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Avatar universal

Newly "diagnosed" and desperate

Hi, I'm Amy, 28.
I was diagnosed a few days ago with CM1, after having an MRI following a seizure.
This is how it went:
Went to a neuroligy clinic at a large hospital. The neurologist told me the MRI showed I had CM1 with a "small" herniation. He did not state the measurement of the herniation. He then said it was nothing, said I wouldn't need another appointment and sent me on my way.
I was horrified when I returned home that night to trusty Google. CM1 perfectly explains a HUGE list of extremely debilitating, "unexplained" symptoms I have been suffering with to varying degrees for over ten years!
I have recently moved from Melbourne, Australia to an isolated area of country Victoria, so my new GP doesn't know of my history. I am seeing her tomorrow.
I am just so scared of her not taking me seriously. I want to be referred to another neurologist for a second opinion. I'm so worried she will treat me like I'm a hyperchondriac, as has happened to me time and time again. If I ask for a referral and an MRI of my spine, can she refuse? Has anyone else been fobbed off in such a manner?
Best Answer
Avatar universal
Sorry you had to find out about CM so suddenly, and with so much else going on! First off, most neurologists are not aware of CM or of the current definitions and symptoms. (Really- no kidding.) Others just don't believe in CM surgery, even if you end up being a patient that might benefit from it.

This neurologist may have been reluctant to deal with your CM if he thought there was no long term history of symptoms (in his viewpoint), and few or no testing by other specialists to exclude other problems, etc. (Of course sometimes you have all this and it still won't sway non-CM specialists. As in my case.) So unless you have had the neurological, ear/nose/throat, cardiology, pain, or other testing (depending on your particular symptoms) it is hard for any doctor to be reasonably certain CM is really your issue.

You've started by educating yourself about CM- keep on with this!  Next, get copies of all of your CM-related medical records, reports, and films. (You'll be amazed at the errors, omissions, and lack of disclosure.) The MRI report may state the extent of herniation, or allow you to measure it for yourself off of the film.

Then ask your new doctor to help in figuring out your situation by ruling out other causes for your symptoms. Suggest that it isn't just the length of herniation, but the blockage of cerebral spinal fluid that is key. For any doctor (even neurologists or neurosurgeons) to know about blockage, a cine (AKA cinematic) MRI is necessary. Depending on your symptoms, MRIs of the spine may also be indicated.

I don't know much about the medical system in Australia, but actual CM specialist neurosurgeons may agree to review your records and help with a diagnosis. (That's what I did, with 8 years of records and reviews with 4 other types of specialists.)

I believe there may be gynecological impacts with CM, but I don't know much about this. (Except that I had real problems & a total hysterectomy at 43.) You might want to go over that possibility with your doctor to see if that would effect your decision to have a hysterectomy.  (It is very difficult to get your hormones balanced after wards, if your ovaries are also removed.)

So make a plan to learn more about CM, and to get the answers you need. Get well so you can be there to help your daughter. It's hard not to imagine the worst (eek- does my child have this also?),- but you have to give yourself time to figure things out and not let worry make you sicker. (This is the same advice I gave to myself when I first figured out I had CM.) Good luck!      Dana

For more info:
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#157723087
http://www.chiariconnectioninternational.com/
http://www.conquerchiari.org/index.htm
http://******.******.*****.com/group/chiari/
16 Responses
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Avatar universal
There was talk of a pituitary gland tumor at one point but then they never followed through with further investigations. I rang today and assertively told the hospital in Melbourne where I had my MRI that I needed my results sent to me to take to "my neurosurgeon". Which I don't have yet, but they didn't need to know that, haha. I will then at least know how big my "small herniation" is!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
I am sure that pregnancy that u had to strain like that did not help matters, in fact if u r aware u have chiari they (chiari drs) suggest u do a C-Section to avoid that.

It seems we r all told it is all in our heads, they r right and wrong all with the same statement.

Do u know if they noticed an issue with ur pituitary glad?...Sometimes it gets compressed and can cause that lactation issue u mentioned.

"selma"
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Avatar universal
I'm sorry it took so long for you to be diagnosed =(
I thought my 11 years was bad enough.
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Avatar universal
Thanks very much for your reply and information.
I'm going to take your advice and try to aquire my MRI results today.
Nothing would change my mind about the hysterectomy. I have been suffering with those problems for 14 years. I've spent the equivalent of 4 months a year in bed drugged to the eyeballs on the strongest pain meds I can get, for the past 6 years. I can't wait to get it done. I hope the surgery goes to plan!
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Avatar universal
My problems also started from the birth of my child 11 years ago. Maybe because she was stuck and they made me push as hard as I could for 90mins. I remember the intense pressure in my head and later that night a blood vessel burst in my eye and bled down my face. Maybe that started off my symptoms. By the time I left the hospital I was having the most painful headaches imaginable, which lasted for months. They have been on and off ever since.

Here is a list of the symptoms I have been having for 11 years, with increasing severity:
* Migraine/headaches
* Spots in vision, double vision, blurry vision
* Intolerance to noises, during headaches
* Intolerance to bright lights
* Nausea/vomiting
* Painful tension in neck, shoulders and upper back
* Fatigue, sometimes with overwhelming urge to immediately lie down and sleep no matter where I am or what I'm doing
* Sleeping 20hrs a day, sometimes lasting months at a time.
* Dizziness, imbalance, clumsiness, running into things, hitting my head on doorways etc
* Depth perception problems
* Tinnitus
* Very cold feet/ lower legs, tingling and numbness in hands and feet
* Difficulty swallowing, choking sensation, constant gagging whilst lying down. When this first started happening it was so scary. I went to emergency three times. They ended up telling me it was all in my head.
* Galactorrea. When I stopped breastfeeding my daughter after one year, I stopped lactating for a couple of months then it spontaneously resumed and has been going ever since. I have now had "unexplained" lactation for a decade.
* Menstrual problems - but this is probably unrelated. I have adenomyosis and I'm having a hysterectomy for this on 21st September.
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Avatar universal
First let me put this out there, Chiari is not my only problem. Is this Chiari related then? My gut feeling is yes it is because the symptoms have lessened so much since the surgery.

Hearing seems to be related - First sounds my hearing will get sort of hypersensitive, like every sound is extremely defined. Not pleasant but it's only certian voices that seem to cause the vibrations or tremors. Certian people's laughs etc.

Light seems to be bright direct sunlight and or Flouresant lighting. More specifically when the light bulbs are not sheilded by some sort of difuser. Normally this is just irritating but when the sound and the lights are combined I first go into a sort of different mental state. Not sure how to describe it. Here is an example.

Yesterday, my son wanted a cell phone. Because of some of his life goals he doesn't want to be locked into a plan and thus was shopping around for a pre-pay plan he can drop when he wants. Someone told us about a discount store in the mall. I've not been in a mall for probably 3-4 years. Well I felt pretty good the last 4 days there have been no noticible symptoms of any kind. So I agreed we'd go to the mall and check out this store. It was very very very busy in there. I was annoyed but ok. Then out of the blue like in a split second I went from 'ok but annoyed' to I was not in my body sort of feeling. I could feel both my feet dragging as I tried to walk but couldn't stop them from dragging. I couldn't remember how to get out of the mall at all [not like me at all I'm the guy you literally drop into the middle of the forest and I'll get out just fine]. Then the tremors started, my right hand was shaking like a leaf, my eyes felt as though they where vibrating as did my brain. INtense pain down the back of my neck. My wife and son said I was running into everything but I don't recall it at all. The only things I remember are the pain, the feeling of "I have to get out of here" and my wife tugging on my arm and saying I was going the wrong way. Today my head is so sore I can't even bear laying it on the pillow and my right shoulder feels like someone beat it with a sledge hammer. My wife tells me that may be because I ran straight into some sort of pillar in the mall. Most times it isn't this bad, but normally the situations I'm in I can just walk into a dark room or step out to the car and remove myself from the situation. But this event did teach me that too much movement seems to be a visual trigger as well.

My PCP has some test planned to try and determine if this is or isn't Chiari. Not sure how they can tell that but we'll see. Perhaps we should move this off of Amy's thread though. If you want to IM me that is fine.

Wolf
Helpful - 0
1413972 tn?1305579764
since joinin this forum i too wondered if it was possible to hav CM with seizures. wow and as i see there are others.. question though - if you hav been diagnosed with CM and you hav seizures could you please tel me your story - how they came across findin out as my problem is gettin them to listen thats its not in my head , that there is somethin wrong, that its not depression etc..

over the past 6yrs - ive found that theres not one key thing that bring on my seizures.. it can be from anythin to havin a bath, to jus go the shop, playin with my girls, candles flickerin, tellys, sunlight, loud noises, not talkin for a long period too, lights, voices.. its like one minute im normal and within a split second i go all spacey - distant, not with it kinda feelin and all tingly, rolls twitchin.. but there are some seizures that can jus be mild where i get abit of twitchin and eyes rollin.. no matter how bad they are im unable to talk, although i am semi conscious and am aware of wats goin on even though my eyes are rollin etc.
the docs hav said try pinpoint the one thing - but it can be anythin! ggrr soo annoyin ay!!
Helpful - 0
1336659 tn?1275890125
Since May i've been trying to find people with chiari and seizures. My son's seizures started in January this year. He had 2 Tonic Clonic seizures. I work with people with disabilities and a lot of them have Epilepsy. But apart from the 2 seizures not many of the symptoms he developed seemed to fit with Epilepsy. From September last year he was having back pain and headaches. I brought him to the doctors a few times with this. He was always ill as a baby..but nothing since he was 7 years old.  ChiariWolf. Can I ask about your issues with hearing and vision. Neither seem to bring on seizures with him.. but he has become very sensitive to Sunlight. (If he opens a door without his sunglasses on he screams in pain) And since his 1st seizure his hearing has been amplified.

Amy.
I'm so sorry you are going through so much now. Just one thing.. God bless with your operation and keep in touch. I'm sure you and your Daughter will talk everyday and the time will go fast.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the chiari forum.

I am sorry my addressing of ur post is a bit late, I was not on the forum on Saturday.

U did get some very good advice from the members here....those who have this condition seem to have more info on the condition.

Here is a list of Drs we compiled from members of MedHelp ...it is a very small list at this time, but it gives u some place to start ...u will need a chiari specialist.
http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732#post_6013046

Please keep in mind u do need to research all drs......find the one that is best for u.

"selma"
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Avatar universal
It took most of my life for anyone to dx Chiari. So yes the concerns with being treated as if these symptoms are not real, not affecting/effecting your life... Yes they can be frustrating. Even very agravating at times. However, because Chiari already causes it's own axiety we must do our best to keep the thought process on a level feild so that we can reason with the Dr's that 'do get it'.

As for seizures- I used to get them a lot worse than now. Now I'm realizing they are -for me anyway- triggered by too much audio / visual input. Such as un-difuzed flouresent or sunlight and certian peoples voices. Or even in a crowd with too many peoples voices at once.

Dr Srivastava= My appoligies- I do not quite follow the the relation of your response to amy824's post? Please do elaborate a bit so as to perhaps help her and the rest of us understand your meaning.

Wolf
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999891 tn?1407276076
To Dr Srivastava:

Did you read the post by amy824? Your response dose not answer ANY of Amy's concerns. You have given information that is not relevant and in fact could add to a patients worry. You need to re read this post and respond appropriately.  

To amy824, jacmurphy & emza1910.
This is a very interesting topic. I do not suffer from seizures and I wonder if there are others here who do and if it is a Chiari related symptom. Hopefully the Doctor can shed some light on this and others here can let us know if they suffer seizures. I do suffer drop attacks witch are different from seizures in that I am awake during this and do not twitch etc.

Ray
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1413972 tn?1305579764
hi,
i too suffer from seizures.. hav done now for nearly 6yrs and im still battlin to get any answers to why this is happenin - followin the birth of my first child. ive all the symptoms n more yet no one will listen.. i hadnt read anywhere else that others with CM hav seizures so its nice to here im not alone and i will certainly push now for them to take me seriously. good luck hun! we hav all been there.. tell her everythin, maybe jus maybe this will be your one doc thats there to help - ya never know til ya try! no doubt we hav all been there and maybe still goin through it. i say stay strong we will get there, we will find one out there to help...
ive recently changed docs and i didnt even get chance to comment - after i mentioned MRI - this useless doc told me it wasnt hes field and that i should go back to my neurologist, he even disregarded my seizures too. i soo wanna go back to my old doctors - at least they listened and kinda got the ball rollin.. :-( i moved house and too far so had to change though.

remember though we are here for you, and please do let us know how you get on with your new doc..

emz
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Avatar universal
Thanks so much for your reply Jackie. It's great to know I'm not alone in my experiences, but very sad at the same time.
You must be so stressed and worried about your son, there is nothing worse than having an ill child. I really hope he gets the help and appropriate treatment that he needs and deserves.
My 11yr old daughter has been having migraines and neck/back pain for a few years now and the dr refused to do an MRI. Now I'm worried she may have what I have. Unfortunately, I am in no position to chase this up at the moment. I am having a hysterectomy on 21st September and because I am alone with her, she will be going to stay with her father 4,000kms away whilst I recover. The nurse says about 12 weeks ;-(
Helpful - 0
1093617 tn?1279302002
MEDICAL PROFESSIONAL
Hi, Thank you for your question. I doubt that some spinal nerves may be compressing in spine by disc prolapse & degeneration or stenosis. By the reason of that nerves from the spinal cord can be irritated causing weakness in the leg, leg/thigh pain and numbness, tingling. Few persons also face generalized body weakness and numbness due to other nerve irritation on back. If he suffers continuous weakness and notice reduced strength of muscle bulk in both the legs, please arrange an appointment with a neurologist right away who will evaluate the possibilities here. These “red flags” could be indicative of compression of the spinal cord and its nerve branches and early treatment is essential if permanent damage needs to be avoided. Further referral to a physiotherapist for spinal exercises could be beneficial and may produce relief of symptoms. Hope this helps. Take Care & Stay Healthy!!!
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1336659 tn?1275890125
Hi Amy.
Sorry you are having this issues.
My 14 year old son's Chiari was diagnosed in the same way. He had 2 seizures and after the 2nd one they ran tests. They didn't tell me about the Chiari until 5 months later when I went for a check up with him (he was diagnosed with Epilepsy after the 2nd seizure) I was very worried about his Epilepsy as he was having symptoms I never heard of being associated with Epilepsy. They told me he had Chiari.. but he didn't have symptoms. When I got home and checked out Chiari all the symptoms we gave them were Chiari related. Last week we had a 2nd opinion with a NS and he said he's not willing to acknowledge that he has any Chiari symptoms as that would mean he would have to operate and he's not going to do that.
I'm afraid you are going to have a fight on your hands. My GP has been great. She was honest and admitted she knew little about Chiari. But she researched it and she's been behind me fighting for this. I do hope you have a Doctor that will do the same. You do need to have an MRI on your Spine to rule out Syrinx.
Be strong and research as much as you can about Chiari.

Jackie.
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