Chiari Online Support Group

Chiari in Chicago

Hello Everyone!

This is my first time posting on this site and I hope everyone is feeling as well as possible!

I’ve finally come on here I guess to share my story but also seeking advice on how to approach dealing with my Chiari.

I’m not sure where to start so I suppose I shall start when the migraines intensified.

I started getting severe migraines around Feb/March of 2015 after going to a new chiropractor. I honestly only joined because they offered sports/deep tissue massages! I know the chiro said I was starting to get rounded shoulders and that one leg was just slightly shorter than the other ( he didn’t say by how much). Overall he said to be conscious of my posture and that’s what I did. I remember throughout my times being there (Feb/March - June/July of 2015) complaining about having migraines just about every day that were pounding and the worst I had ever had before. I remember trying to look up why correcting my posture would bring on headaches. I eventually settled in my mind that maybe since you get headaches from poor posture or slouching that maybe for a while to get back to a better posture there might be a time period where I would be having headaches. But they didn’t subside. So eventually I started to smoke weed, I’m just going to throw it out there now! It was the only thing that helped me get past them since my body doesn’t seem to absorb Advil, Excedrin, Adderall, Ritalin, hydrocodone or anything in that family. Tylenol and Ibuprofen also never worked.

Sometime around June, I remember feeling like my mental state was just diminishing. It was hard to form sentences, thoughts, find or understand words that I knew I knew and more. I would just play it off as if I was just having an off day. When slowly it seemed like every day or every other day was an off day.

During this time I started randomly getting nauseated, driving, sitting doing nothing, any random activity. I would try to figure out a pattern. Nausea slowly led into random bouts of throwing up. Being completely healthy, minus nausea and vomiting, I had no idea what to contribute it to. The days when I would nausea first started out maybe 3 times a month and by October it gradually increased to once a week. Then in December and on it became every day.

At the end of December I moved to Chicago to start my masters in computer science. Between the middle of December and January 1st I had lost 10lbs. I don’t know if it was from throwing up, lack of appetite, I’m sure a mixture of various things.

At this point my symptoms consisted of vertigo, ((the kind where it felt like I was tilted on a board back and forth)), ringing in my ears, sometimes a piercing noise. Somewhat similar to what you might hear when you turn on one of the boob-tube type TV’s. ((this has happened throughout my life and totally thought it was normal. Nausea, vomiting, brain fog, ((felt like I was just cognitively declining)), Raynaud’s disease, ((started in 2013, in 2014 got bad enough where I finally got on Ropinirole)) weak legs, ((they would shake as I went down stairs and sometimes felt like they were going to give out)) dizziness/lightheaded, ((this I have had since high school when I first had an issue with anemia in high school. Eventually, they got my blood counts up but still had issues with dizziness.)) headaches/migraines and more.

Now my symptoms have expanded to irregular bowels, numbing in my face, pin prickling on my face and sometimes neck and shoulders, stiff neck and shoulders, the feeling of my muscles being tensed up without will. My migraines have turned more into the feeling of a vortex in my head like it’s sucking and pushing in on my brain while also ballooning into and outward expanding pressure. Now it’s begun to feel more like a pulling at the back of my head. Kind of like how if a spaceship were to get a hole in the side and one were to patch it up but there’s still that pulling from space (I know this not a plausible example but it’s just the feeling of draining and pressure at the back of my head). Just recently one of my migraines got so bad I didn’t know what to do but to go to the ER. I have had others like that but just never went, out of the assumption that they wouldn’t actually be able to help much besides pump meds into me, which is all that happened at the last trip. I suppose I don’t know what exactly would have happened in any other case.

I finally went to a doctor who ordered a CT-Scan and an MRI. Nothing was found in the CT but they did find my ‘right cerebellar tonsil extends below the level of the foramen magnum by approximately 0.4cm most compatible with inferior cerebellar ectopia.’ They also found that ’ bilateral minimally enlarged retropharyngeal lymph nodes, nonspecific’. And finally that I had a ‘tiny central posterior disc protrusion at C4-C5 and a minimal disc bulge at C5-C6’.

For a while, I miss read the 0.4cm for 0.4mm thinking I really didn’t have much of a Chiari and understood why doctors were making me feel so minimal about it. Finally, I have made the realisation!

My problem now is I don’t know who to trust. I have talked to a neurosurgeon who told me that nausea had nothing to do with Chiari and that he would ‘get my on a nice cocktail of medicine.’ Which I’m sorry just disgusted me, I don’t want to have rely on a handful of meds to subdue my symptoms and not know what is actually causing them. Another surgeon told me to completely forget that I had a Chiari because I kept bringing up different postural issues that kept making me think it was Chiari. Such as not being able to go rock climbing because of having to look up, or even looking at the sky. Turning around when checking lanes when driving, turn my head to talk to someone or just shaving my armpit has all made me nauseated.

My psychologist has said that if doctors don’t think there’s a relation that I should trust them. I know you shouldn’t read/trust what’s on the internet but when it comes from so many people describing my symptoms in the exact same way and able to explain better than I, it’s hard not to believe something is related to Chiari.

Other background possibly helpful information:
When I was about 1 yr old or less, I feel from a counter where they had to stitch my head closed. I also had another setup stitches when I was around 6 I was jumping between beds and didn’t duck under my metal bunk bed and had to get stitches from that. In either freshman year or sophomore year of highschool, I was in a minor accident. My friend was distracted and thought the car in from of them had turned but they hadn’t and we rammed into them. Also during my sophomore year in highschool, I was jumped by a random woman at homecoming. She pulled my hair and I hit it against a cement pole and remember blacking out. She apparently kicked me a few times as well. I never got went to the hospital to see if I had a concussion but am quite certain the possibility is high.

I guess at the end of my novel I just want to ask if

  1. Anyone knows any neurologist/neurosurgeons in the Chicago area (hopefully with BCBS choice insurance coverage) that I could talk to? I’m supposed to meet with Dr.Ninith Kartha at Loyola and have been working with Dr.Urban at the Diamond Headache Clinic.
  2. If you think there really isn’t a relation between symptoms and Chiari’s who as less than 5mm, or 10mm (which is the length I have been told by surgeons won’t look at Chiari unless it’s gotten to that point)
  3. What should I do about symptoms and finding a doctor? I can’t tell if I am just being stubborn and feeling like I am crazy, but my gut tells me it’s Chiari.

I have more symptoms and issues but I am horrible at describing anything and with this brain fog it’s hard to remember anything, so thank you for reading to this point! I just don’t know what to do, and I miss feeling normal and being able to do regular activities. Such as, sit on a couch without starting to feel discomfort and a migraine eventually.

Any advice or tips would be truly appreciated!! Again, thank you for listening!

Karrin

Dr. Cartha could be a good choice. She specializes in movement disorders. Mostly her research is in deep brain stimulation (at least what she has published) which is pretty far removed from chiari. That being said Anand Germanwala, MD also at Loyola is one of the best skull base surgeons around. Also worth looking into is The Chiari and Craniovertebral Junction (CVJ) program in the Department of Neurological Surgery at Northwester. i don’t have much in personal knowledge of these guys, but their publishing is solid and the presentations I have heard are top notch BTW my 2 cents is that you are more likley to have CVJ issues than Chiari issues from hearing your symptoms and you messing with atlas adjustments from a chiroquacker trying to fix migraine.

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Sorry you are having such difficulty. I shudder when you mention one medical
professional wanting to put you on ‘a fine cocktail of meds…’

From my experience, if you truly have Chiaris, drugs WON’T work - because your cerebral-spinal fluid is ‘plugged.’ I have a list of several dozen medicines that docs tried me on over my 10+ years of misdiagnosis. None of them worked at all - because none of them got to my head!!! Now I know!

Since my Decompression surgery, now ALL medicines work just fine! (But, don’t need them anymore… thank GOD!!!) The only medicine that really stifled my Chiari agony before surgery was Lorazapam - a benzo/tranquilizer.

Even now, I have it prescribed as just a last resort - stop gap measure if and when the Chiari pain returns on bad days. Lorazapam realy works - but gotta be careful because it’s in that addictive class. I do hope you find a good neurosurgeon.

My neurosurgeon did Chiari decompression surgery on patients from around the world. In fact, Chiari’s is all he does! The BEST!

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I would say I could agree with the meds not working for the pain that I’ve been having. I feel like the doctors think I’m making it up when I say it doesn’t work. It’s almost like they’re tired to do their job so I feel discouraged as a patient to divulge the severity of my pain because it makes me feel like I’m just complaining.

You’re neuro sounds great, I’m glad you were able to find relief!! I wish your neurosurgeon was in Chicago. Thank you very much!!

I will have to see if I can get an appointment with Dr. Germanwala. I’ve found some neurologists who deal with Chiari’s but none of them are in my network :confused:

I haven’t heard much about CVJ but I will definitely look it up and research a little more. Thank you very much!!

Karrin,
Yeah. When the pain is so unrelenting, the rest of the ‘normal’ world really doesn’t get it. That’s why it’s so great to have a site like this where there are Chiari folk who can relate! You wouldn’t believe how many years family and friends kept telling me my pains were “all in your head.” (that’s to say, I was making it up.) In the end, it WAS all in my head - once I was diagnosed with Chiaris. I was sort of able to throw it back in their faces and say, “Yes. It is all in my head! For real!” But, medically, before I was diagnosed, I even spent four years going to a Pain Management clinic. They were the ones who got me dangerously loaded up on opiates. Opiates sure worked - but NOT good for chronic pain!!! I do hope you get to see a good neurosurgeon. The decompression surgery has great potential for cutting into that pain!