Need answer about MRI findings please!

[outdoorgal35]

Not sure where to start so please bear with me as I try to make sense. I have suffered with some type of head pain since I was a kid, I am 39 now..They have progressively gotten worse over the years along with severe intractable migraines, chronic neck pain, always hurts, shoulder pain, feeling of "off balance", like I could fall, the room aint spinning I just feel light headed per se, which makes me afraid to drive sometimes, muscle weakness in neck, arms, and shoulders, tingly in fingers that comes and goes, ringing in ears that comes and goes, which happens more often then it ever did, nausea, again comes and goes,insomnia, anxiety which I believe to be brought on by the pain after all these years, constant fatigue, leg pain that comes and goes, heart palpitations, crossed-eyed( born this way) which I had surgery to straighten my eye about 2 years ago, but still have double vision with hardly no vision in right eye at all, have blurry vision at times and this scares me because of how my right eye is and I have constant floaters in my left eye. I know a multitude of symptoms..I have seen a neurologist off and on for 15 years or better, never had insurance before then! One I saw for several years had me on every medicine under the sun for migraines, literally! I was a walking zombie I believe and still nothing helped, I was even hospitalized a few years back for 3 days due to a severe intractable migraine put on DHE 45 IV..it helped for a very short time, or rather it with a correlation of the other meds I was given in the hospital helped some but for a very short time. Well, I saw this doctor until I moved to another county in the state I am I was born and raised in (Alabama). Upon moving to Mobile, I seeked several doctors trying to get help, one accused me of seeking drugs, if he only knew me! I was referred to neuro after neuro here and no one would/will listen to me. They all have tried to prescribe the same drugs I have already tried for years and they never worked, and the side effects of something that didnt help were not worth it. I refused to take the medicines again because I knew what they would or wouldnt do! Don't get me wrong, I dont know everything, but I do know what I have tried and how it didnt work. Well, back in May I found a new neuro a county over from me thinking I had found a wonderful doctor..he didnt try and write me a script the first time I was there, which meant alot to me. Well, I am now aggravated with him..He does not listen to me, all he wants to do is give me steroids shots in my neck and shoulders and tell me I have a pinched nerve causing me all this pain after all these years, really? UGH! I have allowed him to give me many shots over the last few months, but they aint worth and I feel worse after getting them then I did when I got there usually. Well, I personally called my old neuro in the county I lived prior to moving to Mobile, and got them to send me my old records..I remember the neuro telling me a few years back that he had seen something on the MRI and if he sent me to a neuro they'd want to do surgery but he didnt think it was anything to worry about. Well, I believed him all these years till I got my records and began to read,,The MRI scan of the Brain states this:

There  is a slight prominence of adenoidal pad.

Cellebellar tonsils are approximately 6mm below the plane of the foramen magnum, minimally low in position. No evidence of upper cervical syrinx or significant deformity of fourth ventricle. No significant intracranial pathology is seen.

Impression: slightly low position of the cerebeller tonsils.

Ok now when I type that into yahoo/google Chiari Malformation comes up every time. Please understand these results were 10/22/2003. I have been suffering for years with migraines, neck and shoulder pain and the above. Does it sound like I have Chiari Malformation to any of yall? I'm scared, nervous, but yet hopeful I may now knwo the reason for my pain all these years.

Another MRI of cervical spine states this:

Partial straightening of the C-spine, otherwise negative.

I'm at a loss and feel like I am running out of options..The new neuro just wants to shoot me full off steroids in my neck/shoulders and has only given me 10 pain pills since I started seeing him in May. I have to go to ER and Emergency clinic by my house several times for pain shots because 10 pills since May aint going to last. No I am not a pill head, that I assure anyone, I loath drugs, but pain is pain and Lord knows we can only take so much. He has mentioned an MRI but I am so claustrophobic they will have to sedate me to ever have one, and I didnt use to be this way.

Please anyone with insight, respond. Thank you in advance.

[selmaS]

  Good luck...close ur eyes and think of all of us here pulling for u to get thru this..... : )

   (((hugs))))

    "selma"

[outdoorgal35]

I am finally having another MRI tomorrow under anesthesia, at least now maybe I can actually do this one..claustrophobia stinks! I go back to the doctor requesting the MRI Thursday morning for the results. I know this aint surgery but I'm still nervous about what they may or may not find this time. Will let yall know the results when I do. Thanks.

[outdoorgal35]

Thanks for your reply. Hopefully it will be the whole spine, but I doubt it. I'm just thankful to be getting what I am getting. One step at a time...

[selmaS]

  Hi...U would have to ask, what parts of the spine they r going to do, hopefully it is  the whole spine.....

Call b4 u r scheduled to go in and ask.

  "selma"

[outdoorgal35]

Went to a neurosurgeon here where I live, didn't have to have a referral, thank God! He said after looking at my 8 year old MRI results, that he believed I did have CM but the results were old and I needed another MRI, ugh! I cried while I was there, I was embarrassed after the fact but I can't change it. I didn't cry cause of the MRI, I was upset over hurting all these years.He was so nice, at least right now he is, they tend to change sometimes. He scheduled me an MRI for next Wednesday, Head and Spine with IV sedation, thank God again..being claustrophobic stinks! When he says MRI Spine does that mean the whole spine or just partial? I know that sounds silly but I don't know how all this mess works.  As for my heart rate, I am taking Sectral for it right now..my blood pressure has never been an issue, it runs bout 100/60 unless I get anxious or nervous but my heart rate use to get up pretty bad, like 160. I still have some issues with it rising but not like the 160, now it is like 100-110. So glad you are doing better.  I am not going to get my hopes up with this doctor right now, I have been let down so much, but at least he is doing the MRI sedated for me.  I filed for SSI about a month ago, I doubt I get it but I tried of nothing else. Good luck with your case. I'm 39 and I dont think any of us ever thought we'd be in this position. Thanks for you kind words, God is my rock, if not for Him, I'd have done went crazy. I'm leaving this in His hands, as He knows what I need better than I do. :)

[linnielou232]

It isn't funny but in a way it is.  We have all dealt with the same symptoms just in different times in our lives.  As far as an MRi I suggest you ask for valium and make sure some one goes along with you to drive you home.  I am also afraid to have mri but what I do is when I walk in there just don't look at the tube and also ask for a mask.  They alway's have them for you.  I can also relate to your children except for me I now have grandkid's and I will hear my daughter say." Don't bother grandma she isn't feeling good".  I don't want my family to remember me by alway's being sick.  6 year's ago I was as healthy as a horse.  Now I feel like a sick dog.  As far as your herination you have the same as mine was 6.5 mm.  What helped me with decision with surgery was definetely this forum and my doctor asking me if this Chairi was affecting my value of life.  That is what made up my mind.  You can only take so much pain.  We still deal with pain after surgeries, but it isn't the same.  As far as your heart rate and your hair loss it would defintely say that is due to stress.  I remember going to get my hair cut and I had a 50 cent piece of  baldness in the  back of my head and it was due to stress.  Irregular heart rate I feel is due to the spinal fluid that flow's through your brain.  If you have a herination of 5 or 6 your not getting the right flow getting to your  brain so your heart  beat's faster.  Also due to pain.  I am prescribe zantac for this 3 times per day  becasue my heart would race at 118 to 130 just getting out of bed.  You have to realize when your body is in pain it put's a lot of stress on your body.  I had all the symptom's that you did and at least 1/4 of them have deminished since I have had surgey.  Now I am celebrating my 1 year anniversary of my surgeries, and my body is now recovering.  Selma reassure's me that my 2 year op will inprove my life.  So it is something to look forward too.  I was blessed enough to have found a NS right here in my home town Muskegon Mi who has dealt with Chairi for over 29 year's.  I was so thankful to finally find a doctor who understood.  My last visit on the 13 of this month he did recommend that I file for SSI also.  Which I have started the process and have been denied,  but we are appealing it and we have an appt to a lawyer tomorrow.  I am 49 year's old and I never thought that I would be in the position this time in my life, but you do have to do what is best for you and your family.  I wish you the best and let us know of your decision's.  You will make the right one.  You are in God's hands

[classiechic]

Im so sorry that I never once in our conversations helped in your fear of the MRI. Selma is right. Think about how it will help you to figure out your problem.  That's exactly what I had to do. I am extremely claustrophobic also. I have them give me something to calm me, this time i will take an ativan before going in. Truth is, I just relax and close my eyes, listen to the music and pray. I think about my happiest things, such as my kids. It helps. I wish you the best of luck and u know you'll do just fine.

[selmaS]

  No matter how long ago the MVA that could account for the straightening of the cervical spine...and this alone can cause a lot of pain.PT can help, but u have to be very careful they know about chiari.

Close ur eyes while in the MRI tube...that is what I do...and keep thinking how it is going to help u figure this all out....I do not have claustrophobia and I only pray something like that would help....I am sure it may not...but, worth a try...none of us really is comfortable in there.

Do keep us posted on ur Dr search

   "selma"

[classiechic]

Really??? I'm curious to know your symptoms.=(  BTW, my hair falls out by the handfulls. Everytime I wash it, my tub is full....when i brush, it ends up every where. Also, I have pinced nerves at C3,C5 and C7, I'm gonna check with the Dr about disc issues. I know surely that I have a ruptured disc @ L5-S1. I can't wait til my MRI. 4 days and counting down. I will surely post my results.

[outdoorgal35]

Thanks for the informative information! I know I need another MRI, I have tried open ones but they just aint open enough for me. Got to find a doctor who will sedate me to where I don't know or care that I am having an MRI, silly I know, but I am severely claustrophobic. As for me getting an MRI, when I ever can find someone, how do I go about requesting thoracic and lumbar spine part and the CINE MRI? I mean, how to I explain to a doctor that I believe I need all that? Well. as I stated in my 1st post here, My old neuro told me that he did see something on the MRI but he didnt think it was anything to worry about, but did say If he sent to a neurosurgeon they would want to do surgery. I reckon I just trusted him when I shouldn't have. I pray it hasn't got any bigger. Yes, I have had a MVA but it was many years ago. Thank you for the info, it has helped me. Yes, I called the one here in Mobile, Alabama where I live and they said I needed an updated MRI and they would be glad to see me, it needs to be no more than 6 months old. UGH..I understand, so now I'm on the track of trying to figure out how to get and MRI and all.

[selmaS]

  Hi and welcome to the Chiari forum.

Sorry I was away this weekend and not near a computer.....

AS many of the members have mentioned yes, ur symptoms do sound like chiari symptoms...however, chiari can change over time, so ur 6mm herniation may have grown since ur 2003 MRI...and as a few stated u can get an open air MRI to help with the issues u have with closed spaces.

While u consider getting the open air MRI, get all MRI's out of the way. have ur thoracic and lumbar spine done as u can have a syrinx in those areas, and so many Drs only check the cervical spine for  a syrinx.

And u will also want a CINE MRI as well, this is a flow study..this checks for a obstruction to ur CSF flow....this is what causes the syrinx ro form, and left untreated the syrinx can cause perm nerve damage....the fact ur Drs left this go this long with no follow ups is unconscionable. And unfortunately too many Drs have no idea how this condition really affects us....they r being taught old info at med school and not being brought up to date once they have graduated. A true chiari specialist is doing their own research as to how this condition not only affects us, but the best methods to treat it as well.

U will also want to address the straightening of the cervical spine, which may also be called loss of the cervical lordosis...this can happen as a result of an injury or whip lash...have u ever been in a car accident?

Last, do make sure u r checked for related conditions, such as sleep apnea, ehlers-danlos, disk issues, thyroid,ENT issues, and visual issues.

We do have a list of Drs, the list was compiled by the members of Drs they went to and liked....u still have to research the Drs to find the one that is right for u..,.this list is NOT a referral.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  "selma"

[gagirl74]

thank u so much for this post! i just was at my doctors office last week for check up pcp. and he ordered numerous blood tests to see y i was losing soooo much hair. all it came back with was high cholesterol. so since i saw ur post i guess hair loss is also a symptom of chiari? strange thought i couldnt have any more symptoms..i have all plus more than what is on ur list! i have a 5mm herniation w degenerative disc disease at c-6 and c-7.  thanks again gagirl!

[classiechic]

awww =( I am in tears after reading your reply. I can totally relate with you. I keep my faith, but it's just hard to sometimes.I'm so Glad he knows my heart. I didn't think once you were on the "pity pot", I actually sometimes feel that people think I ride the "pity train"....it's just terrible that we have to live this way and it's sad for our kids. It takes my heart to see them, when i'm not feeling well and they want to do something, anything and another will say...Momma is having a bad day, she's not feeling well. Awww =( Makes me feel like a bad Mom and they deserve so much more. They are often my caregiver and nurturers.  and That's my job. It's good to know My kids and I are more like friends. We take care of each other. Yet....they shouldn't have that responsibility. As far as the Dr's, You cannot convince them that the pain causes anxiety and stress. I wouldnt have the stress and anxiety if it not be for the symptoms of pain and weakness. You are so right, All Neoro's should be trained and know about Chiari. I pray you have a Great day! Thanks so much for your reply. It feels Great to know you're not alone yet I hate to know you feel the same as I do. XOXO

[outdoorgal35]

Sounds like you have got the run around with doctors like me, and many of others on here. I was just telling my husband last night.."I am tired of doctors saying stress and anxiety has caused my problems, I didn't have these problems till the pain got so bad and caused me to have stress and anxiety!"  (if I even have anxiety at all, it is possible with all the pain and docs not understanding)You can not convince a doctor that pain can cause stress. They want to say right the opposite. I have saw so many doctors I'm just bout to give up. I lost my last 2 jobs due to the pain. Thankfully my last boss was the nicest one anyone could have asked for and she actually told me to file for disability, which I did, she saw me hurting on a daily basis, of course I'm sure I wont get it but no harm in trying. I have many of your symptoms, and all the ones I listed above. I'm at a loss. I just want to be the mom to my kids they deserve, that alone means more to me then most anything. I have missed so much in their lives and it breaks my heart looking back. I have hurt all their lives, they are 17 and 13 and I love my boys so much.  The pain has taken my life away from me. I can't do anything or go anywhere without hurting some way some how. Anyways, didnt mean to get on "a pity pot". Just tired of the run around with the doctors, my husband says that was just the way they were trained, how can one neurologist be trained and know about Chiari and 10 others not know anything about it? Don't they teach the same things in neurology 101? Praying for us all as well. Have a blessed day. I'm going to try. I know I am a blessed person in so many ways, just forget it sometimes.

[outdoorgal35]

Thank you so much for your reply..Not sure what the next step is for me, I wish I did. I leave it all in Gods hands, He is my rock! I have lived with my symptoms for years, and tried so much to alleviate them. I have a "good" day here and there, but few and far between. Thanks and have a blessed day.

[classiechic]

I am at 8mm herniation, as of my last MRI a yr ago. I have to add, when My Dr called me with My diagnosis.....i must admit, I was scared to death. I had only heard of it once on Mystery diagnosis. That was a terrible story, she was in much worse shape than mine, so I was freaked out thinking that would be me. i was told and now know after reading other stories and symptoms on here, No 2 are alike, everyone with Chiari has different symptoms at different times. The last NS i visited told me that my case wasnt severe and I may never need surgery. I believed him and prayed that he was right. Now I'm not so sure. I'm going downhill more and more daily. Yet, I'm hopeful.....I just pray that it doesnt get worse than this. My symptoms are as follows, not always together, in the exact order .

Hair loss
dizziness
nystagmus
neck pain* most recent
neck and shoulder tension, tightness/stiffness
numbness in hands and feet, lips and palate(roof of mouth)
feels like i cant swallow sometimes
coldness in hands and feet
sweating when the rest of the world is cold or opposite
right arm and leg,foot weakness
slurred speech
I know what I want to say, but the words don't come out right
forgetful, bad memory....i have conversations and cant rememeber
poor depth perception
spots/floaters in my vision
crawling scalp
back pain
leg pain, hot spots on my legs to touch
trouble walking/clumsiness
drop things/ my hands feel like they are weak, or they tense up
i get confused alot, i forget where i'm going or what i was doing.
Really tired alot, but can't sleep....or fall asleep within seconds at bedtime.
My Dh tells me I snore alot and really loud =(



I know theres more, but I cant remember them all.
Anyone else have these?
.

[classiechic]

awww =( , I can relate with you. Although My pain has just begun this past year. I can promise you that it is def Chiari Malformation. my MRI states the same thing as yours, although they didnt state the syrinx. I am scheduled on the 30th, 4 days from today for my MRI of my cervical and lumbar, and brain MRI. I'm looking forward to it. Dr's don't understand what we go through. Every day is a different day for us. The symptoms arent always the same. For myself, I am either dizzy, dealing with Nystagmus, off balance, numbness in my hands and feet, tightness in my shoulders and neck....I always have the floaters in my vision and ringing in my ears. As we speak, I have this pressure in the back of my head that feels like if i could just let a little air out, it would relieve it. =(. I've had these symptoms since I was 16 and it started with heart palpitations, I've had every test in the book and I'm told my heart is fine. They told me time and time again after i cant count how many trips to the ER i've made....it's anxiety. As far as the migraines, I've been blessed, I have only had maybe 5 or 6 in my lifetime. Last week, I woke up with a terrible headache and a stiff neck. I took a BC powder and the headache was gone, within an hr, my neck was so stiff and the pain was unbearable, went to the ER and they asked me of all my medical problems and diagnoses. So, I tell em. I have Chiari Malformation....it's scary when you have to spell it for them, Spinal Stenosis of my lumbar and possibly cervical spine. Otosclerosis....thats all I am aware of as of now. The Dr, wanted to do a spinal tap to test me for Spinal meningitis cause my neck was so stiff and painful, i couldn't swallow, open my mouth, the pain was excruciating. I lost 5 lbs all last week. Anyways.....i told him based on what i understood that a spinal tap would not be recommended with my condition. he comes back after a 1/2 hour to tell me, i was right. He had to look it up. A spinal tap would have been deadly for me. He prescribed soma and lortab.....whats sad is, I have taken these meds before for other problems and they helped amazingly. The pain in my neck was so much, it barely touched it. I got little relief. I can totally relate with you and everything you said in your first post, I could have written that. Sounds like my life. I am so sorry you are dealing with this, and like you...I am young. 32 yo Mom with 4 children who need me. I need them. I hate to know that we have to live this way, and until we find the right Dr, a Chiari Dr, a Specialist that knows and understands. Not just any Neuro will do. I wish you lots of Luck and I am praying for you. Praying for me, and all of us Wonderful people living with Chiari. Lots of Love and Complete Understanding, Casey

[sxsxsx]

I have CM1 with 6mm herniation too. I have suffered for about 10 years trying to find the right answer and the right mixture of medications to help with the pain. I'm always tired and in some kind of pain. My left arm is weak and I get horrible headache that last for days. If you think you have found a doctor that can help you stick with them. Follow through with the treatment plan and create you own headache journal and see of you notice a pattern. Sometime food, lack of sleep or caffeine can be a trigger. The journal will help you pin point what what can be adding to your headaches. My biggest issues is the nausea and vertigo. Hang in there it sounds like you might have your answer to what is causing you all this frustration. The million dollar question is now that you know what it is; what is the next step? I have yet to figure that one out. Living with the symptoms can be manageable you just need to find what works for you. Good luck! Keep us posted.

[Marybz]

She is the leader of this forum.  S

[outdoorgal35]

Thank you for your response...I hate for anyone to hurt, just glad to know I am not alone. Doctors want to make you think you're crazy and crap, just fed up with them. Not sure who Selma is but thanks.:)

[Marybz]

You have found the right forum.  I have all your symptoms. My tonsils are 5mm below the foramen magnum.  My symptoms have gotten worse this past year, because i have bulging discs in my c-spine.  There is a list of Neurosurgeons who specialize in CM.  Selma will list them for you.

[outdoorgal35]

Yes, I have tried open ones, they aint "open" enough..I know all this seems silly but some folks fears snakes, spiders, heights, etc..I fear closed in places..thank you though for trying to help.

[lydelia]

Hey :D Have you tried asking for an Open MRI? They have ones where you don't have to go into the little tube. My sister in law has to get them that way because she is claustrophobic. :D

[outdoorgal35]

Thanks for your reply as well..I know I NEED an another MRI and already tried it twice since then sedated, but apparently not enough.. the last time I tried was probably 2 years ago..I don't know what to do..its so not easy being in a closed space. I could never have gotten in one like you, they can't even get that "mask" thing on my face before I've panicked, silly I know! I was never this way when I had my last MRI! I don't know what's happened to me. But anyways, thank you again. I will pray I can get one some how.