where does a person start?

my  was diagnosed 4 yrs ago with chiari 1.  the symptoms have gotten worse and affecting her life.  where can she go to get help.  she has ins. but the deductible is 7500 up front.  please help.

[selmaS]

  Hi and welcome to the Chiari forum.

  I am not sure if this is a friend, or daughter, but who ever she is, she is lucky to have someone that is willing to be an advocate for her!

Not knowing where u r located, I can only suggest u look to our list of drs that was compiled by the members of their own drs. This list  is not meant as a referral, but a means to have a starting point for ur research.
Many of us do have to travel to get to a chiari specialist.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Find out how her chiari is affecting her overall health....u indicated that it is affecting her quality of life already...but u need more info.

  More testing to find out is she has ne of the related conditions...a syrinx, tethered cord, sleep apnea,ICP,ehlers danlos,disk issues....overcrowding and a CSF obstruction.


   In addition she should have blood labs run to see if she has low levels of vitamins, D and B12...and minerals, magnesium and potassium.

   Thyroid testing should also be checked TSH, free T3, free T4 and TPO antibodies...many with chiari tend to have auto immune thyroid issues...so if ur dr is only testing TSH it can appear normal when in fact there is a problem.

   As far as ur deductible, u may want to look into orgs that help with fund raising.....many with chiari have done so....

http://www.medhelp.org/health_pages/Neurological%20Disorders/Links/show/538?cid=186

      "selma"

[jeninef]

hi, im jeninef dtr, she asked about getting help for my chiari 1and finding resources, I just wanted to say thank you for  your reply it hrlps me,alot

[selmaS]

  Hi..welcome to u as well !!...U r lucky to have someone seek info for u,,,,not all of us have advocates and we have to be one for ourselves....

  We all need support, someone that understands....we are here, and I hope u  consider sharing ur chiari journey with us.

    "selma"

[jeninef]

Well, today is the day that my daughter amy (girliegirl) has her mri.  I think that I am more afraid than she is, and I know she is scared.  Please keep us in your prayers.  

[selmaS]

  Done <3

[Rylanesmom]

I fall asleep in the MRI machine.  I will pray she does as well:)

[jeninef]

Its been awhile since I posted
I feel like we are finally making progress.  On Fri Jan 13th we had amys appt with the neurologist, Dr Raj Singh at The Barrows Institute in Phoenix. We are now waiting for a call this week from the Neurosurgeon who is Dr Peter Nakaiji.  Surgery is imenient.   Will post as I know more

Jenine

[jiggle93]

My best wishes to your daughter. I recently moved after discovering I too have CM1, which I was unaware of for a year after it being discovered. I am looking for new Drs. in the Phx and  Mesa areas to begin the process. I would appreciate any personal input of these drs. your Daughter will be seeing as you both continue on this journey. And might I also add, what a huge blessing for her to have you by her side. There is nothing like the feeling that Mom is right there taking care of everything!  Something I would trade my left arm for!  Please keep her status updated so we will know how to support her best.
jiggle93

[jeninef]

Amy(girlie!_girl520) got her appt with the surgeon for the consult.  Once we got the right drs things are  moving really movingfasst

[jeninef]

Amy has another mri coming up on tues.  He wants to see if the fluid is flowing or blocked.  This should ne the last one before we get the surgery date.last week  they said most likely within two weeks.the symptoms seem to get worse and more intense everyday.  Keep us in your prayers..  hope everyone is doing as well as they can.

[selmaS]

  Hi...oh so is this the CINE MRI then?.....know u both r in my prayers and please keep us posted....and when u have a date, please post on the surgery date thread so I can post a prayer thread.

  hang in there : )

   "selma"

[jeninef]

Well its been crazy with whirlwind trips to phoenix.amys surgery is set for Feb 29th at 8 am.  We will be going up the morning of the 28th for pre op testing.  3 to 4 hrs worth of test.  Just wanted to let you know.

[jiggle93]

I messaged Amy about the 29th. I wasnt sure if yall would need anything, but offered to be there at the hospital for support...or fetching any needs. Let me know if there is anything I can do. Thinking of and praying for the big day! Hugs to all of you!
Jiggle

[selmaS]

  Thanks for letting me know u have a surgery date for Amy....and I will post a prayer thread for her.....

Jiggle, what a sweet person u r, thank u from me, for offering to support another chiarian...<3 that.

  Do keep us posted on her progress : )

[jeninef]

Well as a mother I am at a loss as to how to help my daughter Amy.  The symptoms are getting worse.  Last night at a church function she could not lift her left arm.   I try to give her tons of support and love, but I'm scared of something happening before her surgery.  Her eleven yr old daughter has been acting out and being very mean towards amy.  Finally the other day her daughter said she's afraid of losing her mom and that's why she's been acting out.  This is such a horrible disease.  It affects everyone.  Could really use some words of encouragement about now.  I have to be strong for amy and callista.  But its hard for me to hear amy wish she were dead becuz of all this pain.  I know surgery is 12 days away so I just pray for God to give me the strength I need.  Thanks for letting me vent. :)

[selmaS]

  Do read to ur DD the positive surgical journals here...as it may give her the right mindset to head into surgery,....she should not go in so down....

There are a few that just had surgery and had positive experiences and these may help her at this time : )

[jiggle93]

My heart is breaking reading your post! I have had days where i have wished I would just die rather than enure the pain. I would tell you to con tact the NS and notify them of the new sympton. It is info he should be aware of.
As for Callista, I can only imagine how scary all of this for her. I was 27 when I went through my moms brain surgery and treatments, and I was terrified! And for the acting out, I instantly thought of my friends and their families that are in the military. In the military when one is getting ready to be deployeed, the closer the time gets the worse the relations are. I was told that this is their natural way of distancing emotionally to ease the pain of the actual departure. Many of them go through this. I watched my DD go through this with you boyfriend as well.
So I would say, that although this all seems so unnatural and hurtful...it must be a completely normal reaction.  She is hurt, scared, and I'm sure frustrated. This may be her way of putting up a wall of protection. Maybe she is having difficulty putting words to what she is feeling, so this is way of processing.  I am sure this is breaking Amys heart, as a mother I know to well how our children have a way of getting to us like no one else.  
Please just try to consider everyones feelings, fears, and emotions during this process. I know it is going to be a long couple of weeks, but try to relax and get by as best as possible. Just remind each other that all of you are scared, but that you are doing this together!  You will each have a strong moment while another is having a crisis moment. I remember words did nothing for me at those moments, but having someone just hold me and letting me cry through it seemed to get me back on track.
My heart and prayers are with you all! Please let me know if I can do anything to help...Im just up the road!
XOXO, Jiggle

[jeninef]

Hi all,
well we are in a hotel in Phoenix.  Amy had her pre-op testing today and surgery is a go for tomorrow morning.  Moods are high and very positive.  Everyone at barrows has been wonderful and very helpful.  Will keep you posted on surgery tomorrow.  

[selmaS]

  We have a prayer thread started , know u r both in our  thoughts and prayers for all to go smoothly <3

[irislita]

Good luck today!!!! U r in my thoughts

[jeninef]

Going good so far.  Heading into hour four.  Does anyone know why emza surgery was postponed?  Hope it is rescheduled soon.

[selmaS]

  So far I haven't a clue, and praying she gets it rescheduled soon.

Keeping Amy in my prayers and u as well...how r u doing?