Chiari Online Support Group

My story... I need your opinion!

Hello all,

My name is Jess and I am a 23 yo living in the Midwest. I have had chiari-like symptoms since I was 17 yo. Mine include: head/neck/shoulder aches, especially upon exertion, foggy memory, extreme lethargy on the daily, often trouble with word finding, facial numbness upon exertion, nausea, lightheadedness … I feel like the list goes on and on. The first MRI I had done, the report was normal but mentioned “mildly low lying cerebral tonsils”. I didn’t know what that meant. So I continued to see my neurologist for pain management as they told me it was migraines. They prescribed me multiple medications but nothing has helped.

Recently my symptoms have gotten progressively worse, particularly the headaches and lethargy. I have a headache almost every day. They’ve gotten so bad that I’ve been to the emergency room 3 times in the past 9 months because I was throwing up and my headache is unbearable. Finally, I sent my MRI to Dr Dan Heffez at the Wisconsin Chiari Center in Milwaukee, and shortly after I had an appointment with him. He was the first doctor to diagnose me and agreed that despite my chiari only being 5mm, it was still likely causing my symptoms. He ordered me to wear a cervical collar for 2 weeks to rule out neck instability before any invasive approaches, but said that he believed the decompression surgery would be beneficial to me. He was so thorough and spent over an hour in the room with me explaining everything and doing an in-depth neuro exam. I thought he was awesome.

Which is great! It was finally the first time I was given an answer to why I feel like this and it was overwhelming. But I am still terrified. So I decided to get a second opinion… it wasn’t from a chiari specialist, but another neurosurgeon. She said she didn’t think I even had a chiari and was baffled he even offered surgery (and openly laughed at what Dr Heffez said, which kind of made her lose any credibility to me).

To say the least, I am more confused than I was before I seen either of them. I have almost all the normal symptoms and what Dr Heffez has said to me all makes sense, but I still don’t know what to do. I’m worried I am just taking what Dr Heffez has told me as fact because it’s what I want to hear, that there are finally answers behind this madness. I want to feel better and live my life again, but I also don’t want to have an unnecessary brain surgery and then not even feel better.

Any suggestions? Anyone’s experience similar?

Thanks!
Jess

It sounds like you have Chiari malformation I would go get a 3rd opinion if you have a place called Polaris neurosurgeon anywhere near you they are the best number one neurosurgeon in the world to me I would say for you to go there but you need to see a neurosurgeon because they’ll identify it quicker than anybody else could

Hi Jess. I strongly recommend Dr Heffez. He performed my surgery back in 2006. I traveled from Arizona to see him. Nobody could find out what was wrong because I had minimal herniation. I spent 2 1/2 years searching before I found him on the internet. All my symptoms fit Chiari, but my MRI was normal. I called Dr Heffez and within a half hour he called me back. I sent him my MRI and a week later I was on the phone with him again. He said he almost couldn’t see the herniation, but finally did. He said I needed to be seen. I flew there for special testing and he told me if it were him, he would have the surgery. So I did. He said it was way worse than what the MRI showed. I did not get complete resolution of my symptom but have improved a lot. I trust Dr Heffez and think he has the utmost integrity. I hope this helps.

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This is extremely helpful. Thank you for telling me your story. If you don’t mind me asking, what symptoms did not go away and what ones improved? Is it a huge difference? My main thing is headaches so even for just those to be gone would be life changing.

I would say my symptoms are 75% improved. I had no headaches for years after the surgery but currently get one now and then. I ocassionally get dizzy but nothing like the vertigo I experienced prior to surgery. I still suffer from fatigue and neck and shoulder pain but I also have cervical spinal stenosis which causes a lot of the same symptoms. I had a severe case and couldn’t function for the first 8 months after symptoms began. I had sudden onset of vertigo when I stood up from the couch one night and it never went away. I soon developed pressure in my head, severe balance problems, headaches, neck and shoulder pain, and hypersensitivity to light, sound, and vibration. I couldn’t hold my head up for very long and always felt like I was being pushed on when sitting or pulled to the left when I stood up. If I stood on even the slightest uneven ground, I felt like I was being pulled over. I often felt like my head was being pushed down and like there was a weight in the back of it. I felt like I had been poisoned. I couldn’t believe someone could be as sick as I was and be alive. The worst part is that nobody believed me. Dr Heffez saved my life.

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This is super helpful. I am glad he was able to help you so much. I really hope that is the same case for me. Thanks again!

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Where is Dr. Heffez located? I was diagnosed with a Chiari Malformation in February and my symptoms are progressively getting worse. I have dizziness, unrelenting nausea, pressure in my head and ears, pain in my neck and shoulders, sensitivity to sound, tinnitus, insomnia, numbness in my hands, feet and face at times. I’m feeling completely robbed of my life and my freedom. I can’t eat and I can’t sleep. I’ve been told my chiari malformation isn’t “compressive enough” to be causing my symptoms, yet I’ve explored every other possibility and done everything I’ve been asked to do and they’ve found nothing. Only the chiari. I even went to the emergency room a few weeks ago after being unable to eat or sleep for 3 full days. They wrote me off right away as having bad anxiety and put me on a psychiatric hold labeling me “gravely disabled”. I spent over a week in a psychiatric hospital where I was treated for anxiety just to be told that it wasn’t anxiety and that I should go back to see my neurologist. I feel like I’m losing my mind. I’m waiting to hear back from UCSF right now, but this Dr. Heffez sounds like he knows what he is doing. I’d be interested to get in contact with him if any of you have his info.

He is in Milwaukee, WI. To get an appointment with him, you fill out the online questionaire on the Wisconsin chiari Center website and send a recent MRI to them. Then he decides if he wants to see you and will set something up.

Thank you for your quick response!

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I so agree with 02895! I highly recommend seeing a specialist for Chiari’s. I went undiagnosed for 10 years in Idaho because no one there ever heard of Chiaris.
Not only that, but many neurosurgeons in NC where I live now said I didn’t have Chiaris because my 'brain ooze" was out of the SIDE of my skull and not medial down the back. They all missed it! Said I didn’t have it! Only a Chiari specialist found it - and fixed it! I am also now 75% totally much better since surgery. Love it! Also, any neurosurgeon who says you “ONLY” have a small tonsil sticking out… turn tail and RUN! My specialist told me that the length of the tonsil makes no difference in the severity of the symptoms. Very small tonsils can have huge debilitating symptoms, whereas huge tonsils may have small, minimal symptoms. And, every variety in between. Yeah. See a specialist who knows what they are doing.

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This should be a Chiarian’s mission statement. Haha. I woke up with a headache and I really needed to hear this - so thank you!

Hi Jes, I was diagnosed in Jan by Dr Heffez. I also have a 5mm herniation, but also congenital cervical spinal stenosis. Read my profile. He recommended surgery too, but I am 55 and decided to live with my symptoms. I don’t think I have any syrinx, but the MRI was only done on head and neck. I have not gotten a second opinion yet. Do you live in Wi? I am in Port. My youngest daughter is 27. I wear a soft collar sleeping, doing chores and a hard collar driving. It helps lessen all my symptoms and pain. Tina from WI

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Hi Jess, I just read your profile…St Paul! Cold winters like WI. It took 54 years for me to get an answer to why I had a weak neck, fainting, seizures, lightheadedness and stingers that would shoot from the base of my skull up into my head while growing up. As an adult I started with severe migraines, daily headaches, dizziness, (head, base of skull, neck and shoulder) pain, numbness in hands and arms, speech and swallowing issues, dropping items, weakness, tripping, and confusion at times. Crazy right, I think I had had about 7 MRIs and it wasn’t seen until 2012, BUT the dr never told me. I went to a neurologist in Dec and he saw it on the old MRI from 2012. Then I went to Dr Heffez for another MRI, laying down, I wonder if it herniates more while sitting up. I think so from what I read. Good luck on your journey. Glad you have an answer! Tina from WI

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Hello! I am originally from WI - Eau Claire area - but yes, currently living in St. Paul. I’ve heard that sitting MRIs are a better indicator as well, and it makes sense, but I’ve never had one. I’ve also never had a full lumbar MRI either, but no syrinx in head/cervical spine was found. I need to get a soft collar to try out. I haven’t yet just because I’m unsure if I even want to go through with the surgery. I’ve had a weird headache the last two days where if I look to my right or left with just my eyes, not turn my head, it hurts. The best way I can describe it is it’s like someone is pulling the nerve in the opposite direction that innervates the muscles that is used to look to the right. I don’t know. Every day I am a little bit closer to opting to do the surgery because I am in so much pain :frowning:

Sudden changes in the weather and the realization you now track barometric pressure and weather forecasts in order to plan you pain
medication and activity level for the week is something we all have to do now so living somewhere where you have cold weather or rainy weather will mess with your head your headaches will be worse​:disappointed_relieved::cold_sweat: