Hello,
My Chiari doctor said I have 2.5-3mm descent in my tonsils but I am having severe symptoms I was wondering if others had a small descent as well and how they were treated?
I’m seeking other opinions but my first dr. recommended physical therapy (by a PT who specializes in Chiari) but i’m scared about this because my headaches/pain usually gets worse when I strain/exert/move around.
Has anyone else used PT or treated a small descent?
I always suggest that a discussion about the horizontal view of the MRI take place. Typically folks only look at/discuss the sagittal view, but the horizontal view is also necessary when discussing Chiari. It is a three dimensional blockage and requires a look at all angles.
It also does not hurt to educate yourself on what are the different structures in the foramen magnum and to ask your physicians what happens when they are compressed for long periods of time.
Also, ask your doctor what he thinks are Chiari symptoms and what his criteria is for treatment/surgery. Might be good to know.
If you see a physical therapist, they had better be good at motor control exercises (no traction or modalities … run if offered). With Chiari there are lots of specialized physical therapy assessment and treatment available
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I tried PT first and recommend it.
My herniation was not large and my images had been stable for years. I’d been diagnosed for 13 years plus before I finally truly needed the surgery.
The last two years before the surgery, my symptoms became much worse. I did do a long course of PT which was helpful. Being very aware of posture helped not add to the occipital pain issues. I also did myofascial release in the six months leading up to my surgery and it was a godsend as far pain management for me. It’s definitely worth trying!
My surgeon treats on symptoms rather than measurements, because of the complex nature of the Chiari. Though my herniation never looked severe, my neurosurgeon, who is a Chiari specialist absolutely thought I was a “classic Chiari” in my symptoms. My regular neurologist flatly said it couldn’t be causing my symptoms. That was, until I symptoms consistent with brainstem compression. My surgeon had said all along the main criteria for surgery was when I felt like the Chiari symptoms had begun to interfere with my life in an intolerable way.
I had surgery this past August. Even with my “small” herniation, I had no dural pulsation, which was part of the reason why my symptoms were so bad. And the difference I feel even only five months after surgery is incredible. I’m glad I did the surgery, and that I found the right timing for me. Knowing that I’d tried other less invasive treatments before the surgery, which is painful and has a long recovery period, gave me so much peace. It also helped buy me time to really mentally and practically prepare for the surgery, which really helped when I encountered some unexpected complications. Good luck with your journey!
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Dear Britt,
Goodness sakes! My tonsils were all of 1mm! That’s half the size of yours. Yet - my symptoms were so severe, I was nearly a complete paralyzed vegetable and brain dead after being mis-diagnosed for 10 years before getting the decompression surgery. All I can say it, “a plug is a plug.” Think of a cork in a wine bottle. Doesn’t have to be two inches long to plug a bottle. a quarter inch long plug STILL plugs a bottle! My neurosurgeon - who was a Chiari specialist (that’s the only thing he treated - treated patients from around the world) said that the length of the tonsil makes no difference in the severity of symptoms. He had one patient with an inch-long tonsil, and the only symptom he had was a little tingling in his finger tips. On the other hand, the doc had a patient with the 1mm (like me), who was in a wheelchair. Like me. Seems to me, the length of the tonsil makes no difference.
It’s your poor brain stem - and spinal cord - that’s getting the pinch. That’s why the symptoms will eventually spread everywhere - because that CNS (Central Nervous System) goes all over the place. I ignorantly tried battling my first couple years of increasing pain and dizziness by forcing myself into harder and harder exercise - thinking exercise cures all. It usually did. This time, it didn’t! I was literally on death’s door at the end of those 10-years of gradually worsening symptoms.
The two things my neurosurgeon said would affect one’s probability of full recovery from Chairi’s is: 1) the smaller length of wait between the onset of symptoms and the decompression surgery, and 2) the younger your age. Unfortunately, I had neither in my favor. My neuro-doc said “Two years max” is the longest one should wait between onset of symptoms and relief surgery. Also, I was well over 50-years old. That wasn’t good, either. BUT, I was willing to take the chance for even one minute of relief! And, I ended up with 75% recovery - and am loving it!!! That’s 75% more life than I was ever going to have!
Hope this helps you.
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Hello Britt,
My herniation was rather small too. However, it caused a cervical and lower back syrinx. I would recommend getting a second opinion and having the doctor rule out syringomyelia (mri (s) confirm or rule this out). I was older when I was diagnosed. Now, I believe my scoliosis has been caused from it as well.
I have went to physical therapy a few times. It helps somewhat. At times my hands and arms get so weak I can even open jars, tight doors. I have had decompression surgery. It has helped somewhat as well too.
Best piece of advice I can give you, is read people’s older posts on here as well. They will help. It really helps to read what people diagnosed with it go through. Then you realize you are truly not alone.
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I was encouraged by your posting. You were even older than I was when I was diagnosed. I can’t even imagine what you went though, unnecessary doctor bills 
, missing work, family thinking you’re fictional, etc. It actually started to affect my marriage until I was diagnosed. Trips to the family doctor, with no diagnoses other than stress, food allergies, etc.
I lost jobs because I just couldn’t make it into work. So, again, can’t imagine the torment you went though being diagnosed at 50. It is encouraging to hear of your success…
. Just curious, how is your current motor function, stiffness, weakness, etc.? Possibly, you do not struggle with those issues.
Thank you so much for your reply! I’m currently looking into Physical therapists and am hoping that will help! Good luck on your journey xx
Thank you so much for your reply I’m hoping PT will help, I hope you continue to feel well 
Thank you so so much for this reply- I’m so sorry your diagnosis took so long! Fortunately but also unfortunately three of my sisters have chiari so I was able to identify what this was pretty quickly because I had similar symptoms as they did. They unfortunately like you waited many years through diagnosis and surgery. I’m seeing another doctor in two weeks who will hopefully be more helpful, the last doctor I saw made me feel like I wasn’t in as much pain as I was trying to tell him and just wasn’t taking me seriously. Am I allowed to ask what specialist you saw? I’m in New York but am willing to fly anywhere. Again thank you so much for this reply it made me feel legitimate even with my small descent xoxo
Thank you so much for your reply and you are 100% right this site makes me feel like I am not alone. I also have extreme weakness sometimes, some of my symptoms I am questioning like what the heck is this because I thought symptoms were only in the head/neck/back but you are right the CNS goes everywhere. Thanks again and good luck! Xoxo
Dear catlover72,
My recovery from decompression surgery seems to be on the odd side; that’s to say, I have only met one other “Chiarian” who has the same problem I do. This odd ‘problem’ is that my good, function days cycle dramatically with the bad days. I have three days in a row where I’m quite functional. I can go to work - as long as it is not stressful - time-oriented - deadline pressure - no emotional stress sort of thing. But, every 4th day, ALL my Chiari symptoms return with a vengeance. 
It’s been so odd, because these every-4th-day “Crash Days” have gone on for 5 years without missing a single day! I also lose every 12th week. Each bad 4th day and the entire 12th week are full of the old Chiari paralysis, muscle-function-loss, headaches, loss of reflexes, can’t swallow, can hardly understand or speak language, heart irregularities, breathing stops, Irritable bowel kicks in, eyes won’t make tears or focus, etc… It’s AWFUL!
And yet, no one can explain it. Why do my Chiari symptoms always return on such a regular time-table?? 
My neurosurgeon couldn’t even explain it when I asked him.
So, I’ve kinda come up with my own diagnostic explanation - more-or-less. I am assuming that the regularity of the bad Symptoms is due to “Phantom Pains.” I’ve heard of the Central Nervous System having a propensity of doing that - ‘remembering’ old pains even though there is healing. I’m pretty sure I’ve healed as much as I’m going to from the Chiari decompression surgery. However, I also know it’s my brain stem that got the brunt of the ‘squish.’ And, the brain stem is the part of the brain that is in charge of your body’s time clock - your biorhythms and cycles and such. Brain stem knows when to put you to sleep. When to wake you up. It kept track of menstral cycle days… stuff like that.
SO… I believe that my brain stem’s “Bio-Clock” got sprung from the Chiari squish! (How’s that for medical jargon talk!!!) That’s why I THINK I have the regular every-4th-day phantom pain relapses of Chiari symptoms. And, that bad 4th day is when I lose 90% muscle function. Like you, I can’t tie a shoe, pour water from a pitcher, button a button. Why, I can’t even walk without staggering like a drunk! On that entire day, I try my best to do a whole lot of nothing. Since my blood pressure plummets every time I sit up, I spend the entire day on the couch, lying down watching TV. I used to never watch much TV before Chairis. Now, on that bad 4th day, I can easily pack in a 16-hour solid day of TV!!!
I’ve also learned that on these non-functional days, I have a very short fuse!!! Wow. I can get frustrated so fast when I can’t do even the simplest of tasks! Explosions of rage! I shock myself how quickly I can get angry. I don’t know about you, but Chiaris has made me considerably less easy going - like I used to be! That’s why on my bad days, I try to tell friends NOT to come visit. I get so grouchy! I don’t feel good. I get in a horrible mood! I lock myself in my house - for good reason! Do not let me loose on the world on my bad Chiari day!
I think the reason we get the loss of muscle function is because it’s the cerebelum - that very bottom chunk of brain next to the brain stem - that oozes out from under your skull. It’s the ‘cerebellum ooze’ that squishes down on the brain stem. Now, my neurosurgeon said he actually cut out - removed - the “ooze” from my brain. (I had all of 1mm of ooze.) He told me, “You won’t miss it.” Sometimes I think I do miss it! I think that may be why I get the regular muscle function loss. I THINK. I’m not at all sure. It’s a total guess. Our brains are so… bizarre! As a Chiarian, it seems with our brains, “you can’t live with 'em, you can’t live without 'em.” 
Even though I do get the 3 good, function days - stress of any sort can instantly bring on old Chiari symptoms, though. I’ve discovered that! Even fun stress - like Christmas cookie baking. One day, I went into a baking frenzy and made 6 batches of different cookies in 5- hours - and immediately went into an ‘uncheduled’ Chiari paralysis the 6th hour - that lasted the whole next day as well. Grrrrr. I hate that! I loved baking those cookies. But - it was the frenzy of it. Emotional stress can tank me real quick as well. In 2016, when my beloved Kritter kitty died very suddenly from congestive heart failure (he was my ‘therapy animal.’ Cuddled up to me on my bad days. Sweet animal!), I went into weeks of unscheduled paralysis and Chiari symptoms. It was awful! If you really do have kitties you can love on, I’d love to hear it. I tried to get another cat - but she ended up being a holy terror! She clawed and pounced - and stressed my CNS so bad, I was in a non-stop Chiari crash - until I had to get rid of her! I miss having a kitty. But, with Chiaris, I can’t just get ANY kitty. Has to be a very calm, gentle, cuddly beast. Yeah. 
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Your message right here gives me so much more hope to regaining my life! My symptoms just started 3 months ago after a pretty bad car accident with my family… we are lucky we all walked away from it! Anyways, they found my 5mm tonsillar ectopia, and only my PCP and Chiropractor consider it Chiari and causing my symptoms. They have referred me to a local neurosurgeon and he said not Chiari and not causing my symptoms, he referred me to pain management and this doctor was kinder and acknowledged the decent and my symptoms but feels it too isn’t causing my symptoms and wants to start with injections… I had my first round on Tuesday and today my pains are worse… but you have given me hope, so thank you!
Rachel
Dear Rachel,
Wow. My experience with Pain Management docs ended up in the epidome of a nightmare! Six years before Pain Management time, I had already gone through the gamut of dozens of other ‘specialists’ trying to find out specifically what was causing all my body malfunctions.
Needless to say, by the time I ended up at the Pain Management clinic, the only thing I had been diagnosed with was “Chronic Fatigue Syndrome” and “Fibromyalgia.” The PM clinic promptly put me on opiates: Norco led to Percocet which led to Oxyconton to Fentonyl, to Morphine and Ritilin, etc… Sure, those meds DID stop the pain very well! But, I had to keep increasing the dosage every 6 weeks. After six months, I was having to increase the dose every FOUR weeks. I had no idea I was developing an addiction.
After being on the opiates for nine months, my dosage of oxy had increased from 5mm to over 300mm a day!!! That was when I knew I was getting into toxic levels just to function at my job. I knew I had to quit the opiates… and I realized at that point that I probably was going to have to quit my job. The drugs were the only thing allowing me to get through the excruciating pain that no one could figure out (the “fibromyalgia”). I slowly came off all my oxy in 2 weeks. Even so, I ended up in a psych ward because by then, the pain was off the charts!!! The week I went off all opiates, I was in screaming agony! I just kept saying, “STOP THE PAIN! Do anything… but just STOP THE PAIN!” My mom took me to my Pain Managment clinic - and they sent me straight to the psych ward! They thought I was wanting to stop living. I just wanted the PAIN to stop! I spent two weeks in the ward while they put me on some kind of antidepressant which numbed the pain - but also completely and totally smothered what little brain function I had left at that point from the Chiaris. That was the year 2008. That was the year I pretty much turned into a vegetable - and stayed that way until decompression surgery in 2012. What a nightmare!
You are blessed the PM doc agrees that you have Chiaris - but he’s not smart enough to admit that he can’t stop Chiari pain. He’ll just treat the symptoms. He’ll teat the pain - but not what is causing the problem. You need to find a neurosurgeon who is a specialist in Chiaris. Be careful. Not all neurosurgeons even have a clue what Chiaris is!!! While I lived in Idaho, the medical establishment was clueless. When I moved to NC - I was diagnosed with Chiaris in 3 weeks! (And, it was a Chronic Fatigue Specialist who found my Chiaris! I had never heard of “Chiari’s” before then!)
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Hi there!
Oh my gosh, I cannot believe the doctors put you through all of that, I thought they are here to improve our quality of life and not just put a bandage on the issue… Lol yeah right, we could only wish all doctors truly had our best interest in mind! I am so glad you got the help you needed and deserved!
My pain management doctor does not believe in using narcotics. He uses nerve blocks, through injections. I am going to see a neurosurgeon who is listed on the Conquer Chiari National website as a specialist at Wexler Medical Center in Columbus Ohio on March 5th. So I am hoping he is a good Doctor and gets me on the right path! I am so nervous about it and pray we are headed in the right direction! Thank you Beth for telling me your story and giving me hope that we can get through this and have a new normal to our lives!
Hello! My doctor (whose actually a psychologist and not pain management) has been prescribing me a nerve medication as well! It’s an oral med called gabapentin instead of an injection but I’ve been finding that the nerve medication is the only thing that gives me relief and I’m happy to hear your doctor found this useful as well! I’m meeting with a Chiari doctor next week in NY but if it doesn’t work out I may look into other doctors to travel to who will help me. I’d love to hear how your appointment with this dr goes! Good luck!!!
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@Britt, hi there!
Well, I too was on Gabapentin, and it did nothing for me other than gain 10lbs lol! I am so glad that is working for you! The nerve blocks actually are injections that are suppose to help block the pain for “hopefully” 6 months to a year! I am still on the trial bases with it. I get another injection next week and if I feel 80% better than it will be consider affective form of pain management for me and I will get the nerve block injection that will last for 6 months or longer. The first injection actually made my neck feel a lot better, it didn’t touch my headache… but some improvement is better than none! I hope your appointment goes well also! I will for sure keep you posted on mine!
Dear MrsStevens,
I’d never heard of the “Conquer Chiari” website before. I just went and snooped on it. Interesting! I love its initial illustration of “Joe & Jane Average” brains versus “Joe & Jane Chiari” brains. I also like the very understandable explanation of Chiari “brain-ooze;” ‘the cerebellum crowds the spinal cord.’ I would very much like to keep up and take note of their research. But, I don’t want them thinking in anyway, shape, or form that I can help FINANCE any of this research! Chiaris disabled me horribly. I’ve been on SS disability $$ since 2011 - and seriously can barely survive financially. It’s awful. I’ve had cracked teeth for two years - but medicare doesn’t cover dental. Therefore, I’ve had to endure aching teeth for years! I WISH I could find a way to somehow earn extra $$$ to pay for things like fixing broken teeth - but every time I put out any extra effort (emotionally of physically) the Chiari’s symptoms smack me back into zombie-land.
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Hi there,
I am glad the website was helpful! I don’t believe that website will expect you to give any money. Have you joined any of the Facebook Chiari pages? They are extremely helpful as well!! I hope you are doing well!