After years of being called a hypochondriac I finally have an answer.

[Asaidi]

My name is LeAnna and I'm 27 years old. I have been hopping from doctor to doctor for years trying to find out what is wrong with me. I finally got my answer last week: I have a Chiari Malformation extending 7-8 mm below my foramen magnum.

My history:
Diagnosed with Depression as a teenager
Diagnosed with post-partum depression after I had my son
Diagnosed with Trigeminal Neuralgia 5 years ago
Diagnosed with IBS at the age of 19
Diagnosed with Migraines as a teenager
Diagnosed with Ocular Migraines at the age of 21
Diagnosed with Carpal Tunnel at the age of 20
Diagnosed with Chronic Sinusitis last year
Diagnosed with Vertigo a few months ago

I have been going to a chiropractor on and off for 3 1/2 years
I have dealt with insomnia and fatigue for as long as I can remember
I have also been to an audiologist who said there was nothing wrong with my ears and that she couldn't find a reason for me to have hearing issues

A few months ago I had Carpal Tunnel Release surgery and that is where my story really begins. Over the past couple of months everything has increased like crazy. I'm getting stabbing nerve pains down my arm and legs, I'm lightheaded and dizzy, my head is fuzzy and I can't think straight or keep up with conversations.

After my surgery I was in PT as typical. My wrist healed perfectly and my pain was completely gone. They released me from PT with great hope. 5 weeks after my surgery I started getting the pain in my hand again. I went back and they retested me and said it was still released. They referred me back to PT. The arm PT did a bunch of tests and referred me to a neck PT stating it was coming from there. At the same time my chiropractor decided she couldn't do any more for me until I went to PT for my pelvis. All of my muscles in my pelvic area are extremely weak which allows my pelvis to twist and leaves me immobile from pain.

A few sessions into my neck PT my TN decided to flare up. It started on a Sunday morning and lasted until Monday night, and then it did something that had never happened before; it spread down my back and arm. Since TN is specific to the face I decided to call my doctor who wanted me to get an MRI to check for MS. I told him I was seeing a neck specialist so he decided to get one of my cervical spine as well. That is where they found the Chiari Malformation.

It has been almost a month since the flare up of TN, and I'm at my wits end. I have done quite a bit of research, but I'm terrified that the neck therapist is just going to do what everyone else does and say it is in my head. Even my friends and family are brushing it off as just "one more thing wrong with LeAnna."

My son is almost 2 years old and I can't even play with him anymore. I can't clean my house, I can't do crafts. I basically just sit and watch TV all day long, and that is not the person I want to be.

My questions are:

1. How difficult is it to convince the doctors that your Chiari Malformation is causing these symptoms?
2. Should I stop with PT and the chiropractor? I read one thing that says manipulation of the neck is really bad for it.
3. How do you deal with family/friends that don't believe your pain is real?
4. How difficult is the surgery?
5. Would I even qualify for the surgery at this point?

I'm just in need of some support as I impatiently wait for my appointment....

Thanks!

[selmaS]

Hi and welcome to the Chiari forum.
The first thing you should do is yes by all means stop the chiropractor....and possibly the PT depending on what area they are concentrating on....if they do not understand Chiari and doing your neck ...STOP.

Difficulty of this surgery depends on the individual....and surgery depends on how your Chiari is not only affecting you symptom wise but your overall health....

Make sure you research Drs and find a true Chiari specialist....one that will test for ALL related and non related conditions .

Have family and friends join you here on this forum....by reading about others may help them understand you....it is hard to get family to understand when there are so many Drs that don't get it.

If you need help researching Drs we may have some names for you  to research.....let me know if you are interested.

[Asaidi]

I've started researching specialists near me and there are none in my city. I found a few in Louisville Kentucky though. I live in southern Indiana so I could probably travel to St. Louis, Indianapolis, Louisville, or Nashville to see a doctor. Do you know any there?

My family see it as just another thing I have made up. Even though I have shown them the test results. They are also super religious and keep telling me that God will fix it for me and to stop going to the doctor. My husband is pretty much the only one that believes me.

[selmaS]

Then don't try to convince your family an let your hubby be your support....and the members here can also be your support.

The list of Drs below is not a referral nor an endorsement of those listed it is meant to be used as a tool to research Drs....the list is compiled by members here of Drs they have been to, treated by adn liked....only you can decide which Dr is right for you....so educate yourself on Chiari and ALL related conditions to help you make that choice.


TENNESSEE

Dr. Stephanie Einhaus
Semmes Murphy Clinic
Mephis, TN

Dr. Carl Hampf
Baptist Hospital
Nashville, Tennessee
800-668-9410
[phone]

Dr Reid Thompson
Vanderbilt Hospital
Nashville, Tennessee

Dr. Cheng
Vanderbilt Hospital
Nashville, Tennessee

Dr. Samuel Hunter
Nashville, Tennessee

University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
[phone] (Office)


INDIANA

Dr. Troy Payner, MD IU Health Methodist Hospital
Goodman Campbell Brain and Spine - Downtown Indianapolis
1801 N Senate Blvd Suite 610
Indianapolis, IN 46202
[phone] (Office)

[Asaidi]

Thank you so much! I will definitely do my research.

[selmaS]

If I can be of any help let me know.