re: chiari

hi there,
i am 34 yr old woman who became ill a few months ago with tingling and numbness down my left side severe headaches trouble swallowing and lower hearing, i was refered to see a neurologist and he suspected ms and sent me for an mri. i havent got ms but do have chiari malformation type 1, it is only 2mm long at the moment and i am actually paralysed now down the left side, i am also urinary incontinent, the nuerologist has said that my symptoms are not matching the chiari and he feels i need to go onto ant depressants saying he thinks my brain is blocking my body from working like a post war sort of depression. i am confused because the chiari clinic site says that the chiari can cause my symptoms and so i am at a loss as to what is wrong with me. can anyone help with this? thank you.

[redkim]

OMG!!!  How many doctors are going to keep giving out improper advice because they are too ignorent on Chiari!  

My advice Nikki is to see another doctor, ask to speak to a nuerosurgeon.  Chiari can cause paralysis and if left untreated can cause permanent damage, you really need to get into see an NS soon.  See more then one if you have too.  I know this is hard and I know you are probrably tired but please be persistant, don't take what the doctors say as always being correct, they are human and will make mistakes.  If this was me, I would call this doctor back, tell him to go to H*ll and insist on seeing another doctor immediatly.

I don't want to worry you, but Chiari is not something to take lightly especially with the symptoms you are having...the sooner you can treat it the better the results will hopefully be!

We all here have been jerked around by doctors, I was told I needed to go on depressants also, so I too charge, e-mailed my primary doctor requested the tests I needed and with out even seeing my PCP got a referral to an NS.  I met with the first NS who said I was a candidiate for surgery but wouldn't acknowledge my symptoms as being related but wanted to cut me open...

So I told him I wanted a referral to a 2nd NS, I called the NS myself and told them I wanted an appointment and that a referral would be coming through.  I met with the 2nd NS a few days later and I am now scheduled for surgery...

Good luck, you will find great support here!

[selmaS]

Hi Nikki and welcome !!

Kim is right, there r too many drs that give advice regarding chiari and they r not qualified to give an opinion....they should be giving u a referal.....


U will need a chiari specialist not just ne NS.....we do have a list of drs we here on the forum have used and liked.....and we can help u locate a dr also, but do expect that u may need to travel to see one.

I believe we all were rx'd some kind of antidepressant....mine was yrs b4 my dx.....but the fact the drs r not aware of chiari symptoms just scares me.

U need to see a chiari NS asap......let us know if we can help u locate a good chiari dr.

Also, print out info and symptoms of chiari to take to ur PC so he/she understands all that is going on. And request copies of all ur MRI's on disk and all the reports....this makes going to other drs much easier.

Good luck
Godspeed
"selma"

[suze930]

Chiari specialist in Melbourne Australia needed!

[veromom825]

i am a 33 year lf female, who has never worried about my health until about 3 weeks ago, i started getting slight headaches and lightheadedness, in the pm, after i would get home from work, and wrote it off to not wearing my glasses at work all day. i went for a physical, last tuesday and told the dr i was feeling lightheaded and headachy, also occasional, fast heart beat.. he sent me for mri, to "make me feel better" so he said... as the days progressed i  felt worse . tingling in my hands feet head, panic attack that i was having an anyerism, then the back of my neck started hurting... i was so scared. i had mri and they told me  the result was slight deviated septum and that one of my cerrabellum tonsils was hanging lower than normal, as i started looking online i found chiari, and almost every symptom was what i was feeling.... i was refered to nerologyst who said my case was so slight that it couldnt be  causing my symptoms, he then refered me to a physical therapyst for my neck and a nose ear doc for my lightheadedness and headache.. at this point i dont know what to do i feel he is wrong, but he seemed so sure that nothings wrong, he said i was born this way and they normally dont do anything about it, should i seek another opinion? i feel like my neck is falling into my spine, yet the other symptoms have gotten better over the last few days, i need advise!!!,

[selmaS]

Hi and welcome to the Chiari forum.

First and most important ...yes u need another opinion and not just one from a NS(NS= neurosurgeon) but one that specializes in chairi and related conditions.

many drs even chiari specialists do not agree on tonsil herniations under 5 mm......do u know how large a herniation u have?...if u have a CSF blockage or overcrowding?.....

U will also want to find out if u have tethered cord and a syrinx.

Chiari symptoms can cycle.....and can be triggered from a MVA to a sneeze....DO NOT LET THE DR TALK U INTO PT FOR UR NECK>>>>>not until u get looked at as it could do u more harm than good.

"selma"

[KYKY84]

does nebody get moody, or irritated easily from ur arnold chiari????? i had 2 arnold chiari surgeries when i was 17yrs old my junior year in high school in 2001, now 9 yrs later i have ALL the same symptoms back and for the past 3 months i cant turn my head to the left without pain and my neck and head feels stiff and tight and very numb yet very tingly it feels like a bug crawling across the back of my head.... i know that sounds crazy but thats the only way i know how to describe the feeling. IDK if my short temper n moodyness has nething to do with the chiari so i thought i would ask my new chiari family on here lol, i wish i had u guys when i was going through my surgeries 9 years ago :(

[jpurple]

A chiari specialist or even just a doctor who will listen to you.  I am seeing a rheumatologist november 1st, talked to my pcp about inflammation being my problem  headaches/left side numb/sinusitis/asthma/raynauds/severe bilateral wrist tendonitis.  my pcp is giving me pain meds to get me through, but i'll need more or something to help me, the pills are just masking something is wrong.  I think the inflammation going on in my body is making the chiari symptoms worse.  I hope he is open to learning about chiari, so sick of getting the run around.

[veromom825]

I posted on this forum in feb. When I had a mri that showed the herniated tonsils of my cerabellum. I went in for a physical and complained of dizzy feeling.headach in back of my head neck and sholuders. After I. Was refered to a nerologist that said I didn't have a tumor or clots and wasn't dying I felt releived then more frustrated. He sent me for other tests and that used up all my doctors visits for the year. The nerologist didn't even mention chiarior my herniation until I brought it up and he replied that it was minimal and iv had it since birth and that he want going to give me any medication. That topped it off. I want to feel normal. The dizzy tingling shaky feeling I have to go away. I left that day 9 months ago and didn't go to the referal for physical therapy because of money and insurance. I researched online instead and ad time passed my symptoms sort of subsided and were not as severe. Then about a month ago my lower back started to hurt again and my headaches and dizzyness came back..followed by tingling handds feet and weird sensations in my head. Clike crawling or dripping. I never have passed out . Then chestpain that made me go to the eER. After all kinds or testis and bloodwork mri on heart dyetestt.they said my heart and lungs where fine. I cannot afford to take time off work I am a single mom and am out of dr vivts until after the newyear but the feelings I'm having are making it hard to manage my daily routine. I'm 34. I should not feel this way.iv yet to see a chiari specialist but I am so sick of the run around and doctors telling me I'm ok. For now over the counter pain meds work for my headaches but the dizzyness. Its the worst.. I guess I just needed to vent because I think everyone else I talk to feels like I'm a hypocondriac!

[selmaS]

Hi..well u r deff not alone here!!..we have all gone thru the same thing,there r many drs out there that do not believe that chiari can  or will cause issues....

I am so sorry u r again having the same issues and as u found out chiari symptoms can cycle which can make it diff to dx.

Working within ur insurance will be another obstacle....being treated for chiari via surgery may not get rid of some of the symptoms u have, so u do have to try to find ways to avoid triggering the symptoms if possible.
But do try to get testing to make sure u do not have related conditions and a CSF blockage which is the main reason to have surgery...to help avoid the formation of a syrinx.

Glad u r back, but I am sorry u r not feeling well.

"selma"

[veromom825]

Thanks! I am glad ithere is a place I can come to know I am not alone. I definately am going to go thru the process of getting the right testing done. I am going to try to hold out until after the new year fot the insurance reasons. But do u think I should see a spine doc for the tests? I definately feel that underlying issues are rooted there. My lower back issues seem to be the trigger both times I started to feel really bad..it started with that then moved right on up... thanks again for any input u have time for....

[selmaS]

Hi..if u have chiari and r having lower back or spine issues it could be a syrinx or tethered cord which is best handled in MHO by a chiari dr.

For yrs besides my HA's I had spine issues starting in my lower back as well...I do have tethered cord.

"selma"

[veromom825]

So I Now realize that I can't have more than a few glasses of wine without feeling aweful the next day. I had some last night and today I am so dizzy and my heads pounding. Does anyone else experience this after drinking. Its like a regular hangove times 1000! I really enjoy having a few drinks because it helps me sleep and helps the stress.but if I can't function the next day it may be something I have to give up...

[selmaS]

I am not a drinker..never was really, but there was a time I too was having a glass of wine to help unwind and sleep....first, it was not a full glass and it helped in the beginning, but after a  while it stopped...

Alcohol affects veins in a startling way. Like smoking, it narrows your blood vessels, obstructing the flow of the all important blood....if it can affect blood flow I imagine it can also affect flow of CSF as well????It is no wonder  that u would feel worse as a chiarian and drinking a few glasses of wine.

"selma"