Chiari Malformation noted on medical records, but never to the patient.
I have suffered with what I have been told by doctors is chronic pain for about 6 years. My symptoms include headaches, pressure in my low neck, back pain, tingling in arms and legs facial pain, among other things. For about a year now I have been told I have fibromyalgia and have tried treatment for it as well as all the major medications with no success. I recently started seeing a pain management docotor who had me get and MRI. When I went for my follow up visit she told me everything was normal and just wanted to put me on more medication to help me deal with pain. I was frusturated and when I got home I looked at the radiologist report myself and it read "chiari malformation I noted." I had bever heard this term. I pulled out past MRIs and tests I have had done over the years and all mentioned Chiari Malformation. I had no idea what this meant so I researched it and it sounded exactly like what I have been dealing with throughout the years. I just don't know why a doctor never mentioned it to me when they saw it. I feel like my pain is getting worse to the point where I don't really no what else to do. Do I mention to my doctor that I found this on my records? Thanks for the advice.
Hello and welcome! I am sorry that you went thru this but it is not uncommon. Alot of doctors think that Chiari cant be symptomatic. I would absolutely mention it to them and ask why it was never disclosed to you the patient. You should take those scans and see a true Chiari specialist. Until you do your symptoms will not be validated. There is a list here in the forum of docs other members have used and liked. I dont know what part of the country you are from but on the list there are doctors from all over the USA and even a list for some other countries. You will need to have some additional tests done to rule out associated condtions like CSF blockage or a syrinx. Keep in mind there is no cure for Chiari but surgery can help lessen the symptoms and stop the progression. The symptoms are real and we have alot of symptoms in common so dont ever let anyone tell you that it is all in your head. Studies have also shown that a significant percentage of people with a diagnosis of fibromyalgia actually have Chiari and have been misdiagnosed. When your symptoms started had you had an accident? Head trauma or whiplash injury? Alot of us become symptomatic due to trauma.
I do believe that Chiari is overlooked by doctors who dont understand way too often. Good news is you have come to the right place for support and information. I was diagnosed last August and am currently waiting for a surgery date. If it had not been for this forum I would still be bouncing off the walls not knowing which way to turn. There is help so dont give up.
The same thing happened to me...I was diagnosed with Pseudotumor Cerebri (which basically means elevated intercranial pressure due to increased CSF but without a known cause). When I was given a copy of my lumbar puncture's opening pressure finding it caught the tail end of my MRI report (it was all part of my ER report); that MRI report stated I had a 6.5mm herniation consistent with that of Arnold Chiari Malformation. My neurologist never mentioned it to me and only dismissed it when I brought it up to him. I match many symptoms of Chiari yet wait in limbo b/c he states that's not what I have. It's very frusturating b/c I think he is not exploring that option because he already has my "disorder" wrapped up in his mind.
I have been thru 4 neurologists now and it is always the same thing. They try to diagnose everything but chiari and give you more and more meds to treat what they suspect it may be. The sad thing is the obvious is staring them in the face and they just wont admit Chiari can cause symptoms. My question now is if my brain stem is compressed and not even midline as it should be how can it not be making me sick?? No reply usually.
Unfortunately this happens all too often....I had tethered cord recorded on a MRI and was never told...not until I requested old reports did I find I had this condition.
Once u have the dx u have to find a true chiari specialist.
And as a few above have mentioned a lot has to do with the mis treatment of chiari in med school...it is not taught with new updated info gathered from the many chiari drs that do their own research....make sure ur dr is one that focus's his practice around chiari and related conditions.
If u have a good PCP u may want to see if they will be a good advocate for u....many times they only tell u what they r told by the specialists...they r not going to go into the MRI's or the reports and try to dx u as that is not their responsibility....
If they r willing to learn and work with u that is what u will need as well as a good local NL to run testing for u.
For some reason too many drs feel Chiari is an insignificant finding.....we all know too well that is not so.
We r happy to have u join us, but not happy to about the reasons that bring u.
This should never happen to anyone. It's pure arrogance. It's our bodies, time, money, etc....................... This kind of thing needs to stop. It happened to me as well. Not until I became suspicious about my MRI and ordered my own copy and report, did I find out I had Chiari.
Please see a Chiari specialist who dedicates his or her time to the treatment of Chiari. Chiarians walk through their door every day with the same complaints, so these specialists will be more sympathetic to your symptoms. They will recognize your symptoms as a possible chiari symptom.
I'm sorry you are not feeling well, but with this new information, you can begin to find some answers and relief. Good luck
Wow, so much support. I really appreciate all of it. I was in a car accident about 6 years ago which was when my symptoms started to show and over the years they have gotten progressively worse. But I can remember suffering from migranes (migraines) since the second grade which doctors thought was odd, but just blamed them on poor eyesight. Doctors have told fibromyalgia could have come from my accident, but I always thought there could be another issue and now I find this on my scans and reports. I also saw on a brain MRI I had done in Nov. it was at 4.5mm and on another brain MRI I had done in Jan. it was 6mm. I have an appointment with my primary care docotor today and have all my scans and records to show her and hope she takes me seriously. I feel that sometimes doctors write me off because I'm younger and don't take my pain seriously, but I hope this can be the beginning to find some relief. Thanks again for all the advice and support!
Hello I was wondering if I could ask someone a question who has had surgery for Chiari 1, I am considering it. The surgeon has recommended it and said it may help with my headaches and general feeling of unwell.
B4 u consider surgery, look at ur symptoms, and all related conditions if u do not have a CSF obstruction and can manage it may be best to be monitored or at least see another Dr...as u do not want to go with the first one u see, get a few opinions and compare them.
What testing was done so far besides the brain and cervical spine MRI?
Many that rush into surgery can end up feeling worse, so take ur time and make sure all related conditions r ruled as as they can affect how u feel and heal should u go forward with surgery.
Thank you Selma, I will do that and make sure it is right for me.
I am trying new meds and I am praying they may work. I just want to be able to do normal things like go to the park with my son, not feel like throwing up all the time and sit at a restaurant and not deal with constant pain.
But I sure don't want to be worse off and I know so many people have much more to cope with than me. Thanks again.
Constant pressure and upper neck pain feeling sick in the tummy. I have been to hospital 3 times this month with miagrain vomiting/ headache and head pressure. They give me morphine / drip and send me on my way. But I did find that when I was breastfeeding I did not get hardly any. I have had the flare up after stopping. Usually only have to go to the hospital once a month. Having trouble with daily tasks like sleeping - so I sleep sitting up to help with the pressure. Pegging out washing any movement where my arms are up. In the early days I only experienced discomfort exercising and sitting down for long periods at meetings. However, now it can be the smallest things like wearing a swimming costume that drags on my neck.
Thanks for caring.
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