Chiari Online Support Group

Chiari and me


#1

well i was diagnosed 3 yrs ago, i had gone in to get an mri because i had suffered from bad headaches and wanted to know why. After i had gotten the reason for my headaches my treatment stopped, my doctor didnt know what to do so he had sent me to a neurologist who then sent me to a neurosurgen. the ns told me that he could do sugury on me but that nothing would change, so i was sent back to my pcp. ive been experiencing numbness all over, i dont feel hot or cold, my cholesterol has shot up with no reason as to why, im tired all the time, no energy to do anything, my hands and feet swell and no matter what i do i cant lose weight. I recently had a thyroid test and wouldnt you believe it came back normal. I feel that im not being treated right and havent felt that way for years, by my family and people i thought were friends have thought of me as a hypocondriact even though i showed them the test results of my condition and what i get to live with and yet i get treated like crap from my family. All i want is the right answers and i feel im never going to get them.


#2

Hey CraigC,
Sorry to hear of your suffering. When it comes to neurology your situation is not uncommon. I am often saying it would have been easier if I’d lost a limb, people would then be able to see that I have an issue. The label of hypochondriac is frequently given when the ‘professionals’ have no answers.
I’m in Australia and here we have GP (General Practitioners) then we have physicians, then we have specialists. As the name states a GP deals with general medical concerns, they have a broad overview of many common conditions and deal with the day to day medical needs of patients. When they cannot define a patients condition or are unsure then often a referral to a physician can be made.
The physician’s role is to investigate. When a patient has symptoms of an unknown origin, a physician takes a broad overview of symptoms, they may send the patient for further test/examinations and refines a diagnosis, from here a referral to a specialist maybe made.
If, as you say, you feel that you have not received the right answers then possibly a referral to someone to more fully investigate your situation maybe more appropriate. I say this as I have been in a very similar situation where certain medicos have written symptoms off as insignificant, but I can tell you as the patient those symptoms can be far from insignificant to manage. It wasn’t until I had a major medical incident that things were more fully investigated and an issue identified, then I received a more complete diagnosis.
In very ‘layman’s terms’ a surgeon’s role is that of something similar to a mechanic. Find the problem part and fix it. For example the car has a rattle, find the part that is rattling and repair it. They may not inspect the entire vehicle, only the rattle that has been identified by the driver. The problem with this approach is that the rattle can be a result of a bigger issue and if the bigger issue is not managed then later the wheel falls off and can cause a major crash.
People outside of your reality can have no idea of what you have to manage, repeatedly telling them of your situation leads to only reinforcing that opinion of hypochondriac. If you believe there is an issue then find another dr, find a physician who will more fully investigate, get the answers for yourself. I won’t say I was pleased to finally get a diagnosis but to finally have answers was a relief. I was VERY angry when I finally did get the diagnosis, I’d been telling medicos for 2 decades there was an issue, but had been written off repeatedly.
I have had a few neurosurgeries and although some dr’s think that it’s all been fixed surgery has brought on a whole new set of symptoms that I’ve had to learn to manage and none of it has been fun. Some dr’s make out they have ALL of the answers, they don’t. As I say GP’s or PCP’s have a broad overview and specialist specialise in a specific area. Outside of their specialisation their knowledge is limited.

In my opinion it sounds like you need a physician to have a more holistic view and investigate more thoroughly, to find the right answers. The reality is that even after all of the investigations they still may not be able to give you those concrete answers, but at least by fully following things up you know you have done all that you possibly can.

Merl from Moderator Support Team.