Chiari Online Support Group

Daughter diagnosed with Chiari Malformation 1

#1

My daughter is 22 years old and was diagnosed with Chiari Malformation 1 last year. She was having headaches and a MRI was ordered which incidentally showed the Chiari. Her tonsils are at 6mm. (Forgive me if I don’t use the proper medical terms)By the time we saw the first neurologist in January she was having multiple symptoms. Numbness and tingling to the hands and feet, dizziness, nausea, back of neck pain with head pain and pressure. The neurologist told her that the Chiari was no big deal and to just monitor it. She gave her nortriptyline and told her to follow up. We didn’t feel comfortable with that so we saw a neurosurgeon (actually his assistant) who said let’s try to manage the headaches and repeat a MRI in 3 months. Within the last 2 months her symptoms have gotten so bad that they are effecting her quality of life. She developed a sinus infection about 2 months ago and everything intensified. We decided to get a second opinion and saw another neurosurgeon 3 weeks ago. We were really impressed with the first visit, he was thinking she had a tethered spine. Ordered more imaging and told us to follow up the same day of the imaging to review it personally. Did the imaging Thursday and it was not a tethered spine and he basically told her that he thinks she’s morbidly depressed…What!!! My daughter has been in chronic pain for almost a year, the last 2 months I’ve seen her basically giving in to the pain. Like she’s a zombie. So yea she might be depressed but that’s not causing all of her symptoms! We had to take her to the er over the weekend due to the head pressure and pain, constantly throwing up, she says she can hear her heartbeat in her ears. They did a cat scan on her and she passed out from lying flat. Is that depression??? I’m so lost and don’t know what to do to help my daughter. The neurosurgeon basically referred her back to a neurologist for headache management. Please if anyone has suggestions, advice or a common experience, PLEASE HELP!

#2

Continue to fight for your daughter no matter what they say. The pain she is enduring is not from depression it’s from the Chiairi. Make sure when you go see the doctor’s ask them if they know anything about this malformation. Google neurologist in your area and see if they can help your daughter with this. These doctors you’re seeing may not know what this is because there isn’t much research about this. Even the neurologist I went to see earlier this year said was the best he could do for me now was to offer some kind of pain management and only do surgery if pain worsens or Chiairi increases in sizes.

#3

First of all mom, sending you both a hug. We know what your going through. Many of us have gone through much of what your daughter has gone through. Neurologist and neurosurgeons want to try medication management before considering surgery. They don’t want to do surgery unless it necessary having Syringomyelia or a very large Chiari. Some of us are not very candidates for surgery, especially those who have Ehlers Danlos Syndrome. Those with EDS and Chiari have to be treated with much care.
You said your daughter passed out, does she have low blood pressure or Dysautonomia? Your daughter has a 6 mm, I have a 5mm. Up in the help section, you will find a lot of information about Chiari, surgery, recovery and resources. I would educate myself and encourage your daughter to educate herself because you will be able to participate in the treatment for your daughter. I would ask her doctors to send her for a test called tilt table test for Dysautonomia. Your a wonderful mom who loves her daughter and wants the best treatments for her, so please be her advocate and teach her the same. One thing I will tell you will make her feel a lot better salt and electrolyte drinks to keep her well hydrated. Keep her in a cool environment and standing for a long time will make her blood pool to her lower stomach and legs. She will not be getting proper blood flow to her brain and if she passes out again, lay her down head lower than her legs.
I am truly sorry she is going through this. There are medications like beta blockers to help with those horrible attacks.
Don’t let them tell you she is depressed. She feels bad, I hear what your saying and know what she is dealing with. Studies shows that constant pain for long periods of time can make you have depression,but who wouldn’t get that way when your doctors are not completing their tests looking for additional disorders. The neurologist can order the tilt table test for her. In the mean time, go on your google search and check symptoms of dysautomonia.
One more thing, Please, Please if you go for a neurosurgeon, go back to Dr. Trumbles requirements for a Chiari neurosurgeon.
Please keep us all posted.

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#4

Thank you so much!

#5

Your so very welcome.

#6

Thank you, I will continue to fight!

#7

Your welcome! I know this a place for support knowing you are not alone but also a place to let out your frustration in a sense because there will probably somewhere who can help you and your daughter to go though this. Wishing you all the best, and continue to do research. You be surprised and reassured you are not alone.

#8

I am newly diagnosed with Chiari. My practitioner referred to a neurologist who was not familiar with Chiari. I did an internet search of neurologist near me that were familiar with Chiari and asked for a referral to one that was familiar with chiari. Before I had my appointment I started a daily journal of my pain and graded the pain form 1 - 10 with 10 being the worst pain ever. I also looked back and recorded auto accidents concussions and my family history and recorded them. Is there a history of scoliosis, spinabifida, or hydrochephales?

The neurologist and I agreed to do a conservative approach to making me comfortable. The four types of medication they prescribe for the headaches: antidepresents, beta-blockers, muscle relaxants and anti seizure. We decided on the muscle relaxants and they are helping.

Do an internet search of neurologist to find out who has experiance with Chairi and read as much as you can about Chairi. You both will need a support system. Keep a file of all medical reports.

Prayers to you.

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#9

Panda1994, this sounds similar to our experience so far - expect my 17 year old did not passed out from laying flat - my daughter was standing. First neurologist also thinks my daughter is depressed or has anxiety because she was not gung-ho to perform the tests in the dr. office and she didn’t want to get a shot - she already had been to er for reglan and benadryl drip 2 days before and wanted no more needles.
2nd Neurologist said he never would have sent her for an MRI, she just has migraines. I said, “A migraine that lasts for 4 months and has never stopped?” and he said, “sometimes there are people outside the norm.”
I just don’t believe it’s a migraine causing 4 months of non stop pain at 7 to 9, scale of 1-10. Along with dizziness, nausea, tingling in face, hand, feet, fainting.
Neurosurgeon (friend of family hundreds of miles away took a look at her MRI) says she has 8+mm herniation of cerebellar tonsils.

I’m looking for ways that you have all helped manage the pain. If anyone has recommendations for meds to help, or oils or massage techniques, please share. Nothing has helped my daughter.

#10

Yeah I remember when my neurosurgeon told me and my husband that I should see a psychiatrist. I remember how devastated I was. But I didn’t stop searching. It took me 3 years to get diagnosis. I was in a really bad shape. Walking with a walker, extreme dizziness, nausea, balance disorder, adrenals shut down and many other symptoms. I also had 6mm herniation.
I chose dr. bolognese for my surgery and I almost got my life back. Still have issues but I do very unconventional treatment (approved by my dr) and I don’t go to the hospital every 2 months for LP Idiopathic hypertension (fluid buildup) in my brain. Actually I don’t go there at all. The most problematic thing that I have is hyponatremia (low salt). I’m still in the process of figuring that.
My advise, search doctors and see them. Lots of them. Also read about the 2 types of surgery that there are out there. It’s important which approach you pick. I picked to remove my herniation so part of my brain was removed. I decided that because I refuse to have any more surgeries and risking having sagging brain it’s not in my dictionary. Chiari is a profeessive disorder. Carving bone on the inside to make space can only go so far… then what.
That’s why I picked more invasive approach and today, 3 years post my surgery I will tell you I function normally. If you never knew what I suffer from you would never be able to tell that I had 3 brain surgeries. Good luck