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Chiari 1 diagnosis no help from Dr's
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Chiari 1 diagnosis no help from Dr's

Recently diagnosed with Chiari and have seen neurosurgeon, who treated me like I was a waste of his time.  Said that because I did not have CSF blockage, this is not my problem, and that depression and severe anxiety are probably the cause of the symptoms (he spent all of 5 min in the room with me and was very short and rude).  He would not even give me time to ask questions, and the few I did get out he did not address.  I have been fighting with several different symptoms for about 3 years that have limited my ability to work.  As of now the symptoms have caused me to lose my ability to drive and to go to work, so yeah I have some anxiety.  The headaches, dizziness, heavy head, numbness/pain in all limbs and memory loss (these are just a few of the problems, and the most current ones) have definitely become more prevelant and have rapidly decreased my life. All I want to do is sleep, because then I mostly don't feel the pain, so I go days that I am sleeping up to 15 hrs a day.  Thank goodness my children are all grown and out of the house, but they see the difference and are getting increasingly scared.  Myself, I feel like they all think this is in my head.  I cry alot because all I want are some answers, compassion from my drs and some help.  I desperately want to go back to work, and just feel good.  I am only 40 and generally a very active person, but now getting me up and out is just too much.  The longer I am up the dizzier I get then the heavy head and headaches really kick in and all I can do is lay down and hope for the best.   In the last 3 years I have been diagnosed with the following: IBS, depression, anxiety, want testing for menieres, migraines, and inner ear infections (these are just the things I can remember).  I have done all that they have asked only to never get a diagnosis or meds that help.  Currently I am taking about 3 mg of xanax a day just to keep the symptoms at a somewhat tolerable level.  My balance has alway been a problem, just thought I was a clutz.  Also through my life I was diagnosed with borderline hypoglycemia, auto-immune deficiency and need for chiropractic adjustments to help with the neck and shoulder pain.  I know my body and I know that something is wrong but there seems no light at the end of the tunnel.  When I found out about the Chiari I felt some type of hope for relief only to have the light I recently found had burned out.  Since then the symptoms have continued to get worse, and the body pain and headaches are getting more frequent and painful.  I do have several other appts with Neurologist, Ear Nose Throat Dr (to test for the menieres) and they wanted a halter monitor put on.  I have had an echo and it was normal.  Please give me some advise as I am starting to feel like I am losing control of my life and health.  Is this all in my head, am I doing this to myself? This is the way the specialist have made me feel.  My regular Drs have been wonderful and I feel they are truly trying to help, but they don't have the expertise in Chiari.  Your site has given me hope, but am still skeptical.  I live in Indiana and as far as I can see there are no specialists in my area.  I don't want to live like this the rest of my life and be a burden on my family.  Do you have any suggestions, I am ready to just give up.
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Your symptoms sound kinda similar to mine.  I have the thing where I have to lay down...and I haven't heard of a lot of other people on here who do.  When I get up, the dizziness starts building, followed by nausea (feels like motion sickness), and eventually headache.  Laying down flat is a nearly instant cure.  Does that sound the same to you?  I have a lot of other symptoms, but that's how it all started and that is what has remained consistent.

Don't give up on the dr thing.  If your issue is indeed Chiari, you're going to be told "No, that can't be it" many times!  Just remember, no doctor can know everything...and many are poorly educated about this condition.  Do your own research as arm yourself with knowledge.  I've been there..so has nearly everyone else with Chiari.  It's terrible!

Definitely go to another specialist!  Will your insurance allow you to go without a referral?  If you need one, will your PCP give you one?  If there is someone within a reasonable distance that specializes in Chiari, go to him/her.  Or if you're willing to travel, go for it...I did eventually.

Regarding the depression & anxiety...there's two things I personally would recommend thinking hard on, not that I'm an expert or anything.  

1) Are you depressed & anxious and is that making your symptoms feel worse than they are?  I'm not saying your symptoms aren't there, but being depressed will put you in more pain and no one needs that.  

2) Maybe don't tell your doctors that you're depressed or anxious.  Personally, I would leave out anything that could lead them to come to that conclusion themselves...but, that's iffy because you don't want to lie to a dr or leave out something that could be important.  Use your judgement.  But if you tell a dr that you cry a lot and sleep all day, they're going to send you out the door with antidepressants and nothing more.  Their decision for treatment should be based on your physical symptoms.

I hope that helps some..please keep us posted, and don't give up!
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  I don't think that I am depressed, just frustrated and tired of hearing we aren't sure what is causing your symptoms. As far as the anxiety goes, my PCP diagnosed me with that well over a year ago.  I do admit that the symptoms do magnify when I have what I call an anxiety attack.  I have been taking some anti anxiety meds and can't rule out that they are what is making me sleepy, but it does seem to calm me down and tone down the effects at times.  
  As far as laying down, I do feel a little better, but sleep is about the only way to get rid of the dizzy, nausea headaches.  The headache almost always comes back as soon as I get back up, but is at a much more tolerable level.  I just know that the longer I am up on my feet moving around the more lightheaded and unstable I get.  Sitting down at first signs of the symptoms keeps them from causing me the nausea, but then the headaches comes back.  Then my head starts getting heavy and I feel like I can't hold or balance it.  
  As for the traveling, I am not too far from the University of Michigan, who I have researched and they do have a chiari specialist. Unfortunately my PCP wants me to have more testing before they will even consider another referal.  So I have another 2 weeks to complete 4 more appointments to rule out anything else.   Thank goodness one is a neurologist, and maybe she can sit down and explain things to me and help me understand better, or refer me to a specialist.  I do know that I haven't had the CINE MRI, not that I want any more tests, but have read that is the only way to see if the CSF is moving properly.
  I do thank you for your advise, until I found this website, I was beginning to think I was loosing my mind, which by the way at 40 my memory can sometimes be compared to a much older person.  I find myself stopping in the middle of a conversation only to not remember what we were talking about.  Once reminded I can usually get back on track, but that is not me at all.  My kids just keep saying I have too much other stuff on my mind to keep up with the unimportant things and that's why I do it (gotta love your kids, they'll say what they have to so you feel better).
  I will update to let you know as I get through all of this and I really thank anyone who has any advise.
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I went to occupational therapy at the recommendation of my ENT, before Chiari became more plausible.  If your dr thinks that would be good for you, they can test to see what kinds of movement cause your dizziness & headaches.  My OT drs were very thorough.  For me it turned out that my dizziness was caused largely by eye movement.  They gave me exercises that made the dizziness more tolerable.  Just a thought.

Glad the anxiety meds help a bit...but I have heard that the vast majority have a big fatigue side effect, so it's good you know that might be it.

Oh and the memory thing...you'll see a lot of that on this forum!  My short term memory has always been bad, but it got a lot worse a while after I got sick.  And I'm only 23.  Definitely tell your dr you're concerned about that.  Do you ever feel a foggy feeling in your head?  It's almost like feeling drunk, in my opinion.  Brain fog is a symptom of Chiari.  Many of us, self included, also have trouble finding words.  I'll be in the middle of a conversation with someone and have to stop because I can't think of the next word..sometimes I forget what I was even talking about.

Good luck!  Waiting for testing *****, but it sounds like they're moving quick and at least you'll have lots of information to give to your doctors.
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620923_tn?1405964489

  Hi and welcome to the Chiari  forum.

  SO sorry u r dealing what we here have dubbed  "the royal chiari run around"

This is Drs that do not recognize what is in front of them and we run from Dr to Dr trying to get a dx and treatment just to feel better.....sigh.....

  To feel anxious or depressed bcuz of this is not uncommon or unexpected...and bcuz we have compression of the brain stem it is also a given as well....the Drs do not seem to be able to connect the dots as to what is affecting us....unless they r a true chiari specialist...so do make sure u research dome Drs to find one, know that u may have to travel to get to one.....we do have a list here compiled by the members of their Drs names...this list is not meant as a referral, but a means to help u get started on ur research---http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186


   "selma"
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Please don't feel like your alone.  I know I was in the exact place that you are at right now.  It is very flustrating not having a doctor that would listen.  I definetely wouldn't give your first doctor you mentioned the time of day.  You don't want a doctor who won't listen.  I had a friend who I talked to often about my problems.  All simialar to your's and I also thought I was crazy, but keep  being persistant.  You know your  body and you know there is something wrong,  Don't stop until you find the doctor that you are comfortable with.  Believe it or not there is a a dr out there for you.  It's a hard thing to say, but be patient and you will find the answer's that you are looking for.  Chairi is a hard thing to diaganois.  I found out I had a lot of other issue's on my journey of finding Chairi.  I have fibermylgia, TMJ, depression, anixety. etc.  I think it all revolves around Chairi.  We are all here for you and are here to help.   Wish you find your answer's soon.
Just don't give up
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So glad to have support out there.  Saw my PCP this morning, she is trying some different types of anxiety and pain meds for  management of the headaches for now.  She still wants me to see ENT doctors, which I promised to keep the appt, and to go ahead and see the neurologist.  While I was there I actually got the written reports for the MRI and they saw mild degenerative disk disease.  In c3-4 c4-5 c5-6 and was curious if this is something I should be concerned with, because of the chiari, or if this is normal.  It did state without signigicant space narrowing.

I have found 3 Chiari specialists fairly close, 2 are pediatric at U of Michigan and 1 doctor I found and IU Medical.  

As for the brain fog, yes definitely, and have had spells like that all my life, but always joked it off as well just a dippy blonde, unfortunately lately it's more scary to me than a joke about my hair color (or my age now).

So for now I will try these new meds, by the way they are Paxil and Elavil (both antidepressants/anti anxiety meds) and keep pushing.  I just want to thank all of you for your encouragement and advise, this site has helped me alot.

Dorcie  
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620923_tn?1405964489

  DDD or degenerative disk disease is normal degradation of the disks....this happens with age, however, those of us with chiari tend to show earlier signs of it and since u  do not have space narrowing that is good and something that ur Drs will keep an eye on.

I totally understand the brain fog and noticing the changes in my self as time went on...and now being post op seeing  some of my old self returning...but  some of the chiari lingers and I know it  will not all leave, so I will laugh when it happens now...as getting upset will not help much.

Many Drs use antidepressant meds for pain....so this is common practice to get these meds when we do not feel we need that type of med....

I know it can be dis-concerning as we look to the main reason a Dr might RX a med...but many have multiple uses.

   Let us know how they work for u

        "selma"
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