New to the Group How do you know when it's Chiari & not something else

General
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Hi Everyone.

OK here goes… my story… I’m 46 (47 Friday) and have been dealing with extreme excruciating pain in my head most of my life but never really thought much about it until I started researching on the internet…I sought the opinion of an orthopaedic physician due to severe neck pain that ran from shoulder blade to shoulder blade and the base of my skull and center of my neck… I never did anything because A) we were always told as kids to suck it up and get over it and B) I have a high tolerance for pain but it finally got the best of me….

They said I had (after x-ray) I had a slight lower curvature on the spine and my right hip was lower than my left hip which caused a slight gate problem. The final diagnosis was cervical Radiculopathy. I then began Physical Therapy – some type of thing that pulled your head up ever so slightly but enough to lift it from your spine…. While administering heat therapy… odd but it didn’t seem to help… I did the 25 required treatments (all insurance would allow) and stopped going… Months and months of headaches continued… missed work, sleepless nights… wits end…

Finally a neuro in the building where I work noticed I was not feeling well and I explained my pain – he agreed to take my case… I had an MRI in Dec 2011 with the following findings… mild arthritis of the spine, Mild bulging annulus noted c4 / 5 and c5 / 5 with Thecal sac Impression but without spinal stenosis…..

SO after going back to the neuro to get the results he told me they were NOT migraine related but did not go into detail… I went a year and finally the pain was more than I cared to bare (yet again as I have an extremely high tolerance for pain) SO I made another apt with the neuro in Aug this year and told him enough is enough – he ordered a 2nd MRI of the brain which revealed absolutely nothing….he provided me with a TENS UNIT and Tramadol for the pain (I only take when absolutely necessary) as I’ve developed serotonin Syndrome – I was unaware that caffeine would affect uptake inhibitors which cause you to “not want to sleep” which can be stressful enough let alone headaches…. SO again I only take when necessary and cut out ALL caffeine and aged cheeses as well as pickled products – they too can trigger serotonin levels to get out of whack…

SO my question to all of you – it’s not in my head, I’m not crazy, I do have horrific pain (ask my husband) and I do not function well when I’m having a head pain… my neck/shoulders ALWAYS hurt – feels like they are on fire, the center of my skull when I have the head pain feels as though someone is putting a hot poker under my skull and twisting… the pressure in my head is so intense I literally wish someone would chop my head off my shoulder…

SO when they say it’s not migraine but offer no other explanation then what? I’m not crazy, I’m not faking headaches and I don’t like taking drugs but some days I have no choice… All the days I’ve called in sick – we get 11.25 hours a month (been on the job 17 years) I have 70 days left… I’m burning them up way too fast but there are days when I absolutely (did I mention) have zero energy (used to hike 5-10 miles with husband each weekend and do Zumba twice a week and elliptical 5 days a week) which has all but slowed to a trickle of what I used to do…. My intimate life has all but ceased to exist as well…. I have no energy for anything….. the good days I do have I jump at the opportunity to clean the house and get things done I’ve neglected (with the help of my ever so patient loving and understanding husband)

I’m getting more aggravated as I go – people I work with claim I’m faking it and that if I had a headache that bad then why doesn’t a doctor do something and why was I at work.. A) I need the money and B) the doctor just says it’s not migraine… HELP SOMEONE

Fatigue, diagnosed with TMJ in 2008, trouble sleeping and getting comfortable, neck pain most every day, crackles and pops when I move my neck in any one direction, legs ache after just a few minutes of standing, get dizzy if I bend over and raise up too fast….. I’ve got many more….

Any thoughts from the Chiari group – is it possible that the radiologist missed something!

Thanks in advance, Dewbug

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I don't have much advice about doctors as I'm still trying to navigate them myself, but I just wanted to tell you I'm sorry you are feeling poorly, and between doctor visits I encourage you to do everything you can on your own to feel comfortable. I also very much struggle with neck and shoulder pain. I have Chiari, a 10mm herniation, and a desk job and they don't mix well. So far surgery hasn't been on the table for me, but I'm going to see a NS next month, so we'll see.

For now, I alternate with ice and heat and try to get massages whenever I can afford it. I even bring ice packs to work, I don't care if I look stupid. I try to stretch my neck and shoulders frequently without overdoing it - stretching beyond your normal range of motion could make it worse. This may sound silly, but I also try to concentrate on wearing comfortable upper body clothing. I notice that if I wear anything even slightly constricting, it can actually make the neck pain worse because I'm always pulling and twisting my neck trying to get comfortable. I try to make sure I really have a comfortable pillow to sleep with, there's nothing worse to waking up in the morning already being in pain.

Hopefully you can find a great doctor to assist you soon, but in the meantime, do everything you can to take care of yourself. Best of luck to you!

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Follow up! Went to my neuro yesterday and they have ruled out Chiari - SO what's my next step.... my BP was 159/89 and they said it was high and refered me to an internist.... SO waiting on this visit.... I'm not crazy, I have horrific pain in my head, neck and shoulders not to mention the TMJ - I guess I'll post when I find out what the internist says.,... THANKS EVERYONE FOR YOUR SUPPORT I'm sorry you all suffer from Chiari.....

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Dewbug,

I would get a copy of all my MRI's and a copy of the Radiology Reports. They list everything they find on the report. Research each individual item. I would also get a second opinion. I don't want you to have Chiari, but something is going on. I saw 52 specialists before I found the right NS & diagnosis. Never give up. It took me four years. I understand your frustration.

We are still here for you. Please don't leave because you don't think you have a CM. We will support you until you find out what is going on in your body. Hopefully it will be something easy to treat. Just know you are not alone.

Tracy Z.

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TO EVERYONE!

I SO thank you for understanding my frustrations and my pains... I know something is not right with my body and can't seem to find (like most of you have gone through) the RIGHT Dr. to figure it out... I'm somewhat hopeful for the next apt with an internist as he is supposed to be at the top of his game. i'll continue to post and communicate my progress.... I have ALL the symptoms with Chiari without the "malformation" which makes absolutely no sense to me especially when they say "they are not migraine" headaches...

I PRAY for each of you on this group and wish you to have better health and happiness and that GOD Bless each of you with a peace of understanding all that you are dealing with. Again I'll post as I find things out and continue to read and learn. Most thankful for my new friends...

HAVE A BLESSED DAY!

Denise

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UPDATE! I've just come from getting my blood test results which show high levels of T3 and T4 thyroid hormones... Not sure exactly what that means but the lab said it was high and probably meant I had hyperthyroidism... OK! At least I have something to hold onto. My NEW nephrologist has schedule a renal artery ultrasound on my kidneys arteries this Thursday SO I'm anxious to see what that shows... the hypertension is a result of the thyroid problem but they claim that it can also cause headaches... I have a headache now going on 6 days which is normal for me... on a pain scale we are looking at a 6 out of 10... I have many symptoms for hyperthyroidism and many more that are not listed so at this point we have a little more to go on....

I'll keep you posted and I appreciate the support and prayers...

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I am so glad you are starting to get some answers. If it is a thyroid problems they know how to treat it. I hope the ultrasound gives you some more answers. Let us know how you make out when you have time. Good luck

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Hi Fellow Chiarians.... I've had several doctor apts since my last post and have discovered I have Graves Disease and hypertension associated with the disease. The excurciating headaches and neck/back pain are related to the disease.

I'm doing well but anxious to find out the course of treatment for the disease as there is no cure only remission or radioactive iodine to "kill" the thyroid. I'm surffing the internet blogs to see what others are doing for their treatments... THANK YOU ALL for your support prayers and friendship. I continue to pray for each and everyone of you