Chiari Online Support Group

Newly diagnosed and frustrated still


#1

So I’ve had unexplained symptoms and issues my whole life… my neurosurgeon says it can cause my head and neck ache… my fiance asks, knowing I’ve been recently diagnosed with neuropathic pain, could her body pain be from the chiari? We are answered a quick No… then went on explaining the test needed. Now I meet with the neurosurgeon and unload my massive health history onto them so they can give me accurate information only to have the neurosurgeon ask me if I’ve been reading things on the internet. I finally receive a diagnosis but even now they act like this causes my head and neck pain but in no way could be causing any of the loooong list of unexplained symptoms… I am relieved for a true diagnosis but frustrated because I can read information, doctor written information, yet my doctor feels it affects my headaches only… I unfortunately lost my job from missing too much work and also my insurance so I am on medicaid. This limits my options tremendously…


#2

Hey Veronica,
I am sorry to say that this is all too common and has been happening for decades. I have been having this battle for near on 40yrs, with me telling the medicos “There is something wrong…” only to be written off time and time again “There’s nothing wrong, it’s all in your head”. They even locked me up in a psych ward ‘Cos you must be crazy to be having pain like that…". To cut a long story short, I’m driving down the road on a summers day and the lights went out. I couldn’t see. I called my girlfriend, and she went “What?” in disbelief. She came and got me, taking me to see a dr, who sent me for CAT scans. Dr comes out with “Ohh look what we found…” I was just so angry, these so called medical professionals would now accept there was an issue because they had a picture, they had proof. So they operated but the symptoms didn’t completely abate, so again I informed them that something still was not right. And there response “Ohh but you have a history of mental health issues…”. My girlfriend was with me and she could see the rage within me welling up and luckily for me she took over the conversation. They had a previous diagnosis and were much more willing to accept another dr’s opinion regarding mental health, than my reporting to them of physical symptoms. But prior to agreeing they had given every diagnosis possible. First was obviously mental health, then it was psychosomatic, then it was idiopathic in nature. Then came the semi acceptance with a hint of doubt diagnosis’ of nerve pain, neuropathic pain, stress (yes, I was stressed. Stressed by all of these damn dr’s) So then we tried their treatments, medications of every colour and creed, counselling, pain management counselling, stress counselling. AHHHHH I wanted to scream. I had massage therapy, I had hydrotherapy, I even had acupuncture. None of it worked. But because a neurosurgeon had said “We operated, We fixed” no further investigation was followed up. Then I had a major incident and collapsed. They reluctantly agreed to do another scan, this time a MRI scan and upon reviewing it agreed that there was an issue. I wanted to say “I TOLD YOU SO!!!” but I think they got the message loud and clear from my mannerisms.
Due to the way in which my situation has been handled, to say that I’m less than willing to accept any medicos opinion as gospel, I have now been listed as a non compliant patient and it’s true I question everything, but not once have they ever enquired as to why I’m not as accepting as they may wish. It has been my past experience with the medical profession that has driven me to this and not just that I have a wish to be a ‘non compliant patient’, not at all.
As a society we seem to put these dr’s up on a pedestal. The problem I see is that some medicos see that pedestal as a throne, like they have a right to look down on us and pass judgement. As if we are in this situation as a matter of choice.

Ooppss, I just read all of that… ….Sorry, rant over.
I can assure you, you are not the only person to be put through all of this. I am in Australia and our health system works much differently to yours, our system is much more holistic and works for the patient rather than working for the medicos. I know here there are such things as benevolent health networks that can assist and possibly there may also be such health networks near you. Your pcp should know of any such services. It may be well worth finding a health advocate to investigate on your behalf.

Merl from the Moderator Support Team


#3

Holy cow! It somehow makes me feel a little better knowing others have gone thru similar ordeals. I mean its frustrating. Makes me angry. But I know I’m not crazy. I’m not imagining things. I have my health records for the last 20 yrs from my previous doctor. I’m going to stick a post it note on everything I came to him about that proves I didn’t just read online last week but that it’s been years of random illness and ailments


#4

Hey Veronica,
I can assure you, you are definitely not alone. For many of us with rare conditions it is actually quite common to be misdiagnosed or have symptoms discredited and the easiest answer is mental health. You can try to identify it for your dr, but some are less than willing to accept, even when it is written in black and white.
I have had the ‘joy’ of enduring 6 neurosurgeries and at one point I questioned the surgeon’s “we’ve operated, we’ve fixed” attitude. And he did not like this one little bit, responding with “I am the neurosurgeon, I have done years of study, so I know. You, you’re just the patient, you wouldn’t know…” I know symptoms. I know pain, I know severe pain. But some of these medicos can be so beyond arrogant and less than willing to accept anything but their own opinion or the opinion of an equally qualified practitioner. I’m often saying 'A bit like oil and water. Arrogance and ignorance do not mix. Some dr’s have an excess of both".
Best of luck with your endeavours and please let us know how you get on.

Merl from the Moderator Support Team


#5

All I have to say is wow!! I went through very similar situation. Please don’t go through with surgery with that dr. (Like I did with mine). There are specialists out there that knows what chiari causes and what else to consider before surgery. You might have to travel but it’s worth it.
Watch this lecture by my specialist dr in NY.
https://csfinfo.org/videos/physician-lecture-videos/csf-lectures-archive/thehill2018-greenfield/


#6

I had the surgery 2013 at age 66. After years of being looked at like was crazy and being told I was. My stomach has hurt my entire life. Dizzy and off balance. The last 20 years I could not turn my head , then I would have true vertigo.I woke in 2013 all was gone, stroke systems on left side, I could not feel my legs, pins and needles sticking in my entire body. But the worst was that I had thousands of pounds hanging from my head and neck.Took 13 months for my legs to wake up. still Doctors will say oh it could not cause that, we need to test you for this or that. They are stupid they don’t know, they don’t care I wish one of them could live one day in our lives.My Chiari Dr. told me it can do anything to you depending on witch nerves the brain and spine are pushes on. I fell you pain. Prayers for all of you. dee dee


#7

It is pathetic and disgusting for the medical community to treat those they toke an oath to try to help the way they do. How a dr can look at a person with Chiari and say the years of symptoms that no test can show reason for is not caused by this. I have a physical copy of the last 20 years of doctor visits, after my neurosurgeon asked if I had been reading up on the Internet I went through with sticky notes and marked every visit every procedure every specialist and that is what I’m going to hand him this Friday at my appointment.


#8

I hear you. I had been told I was all but crazy all my life, Dr after Dr. Did not find mine until I was 66. But that is not the end now they say you had the surgery, you are well. I wish they could live one day of my life. 1 thousand pds hanging from your neck. Numb legs, after 2 minutes standing your back feels its going to break. Stomach always hurts, cant eat anything that does not smother you. OH yes frost bite all over your body. Only one day.


#9

You are not the only one whose had that “We’ve operated, we’ve fixed” attitude I can assure you. Another ‘favourite’ line I’ve received “Ohh it can’t be that bad…”
I got that line from a nurse and I gave her an earful.
As a quote from another member “You don’t know it until you’ve lived it”
And it’s true.

Merl from the Moderator Support Team