Scared!

[Antere]

Good morning, I am 32 a year old female, new to this and very scared. I have had headaches for as long as I can remember, 8 years ago I had a CT scan that revealed I might have had trauma when I  was little, but overall "normal". They diagnosed me with migraines.
4 weeks ago I went swimming in a stream and came back with an earache and pressure in my right side of the head. I was put on antibiotics and was told it was an ear infection. After 2 weeks my condition would be the same. I spoke to my chiropractor who suggested I should get an MRI, he said "its better to know whats going on than to live in fear of the uncertainty."
My results came in this Monday August 22,I was diagnosed with Chirari Malformation 1. (10mm)

I have been crying myself to sleep everyday since then.
The fear is paralyzing!!

Everywhere I see they claim that it is not mortal,and can be lived with, however I see people have passed away due to complications. Nobody he specifics of the complications. I would love to know that there are people out there are are still people out there that have lived with this conditions for years after the diagnosis.

I have seen my PCP who was very supportive and said he would refer me to a Neurosurgeon, he explained the process with the NS and said the experiences he has had with other patients in this condition, is that they are very conservative with surgery.

I am aware I may have lived with this my entire life and just now found out, but the fear is getting the best of me, it doesn't help that I have bad anxiety.

Can someone please, please help me?

[Galant2424]

Make sure to look into other surgical options before jumping into decompression. Decompression usually only provides temporary relief before symptoms return and progression continues.Tight or diseased Filium  is a major cause of chiari and syringomyelia. I had chiari, a syrinx, syringomyelia, mild scoliosis and several bulging cervical discs. I Had a simple surgery in Barcelona with one night in the hospital. Doing fantastic. 100% of my symptoms were gone within two days of surgery. Doctor here is now invited to serve on the new worldwide chiari and syringomyelia task force. Global expert. Know many other people who had the same procedure and all doing great years later including small children. France and Italy Healthcare system will pay for the surgery in Spain. The doctors in Barcelona will review MRI's and history for no charge and let you know if you are a candidate for their procedure.
http://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/

[Antere]

Hello

[VMZ14]

Antere I live in Dallas too how are you? I was diagnosed in July 2014

[Antere]

Hi VMZ14
I am doing better, a little less scared.
I had my Neuro Surgeon apt.
( Dr. Bashay)
He assumed me I didn't need surgery, he said they mild symptoms I have may have another underlying cause, he thinks pressure in my head due to liquid not draining properly.
I was referred to an optamologist and a sleep apnea expert.
This has helped a lot with my anxiety.

[selmaS]

  Do some research on the Drs too...do not just go because they are on our list.

Good luck today...it's normal to be nervous.

[Antere]

Thank You, I will see if I can get a referral to one of these from my doctor.
I have my Neurosurgeon appointment this morning and I'm feeling a little nervous.

[selmaS]

Below is a list compiled by the members here of Drs they have been to, treated by and liked...it is not a referral nor an endorsement of those listed it is meant to be used as a tool to research Drs.


  TEXAS

Dr. Jeremy Denning
Dr. Richard Jackson
Dallas Neurosurgical and Spine Associates
Presbyterian Hospital of Dallas,
Professional Building III,
Suite 220,
8230 Walnut Hill Lane,
Dallas, Texas 75231
Phone: [phone]

Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax

Dr. David Jimenez
UT San Antonio Health Sciences Center
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
210-567-5625 • FAX [phone]
Adults and Pediatrics
San Antonio , TX 78229-3900

Dr Dong H. Kim
Mischner Neuroscience Associates
6400 Fannin Suite 2800
Huston, TX
713-704-7100

Dr. Rob Parrish
Methodist Hospital
Huston, TX

[Antere]

Yes please!!!

[selmaS]

  Oh I agree and felt pretty much the same when I was researching the condition.

I found after speaking with others that had surgery with good and some not so good outcomes as to what was done differently and then what was discovered for those with the not so good outcome and most if not all had un-diagnosed EDS...those with the outcome also had it but knew before hand and I was told their Drs took precautions to help minimize set backs or issues.

Once you educate your self on Chiari and ALL related conditions you will know if the Dr you are with is a true specialist...I do have a list of Drs in TX...would you like the list to research the Drs?

[Antere]

I guess when we're dealing with the brain it does scare me Into thinking I might not be able to enjoy my kids.
So many stories and so many outcomes...I know the reason for my headaches and other problems now...however, it seems like things are still and will always be uncertain.
Selma you mentioned the need of a Chiari specialist, I am not sure if we have one here in Dallas or Fort Worth, I will look into it and hope that in the event I do find one they will take my health insurance.

[selmaS]

  Since Chiari is congenital ( since birth) and the timing of when the symptoms are triggered into flaring are different for each of us....it is not easy to say if or when you might need surgery.

I have one grown child who is expecting her first child....and I was 48 when I finally was DX'd with Chiari and related conditions....and I was 49 when I had surgery....I am not sure why you feel you might not be able to see your children grow up??



As I said having the right Dr is key !

[Antere]

Ho SelmaS, Thank you for your answer. This forum has really helped me.

When my doctor fist said " we have seen this before" it was a small relief in the ocean of uncertainties I have.

Just like you mentioned above my doctor also said that the NS would most likely want more tests to determine  how this is affecting my health before they jump into the surgery. He also said if I wasn't satisfied with the first opinion he would send me to another NS until we had several opinions.
He assured me that if they determined that I would not need surgery soon, he will work with a neurologist to help me treat my symptoms.

I am still waiting for the NS appointment. You all seem very knowledgeable, in you opinion how long can someone truly live with this?
What are my chances of watching my kids grow up?

[selmaS]

  Hi and welcome to the Chiari forum,

I know this is scary ...I was very scared when I first was DX'd too.....

Know you are not alone....

It is true not everyone needs to have surgery with this condition....BUT there are more tests to have to help see just how your Chiari is affecting you and your overall health.

It is possible to have surgery and come out the other side better then you were going in....I know I am.

Conservative with surgery can mean several things....just what do they mean....?

Also be aware there are many Drs out there that treat Chiari but are not as well informed or experienced as a true Chiari specialist....educate yourself and do research on Drs.