Chiari Online Support Group

Newbie here! Hi!

Hi everyone! I’m new here and I wanted to introduce myself. I’m Kylie and I live in Iowa. I am a mom of two amazing kiddos, Emma-12 and Drake-9. I was recently diagnosed via mri which I had due to becoming extremely symptomatic. I have an extreme amount of pain in my arms and chest, neck, bilateral shoulder pain, bilateral ear pain and pressure, ringing in my ears, and upper back, severe headaches, seizures, insomnia etc. I meet with neuro next week to come up with a game plan, but am dealing with everything with meds until then. I have been dealing with symptoms for over a decade, I just didn’t know what I was dealing with! I dealt with the migraines, double vision, brain fog, eye pain and so much more for so long that I just thought it was normal. Until about a month ago when my arms and hands went completely numb, and I started getting severe nerve pain and upper body muscle spasms so bad I thought I was having heart attacks, then my trunk and legs and feet went completely numb, then I decided to get help. I know this is long, but I’m glad to finally be among people who understand and can help me understand what’s going on in my body! I am also a youth track and field coach and a youth cheerleading and acro coach, a month ago I was putting high schoolers up in cheer stunts, now I can barely wash my hair because my hands hurt so bad, I’m praying neuro can shed some more light on what’s going on.

Hey Kylie,
Welcome to Ben’s Friends. My name’s Merl and I’m a member of the Moderator Team here. Don’t be worried about the length of your post, if you’ve got things to say, just say it. I too have a ‘brain issue’ with ‘something that shouldn’t be there, growing in my head’ which has required a few neurosurgeries to manage. When my journey first started I could have written a novel. Those questions that keep rolling over and over in your head, you have to get them out, if you don’t they can drive us damn near bonkers. Who better to ask than those who have been there, Us.

Your comment ‘…I just didn’t know what I was dealing with! I dealt with the migraines, double vision, brain fog, eye pain and so much more for so long…’ is VERY common. But those symptoms can also be contributed to everything from posture, to hormones, stress etc etc. I say this because I was given every sort of diagnosis before a confirmed diagnosis was established.

I think it’s great that you’ve got an appointment with a neuro and you’ve already got an MRI completed. Can I ask, the neuro, is that a neurologist or a neurosurgeon? Either way, from the images, they should be able to confirm a diagnosis and recommend a treatment, that is, if they deem treatment appropriate. I say this because sometimes we’re told ‘Let’s just monitor it for a while, see if there’s any changes…’. If they can relief symptoms without surgery, they will often attempt these options first, avoiding surgery if at all possible.

Please do keep us informed. I’d be interested in how it all goes and if you get any clearer answers.

Merl from the Moderator Support Team

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Hi Merl!!

Wow! I’m humbled and so grateful to receive a personal response to my thread post! My appointment is with neurosurgery. I have had an appointment with neurology and that’s who did my mri and found the CM. I have dealt with manageable symptoms for a long time, but about a month ago everything went haywire and my entire upper body went numb and started spasming so badly my doctor took me out of work. I have been in and out of the hospital to manage pain as nothing works. At one point in the er they had given me two doses of fentanyl and my bp was still 166/100 and pulse 165, my baseline bp is 90/60 and resting pulse is 55 as I am an avid runner and lifter. I am in so much pain I can barely get out of bed, and it’s nerve pain. Different textures hurt my skin now, it feels like everything’s on fire, plus lower body symptoms that I won’t go into :smirk:. My neurologist isn’t quite sure what’s going on so he’s punting to neurosurgery. I’m hoping they have more answers. Thank you so much for reaching out!

Kylie, we are very personal here! Unlike some web communities, we are selective about who gets in (we need to be pretty sure you’re a genuine patient or family member) and our volunteers like Merl do keep an eye on the activity to make sure that our community is safe and supportive for everyone.

Did you know, though, that this community is just one of over forty support communities in the Ben’s Friends network?

We’re glad that you found us, Kylie, and we hope that you will be glad too.

All the best you you

Seenie from ModSupport

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Hey Kylie,
That title of ‘Nerve Pain’ has many connotations and depending on the dr treating you can depend on the recommended treatment. It was one of the many diagnosis I have received. Some dr’s are of the belief that nerve pain has a physical cause, some are of the belief that it’s psychological in nature, some even believe there is no such thing as ‘nerve pain’. Some of the medications prescribed for nerve pain are simply nasty in their side effects.

The problem I have with the term ‘Nerve Pain’ is this:- It is very generic and not very well defined. Often when no physical cause can be attributed it’s called nerve pain.

Another point I’d like to make here is that when you hurt your arm it affects your arm. You may have difficulty with movement, you may have difficulty lifting objects etc. But when it’s your brain it can affect EVERYTHING. Some medicos have great difficulty in accepting this, as it was said to me as I was laying in a hospital bed clutching my head in absolute agony “Ohh, it can’t be THAT bad…” post surgery. Others who have never been in this situation can often have no idea just how bad it can all be. ‘Just take a couple of paracetamol…’ which for me is about as much use as a sugar tablet for pain. We have a physical cause, we know the source of the pain, the reason for the pain, but often when it’s a physical neurological cause there is very little in the way of treatment and although surgery may treat the physical cause, the ongoing issues of pain can continue. In these situations trying to obtain true answers can be near on impossible.

I would recommend making a list of possible questions you may have for the neuro. I found that I was being bombarded with information and at the time I wasn’t processing it all. Once I’d left the appointment I thought of all of these questions I should have asked. A list would have helped me get some answers to some of my questions.

Wishing/Hoping/praying for the best outcome for you.
Merl from the Moderator Support Team

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Here’s the whole story, I haven’t been very good with keeping up with my health as I have always been the suck it up buttercup type. I always thought my pain just came from wear and tear on my body from years of sports, mainly basketball, and being extremely scrappy and spending a lot of time on the floor scrambling after the ball. I just figured everyone had bad headaches, everyday, so I just worked through the pain. Until about 3 years ago when I was diagnosed with hEDS, but I still wasn’t great with keeping up with seeing any doctors about any new pains or anything. I had a grand-mal seizure 2 years ago but nothing showed up on any tests so I didn’t pursue anything more. It wasn’t until this extreme pain started about a month ago, that I decided that something was seriously wrong. Let me describe it, it’s like this lightening bolt of pain that goes all the way down my arms and legs that burns, tingles, I don’t even know how to describe it. My shoulders and arms get so incredibly fatigued at the slightest movements, I can’t even do my makeup anymore, I have to wear gloves because the texture of things against my hands is torture, but i can’t feel my own skin to touch myself, everything is numb. My feet and legs don’t feel cold anymore nor can I feel sharp, my upper body doesn’t feel cold anymore and my fingers don’t feel sharp anymore either. I’m so ready to see the neurosurgeons. I’m not used to being basically bedridden. I’m not handling this very well, I’m used to being active and up doing things with my kids, this is really putting a damper on my lifestyle. Im barely moving on gabapentin, diclofenac, hydrocodone(I barely take this, I hate it), tizanidine, Keppra, topamax, and phenergan, I’ve never been on this many meds in my entire life, and now within 3 weeks I’m on 7. Now I’m rambling, I’m sorry, I’m just lost and scared.

No, you are not rambling at all. You’re dealing with a situation in about the only way you know how and that is not considered ‘rambling’. I have seen more dr’s than I can count on my fingers (and toes). Each has had their own opinions and each has discredited any other opinion, especially mine. Once you’ve been put through the medical wringer once or twice, you learn to just get on with life as best you can. There’s a line from a song called ‘Frontier Psychiatry’ and it goes “He’s a nut, he’s crazy in da coconut…” and when the medicos couldn’t ‘find’ a physical issue with me, it was all labelled psych ie He’s a nut… They even locked me up in a psych ward ‘cos you just can’t be having pain like THAT’. So I ignored it all, for years, and got on with life. Sure, I was having odd pains, weird sensations and the such but there was no way I was going to a dr about it.

So I’m driving down the road one day with a van full of people and the lights went out. I couldn’t see. I pulled over and called my workplace. My boss at the time, who was by this time also my girlfriend and now wife, wouldn’t let me ignore it anymore. She escorted me to the dr, then took me to have a scan. And the Dr came out with the line 'Ohh, look what we found…" I was just so angry. I’d been telling them for years something just wasn’t right, but as there was a previous (false) psych diagnosis everything was labelled psych and he comes out with this like it was some big surprise. Let’s just say I wasn’t happy. I was told I’d have to wait 6mths to see a neuro, I wasn’t playing that game. We often NEED to be strong advocates for ourselves and I found a dr’s surgery with a neuro attached making the wait weeks, not months. He operated.

Now whose rambling??? :laughing:

And this was just the start of the journey back in '96, it’s been a nasty rollercoaster ever since which has required 6 neurosurgeries and a few other related operations (the last being only a few weeks ago) and things still aren’t ‘Normal’ (Whatever the hell ‘normal’ actually is). Some people think when you have surgery ‘It’s all fixed’, but I’ve found they may fix issue ‘X’ but in doing so it unleashes symptoms A,B,C,D,E,F…etc, etc And sometimes I do question if it was all worth it.

You’ve got a whole soup of medications there and you may find that a new dr coming into the mix may ask you to reduce all of them so they can get a clearer picture of the situation as some meds can mask some symptoms. They call it masking, we call it managing, but they may request a reduction. So please be aware of this. It can be a little confronting when they ask. But if it helps, then who cares?

Please do keep us informed
Merl from the Moderator Support Team