Pictures - Please tell me what you think!

[Cryscodoll]

I am new to this so I don't know who sees what...I posted some new pictures if people can take a look and let me know what you think.  I don't take any of the opinions as a diagnosis...just opinions.  I am getting more miserable by the day with the pain. :(

[lilmiss1999]

I also have pictures posted. I have yet to be diagnosed but my symptom list is long and not getting any better. I looked at yours and it does show some cerebellum crowding as far as I can tell. By researching chiari I also noticed that you have a tilting of the top vertebra. That seems to be something that happens with chiari. Remeber it is the shape of your skull and other things that cause the blockage of csf and the herniation of tonsils (not the size of the herniation that determines if it chiari or not) . Good luck and I hope you find relief soon.

Jen

[Cryscodoll]

I started having headaches and pressure, and my ears were bothering me too.  I went to the doctors thinking maybe I had an ear infection or something and because I was waking up with headaches and how bad they were my doc wanted to do a cat scan.  After the cat scan the nurse called me and told me I had Chiari malformation and to see a neurologist...to get ahead of the game I asked if my doc could order an MRI so I would be ahead of the game because the neuro was pretty booked up...when the MRI came back they said I had no abnormalities...just migraines.  I have been having headaches, really bad pressure in my head that causes nausea...just going over bumps in the road feel bad..makes me nauseas.  The symptoms seem to just be progressing/getting worse.  Shortly after the diagnosis I started having really bad tension in my neck and pain also in my shoulders....sometimes I have the horrible pressure and no headache....gets worse when I am at work at the computer for long hours.  I have been getting confused and forgetting things...I walk in a room forget why...forgetting what things are called....a few times I have had a burning sensation in my toes.....I have had zero relief since it started...I have always had balance issues...I can be standing still and sometimes lose my balance like I am drunk.......at times I have pressure in my ears...since it started I don't want to be around loud music at all because of my head pressure and the seeming sensitivity to my ears....and muscle twitches....I looked at these and it's obvious something isn't normal but the radiologist didn't note anything in my MRI....

[lilmiss1999]

I have a lot of the same symptoms. Chiari was not noted on my Mri either. It came back "normal"  lol. I was the one that found out about Chiari and looked at my Mri before taking it into my NL and showing her. She has said that I have it but not what is causing my problems. She is really nice but when you have to bring possible medicalproblems to your doctor it is very unsettling. Hope I can get someone to take me seriousloy soon.  

[*Stormy*]

Well your account of symptoms sounds totally and completely accurate to how I progressed with Chiari. Don't feel too down about the radiologist not commenting on the Chiari...they said my brain MRI was normal too and I went on a ridiculous ride for 6 months while I kept getting worse. I am sure you have already been told this but I can't even express how important this is...find a good NS!!! A NL is a step in the right direction I guess but most of them are not trained in this condition and may dismiss it. A NS on the other hand knows a lot more and will take you more seriously. But again, you have to find one that is knowledgeable in Chiari. Ask the NL for a referral.

Carolyn

[Cryscodoll]

It is a new thing every day....today I started feeling pressure on the sides of my neck and made my throat feel tight like it was kind of pushing.  No problems breathing but it freaked me out a little.  It just seems to be getting a little worse every day.....you ever have like burning sensations in your feet???  I can feel where the source is and it's right at that spot where head and neck meet.....under the curve of the back of your head......

[*Stormy*]

Yes, the burning sensations were one of the first indicators that my legs were starting to get involved, with that came serious pins and needles and loss of feeling on the bottom of my feet. The burning and prickling is actually something that has not gone away with the surgery and I am guessing it may be permanent neuropathy.
As for the throat, that is a common feeling with Chiari too. Does your voice start giving out when you talk for awhile and do you have trouble raising your voice? Those were some of the first things I noticed when it started to affect my vocal cords. I also get some pretty intense spasming in my throat which when it first happened, made  me a little scared! The good news is that I have had those things for almost two years now and it never cut off my air supply or anything but it's not a pleasant feeling. To ease anxiety with having Chiari you have to kind of accept what will be will be and keep in mind that Chiari is VERY rarely ever fatal.  To me though, it sounds like your symptoms are progressing so I would really start working on finding a NS!!

Carolyn

[Cryscodoll]

The burner sensations feel like the hot part of icy hot!  I went over a bad bump yesterday on the way to work and my gosh it felt like I had smacked my head and got a concussion!  The pain and pressure ended up being so bad and the pressure sensitivity to my head was awful and made me nauseas.  I have noticed that my throat gets tired when I am talking a lot...I do seem to get really bad tension in like the way way back roof of your mouth/throat area.  For over about the last year I have been getting what I like to call my "man voice".  It sounds like I drank all night and partied...it's weird..I haven't had my voice start cutting out yet, but when I am either talking a lot or trying to speak at a louder volume I start to get a headache.  Most of the time I am trying to remain upbeat (pain meds help) because if this is truly what I have, I know that I have no choice but to figure out how to keep going forward...but some days I just want to cry.  My body just felt so worn out today...and I am not always actually sleepy but sometimes just tired..........

[n40066]

i took a glance at your pictures and with the ones you posted, it is impossible for me to tell if you have over crowding of your brainstem.  this over crowding is what would be responsible for many of your symptoms.  from your posted pics, it is also very difficult to ascertain your cm.  what i suspect, (and please bear in mind this is only my humble opinion.  i am not a radiologist) is that you have what is called chiari 0.  this, according to the medical community, is a herniation of the cerebral tonsils which is less than 5mm below the foramen magnum.   there are many members here that have chairi 0 and have even more symptoms than those that have a herniation of 10mm or more!  
some drs do not feel the need for a cine mri if they can clearly see a blockage at the base of your skull, it would be rather obvious that there will be a disruption of csf.  others insist on a cine.   it IS important to have a full spinal mri to rule out other problems and they all pretty much will agree to do that for you. ( to look for t.cord, syrinx,bilateral pars defect...) don't know if it will, but hope this helps you some.....
elizabeth

[Cryscodoll]

I have read about Chiari 0 and I was wondering if that might be the case myself.  One picture it looks like there might be crowding, but not obviously not being a neurologist I have no idea if I am making a correct guess.  I have never had these problems before, they just started suddenly within the last month.  The only issues that have been long term for me would be balance issues.  It just seems to get worse everyday...

You recommend insisting on a full spine MRI just to be on the safe side?  I had never even heard of Chiari until about a month ago when I had a Cat Scan and the nurse from my doctor's office called and told me I had it...

[Cryscodoll]

My biggest fear is that the neurologist is going to blow me off and say I am just having something like migraines.....

[classiechic]

Wow.....reading your symptoms is identical to mine. Exactly.

[Cryscodoll]

Have you been diagnosed yet?

[*Stormy*]

Well, if they called and said you had Chiari then I would say you do. It is pretty unlikely that they would say anything if they didn't see it. For many of us, like myself, even though I had a herniation over the 5 mm, the radiologist didn't even comment on it on the MRI report and neither did my NL!! So really it's not whether you have it or not, it's what is going to be done about it. Again, that's why we are so persistent about finding a good NS.

LOL..the man voice is a very good description!! I think that happens because our vocal cords get somewhat paralyzed and it is much easier to make a low sound than a high one. I have experience with losing my voice, but during this time I was a Beaver leader and would have to speak loudly above the noise for extended periods of time and that's when I noticed the voice loss. However, I absolutely hate going out to a noisy restaurant or something and trying to talk, not only does the background noise affect my hearing, but I feel winded from trying to push the air out loud enough to raise my voice and it triggers a headache for me too.

The icy hot you mention is a very accurate description. I also get what I call zingers which is like my foot was touched by a hot fire poker...but even more electric like that. Maybe like sticking your toe in a light socket? The sensations are so hard to explain!!

Carolyn

[Cryscodoll]

Today was more fun....my arms were aching and my hands started tingling...tips of my fingers in my right hand were starting to feel slightly lame.  My throat def gets tired when I talk a lot.  With the loud sounds - I feel the same way!  I used to love blasting my music in my car and now I am like ugh no!  It doesn't necessarily hurt my ears, but it feels like loud noises make my ear drums pulsate (it's the best way to describe it) and of course with the head pressure that never makes you want to hear loud noises!  Loud noises tend to almost confuse/distract me too much......when the pressure is at its WORST I get so confused....it's so great to be able to share these and have someone add perspective.  I am starting to have "man voice" more than my normal voice!!!  I thought it was an allergy thing but maybe it's not...as far as my neck and stuff it's turning more from aches into pains....man I hope my neuro doesn't blow me off.........

[*Stormy*]

Ugh...not fun at all!! I know what you mean about the loud noises, I was just the same way..now I find I can tolerate it more but there are still some days when it really gets to me and I can't even stand the kids talking to me in a loud voice. Like you said, it just gets in my head and bounces around in there!!

The confusion that you describe is probably the "brain fog" feeling. I used to get that a lot and I would feel like I wasn't even really there, I would see things but it just didn't feel like reality. Talking to people when I was like that was really difficult and b/c of it, I started to have a lot of social anxiety. I hated the confusion and memory loss, I had that way before being dx'd and it really scared me!!

When you go to the NL..have a list of all your symptoms (even ones that you have that you aren't sure are related) and a list of questions ready and make sure that you get them all addressed!! Then, of course, ask for the referral to a NS ;)

Carolyn

[Cryscodoll]

Yea the confusion definitely feels like a fog.  I just get so out of....not so great at multi-tasking these days.  Fortunately my boss has been understanding with me about all of this.  Now I am getting pins and needles in my hands and aching in my forearms, this just started happening the last few days.  Yesterday it was also feeling like my hands were sort of stinging.  This just happened all of the sudden, I don't know if that can be from the Chiari?  Between the brain fog and tylenol with codeine I don't remember much.. :(  I can't get through the day without taking anything...it hurts and is so uncomfortable.  Earlier today it felt like when I turned my head I could feel things like untangling in my neck and throat.  I also felt like my throat was crowded.......I've had that once and awhile before but never thought anything of it.  My mom will say something to me like 3 times and it's like I hear the voice but it just doesn't register I guess?  Did you get a lot of aching in the sides of your neck too, especially when you swallowed?

I've been reading that surgery is the last option for this condition..usually it's only considered if you have blockage of your CSF flow.  Is this true in your experiene??

[*Stormy*]

Well an understanding boss is a good thing!! When those things started happening to me I was getting near to the end of a course I was taking and although it really scared me I was just like..just finish and then I'll deal with this!! Once I finished though, it's like the floodgates just opened.

All the arm and hand stuff you are describing, can definitely be Chiari, I'm sorry to say :( All the hand and neck issues that you are talking about I had and it was really the start of things for me. I constantly felt like I had something it my throat, like someone was slightly choking me all the time. I had the achiness on the sides of my throat (I will point out that my achiness seems to come from the muscles in my neck along each side). Another point that you may want to get checked out...have they ever tested your thyroid? The reason I ask is that when the neck and throat issues started for me, they realize that I was hypo-thyroid. I found out much later that I had Hashimotos (auto-immune thyroid disease). In my case, they decided to blame my thyroid for all my issues until things got out of control. So I'm not saying that I think it is causing your issues but it can definitely compound them and so it's worth getting that checked out. If you are hypo-thyroid it can also really effect your energy and the brain fog. When they finally got mine sorted out (post op), I did find that a lot of that improved.

I know EXACTLY what you are talking about when you mention how people are talking to you and it's like you can't turn on the switch to answer them!!  Sometimes I feel so rude because people say something to me and then like 30 secs later I'm like..I'm so sorry, you were talking to me and I didn't answer. I also find that I get really easily distracted and find it hard to tear myself away. My kids are like..oh no, mom has that look on her face again! I do it more when I am tired but I have to really fight it when I'm driving (for obvious reasons!)

One other thing I was going to note...t3's were AWFUL for my head!! I know that you need pain relief but I am wondering if something else would be better? When I took them I got the dizziness and brain fog threefold and I had to spend the days I took them in bed. Just a thought...you may have a clearer mind on something else.

In my experience, I was dx'd very late along...my herniation was not recognized by either the radiologist or my NL so I was just strung along left to get worse and worse for another 6 months. I happened along to see a NS by sheer luck and that's when he mentioned the Chiari. He still at that point didn't say for sure but he went and got a 2nd opinion from another NS and they both agreed that I would benefit from the surgery. When he called me back about having it done, I honestly jumped in with both feet...I felt like I was facing a wheelchair if I didn't. He did show me an area of my brain that was very crowded and he felt like there was little to no room for CSF to go through. I also did meet the criteria of the 5mm. Unfortunately, if your case is not as cut and dry, it does seem harder to get to the point of surgery. A lot of these NS sort of put their career on the line b/c there is risks associated and some professionals STILL don't believe that Chiari is the culprit!! For you, your best chance of getting someone to listen is to keep a log of your symptoms and write down dates to show the progression. That is the main thing, if they can see that you are steadily progressing then they will be more likely to consider you. So keep writing this stuff down for when you see the NS!!

Carolyn

[Cryscodoll]

Hello,

I actually had my thyroid checked this past October and it was normal.  I guess that I have one plus on my side, and that is that I don't think there is anything else that they can blame my symptoms on.  I have called the neuro's office a few times with questions and every time the receptionist has told me that the doc I am seeing is wonderful and I will love him.  I am keeping my fingers crossed.  

Last night I started getting the burning sensations again in my feet.....it's the weirdest feeling!!!!  It happens especially in my big toe.  I tried getting on the treadmill this morning and it was like I was drunk trying to stay on track.  I should probably start clipping the emergency cord to me! lol

I developed a little depression stint in October and the med I am taking I am really limited on what meds I can take.  I think that is why my doc prescribed the Tylenol with codeine.  Sad part is, I actually think a little clearer ON it than when I am in pain without it.  You know where I really confuse myself?  (I never take it within so many hours of when I know I need to drive)  I have noticed that I get confused when I am driving.  I don't get confused with red lights but with green lights.  I'll go through the intersection and I feel this moment of panic and get confused thinking OMG was I supposed to go through that???  

I do the same thing with conversations sometimes...even more at home...I'll stop and go wait what?  

If you are having symptoms that doesn't always mean your CSF flow is affected right?  It's not that I want to have this wrong with me, but I think it's having something that validates your symptoms.  If you keep having these problems with no reason then people start to doubt the validity of them. : /  

I am taking college classes on top of working a full time job.  I only go to school part time but I tell you, by the end of the day I am wiped out.  I feel the best that I am going to feel when I wake up in the morning......

[*Stormy*]

That's definitely the same thing for me too...I wake up in the morning and feel okay..sometimes for hours and other days (like today) it's only minutes. It's a sad but strange thing to look forward to...that few minutes of being somewhat pain free.

ALWAYS put on that safety cord if you are on the treadmill!!! I never go on without it as I get the waves of drunkenness as well, I actually shortened my cord so that if I just back off a little, it will stop it.

Again...I have to say I know exactly what you mean about the driving!! I feel like I am almost driving in a video game and everything is surreal and that makes me feel unsure and panicky...I have done the same thing with the red lights and sometimes I find myself slowing to a stop at the green ones!! Then I'm like..wake up...that's green!! That has been a lot better since surgery except for just lately, a lot of it is pain and fatigue related...the pain keeps me awake at night causing fatigue.

I know all about the place you are in right now...it was one of the greatest moments of my life to finally have my NS validate how I was feeling. I really felt that I was one step away from being called crazy and then I would be left to continue to get worse. I KNEW that wasn't the case but it is pretty hard to stand up for yourself when you are constantly being beaten back down. That's why you have to keep pursuing this...it's really the only way to get validated.

There is more to it than just blockage...though that is a big indicator. It depends if your brain is pushing up against your brain stem and if it is crowded, it could be causing damage to your cerebellum. Then, there's just the stuff that no one seems to know the answer to....what really happens to your brain when it doesn't grow the right shape? A lot of those questions are still unanswered.

Carolyn

[Cryscodoll]

Did you feel pressure in the back of the roof of your mouth?  Did your throat ache when you would talk a lot?

[Cryscodoll]

I called my doctor and told him all the stuff that has developed and he called the neurologist and got me in sooner.  I am seeing the neuro tomorrow...so relieved.  Now hopefully I can get some answers...

[selmaS]

  Wonderful that u got in sooner...good luck and do post an update : )

"selma"

[Cryscodoll]

Thank you so much, I def will!