I no God is listening and it is his will like you said before. I hope the outcome on Wednesday is informative. I need to know what to do to make his life as normal as possible. Yes, I do think we are lucky that we got the DX now while he is young especially before any of the other symptoms start affecting him.
Thank you
Cristy

[selmaS]

  Just be careful with the waves when u do go, and something to keep in mind, take a hat with a brim like a baseball hat as the sun can cause HA's and a hat and sunglasses together helps reduce this issue, and walking in the deeper sand can be diff for those with Chiari as well as the beach where the water brakes as it can affect our balance....just some things to keep an eye on.

  Will deff have u in prayers this week .....

[Viva001]

Thank you.  I was just wondering this a.m. If I was doing any good here.

I agree with Selma; I would not allow any strenuous activity w/o the doctor's approval, at this point.  It might be a nice reward for him to look forward to after he recovers--if the dr gives the ok.

I know I pushed the limit several times before Dx, but I'm an adult & I took responsibility for myself.  Finally I pushed too far, but that's ok, because I finally got the correct Dx.   I think it's actually fortunate that he got an early Dx. Some people recover so well that they're exercising & jogging!  It's too late for us older folks.

Know that we're all praying for you and your son.  What is his name; sorry if I missed it.

[buckeye4]

Thanks for the input. I did not tell him about the water park because I was not sure what to do but my thoughts were the same. Its is summer break he loves the water but thought that may be to much until we see the NS and get his oppion on he situation. We'll figure something else. We have plans for the beach in the following weeks. I hope he will be able to enjoy it. I guess we'll get some of our answers on Wednesday of this week.

Cristy

[selmaS]

  I would noto go to the waterpark, sorry, slides and some of the activities may prove to temping for ur DS.....

It all depends on the Dr u r seeing and how he/she approaches this.....and u do not want to rush into surgery with out all the other testing to rule out related issues, it is very important that step is done....as it can affect how he feel and heals pst op if and when surgery is done.

  My DH was like that too, more their species if u get my drift, he went and did research on his own, but did not let me know until we were at the drs, then he asked questions he could not have known unless he did the research...it is their job to protect us and they do not know how with medical issues, so they pull back....he will come around....

[buckeye4]

I know. I hold my feelings in about it when around him. Just after a while I need to let go but I'm usually by myself. I have a question some friends have asked us to go to water park Not sure if we should go till after the appt with the NS. If the NS does discuss surgery how long does it usually take to get procedures going. Do they see these things as lets get you better(next week) or do they make you wait for awhile. Keep in mind we are see a Chairi specialist. Are they aggressive or passive?

Thank you for your support. My family all out of state and my husband is concerned but doesn't show it or really talk about whats going on. It makes me feel like I have know on to talk to and that maybe I shouldn't be as concerned kinda dumb. But my kids are my life. So thank you for talking with me and keeping me in check. That goes for everyone...
Cristy

[selmaS]

  He will be looking to u for strength and how to be, if u r scared and show it, then he will be...so I know it is hard, but try hard to be brave so he can be....

I am not saying do not make him think there is nothing to be concerned about....

  Try to relax....and know u all r in good hands <3

[buckeye4]

its been about a week and last night he told me he had a head ache.  when he gets them he askes "why did God make Headaches" Now that I know a tear comes down my face. I told him we were going to talk to the Dr. Wed. and find out. Gave him some Motrin and went to bad little while later. Seems like the Motrin did help after awhile. Going to church this morning going to do some praying and probably alot of crying.
Cristy

[selmaS]

  The HA's are attributed more to the chiari then the syringomyelia, even tho I am sure both cause HA's, the chiari HA will come and go as the inflammation changes, this can be duw to the amount of blood trying to flow thru the constricted area at a time due to our activity levels, and it ca be due to hormonal changes, weather changes, nething that can affect inflammation inside us ....even stress...so it is an ever change face of symptoms.

[buckeye4]

Thanks for the info. My hope is that the NS can help make my little boy as whole as possible so he can enjoy being a little boy and doing things that he should do. Sure there may be limitaions but maybe without H/a or any other symptoms he hasn't expierenced yet.
Thank you,
Cristy

[buckeye4]

I know what your saying and I thank God everyday etc.. that he has had good days. I want to cry for the days in the begining when we would brush it off, give motrin and call it a day or thought it was because he was just hungrey and needed to eat something. then when they became more prominent, lasting longer and more frequent. We knew something wasn't right but never did I think this. He had a CT for sinus infection the radiologist saw something and wanted an MRI. The first area in question turned out to be normal but then he found the Chairi and the syrinx. So here I am talking with you today.
Thank you and yes you are helping me through this more than you know. Everyone is. I feel like when we see the NS I won't be going in blind. No matter he says or thinks of his condition.
Cristy