My 24 yr Daughter diagnosed 3 weeks ago w/ chiari Malformation I

General
1

My daughter was diagnosed 3 weeks ago w/ CM I - Her GI specialist ordered a MRI of her brain bc she has been throwing up for the last year every morning, sometimes 1-3 times a day. But her

Story is a bit unusual.

Aril 2011 she had a baby boy C-section. All went well. came home 3 days later.

6 days later - she began getting sick vomiting over and over, went back to the hospital only to discover she had Staph infection in her incision. it was so bad, her stomach was turning black,

Emergency surgery was done, hospital stay week, then 5 month recovery at home w/ a home nurse 3 days a week to help w/ the wound vac that continued to vacuum out the infection.

Sept 2011 sick again - polyps removed from her Colon

Oct 2011 - sick again, she was diagnosed w/C-diff back in the hosp

Nov 2011 - Sick again her Gall bladder was bad / surgery again

during all this she continued to vomit every morning, headaches, back pain.

Jan 2012 - Dec 2012 She was diagnosed w/ severe IBS. Her new symptoms have started. hands and feet tingling, some major head aches, and one seizure. The newest symptom is fainting spells.

She gets a major pain maybe in her back, then moves to her foot , begins to sweat, go pale and begins to feel faint - as she is getting her wits back her hands and feet become numb and the migraine begins. After the episode she is worn out and just wants to sleep.

Jan 2013 - Her GI doctor ordered test, blood work and MRI of her Brain. That is when The DR. GI saw something and referred her to the Mayfield Clinic.

Dr. Theodosopoulos said she had 4mm Herniated Cerebellum Tonsils

tomorrow she is having Cine MRI and MRI cervical spine. DR. Theo (is the short version of his name bc I cant spell it or say the full Version) did explain what he was looking for w/ regards to leakage in the spine. and said she will require surgery if there is leakage. If not he will treat the symptoms w/ meds.

I have to wonder is her latest symptoms really Chiari related, staph related or IBS related. So unknown and frustrating for her and as a mom who cant do anything to make this go away.

I am so scared for her BC her health became a nightmare after giving birth and getting the Staph infection. I have to wonder does the Staph infection have anything to do w/the newest findings?

She's a great daughter and Mother. - Through all this she has continued to go to College, work and take care of her son. She lives at home still and is frustrated that she will never be able to live on her own again bc of her poo health declining. ..

Thanks for listening.

2

Mayfield is a great clinic! They are running the appropriate scans so you should find out soon if Chiari is the cause of her issues. A lot of her symptoms are seen with Chiari. I don't know enough about staph or c-diff to know the lingering effects of those. Keep us posted on her scans!

Best wishes to your daughter! She sounds pretty strong to deal with all that while going to school and caring for a son!

3

Hi!
Your daughter’s story sounds similar to me…
I had my daughter in feb 2011 by c section… which became infected (reopened on one side) with community nurses visiting regularly to change wound dressing etc.
And I have never been the same since!

I would sweat so easily, look really pale and nearly pass out with bad dizziness.
Then admitted to hospital in sept 2011 as thought my IBS was crohns disease… I was put on IV steroids… shortly re-admitted again for exploratory surgery and had my appendix removed…

I was admitted again last june for rectal bleeding which was found and cauterised… then a follow colonoscopy found inflammation which was unspecified under biopsy. So apparently I have “IBS”

My urologist actuay ordered the MRI and found the CM1 when I was 24… im 25 now.

They are doing the right thing in ordering a c-spine MRI… ideally a full spine imaging is best. But baby steps is good.

I have opted for surgery and due to have it on 5th July… but it took me a year to make this decision.

Its so good that you are seeking info into CM1… and that you can support her through this.
How is she taking the news? Xx

4

Hi, Nice to meet you,

She is doing pretty good w/regards to the newest diagnoses. Scared, mad confused and wanting to know will this ever end.

Where are you going for your surgery?



bozzylozzy said:

Hi!
Your daughter's story sounds similar to me..
I had my daughter in feb 2011 by c section.. which became infected (reopened on one side) with community nurses visiting regularly to change wound dressing etc.
And I have never been the same since!

I would sweat so easily, look really pale and nearly pass out with bad dizziness.
Then admitted to hospital in sept 2011 as thought my IBS was crohns disease.. I was put on IV steroids.. shortly re-admitted again for exploratory surgery and had my appendix removed..

I was admitted again last june for rectal bleeding which was found and cauterised.. then a follow colonoscopy found inflammation which was unspecified under biopsy. So apparently I have "IBS"

My urologist actuay ordered the MRI and found the CM1 when I was 24.. im 25 now.

They are doing the right thing in ordering a c-spine MRI.. ideally a full spine imaging is best. But baby steps is good.

I have opted for surgery and due to have it on 5th July.. but it took me a year to make this decision.

Its so good that you are seeking info into CM1.. and that you can support her through this.
How is she taking the news? Xx
5

Anglyn, Thank you for support, Her test are today, We should know something hopefully by the end of the week or next week. I agree regarding the Mayfield Clinic is the best. I keep reading nothing but great things about them.



Anglyn said:

Mayfield is a great clinic! They are running the appropriate scans so you should find out soon if Chiari is the cause of her issues. A lot of her symptoms are seen with Chiari. I don't know enough about staph or c-diff to know the lingering effects of those. Keep us posted on her scans!

Best wishes to your daughter! She sounds pretty strong to deal with all that while going to school and caring for a son!

6

Im not surprised she has mixed emotion about the diagnosis… it is hard to take in.

I live in the UK - and im under MR Thomas Carroll at the Sheffield Hallamshire Hospital. Quite lucky really, as he covers the whole of yorkshire and lincolnshire… and I live in the same city as he does :slight_smile:

I also think it is harder knowing symptoms have started or became worse after childbirth. It is a big stress on your body (as you will know) and it is so hard having a gorgeous little toddler… but not having the energy to give her the time and energy she needs :frowning:

7

Be sure they check for spinal cyst, tethered cord, and POTS. my niece has the seizures and fainting, she has tethered cord and CM1. My daughter has CM1 and she passes out early in the day. I have CM1 with suspected Syrinx (cyst) and has tingelung as well as numbness. There are Chiari Institutes across the country. Be her advocate. I had to fight for my daughter to be tested after a black out spell and ER visits. Don't give up..