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.

[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.