Help me understand please

I just learned I have Chiari 1 Malformation with a 7mm herniation. However the MRI says borderline. It was also discovered on that MRI back in Nov 2020. However, I was not told about it. Every time I would go to my Dr and tell him the pain, weakness, etc was getting worse he would say “you have arthritis, of course it’s hurting.” Then he would claim that I was having dirty UAs every 4th visit almost like clock work. So at my last visit on June 25th, I fired him as my doctor. That evening I literally came across my MRI by total accident. It apparently was left in my husband’s car and forgotten about. I found it when digging out papers from his passenger door cubby. When I read the report and seen the ‘borderline Chiari 1 Malformation’ I was confused so I looked it up.

It explains so much over my entire life… It’s like OMG I get it now. Because reading legitimate medical articles etc on CM1 and seeing the list of symptoms and the misdiagnosis before finding CM1 for other people, that I’m also experiencing and have been for some time and others that are getting worse. But even tho everything I’ve read and everyone I’ve talked to that has already had the decompression surgery for 4-6mm herniation and similar or even some with less symptoms than I have, says that mine is much more severe than just borderline. But I can’t get doctors to even listen to me after they’ve seen the word borderline. If they see the MRI report before talking to me, they immediately dismiss me and say that the CM1 isn’t what’s causing my problems. Even a resident whom literally admitted he had only learned pretty much just the name a few weeks prior, put in my records that he didn’t believe a Borderline CM1 would cause symptoms such as pain or weakness…

So, I’m hoping someone can help me understand this better. I just don’t know much other than what I’ve read but that’s not real life experience. To anyone that’s made it this far, thank you for at least reading my ramblings and I’m sorry if it’s confusing. Please feel free to ask any and all questions needed to get a better understanding of my situation if needed.

Chiari SUXX

Hey Tiffany,
Welcome to Ben’s Friends.
I too am a neuro patient and I’m sorry to say this but your experiences with the medicos is not unique. Reading through the posts you’ll find many a similar story.

For many years I was told ‘There’s nothing wrong’ it was all put down to growing pains or a psych issue ‘You just can’t be having pain like that… …we can’t find anything…’ that was until they did find something. Then it was like some new discovery ‘Ohh look what we found…’ I’d been telling them for years something wasn’t right but they still kept minimising my concerns ‘Ohh it can’t be THAT bad…’ but it was. ‘Ohh you must just have a low tolerance to pain…’ Grrrrrrr

Some medicos work on the theory that if the tonsil is less than a certain size your symptoms will be minimal, but that is not always the case. Some people can have a large tonsil but minimal symptoms, others can have a smaller tonsil and yet have no end of symptoms. I too have had the issue of dr’s referring back to another medicos report, so no further investigation is undertaken, this happened repeatedly. I was lucky enough to see a professor as part of an insurance claim. His report was independent, very comprehensive and supportive, I now use his report as the basis of anything medical.

Often when we see some dr’s our information can be taken as hearsay or seen as an exaggeration. I’d recommend you keep some sort of ‘Pain Diary’ with the date, time, pain scale, symptoms, medication, sleep pattern, activity scale etc, etc. It can help identify any patterns with symptoms. It can also show the dr’s that you’re being proactive in your own care. When your symptoms increase, make an appointment, tell them, get them to keep a record too. Document it all.

As I said earlier my symptoms were minimised, so I ignored them and tried to get on with life. This was a BAD, BAD idea. My symptoms progressed and progressed and by the time I did act it had become an emergency situation. Ahhh, my advice, DON’T DO THAT. You know your body better than anybody and if something is not right you have every right to ask for another opinion. For many of us with rare conditions we really do have to learn to become strong self-advocates because, honestly, only you know how bad BAD can be for you.

P.S. Your ‘ramblings’ are not confusing at all. In fact they make a lot of sense to me.

Merl from the Modsupport Team

Hello Chiari SUXX ,indeed chiari sucks big time, i first started getting worried sometime in 2018 when my fingers,sometimes toes would go numb.I have been to numerous docters and even had surgery for carpel tunnel syndrome on my right hand. My vision started to get affected ,blurry vision, my GP said its stress but i knew it was more than that. I booked myself to a neurosurgen who diagnosed me with chiari but said its managable. My symptoms got worse by the day. I went to two neurosurgeons who didnt want to operate, I finally found one and had my decompression surgery in March 2019. I feel much better i must say, although some symptoms are still there but the quality of my life has improved. I wish you well. I am in South Africa by the way.

Hi … Your message hit home with me. I have CM1 5 mm herniation. In December 2014 I had decompression surgery. I experienced the same pain and symptoms as you. I can’t imagine what I would have done if my doctor was ignoring me and my truth at the time. Unfortunately, we see it every day because Chiari is not common and the diagnosis can be challenging. Just know you are not alone and keep moving forward. Advocate for yourself because only you know what you’re experiencing. Best of luck & God Speed.

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Hi Chiari SUXX - I’m kind of in the same boat as you are. I’ve had 6 MRI’s for various issues (dizziness, vertigo, swallowing problems, strange facial neurological issues, neck problems etc) over the last 20 years and only on the last one was mention made of this. It said something along the line of “incidental borderline chiari, stable compared to last imaging.” So even though it was seen on the “last imaging” no mention was ever made on previous reports and because it’s “borderlline” no one cares to look into it any further despite having years of uexplainable symptoms.

Sad to say, I’ve pretty much given up on ever getting help for this and given up on the medical community. At this point I don’t even want surgery (recovery looks too painful for me to even think about). All I want is for a doctor to acknowledge that yes, I do have Chiari and yes, it is most likely causing my symptoms. I’ve found doctors are notorious for not getting to the root of a problem and instead giving prescriptions for the symptoms.

I don’t know where you live but if you are near a teaching hospital I urge you to try to see someone there; hopefully they will be more responsive than other doctors you have seen. It’s hard when doctor dismiss you without fully listening to what you have to say.

Keep us informed as to what happens.

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Hi l am sorry about your condition, l was lucky enough to ve able to discuss my condition with my health care professional team in South West of UK. Before l ve met them l learnt and involved myself joining so many different group, printed out all the informations wrote every symptoms, treatments etc, so l became more and more experience about my Chiari conditions, In my opinion doctors, consultants, are busy and don’t always know thoroughly about any condition of their patients (don’t forget they have to see and manage lots of conditions) so when the patient takes control and share with them, they bound to listen, understand and share your knowledge with them, they will feel that you really care by taking accountable of your condition and ask them to help you, explaining to them that this condition is effecting “your quality of life” then they feel responsible to help you. Don’t give up just like us,vthey are only human, you can’t keep pulling your MD and blaming them,is your health, your responsibility to persuade them to help you and its your right, so keep learning and share with them, put it on their plate and tell them, that THEY are the only people WHO can help you.

Hi Tiffany,

Your experience with these doctors sounds frustrating, to say the least. However, your courage to keep working with doctors to get answers is remarkable. It takes a great deal of resilience to advocate for yourself, and I want to acknowledge that your strength is evident. Please know that this community cares about you and is always here to support you.