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Chiari Malformation ignored by drs
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Chiari Malformation ignored by drs

Thank you for all the information I've gotten from reading the post in this community.  I have never posted on any medical forum, but am at a loss and need some help.
I am from a small, rural upstate NY area. I have been seen by the local physicians for most of my life, for everything from sinus infections to childbirth.  I have always been active and an athlete - at 35 I even ran my first marathon!  For the past several months I have dealt with fatigue, weakness, debilitating headaches, arm and neck pain, and tingling in my arms, legs, and scalp.  My PCP referred me to a neurologist who saw me once, ordered b12 blood tests, then brain mri, then c spine mri.  I would go weeks between tests, not hearing anything from the neuro until I called to check (I think their office is a little annoyed with me).  The nurse I spoke to most recently said other than minor protrusions in my c spine, everything was normal and the dr was referring me back to my PCP.
I was devastated.  Not that I want anything wrong with me, but I feel like I need some resolution to this daily pain I live with.  I called my PCP who said the neuro suggested fibromyalgia or pain associated with depression.  He had not been sent the mri results and the neuro did not share them with him, so I went to the radiologist and got a report directly from them.  
Other than mild disc degeneration and two moderate protrusions, the report said:
"the cerebellar tonsils are moderately low lying approximately 7 mm inferior to the foramen magnum.  This is consistent with a mild form of a Chiari one malformation.  At this level of cerebellar ectopia the symptomology is very variable and clinical correlation and followup films are recommended."
The neuro never mentioned this to me or my PCP!!  She certainly never ordered followup tests...  My PCP seems confused (as am I), unfamiliar with Chiari malformation and says my symptoms are "probably not" related to the radiology report if the neuro did not think it significant.  
So he is stuck on either fibromyalgia or depression.  I feel like it is something physiological (due to the sudden onset and severity of the headaches - and affect on my normal life!!)  
Does anyone have any recommendations  Because I'm in a rural area, I don't have access to many drs... my insurance requires a referral from a PCP for specialists (which he did...).  I don't want to insist on a second specialist, only to deal with the same run around.  How do I go about finding a doctor who will listen to me?
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15 Comments Post a Comment
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1309085_tn?1273749882
Hi and welcome. I am so sorry about what your going through. One of the hardest parts of Chiari is the uneducated doctors we run into to. The ones that say "oh, it's nothing to worry about", it can't cause those symptoms etc. You need to research and find a doctor that is Chiari knowledgable first. They have a list on here but don't just take that, do research on your own and talk to people. Never be afraid to ask for a second or third opnion. It's your body, you know somethings wrong. Your symptoms can very much be Chiari related and you need some follow up tests. It not the herniation that causes the problems, it's the crowding in the brain. You need a CINE flow study. Many have little herniation but huge symptoms and others have huge herniation and no symptoms. You said you had an MRI of your c spine but Chiari specialists recommend MRI of the whole spine. But i would start with finding a Chiari educated doctor. That is your best path to take. Don't give up and educate yourself.
Sam
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Avatar_m_tn
Hi and welcome. You will find that most people here will say you need a Chiari specialist or a Neurosurgeon with Chiari experience and this is important, many doctors are not up-to-date on CM.
People with this malformation have other related issues that need to be ruled out. A full spinal MRI along with a CINE MRI would be needed to check for CSF (spinal fluid) blockage and issues like Syringomyelia or a Syrinx. So your best option is to find a NS with CM experience.
There is a doctors list here, this is a list of doctors that members have used  but always research the doctor you choose.
The link is in the health pages at the top right of this page :)

Ray
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I'm from upstate NY as well and am having similar problems with Dr's not taking my symptoms seriously.  If I continue to not have any luck, I have been told to travel to Syracuse or Albany (1hr and 1.5hrs away respectively) for another opinion.  There are downsides to small towns for sure!  So you might have to consider the same.
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1179332_tn?1297482590
Hello and Welcome!!

Find an Neurosurgeon that is experienced in Chiari, ASAP!!! Your experience is so close to mine that it is scary....I went through 6 months of progression to the point of debilitation all b/c my PCP and NL chose to ingnore my symptoms and in the case of my NL, ignore the Chiari on my MRI. Don't let this happen to you!! When I found a good NS who offered to take a look at my scans, he diagnosed the Chiari right away! I also found out that my NL wasn't even doing the right tests (IE testing my gag reflex, which I don't have one).
A lot of members here have emailed their scan pics to one of The Chiari Institues. For a small fee, the NS there will review them and then decide if they need to take on your case. Is that an option for you? I'm sorry, I live in Canada so I am not good with locations in the States. Also check this thread out of specialists that other Chiarians have recommended, maybe one is close to you?

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

Whatever you do, don't give up...and don't let them tell you that it is from stress or anything else!! With this condition, you have to fight for yourself as many, many drs don't recognize it. You can see how real it is just by the # of ppl on this site. If you need any help please PM me and I will do what I can!

Take care
Carolyn
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620923_tn?1405964489
Hi and welcome to the Chiari forum.

Well as u can see from all the above threads that until u get to a true chiari specialist u will get drs that do not recognize chiari as the cause of symptoms (read the poem at the top of the forum by Dr Oro) so most of us have BTDT with the emotional roller coaster u r on from this/these drs visits.

Many of us also have to travel to get to a specialist...u may want to look at the thread Carolyn posted and see if ne of them work with ur insurance and then see if ur PCP will refer u.

I also was given both dx's u have over the yrs as well...and they  were a mis dx for me...and it is possible to have fibro in addition to chiari and depression as neone with all this pain knows is not fun.,...so that is normal but not a cause...

Keep pushing for answers and research the drs on the list to find one u r comfortable with.

We r happy to have u join our family here, so sorry for the reason u had to seek us out.

"selma"
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Avatar_f_tn
Thank you all for your comments and suggestions...  It is official: I heard from my doctor this afternoon and the diagnosis is fibromyalgia.  He said that he was deferring to the NL (lingo for neurologist?) re: the Chiari malformation.  He did not have experience with it, and the NL said it was insignificant, I was born with it, it did not match my symptoms (???) and even if it did, it would not present symptoms at this point in my life (I'm 36).  (also her nurse told me that the doctor did not believe the mri report, stating that it was interpreted by "only a radiologist.")
So she bumped me back to my PCP because I did not show MS, or any other conditions that she treats.  

As recommended, I will send my scans to one of the specialists that I find during my research.... we'll see if anything comes from that.  

Thank you all again...
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620923_tn?1405964489
HI...I must suggest u get a second opinion...I was also told that several times, but, I found a few other drs that did not agree with the dx and I was able to get treatment.

Fibro is a easy dx to stick  on someone when the drs do not understand what is going on.....I  agree it is possible to have both, but ur age and the fact this is congenital does not make chiari incidental .....There r more with congenital chiari than acquired chiari.
BTW I am 50...dx at 48 had surgery at 49.......I went to drs my whole life....and finally found a dr that understood fibro was not causing my drop attacks and other symptoms.

This can be a frustrating and daunting condition to find a dr that listens to the patient, but know we r here, and we understand : )

Hang in there and I hope u find the dr that can help u

"selma"
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1268921_tn?1288922656
I was told by 2 neuro's that the symptoms were not consistent with CMI--but I had come here and saw how many people were misdiagnosed until seeing something who specializes in Chiari.  I decided to make the leap and scheduled with a dr about 2.5hours away who is known for (in part) CM.  I would've stuck with the first 2 opinions had I not come to this board and heard how important it is to see someone who knows CM.  I met with the NS yesterday and he confirmed the CMI and that it is causing my symptoms (in addition to a possible psuedotumor).  The first 2 people were ademant that the 'low-lying cerebellar tonsils' would not, could not, and do not cause my symptoms...this specialist has a different opinion--and the facts to back up his opinion.  I feel much more confident with this course of action!!!  

And--FWIW--I had posted a question before about running with CM and aggravating symptoms--I heard from a few people who all started experiencing more CM symptoms after strenuous or high-impact training (me among them).  I certainly think there is a correlation and something with shifts in cervical spinal fluid.


Good luck!!!!!!!
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1179332_tn?1297482590
Please do keep looking into it!! I suffer from a lot of widespread body pain since the surgery that I believe was caused by nerve damage from the progression. My tenderpoint exam was 12/18 which is technically Fibromyalgia too but I am 100% positive that it was brought on by the effects of Chiari!!! In fact, the Rheumatologist didn't even spend a minute on that b/c they don't know the cause of FM other then it may be caused by a "unspecified CNS disorder". Well that Chiari is a CNS disorder so there you go!! My Rheumy was focused more on that and the damage it did. I don't understand how educated dr's can not put 2 and 2 together b4 their patients do!! I had pretty much got my Chiari dx (by the steps I took by bypassing my GP and NL and going to see a NS instead) and more recently I insisted on getting an antibody test done for Hashimotos which came out highly positive!! So..if they want to treat you for FM, fine...if it reduces your suffering then of course you should do it. But don't give up on finding the reason why! Good luck,

Carolyn
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I will absolutely seek a second opinion.  I found a doctor in Milwaukee (the Wisconsin Chiari Institute) that will review my films for free.  I also am impressed with his research and publications... please let me know if there if anyone has had experience with him.  I will travel anywhere, as long as I do not get the run around that I have gotten here...
I will not give up on exploring the chiari connection.  I have often wondered if the marathon training had something to do with my symptoms.  After many of the long (20+ miles) runs, I felt physically ill, would have awful headaches and nausea...  I haven't run since May 2009 :(

That being said, I am attempting to deal with my symptoms right now.  I have an appointment tomorrow with my pcp to discuss medications, physical therapy, etc. (He is definitely not supporting the chiari diagnosis, but can write prescriptions and refer me for therapy....)  Does anyone have any suggestions regarding what helps with the awful, awful, awful headaches, burning pain in the neck and between shoulder blades, and insomnia?  (although I think the insomnia is due to the headaches and pain...)
I am a teacher, and desperately trying to see my students through the end of the year... I don't want to take a medical leave just yet, so I need any pharmaceutical help I can get!!
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620923_tn?1405964489
HI...we have several members that had their surgery with Dr H in WI...and Shannon  is scheduled on the 24th of this month!

I am sure there r others.....but, right now I can not think of who......

U can try the anti inflammatory foods....and several of the relaxation techniques.
Also, look at the activities to avoid list as that can help with the severity of the HA's.......lifting, even carrying things up stairs can affect u...so avoiding those things will help.

Rest as much as u can btwn activities......try a heating pad on ur neck to help loosen the tight muscles.....the Health Pages here have many of the lists I mentioned......

http://www.medhelp.org/health_pages/list?cid=186

I hope this is helpful : )

"selma"
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1041839_tn?1278685446
Hi! Dr. Heffez is great! And i'm traveling from mississippi to see him cause i couldn't get anyone here to take me seriously. As for meds, lunesta helped me some for the insomnia. Try using a therma care patch between your shoulders, it will lessen the severity. And do look at the threads selma shared. As for pt, i wouldn't do that until you see a chiari specialist and even then would make real sure the therapist knew about chiari or was willing to learn! If you have any questions about dr. H, dont hesitate to ask! Blessings ~ Shannon
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Good luck with your surgery Shannon!  I will looking forward to your updates and wishing for your improved health!!

Thank you Selma for the suggestions.  At this point, I'm taking it day by day....
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It is of course Jan of 2012 and I found this forum tonight after not being able to sleep due to pain and discomfort, cold and tingly hands and feet.  What course of action did you end up taking? Many of your experiences mirror what I have been and am going through.
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1968463_tn?1374761413
HI.  I was diagnosed with fibromyalgia too, and was then treated for it with Savella. Heads up....be careful. THe doctors think that the Savella was partially the cause for an episode that I had that left without 2 years of my memory. Most of it is back now, but it was probably the worst thing I ever experienced. So, be careful with the dx, and make sure you and your doctor research any meds given for the fibro. I still say I dont have the fibro, and I refuse to take any meds given on the basis for fibro. Just wanted to caution you, I would hate to see anyone else deal with this.

Sheila
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