This came from way out in left field...I'm numb

[addicted2harleys]

My daughter was getting headaches.  Doc sent to her MRI.  She had that done Friday.  About an hour ago her doctor called me.  My daughter has Chiari 1 malformation.  

How much more I am I suppose to be able to handle??

Is this what I have and because I have had stupid neuros they didn't see it?  And now my issues could be permanent??  When it didn't have to be??

What now?  What does the future hold for my girl?  Does anyone here know about this disease or whatever it is?

I really am numb...notvjust sayin'
Addi

[Lulu54]

Addi,
we're walking this one with you - we all hope the news for your daughter turns out ok.  I'm glad to read that you understand the mob rules here -that once you are a member you can't walk away from us, even if you have CM and not MS.  We get too invested in everyone here to let you walk away without keeping in touch.

hugs and more hugs,
Lulu

[JSSL]

Hi Addi -

I am glad to hear that your daughter will be able to see someone sooner rather than later, I am sure that is at least a tiny bit of weight off of your shoulders. What a HUGE load you are baring right now, I can't even wrap by brain around it.

My thoughts and prayers are with you and your daughter.

JSSL

[addicted2harleys]

Thank you, all.  I went for my MRI and will wait impatiently for the results.  Baylee is now at the stage where she is asking a lot of questions.  And I found out she has been hiding some symptoms from me that she has been having.  She unloaded on me last night.  I am glad I was able to answer her questions.  She is still scared.  

Kelly, yeah I was pretty shocked when my neuro (#8) told me that, too.  But when the "she's faking it" or "it's all in her head" things get put in your file by previous neuros, I can see that happening too.  There is no valid excuse as far as I am concerned for them not to check the whole thing instead of bits and pieces of it.  I can feel my anger growing about this when I think of it.  :(

I am really sorry to hear that your mother has all that going on.  My heart goes out to her (and you!).  

Hi, Lisa - Nice to meet you.   Normally I would agree with you completely.  But, in this situation I am glad she called me.  She works in two different locations.  She is only here by us 2 days a week.   When she called me, it was not her day to be here.  She could have waited til Wednesday or Friday and tried to squeeze us in.  I am sure her patient load was already filled for the week, it usually is.  I think she called because she wanted to get Baylee in to a specialist right away.  When talking to her on the phone she was telling me she would work on getting her in ASAP with neuro, because she had been told there were no openings until the end of May.  She also told me I could make some calls to see if I could get her in at a place of my choice, if I wanted to....which I did.  

I do agree that this kind of thing should be handled personally, face to face.  I think she was focused on the urgency.  

Well, my next step is neurosurgeon on Tuesday for Baylee.  I already have pins and needles so I will just have to sit on them until then.  ha ha

Thanks so much everyone...
Addi

[LisaJF]

I don't know you at all, but to have your child diagnosed via the telephone instead of calling you in with a supportive family member is just beyond my comprehension.  To hear that your child has a disease of any kind is devastating.

My heart goes out to you  and your family.  You and your daughter are in my thoughts and prayers.  I agree with LuLu and being informed about everything you possibly can with the diagnosis is very important so you can make informed decisions, discuss, question and most of all find out what your options are.

God bless.

[anon07072023]

It's pretty sad when your neuro tells you that this could have been missed if they weren't specifically looking for it on your MRIs.  They're obviously not taking the time to do a good job to review people's scans.  Especially if the person reviewing them is a neuro-radiologist.  I would have hoped that they would look for anything that's abnormal and put it on your report.  That actually makes me kind of upset.

I'm glad that your neuro gave you the name of a good neuro-surgeon.

No, my mom did not have surgery on hers. She had too many other medical issues to deal with by the time they figured out what it was – dumping syndrome, genetic problem causing chronic pancreatitis, carcinoid syndrome, problems with her kidneys, cancer, etc…

I hope your MRI goes good and your daughter's appt. with the neuro-surgeon.
-Kelly

  

[Guitar_grrrl]

Addi,

I can only add my thoughts and prayers to all the other good folks' words, here.
Peace

[AMO]

dear addi,

i am glad to hear you sounding somewhat better relaxed today.
I am hahppy your baylee will be in good hands.
and you just never know where your answer will come from:)
hang in there, amo

[addicted2harleys]

Thank you all for the kind words and guidance.  I am breathing now, with an occasional breath hold when it pops in my head that my little girl's life changed forever on Monday.  I am trying real hard to keep focused on what I need to do for her and still take care of me.  

So I went to physical therapy, pain management and my neuro, for me.  Pain management tweeked my meds a bit and we talked about taking that leap to opiates.  I am putting it off, at least for now.  I do know that I need some relief...soon.

My neuro knows what is going on with Baylee and has seen her MRI.  Unfortunately he doesn't treat anyone under 17 and he feels Baylee needs a neurosurgeon, not a neuro.  So he referred us to one he knows is good.   Her appointment is on the 22nd.  As far as me, he wants another MRI done, focusing on the neck and checking for Chiari 1 malformation.  I am having that done tomorrow morning.  It is a strong possibility that I will get my answer now.  Even though I have had a few brain MRI's.  My neuro said it could easily be overlooked if they were looking for something else.  So, we will see.  He did definitely rule out ALS, so I can do a little wobbly relief dance for that.  

Hey, if it turns out I have it, too, and it comes down to surgery for both of us, I wonder if we could have it done at the same time and share a room?  :/

I am staying in the moment and keep reminding myself one step at a time.  I do believe I found every single site on the Internet that is about this condition.  Knowledge is definitely power.  I am keeping everything I have learned in check.   Not thinking of the worse, just thinking about the next step.   I am glad that I did search.  Baylee was not going to have an MRI of her spine, all three parts.  I accomplished getting the ball rolling on that.  I did learn she needs to have it done.  It will happen sometime next week.  

Kelly, I am sorry to hear that about your mom.  That is why I insisted on the spine MRI's for Baylee.  Did your mom have any  surgeries?

I don't have peace of mind yet.  Maybe I will get some after the NS visit?  I think I am still in shock and I know I am fighting guilt.  I know it is not my fault and all that but the feeling is still there.  I hope God's plan for me doesn't add anymore speed bumps any time soon.  I need to come to terms with this one first.  

Again, thank you all so much for holding my head up over the last few days.   Red, thank you so very much for last night and for all the support.  The kind words from everyone has kept me staying focused instead of falling apart.  

And, just so you know, I am not leavin this forum if I find out I have this crappy chiari thing.  My spell check keeps changing that to chair!   You all are just stuck with me.  Heck, I know quite a bit about MS and I like my seat in here!

Hugs,
Addi

[piggygirl17]

I'm SO sorry this is happening to you and your family.  I think I'm just going to write some encouraging words instead of rambling on.

You CAN do this.  

It will all work out.  

This is scary, but you are so strong.  

Please let us know if there is anything any of us can do, and of course feel free to vent to us!

[supermum_ms]

Addi, i'm totally lost for words, I dont know anything about this condition, heard about it but dont know what it means exactly.

I keep thinking its a good thing they found the something that explains what sent her to the doc in the first place, and the other thing is that it cant be the same as you or they would of found that in your MRI's and they didn't so its not! Please remember that anything you read will include the worse case senarios of any disorder but it doesn't mean that that is going to happen, so BREATH!

Your in my thoughts, and I hope for both of you the answers come soon!

HUGS................JJ

[Sarahsmom46]

If anyone can handle, after all yo uahve been through, you can.  And who can better advocate for your daughter with doctors than you.  Like eveyone else has said already, I am sorry you are having to see your daugher go through this but perhaps there is a reason for it.  Perhaps you also have the smae condition and now you have a frame of reference in asking those questions of a nerulogist.   You will stay the strong person that you are while you work through this and of course, you know you have us to come to.  

Love and hugs to both you and your daughter.

Julie

[anon07072023]

I'm sorry to hear this about your daughter.  I can understand her fear.  You will get through this together.  She's lucky that they found it, and she's lucky she has you as her mom.

My mom had syringomyelia and all the symptoms for it.  

I hope you get to see a neuro soon about this.  Hang in there.

-Kelly

[candy158]

Hi sweetie, so very sorry to hear about your daughter, but like everyone says, knowledge is power and peace of mind.  You can list everything that you need answered and demand the answers from the neuro's ...

I expect it will be a  little while before you see anyone again, so that gives you lots of time to write everything down, and digest what is happening.

I agree with you, that is it was us it would be easier to deal with.  I always hope ethat too, but sometimes God has another plan, and maybe you are the example for your daughter.

You are a very strong woman, and with faith and love, you will do alright.

Love and hugs to you both,
Candy
xoxox

[essdipity]

Addi, one trick that has helped me over numerous bumps in the road is to make sure I don't get ahead of myself. It is so easy to anticipate all kinds of dire consequences and to get absolutely freaked over them, only to find that 95% of that worry was irrelevant. But what a toll it took on my mind and body.

So I can only hope you'll find a way to stay in the moment. Yes, learn what you can, but don't 'conclude.' Tell yourself that you've done a wonderful job of dealing with other crises (Yes, you HAVE!) and you will manage whatever else comes along in life. Just breathe!

Your daughter is getting good medical care and good mommy-care, and that's all she needs right now. So exhale!

Please keep us up to date with these developments, of course. But please also take care of you. You have many resources and many friends.

Also many hugs,
ess

[HVAC]

They thought I had that and it scared me to death as well. Like anything knowledge is power. Yes it is hard on a parent because you do not want anything bad to happen to your child. You have to take it one step at a time. Find the best Doctor you can to help.

Hang in there.

Alex

[addicted2harleys]

I am a little discombobulated right now...okay, a lot.  I think I could handle it better if this was given to me, not my daughter.  Or if it didn't come out of the blue.  We didn't even suspect anything but stress was affecting her.

I put in a call to my daughter's school first thing this am and faxed her the diagnosis for her records.  Baylee's school counselor knows her very well.  She is going to email all of her teachers to let them know and she is going to call Baylee in to see her.  

I did sit down with my daughter last night and told her what is was and what the treatments could be, depending on what the neuro says.  She is very scared right now.  She is concerned she will "end up like me".  I tried reassuring her and told her we can't jump to conclusions until we see the neuro.  Well, I can jump cause I am the mom and she is my baby.  :/

Yes, this forum has taught me what I need to do now.  And I am so grateful.  I googled as soon as I completed my message here.  I am gonna google some more here shortly...and will print out some things.  Baylee's GP placed a referral in for a ped. neuro when we originally went in to see her.  Since we haven't heard anything from them, she was going to call them to get Baylee in asap.  

Usually I like to respond to each person, but I am going to group it this time.  I hope you understand.  Thank you all, for the support now and throughout my time here.  I don't know what I would have done without you.  

Red, I will take this private with you.  I will say real quick that Baylee's left cerebellar tonsil is projecting 6.5 mm below the foramen magnum.  No spine MRI done.  I suspect there will be to check for a syrinx.  This MRI only shows to C3.  

Thank you all again...I love you all!
Addi

[JSSL]

Addi - I am so sorry to hear of your daughter's Dx. She is lucky to have you as her advocate to help her thorugh this process. From what I have read it is a very treatable condition in most cases...hold on to good thoughts!!

JSSL

[RedFlame]

Oh I forgot, they do a surgery to decompress the spinal cord to enable the spinal fluid to flow normally.  

Find out more from

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

I am a member of that community but rarely go there.  Please check it out

hugs

[RedFlame]

God Addi, I am so sorry to hear this!  This is all you need on top of everything else and of course all your daughter needs too.

I have Chiari Malformation I as well.  It was diagnosed before the MS.  I don't have headaches and they believe mine is minor.

The cerebellum has two tonsils that help us keep our balance.  What happens is that the tonsils have descended into the spinal cord.  The report should tell how far the tonsils have descended below the Foramen Magnum which is the base of the brainstem.  The other thing is if there is a syrinx which is like a bubble or lesion that requires immediate surgery.  

D__n girl, you just can't catch a break.  I can't imagine that a radiologist could miss that with your MRI's but then I wouldn't have imagined all the things that happen to us here on the board.  

The support group here for this is operated by Selma S, she can answer all your questions and help you on that board.  She is a dear.

I am going to try to PM you later, am on my way to a neuro appointment.

I'm so sorry Addi!!!!

XXXXXXOOOOO

Red

[twist330]

Addi so sorry to hear this. It must be a great shock.

I know very little about.

sending love to you and your daughter.
Twist

[torikat32]

I am so sorry to hear of this about your daughter but I am glad that she has been diagnosed and done quickly. A friend of mine in her late 30's had the operation for this and she was home in 2 days small incision in back of neck and its been 7 yrs and she is doing great no headaches no complaints. Just try to breathe easy and find a good neuro surgeon. you both will be in my prayers

Kat

[Sparkysarah]

Oh hunni, I am so sorry to hear the news about your daughter and it must be such a shock which is why you will be feeling numb.  I know nothing about Chiari, but there have been several mentions in recent posts so think i will look it up also.

I hope that a follow up appointment has been made and meanwhile read and find out as much as you can..being well informed and understanding the implications and potential treaments will help you to ask the right questions.

THINKING OF YOU AND SENDING BIG HUGS . LOVE TO YOUR DAUGHTER ALSO.

Sarah xxxx

[shermay]

Oh Addi,

I'm so sorry.

Did they give you any information to start off with at the Hospital? and did they give you a follow up appointment?

I'm sorry I don't know anything about this, but I'm off to Google it now.

My thoughts are with you Addi,

Hugs,

Debs X

[Lulu54]

Addi,

Here's where you put to use everything you have learned here about the power of knowledge.  Learn as much as you can, as fast as you can about Chiari Malformation and be prepared to have thorough discussions with the doctors about treatment.  

This is a more common problem from what I've read ...  and there are corrective surgeries that can be done to reposition the brain/spinal column.  Make google your friend and go read as much as you can.

Here's one place to start at for your homework-

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Remember, knowing the name of the disease is the first step in treatment.  I'm glad they found this and can help her to move on.

hugs,
Lulu