Chiari and physical restriction question from a newbie

General
1

Hi Everyone

I am so glad to have found this board. I would like to share a bit of history...

I have been clearly symptomatic of something for a bit over a year now. It started with my fingernails changing and spooning (koilonychia) - which, I am curious: have any of you ever experienced this? The change was fast and dramatic, and knowing that if your fingernails and/or skin have odd changes that you ought to have it checked out. I had other symptoms too, but my fingernails is what drove me to the doctor. I had already been dx with Fibromyalgia, so I attributed most other symptoms to that. Besides, so many doctors over the years probably thought I was nuts with my symptom complaints, so I quieted down my complaining.

After seeing a GP, Cardiologist, Dermatologist, and Endocrinologist, as well as a therapist (grin), I began to suspect adrenal issues. During this time I was tested for Addisons, had a heart catheter, chest and abdominal CT scans, and an unbelievable amount of bloodwork. Some things came back odd, but nothing glaring. I then began to see a new MD with a very open mind who still suspected adrenal issues. After playing with other tests and trying some meds, I did homework and wondered about my pituitary gland and asked her if she could PLEASE order an MRI. No pituitary issues...but guess what? My cerebellar tonsils 4.5 mm below my foramen magnum. Wow.

In reviewing the symptoms, I am not shocked, although I am stunned. I have so many symptoms that i attributed to being clumsy, acting ADD, or fibro. What frightens me is that the symptoms have ESCALATED in the last 2 months. I am clumsy, I sway a lot when I stand, dizzy when I get up, my double vision is worsening, I stop in mid-sentence and stare at someone trying to remember what I was saying, numbness and tingling in my hands, and intermittent excruciating headaches at the base of my skull that I thought was muscle strain. My list goes on and on like all of you...

I want to type so much more and I have so many questions, but if I make this too long, maybe no one will read it...haha. So, I will ask my first question:

If there is a chance I will eventually end up in surgery, before that time are there things I should be careful of or avoid? For example: lifting and carrying heavy objects, digging, pushing a wheelbarrow, etc. I don't do that stuff all the time, but they were the best examples I can think of.

Thank you for reading my post and I look forward to your replies!

2

Gunna,

Welcome and thanks for such a great post. So many of us have had similar experiences of searching for years for the answer to what is making us feel so awful. I went to so many medical professionals and had so many tests before I was diagnosed that I had a rude PCP tell me I had to get a "New hobby" I thought hobbies are suppose to be fun? Getting blood drawn and being poked prodded and told I was crazy for 4 1/2 years was definitely not fun!! It does sound like you had some good doctors though that took you seriously. That's a blessing itself. So many doctors do not take Chiari seriously either and call a lot of our symptoms anecdotal or made up.You really need to find a doctor that treats Chiari patients and that is usually a neurosurgeon. Most of us have not had good luck with neurologists helping us. Surgery is a treatment not a cure. It's done to keep symptoms from progressing and to lessen some of the existing ones. Everybody is different as to the outcomes of surgery. Lifting and straining can definitely aggravate symptoms and we often pay for it for days after by having a headache being tired and sore. You want to minimize the stress on your neck and play it by ear as to what you can tolerate and what you can't. Rollercoasters are a big no no. The G Forces can make the herniation worse. Also Chiropractic manipulation can really cause damage. So glad you became a member and feel free to post any questions or concerns that you have for the group to chime in on. Everyone is very compassionate and helpful.

Wendy

3

Yeah, don't do those things!! haha

I'm sorry to hear about your pain but that's awesome you found something in your MRI!

Those are exactly the types of things you shouldn't be doing at all. I find that doing anything that involves reaching above my head really messes things up too, almost knocks me out.

Anyways, I would not recommend you do any of those activities, starting immediately. I can't tell you how painful it can get... it seems like the pain and symptoms just accumulate the more active you are and then take a long time to recover from. I'm sure you'll learn your own limits but please just be careful!

4

Hi all, my name is Melissa and I am new to this board as well. It's such a chnage to hear from people who are experiencing the same symptoms I am, it's a relief to know that I'm not really crazy after all, lol. I have a very complicated medical history before this Chiari even showed up so I feel like I'm heading up another hill in my roller coaster ride. I was born with a congenital heart and lung disease, have broken my right hip twice when I was 7/8 years old, had scoliosis surgery at 12 which damaged my heart, and also suffer from MS, CFS, anemia, fibroids and more. This Chiari diagnosis has been the recent problem with symptoms of dizziness, vertigo, numbness in my fingers of both hands, loss of concentration and bad headaches at the base of my neck. I have a referral to a NS and hope he will have some answers for me about how helpful surgery might be for me. The neurologist feels like surgery will help but I haven't had surgery since I was 12, because I had such a hard time during that surgery, doctors told my parents due to my complicated medical conditions I should avoid general anesthesia. Of course that was 20 some years ago and things have improved in the medical field. Anyhow, Gunna, I know how you feel and if you ever need to talk or vent, I am here. Please keep us updated!

5

Thank you everyone for your responses! I do have a question that your posts brought up. Is avoiding some of these things we have talked about for my own comfort, or can they do more damage? The rollercoaster made sense, but some of the yardwork I do doesn't make me really experience pain, just dizziness if I bend over and then stand up.

I did have an interesting experience a couple of weeks ago and would love your thoughts. I went inner-tubing a couple of weeks ago, twice. The tubes have a head rest and a couple of times I would get out of the tube and swim around, but for the most part I sat in it. About an hour or so into the 2.5 hour trip, my hands began to go numb and by the end of the trip they were almost totally numb. I thought it was from the cold water, but that logic made no sense because my feet were fine, so I just kind of blew it off. But, when it happened the second time, it concerned me. Now that I have my MRI report and it points to Chiari, I am wondering if it was the way I sat with my head cocked back on the head rest for most of the trip. Thoughts?

6

I'm pretty new to this too. I was diagnosed at the urgent care, and no neurologists/neurosurgeons in my area have wanted to take me on as a patient (so far). My balance has gotten so bad I am constantly holding on to walls, chairs, whatever is near when I walk. I don't leave the house anymore. My double vision is worsening, as are the headaches. I'm so happy you have a doctor who is taking this seriously!


I would say listen to your body. If you're doing something and you start feeling dizzier, getting a headache, etc., then stop or slow up...

Good luck, and welcome to the group!
Katrina W.

7

So, Katrina and everyone else...how can a doctor not take this seriously or not take someone on as a patient??? Is holding yourself up by walls not enough??? I mean, these symptoms are outward and obvious. I don't understand.

Katrina, how far past your foramen magnum is your cerebellar tonsils?

I haven't yet seen a NS but have sent over my MRI and coordinator is supposed to give me a call. I suppose that they might not want to take me on as a patient. If they don't, I have no idea where I will turn.

8

I don't know what's going through their heads. The neurosurgeon the urgent care doc/radiologist referred me to took THREE WEEKS to look over my file. I finally called them and they said they decided not to take me on as a patient until "further testing" could be done. They didn't say what testing that might be or where I might obtain it. So everything was sent to my primary care doc. She has called several neurologists and each has said they're unwilling to take me on. I think it's because the doctors in my area aren't familiar with Chiari and keep passing the buck.

My cerebellar tonsils are 5 mm below the foramen magnum. My symptoms have been going on for years but were at first attributed to fibromyalgia. What got me into the urgent care was an unstoppable bout of tachycardia + double vision that has still not resolved itself. That was five weeks ago. I was told not to work or drive, I still haven't gotten a paycheck because no one wanted to fill out my disability paperwork, I've been out of the house maybe half a dozen times since this began... I'm so frustrated, sad, hurt. I just want this to be over with. I believe everything that happens to us is for a reason, so we can learn and grow, but I am having trouble finding the silver lining in this mess.

gunna2gtthr12 said:

So, Katrina and everyone else...how can a doctor not take this seriously or not take someone on as a patient??? Is holding yourself up by walls not enough??? I mean, these symptoms are outward and obvious. I don't understand.

Katrina, how far past your foramen magnum is your cerebellar tonsils?

I haven't yet seen a NS but have sent over my MRI and coordinator is supposed to give me a call. I suppose that they might not want to take me on as a patient. If they don't, I have no idea where I will turn.

9

Where do you live, 7th house? Have you found any NS on your own that you might be able to go to? Do you have a copy of your MRI?

I was also dx with Fibro about 11 years ago...funny how that works. My cerebellar tonsils are at 4.5 mm. Because my symptoms have kind of stepped up the pace, I am a bit nervous now. Of course, I had no idea these particular things were "symptoms",, I just thought I wasn't paying attention, tripping on things, grabbing things to hold onto when I sometimes stand up and am dizzy, and attributed my loss for words mid-sentence to being ADD-ish. Now that I read the Chiari symptoms after reading my MRI, it puts this to a whole new level. I am kind of scared to one day in the near future have the symptoms escalate to something really frightening and not be able to get in anywhere.

10

I'm in Spokane Washington. I know in Seattle there is Dr. Ellenbogen at University of Washington, but that's a five hour drive away...

There were things I didn't think were symptoms, too. I thought I had tinnitus from listening to too much loud music, I thought I was just clumsy and dropping things, walking into walls, etc. I thought I just had regular migraines. I thought I was just lazy, getting tired all the time for no reason. The Chiari diagnosis makes SO much sense, it's scary. I keep wondering if I would have listed all my "symptoms" if someone would have caught it sooner.

I don't want to step on my doctor's toes - they really are trying hard to find a neurologist/neurosurgeon who will take me on. They're just busy and work odd hours so it's taking awhile. I just got off the phone with my PCP and they're going to call the headache clinic AGAIN to see if they've had a chance to look over my file. If they don't take me, I don't know what I'll do. Maybe I will just have to bite the bullet and go to Seattle... We can't afford it but maybe I can couch surf until I get into a hospital...

gunna2gtthr12 said:

Where do you live, 7th house? Have you found any NS on your own that you might be able to go to? Do you have a copy of your MRI?

I was also dx with Fibro about 11 years ago...funny how that works. My cerebellar tonsils are at 4.5 mm. Because my symptoms have kind of stepped up the pace, I am a bit nervous now. Of course, I had no idea these particular things were "symptoms",, I just thought I wasn't paying attention, tripping on things, grabbing things to hold onto when I sometimes stand up and am dizzy, and attributed my loss for words mid-sentence to being ADD-ish. Now that I read the Chiari symptoms after reading my MRI, it puts this to a whole new level. I am kind of scared to one day in the near future have the symptoms escalate to something really frightening and not be able to get in anywhere.

11

Great post Bill....It is horrible trying to work with your arms over your head !!!!

Bill Zern said:

Yeah, don't do those things!! haha

I'm sorry to hear about your pain but that's awesome you found something in your MRI!

Those are exactly the types of things you shouldn't be doing at all. I find that doing anything that involves reaching above my head really messes things up too, almost knocks me out.

Anyways, I would not recommend you do any of those activities, starting immediately. I can't tell you how painful it can get... it seems like the pain and symptoms just accumulate the more active you are and then take a long time to recover from. I'm sure you'll learn your own limits but please just be careful!

12

You need to find an NS, not an NL. Neurologists have no idea how serious of an issue this is. My NS ws great during treament, now my NL says its basilar migraines. He doesn't seem to think chiari was an issue even though I have decompression surgery for it. It's very frustrasting. Good Luck

7thhousedoula said:

I don't know what's going through their heads. The neurosurgeon the urgent care doc/radiologist referred me to took THREE WEEKS to look over my file. I finally called them and they said they decided not to take me on as a patient until "further testing" could be done. They didn't say what testing that might be or where I might obtain it. So everything was sent to my primary care doc. She has called several neurologists and each has said they're unwilling to take me on. I think it's because the doctors in my area aren't familiar with Chiari and keep passing the buck.

My cerebellar tonsils are 5 mm below the foramen magnum. My symptoms have been going on for years but were at first attributed to fibromyalgia. What got me into the urgent care was an unstoppable bout of tachycardia + double vision that has still not resolved itself. That was five weeks ago. I was told not to work or drive, I still haven't gotten a paycheck because no one wanted to fill out my disability paperwork, I've been out of the house maybe half a dozen times since this began... I'm so frustrated, sad, hurt. I just want this to be over with. I believe everything that happens to us is for a reason, so we can learn and grow, but I am having trouble finding the silver lining in this mess.

gunna2gtthr12 said:

So, Katrina and everyone else...how can a doctor not take this seriously or not take someone on as a patient??? Is holding yourself up by walls not enough??? I mean, these symptoms are outward and obvious. I don't understand.

Katrina, how far past your foramen magnum is your cerebellar tonsils?

I haven't yet seen a NS but have sent over my MRI and coordinator is supposed to give me a call. I suppose that they might not want to take me on as a patient. If they don't, I have no idea where I will turn.