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15939478 tn?1444104113

Doctors Have Dismissed Me

Hello all,

I am 29 and found out I have chiari a couple months ago.  I have had ongoing symptoms for a year now that doctors can not diagnose.  The neurologist and neurosurgeon I saw both say that my chiari is asymptomatic because the tonsils are not down very low, and I do not get headaches.  My right tonsil is 6.5mm below the opening, while the left is 3.5mm below.  I am dizzy all the time. I lose my balance, stagger, bump into walls and feel worse when I lay down.  I also feel extremely sick when I change positions while laying down.  I get a rapid heart beat; sometimes from standing up but sometimes when I have been doing nothing.  I am fatigued all the time, I have trouble sleeping, I feel weak.  I have a lot of abdominal pain that my gastro wants to chalk up to IBS.  I see halos and shadows around objects at the same time, so much so that I can look away from an object and still see its shape in front of me.  I do not get headaches often, and definitely not migraines, but my neck/base of head have ached really badly a couple of times.  My joints hurt a lot for no reason.  My arms and hands tingle and go numb all the time.  Everything seems to get worse during menstruation.  I can not function, the smallest activity wipes me out.  The only symptom of mine that I have not really heard about being related to chiari is a constant internal shaking.  It is not visible, it is kind of like the shaking from an adrenaline rush, it is hard to explain.  Does anyone else experience something like this shaking?  Does anyone else have these symptoms with tonsils that are not very low?  Symptoms worse with that time of the month?  Symptoms without headache?  

I only received that MRI because I forced the doctors to give me one.  I kept going to the ER and getting ignored.  Every specialist I have gone to has written me off saying there is nothing else they can test for.  I have had every blood test and image test out there and I'm running out of ideas.

Thank you for any feedback, I really appreciate it.
14 Responses
Avatar universal
Whatever it is accept the fact that almost 90% of disease or even more have no treatment. So when there is no proper treatment available, no use in diagnosing it.
Avatar universal
The best thing would be-as my Neurologist set out, even with the known DX of Chiari back in 2005& even with further descent&thicker overcrowding, she was insistent on ruling out of dx's. (Although I'm wondering if EDS WAS something not looked at). But in general, everything from thyroid (Endocrinologist) to an ENT..Neurotoligist besides as well a WELL informed Neurologist is KEY.  I did end up, 10yrs. after DX, having the decompression surgery-in 4th week of recovery. I know it can be a long & trying road trying to figure out what is causing your body to go haywire. From my knowledge, Chiari cannot be dx'd by blood work. It could be a mixture of things. And perhaps getting w/a Chiari specialist would be your best possible solution. Even sending your info. & images (MRI, CT, CINE, flexion X-Rays, any & everything, might give you some answers.
As well, setting in motion a plan to address each issue that is presenting, thoroughly getting it examined by a specialist (like yes, I did have Hashimatos Thryroiditis-ended up having to have my whole thyroid removed only b/c it was swelling w/so many nodules in left and right love. Biopsies came back inconclusive, so my Endo. Surgeon said it had to come out-also due to it's swelling& pushing on my windpipe). Point being it may be many things. There is a list you can find on some threads here of Chiari specialists....it might be very worth looking at one nearest to you and seek knowledge there. Chiari is tricky-even when it's confirmed that it is indeed impeding on, obstructing your life, even after the surgery-and please remember, there is no cure-the surgery can only hope to stop/slow progression of the condition, not a disease, can't be cured. But, surgery gives hope to regain some part of a new normal life. I know it's hard when your body turns sideways on you, but I know you'll get it all sorted out. There are many people with links and such to help aide you on your journey!!!
I'm just a 40yr. old gal, into 4th week of decompression surgery recovery.. So I may be wrong on some of this & correct me if I am. ;)
(I can still blame my pointless points on recovering from "brain surgery", right?) ;)
Best of luck. I'm always here if you have a question that I AM able to answer in good faith.
Avatar universal
You sound like me I have Chiari also but I was also diagnosed with pots 6 months post op surgery. I would check into pots also. I believe the adreline rushes is maybe from pots.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I too had the internal shaking....and it did get to the point others could see it...but at first only I could feel it....it scared me as I thought it might be MS....I still get it once in a while when I carry something or my arm is bent...strange...but it is visible now....and as I said  rarely happens at this point.

Chiari is Chiari regardless of how long the herniation is.....plus there are other reasons for symptoms then just having Chiari....and mine by the way were 6mm and 4mm and I had surgery.

You need a true Chiari specialist to look for ALL related conditions including POTS, Syringomyelia, tethered cord, ICP, CCI, sleep apnea,ehlers-danlos,retroflexed odontoid....and others.

Some Drs will refer to over crowding...but regardless of what it is called if you have it where things are all bunched together nerve and brain stem compression can occur and cause a CSF obstruction and then we have symptoms....and this can happen to someone with a 3mm herniation.....Chiari is the malformation of the skull....so other things can be going on as well.....

We do not have any Drs listed for your state....but if you let me know what state you can travel to, I will look for names there so you can research Drs....

Hang in there you are not alone,
7489440 tn?1442008376
Don't give up. Just because you were dismissed by two doctors who probably don't understand this condition to the fullest doesn't mean that it isn't effecting your health. I have the shakes as well but mine are visible and my doctor ruled them to me as being anemic. So I don't know the real cause because if it was from being anemic wouldn't I be on iron pills? but I am not. So I don't know the reason they are from. I get little trimbles in my hands like if they have a pinched nerve or something. but I guess we will see. Best of luck to you
Avatar universal
I completely understand what you are going through.  I went through the exact same thing with almost the same symptoms.  My symptoms do all fluctuate together too, not sure if yours does.  My rapid heart rate and palpitations did occur but only when symptoms were very bad for me.   Stressing out over everything and being ignored by doctors for months did make things worse for me.  Being in a constant state of emotional stress I think is very bad for chiari symptoms.  I also felt those internal tremors a few times, very weird, but they don't happen often.  Headache isn't on the top of my symptom list either, but I do get them just not every day.  I've also greatly limited my activity, which has helped.

After an inner ear specialist pointed out my chiari and said he thought it was the cause of my symptoms, I went to 4 neurosurgeons who claimed to specialize in chiari but really did all types of neurosurgery including decompression surgeries.  They all dismissed me and said I don't have chiari, it's not even over 5 mm, it's only 4, which is what was noted on a radiology report.  

Eventually, after then seeing multiple neurologists and being told it's all "in my head" I sent my images to two neurosurgeons who run chiari centers.  They both agreed chiari was the problem and my herniation was actually double what the radiologist noted.  My doctor did not push surgery but I elected to have it done to hopefully improve my quality of life.  My surgery is next week.

In my opinion, you should send your images to a chiari specialist.  I know what you are going through and it's a very difficult and emotional experience.  It's tough enough to be dealing with chiari symptoms and then to be told nothing is wrong with you makes it even harder.  You start to feel hopeless, depressed, fearful for your future, and partially scared that somehow it might all be in your head.  That's how I felt before reaching out to these chiari specialists.  It was my last attempt to figure it all out and I'm thankful they took the time to read my images and my symptom description carefully and put the pieces together.
15939478 tn?1444104113
Thank you for your response!

After my initial MRI, they gave me a second one on my upper spine to check for a syringe(?) and did not find one.  Reading through other posts on here however, I saw that there could be one at any point on my spine.  I will have to get my entire spine imaged.  A close friend has EDS and POTS (doctors say the worst case they have seen) and is constantly getting surgery.  My symptoms don't seem to be like hers but I know everyone is different/has symptoms to different degrees.  It couldn't hurt to test for those things.  I've looked a little into dysautonomia.  

I've been going to UVM and they are not helpful at all there.  I can pretty much travel anywhere that would allow me to drive there and back in one day.  I have been thinking of going to Dartmouth, but I don't think they have Chiari specialists.  I need to find that list of specialists on here!  
15939478 tn?1444104113
You're right Kwalker, that doesn't make any sense.  Anyone who is anemic should be taking iron supplements.  Sounds like a neurological thing to me!  My shaking mostly feels like it's in my chest and arms, but when I hold my hand out steady I see nothing.  They are also all the time, they do not come and go.  It just doesn't sound like the tremors other Chiarians talk about :/  Maybe it is something additional to the Chiari.
15939478 tn?1444104113
Iasel, thank you for your support, our stories do sound very similar.  It does get very depressing and frustrating!  Last night I had very bad heartburn, even though I take Zantac twice a day to prevent it.  I had to double over to ease the pain a little bit and stop it from going up my esophagus, but it made me incredibly dizzy.  So I had to try to bend over while keeping my head upright and I wanted to scream.  My next step is definitely seeing a Chiari specialist.  Best of luck to you on your surgery, I hope it eases the symptoms.
Avatar universal
For many years I had things no one could seem to explain. I had tremors of the hands and  my legs would start jerking uncontrollably. It was so bad that once my husband carried me into the er and I was hospitalized while they ran lots of tests including mri's. Everything came back "normal", but after diagnosis when I had to retrieve all those reports there it was... Only at that time my tonsils were only herniated 4mm, and I was never told that. 15 years and lots more strange symptoms later I got the diagnosis of chiari. The only previous diagnosis I had was carpal tunnel, peripheral neuropathy and orthostatic hypotension, and basically just left on my own.

But I often had the internal shaking that no one else could see but I certainly could feel. I would lay in bed jerking so much so that my whole bed would shake. It was confusing and scary and it went on for years. Had to start walking with a cane in my early 30's. This condition has such a wide array of symptoms, yet so many similarities with other chiarians for it not to be related!

I'm 10 weeks post op now and I'm trying to see the light at the end of the tunnel, although it's still quite dim! Hang in there, we're all here to offer what advise we can!
15939478 tn?1444104113
Thank you, I am trying to stay positive, though some days it is very hard!  My shaking definitely does not move the bed, but it feels like the whole world is shaking.  

This has made me realize how vibrations have always made me feel sick, even before all of my symptoms came on.  Something as little as my dog panting too hard while on the bed would send this horrible feeling through my whole body.  I can't be on the second floor of the local Barnes & Noble because for some reason the floor subtlely shakes and it wrecks me.  I can't sit on the same bench as someone who constantly kicks their foot.  I know it sounds very fickle but I can't help it.  I never put those two things together, but maybe that has something to do with my shaky feeling now.  

Do you feel any improvement after 10 weeks?
620923 tn?1452915648
COMMUNITY LEADER

  The list of Drs is something I have to copy and paste for you...the pages it was on was discontinued by the servers of MH,,,,,so this is why I ask which state you want to go to so I can add the list for that state,,,,not all states have Drs on the list....so this is the best I can do for you.

CONNECTICUT

Dr. Judith Gorelick
Connecticut Neurosurgery PC
330 Orchard St, #316
New Haven, CT
(203) 781-3400

Dr. Michael Diluna
Yale New Haven Hospital
Yale Pediatric Specialty Center/Pediatric Neurosurgery

MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: 1-617-726-3511
Fax: 1-617-643-4115

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA

Keep in mind this list is not a referral nor an endorsement of those listed on it....this is merely a starting point for you to research Drs.

If you find a Dr with Chiari knowledge not on our list please send me the info after you have been to, treated by and are happy with the outcome as we need to add to our lists....

Keep us posted on what you find out...

It is a syrinx and also known as Syringomyelia.....and yes it can be found anywhere on the spine...not just the cervical spine...but many Drs only check there for them as they are common to occur in the cervical spine when it is injury related..as it is the weakest area of the spine. With Chiari the syrinx forms due to the CSF flow being obstructed not due to an injury.....
15939478 tn?1444104113
Oh thank you! I have copied down your list.  I am going to search for some in the upstate NY area also.  Unless you have some on your list for there as well?  Boston is only 3 hours from me so that's not bad at all.  Yale is about 4 hours away.  So these specialists have been recommended/have good reputations?  Thanks again.
620923 tn?1452915648
COMMUNITY LEADER

  These are names of Drs members here have been to, treated by and liked...not all on the list may be true Chiari specialists this is why I say you need to research them.....I do not know much about all of them...but if you have one in mind PM me the name and I will give you info there if I have it.

Here is NY list.

NEW YORK

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy

The Chiari Neurosurgical [email protected] NSPC
Dr. Paolo Bolognese  MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
(212)523-6720

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310

BTW- I went to NY for my surgery....so I can give first hand info on the Drs there.
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