A few more questions!

General
1

Hey everyone,

Hope everyone is feeling pain free today! I had a few more questions about this lovely disease and since you all were so helpful last time, I figured I'd throw them out there.

1. The fatigue. I've heard it's caused by chronic pain, but I am lucky enough not to experience too much pain on a daily basis, it's pretty minimal. It's also not sleep apnea - some at home tests showed the possibility of central apnea and the doctors didn't believe that would be possible in a 20 y/o so I did an over-night test and it came back negative. What else could cause the fatigue? Would it get better with treatment (decompression, etc)? How do you guys deal with it?

2. Can the cerebellar tonsils ever...resolve themselves? I'm waiting for my diagnostic MRI (could take several months to get) and I'm pretty convinced Chairi is the issue as it describes all my problems, including my dilated pupil. When my pupil first popped up 6 years ago, my MRI stated I had "low-lying cerebellar tonsils" but no mention of Chairi or a measurement. If I had low-lying tonsils when I was 15, I should still have them right? Like there is no way they have sucked themselves back up into my brain and I'm barking up the wrong tree thinking it's Chairi?

3. I know decompression is a treatment, not a cure, but does it resolve/improve certain issues? Like cognitive problems? I'm an english major who is now having trouble finding words, spelling things, major memory loss (I just to have a photographic memory) and I've developed a bit of a stutter as a result. Has surgery ever improved issues like these?

4. Has anyone else experienced a dilated pupil as a result of their Chiari?

5. Does anyone experience pain more on one side? For me, my pain is mostly on the right side - the right side of the neck, right ear, right side of the back of the head. Is it normal to hurt like &*^%ing crazy if you touch a certain spot on the back of the neck (right where the neck/head meet?)

6. Will this always impact my life? I know it varies from person to person, but I'm just trying to figure out a future career/if it will even be possible to work in the future or have a family or live life normally. Is it possible? This has been running through my mind lately and it's scaring me.

7. Finally, an opinion question. I don't know what a Chiari patient should or should not do, as I am still undiagnosed, but I currently work for a wedding photographer. This year, I'll be working 10 hour days in blazing heat as we shoot 32 weddings from April-December. My job mostly consists of wearing a 50 lb backpack the entire time, holding flashes/light umbrellas, carrying heavy equipment, walking long distances. I am already obese, which makes it harder, and I barely survived last wedding season (I needed at least 2 days to recover from a wedding, and I was no where near as bad last year as I am now, now I have hand/arm tremors and weakness, numbness, vision problems, worse fatigue and pain, etc). My question is...if I do in fact have Chiari, is this job too much? Will it be a risk or make things worse? Should I quit? I'd appreciate your opinions.

I'm sorry for this giant list, but you guys seem to be the only ones who understand. Many thanks in advance to anyone who reads through and answers the questions!

- Lissa

2

1) I am 15 weeks post-op and I have severe fatigue. I deal with it on a daily basis. I have to nap everyday! If I don't, I end up with more pain and get very agitated. I am hoping that it will resolve itself with time.

3) You are right, everyone is different. I still have many residual symptoms. Some of them have gotten better, but the pain, headaches and burning sensations are still very much a part of my life. I still experience cognitive and memory issues, although they do seem a little better.

5) All of my pain starts on the left side. Sometimes it is so bad it radiates to the right side. The pain is made worse by touching the spot where the nerve lies. If you get a chance, look up the anatomy in your neck. You will see where that nerve runs. It will make more sense.

6) It is hard to answer this question. Again, everyone is different. It seems as though Chiari will always be a part of your life, but the symptoms may get better over time. I am in the same situation. I was planning on finishing nursing school when all of this happened. Now, I have been told that I cannot do the type of work that I did before. I am not sure where that leaves me now. I am hoping for things to get better and then focus on a new career.

7) I worked as a NA in the ICU. I had a very hard time doing my job. It is important to try to stay active, but pushing it too much can make the symptoms seem worse. Heat and fatigue are what aggravates my symptoms. I wish that I could give you more answers. I wish there was an easy button, but unfortunately this is something that we all have to learn to adjust to. I am a planner and had my life planned out. Now, it all seems like it is up in the air. I try to take it day to day and adjust as much as I can.

*** If there is one piece of advise that I can give you....You have to be your own advocate with Chiari. It is not a widely know condition and a lot of doctors will give you the run around. Push for what you want and feel is right!!! You are the ONLY one who knows your body. If you don't get anywhere with one doctor, move on. Always get a second opinion. Good Luck!!! Keep us posted!

3

Thank you for all your advice! I hope you start to feel better soon and are able to figure out your future and career! I'll keep you in my thoughts and I will definitely will check out the anatomy of the nerves in my neck.

nicolee said:

1) I am 15 weeks post-op and I have severe fatigue. I deal with it on a daily basis. I have to nap everyday! If I don't, I end up with more pain and get very agitated. I am hoping that it will resolve itself with time.

3) You are right, everyone is different. I still have many residual symptoms. Some of them have gotten better, but the pain, headaches and burning sensations are still very much a part of my life. I still experience cognitive and memory issues, although they do seem a little better.

5) All of my pain starts on the left side. Sometimes it is so bad it radiates to the right side. The pain is made worse by touching the spot where the nerve lies. If you get a chance, look up the anatomy in your neck. You will see where that nerve runs. It will make more sense.

6) It is hard to answer this question. Again, everyone is different. It seems as though Chiari will always be a part of your life, but the symptoms may get better over time. I am in the same situation. I was planning on finishing nursing school when all of this happened. Now, I have been told that I cannot do the type of work that I did before. I am not sure where that leaves me now. I am hoping for things to get better and then focus on a new career.

7) I worked as a NA in the ICU. I had a very hard time doing my job. It is important to try to stay active, but pushing it too much can make the symptoms seem worse. Heat and fatigue are what aggravates my symptoms. I wish that I could give you more answers. I wish there was an easy button, but unfortunately this is something that we all have to learn to adjust to. I am a planner and had my life planned out. Now, it all seems like it is up in the air. I try to take it day to day and adjust as much as I can.

*** If there is one piece of advise that I can give you....You have to be your own advocate with Chiari. It is not a widely know condition and a lot of doctors will give you the run around. Push for what you want and feel is right!!! You are the ONLY one who knows your body. If you don't get anywhere with one doctor, move on. Always get a second opinion. Good Luck!!! Keep us posted!

4

Hey everyone! I hate to be that person, but I'm selfishly "bumping" this up the discussion line to see if anyone has some answers or opinions. I'm just not to sure what to think or do! :(

5

Hey Lissa-no surprise-given the similarities my of my daughter's symptoms & yours, I might have some answers for you. I'm going to start with myself, although I have not been checked for Chiari. My life has always been a collection of odd & quirky conditions, nothing intense enough to consider the Chiari, although I'd never heard of it before anyhow. Given all my research into her condition, I am now quite sure that Chiari is an issue for me, as well. Fatigue has been a lifetime challenge for me. When I did the sleep study, I was found to be borderline in like 10 different things. Apnea, narcolepsy, restless leg syndrome, & I don't remember what all. I'm thinking that maybe all the borderline things could be issues (or actually nonissues) caused by neurological control. I don't know, but I was thinking that you might want to get the results of your sleep study & check out the areas that might be borderline, or close to borderline.

I've always had this odd sleep pattern that I wake up and an hour later feel like I need a nap. I've never met anyone else who follows that pattern, except now, Codie does it, too. Interestingly enough, so does her sister, who I think may also have a mild case of Chiari. I've never had a doctor who thought the odd sleep pattern was enough of an issue to address it. Maybe not, but it is frustrating. I have to wonder, now that all 3 of us do the same thing-could it be a part of neurological control & so, the Chiari? The one thing I've found that makes night & day difference for me is an ADD medicine-Vyvanse. It settles into my system gradually & leaves it gradually. Adderall enters & leaves my body suddenly, making the fatigue go away, but then slamming me hard as it wears off.

I think that fatigue is one of the hardest issues to deal with, because people just feel like you need to get in shape, go to bed earlier, get up at the same time everyday, get involved in something that interests you, etc., etc. I'm usually quite nonfunctional with it, everyday. Not all day-but everyday.

The cerebellar tonsils:

My daughter had 2 different Brain MRI's at 2 different radiologists. The findings were the same, but the wording was way different. A doctor explained to me that the interpretation is subjective. Two radiologists can see the same thing and interpret their findings entirely differently. One might see a 6mm herniation as 'not a problem,' while another might see it as, 'moderate herniation.' Opposite sides of the coin when surgery is being considered. One of the results did not say what the herniation numbers were, just that they were not an issue.

I don't even leave the Radiologist now until they've given me the films. I just lug them around with us to each new doctor. Inconvenient but well worth it. Some doctors like the written reports, some prefer a CD, & some like to see the actual films, themselves. I prefer they draw their own judgments based on what they see, not what someone else saw.

I've done a lot of research & have never read that they correct themselves, I think it's more likely that the interpretations were just different.

Codie also has the dilated pupil(s). Some days both eyes are dilated, some days they are different sizes.


6

I'm not done-so I continue-

Surgery

From all I've read-surgery can help with those issues. The decompression with the patch tends to have more effective long term results. I have NO experience with the surgery-this is all based on my research. Codie can't continue on the way she is. We have to believe that the surgery WILL be effective. We've seen Neurosurgeons & they are cautious. They don't live with Codie. I'm going right to the Chiari specialists now. I wish I would have started out with a specialist. I thought that a neurosurgeon would be a specialist, but it turns out that some of them are not even current. I find more current research online than some have given me. It is possible that they tend to be so 'safe,' that they don't want to discuss the more recent findings, but I'm not ok with waiting to see how bad she can get.

Pain

I'm amazed at how sensitive Codie's pain can be to touch. I can't touch her nowadays unless she tells me I can. Her pain almost always initiates on the left side & journeys into the right side.

The Future

You'll find some way to make your life successful :) I keep telling Codie that once she makes it through the worst of this, other things are going to feel pretty minor. Pregnancy & Childbirth: a breeze after all this.

Photography

If it was that bad last year & you're worse this year, it sounds like it could be too much. One thing I've seen with Codie, is that she does have milder periods that she goes through, so you can hope for that. It sounds like your symptoms are progressing overall, though, as have hers. She is overly sensitive to heat & especially humidity. Do you find that? To heck with if you 'should' be doing all that, I'd guess (after watching my daughter) that you won't be 'able' to do all that. The more she does in a single day the more problems she has. Are you able to split your weddings with anyone? I would think it would be hard to give it up totally, but I would certainly consider ways to ease your days. From what you described it sounds pretty overwhelming given your current level of functioning. Codie kept pushing herself through her school days. She'd cry every morning getting ready for school. The nights were excruciating, coming home exhausted, trying to do her homework, not being able to sleep (insomnia) & then getting up the next day & trying to do it again. Not to mention her days at school. Trying to stay awake in class, keeping up face with her peers, not crying or screaming from pain in class, attempting to participate in groups, concentrating on tests. I finally told her that I would NOT allow her to go to school. It was too painful for both of us. Think about those kinds of things, along with your current level of functioning & pain. And Good Luck with that! Respect where you are at & take care of yourself. Do what you need to do & listen to yourself. It's not all in your head - or, well, I guess maybe it is :)

7

Yay Nicolee - I totally agree with that last paragraph.

nicolee said:

*** If there is one piece of advise that I can give you....You have to be your own advocate with Chiari. It is not a widely know condition and a lot of doctors will give you the run around. Push for what you want and feel is right!!! You are the ONLY one who knows your body. If you don't get anywhere with one doctor, move on. Always get a second opinion. Good Luck!!! Keep us posted!

8

Vonda, thank you so much for your advice and kind words. Heat definitely makes everything worse for me - I actually passed out last summer at a wedding due to what I thought was heat stroke, but I'm wondering if CM had some effect! What Codie is going through sounds terrible - if she ever wants to talk to someone close to her age, let me know and I can give you my email address!! She is lucky to have a mom like you taking care of her and watching out for her well being.