Chiari Online Support Group

My story/ need recommendations

I had headaches while in elementary school (Started around 3rd grade) and started having to leave school about once a week in the end of elementary (5th grade). Nobody thought anything of it and probably assumed I was just trying to get out of school. Summer after 6th grade (2014) I started having headaches and migraines several times a week. About 2 years of this (now 2016) my grandmother decided she needed to take me to the neurologist (my dad thought I was fine). I was diagnosed with CM (through an MRI) and several mental illnesses that day. It was a lot to process. I was 13 and just been told I had CM, ptsd, moderate anxiety, severe depression, and insomnia. The neurologist gave me amitriptyline which I took for several months until I became suicidal. I was told by the neurologist that there was nothing to be done and I needed to learn to live with it. I was devastated. I was always in so much pain. Late 2017 I move away from my family (due to drug related issues that had been going on since before I was born). The lady I moved in with took me to a new neurologist (in 2018) where I was also diagnosed with absence seizers. I started taking medication. I can’t remember the first one I was on, but I was very sick on it. The second was Vimpat. I took that until my dizzy spells got worse and the dr though it was the meds. He then told me that he wanted me to see someone that specialized in CM because he only did seizers (did not tell us that until months after seeing him). I then saw a neurosurgeon (2019) who told me there was something that could be done and she wanted to talk about surgery. I considered it for a month or two and told her I wanted it. She told me she does lots of these surgery’s every month. I knew of her because she worked with my great aunt and several of my family members knew her (she even knew of me before I came to her as a patient). I felt really comfortable with her. However, she could tell I was still on the fence about the surgery. We didn’t go through with it. Fast forward it’s now August 2020 and I’m done dealing with these. I want the surgery. I want a big life for myself and I just don’t see that happening with my symptoms. If you’re curious, my symptoms include: Insomnia (since I was 6 years old. Severe headaches, dizzy spells, Vision issues, absence seizers (which have become every now and then rather than everyday), some type of seizer while I’m sleeping (dr couldn’t figure it out bc they never went through with the sleep study), syncope (diagnosed in 2018). Those are my main issues. The headaches are the worst as I have yet to find anything that will help them. I’ve been on several medications for mental illness if you’re curious what those are, just ask and I will let you know. If you have any questions, let me know. Anybody with similar symptoms that has had a successful surgery? I’d love to hear from you. I’m also looking for someone who specializes in CM in Tennessee. If you know a good neurologist or neurosurgeon, let me know please. I recently just moved back so I’ll probably get in touch with my last neurosurgeon, but would love second opinions.

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Hey Rebecca,
Firstly, Welcome to Ben’s Friends
I’m sorry to say it like this but your story is not unusual, by that I mean you know something isn’t right but the medical professionals give you almost every other diagnosis possible and in the process, they minimise your concerns. This sounds VERY familiar to me. Why? because I’ve been there too.
My situation is not directly Chiari related but it is neurological and my symptoms started at a young age. Firstly it was because I was ‘attention seeking’, reporting weird symptoms that just couldn’t be happening (but they were). Then came the psych diagnosis, I was imagining it all, hallucinating. In my opinion they couldn’t find anything so it was easier to say ‘He’s crazy in da coconut’ than for them to say ‘we don’t know’.
So I learnt to shut up and say nothing. I was still having these weird symptoms I just didn’t tell anybody for the fear of judgement. Over the years things got worse and worse until one day I’m driving down the road and my sight vanished. I couldn’t see and It was this that finally made them investigate. They decided to operate and fix the issue, only it didn’t fix. So they trialled all sorts of meds. From pain meds to psych meds to migraine meds to epilepsy meds to heart meds. I trialled them all, only none of them worked. They then decided I needed further neurosurgery and they gave me a shunt.
The headaches were/are just beyond any measure/scale of pain I’d ever imagined and these dr’s wanted me to go through all of those same medications and this was were I said ‘STOP’.
I had kept comprehensive records of all of the dr’s/specialists/professors I’d seen.
I recorded all of the medications I had trialled.
Listed every alternative therapy that I had attempted.
So when they said ‘Let’s try ‘X’…’ I could say ‘Nope, I’ve tried that already’ Well, we’ll try ‘Y’ ‘Nope, I’ve tried that too’ Once I proved that I had tried ALL of their other options they really had no other option left.

You ask about successful surgery. Neurosurgery is one of those rare things where everybody’s experiences are different. I know of others who have had exactly the same situation as mine but had vastly different outcomes, some better than me…but then some much worse. Trying to gauge outcomes is near on impossible, as I often say ‘…no 2 brains are wired exactly the same, so no 2 neurosurgeries are going to have exactly the same outcome…’. I have now had 6 neurosurgeries in total and I can assure you none of them have been the same in symptoms, treatment nor outcome.

This neuro journey can be a MASSIVE rollercoaster and if anybody tells you it’s easy, I can assure you, they have never been HERE. We all know this because we have been ‘THERE’. So Come talk to us, we know it because we live it too.

Merl from the Moderator Support Team

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Hey, Rebecca,… I’m not in Tennessee, but right next door. I had my Chiari decompression surgery done in Hendersonville, NC by a neurosurgeon that did nothing but Chiaris. He’s retired, but has trained interns with all his decades of Chiari decompression knowledge. The surgery saved my life! I had a ‘mere’ 1mm herniation, but it was enough that I was completely paralyzed and nearly brain dead after 10 years of the onset of symptoms. I still have permanent damage to the brain stem. But, I have fully recovered 75% of functionality. (All my symptoms return every 4th day and every 12th week. But, the days in between are normal! I’m even a racewalking champion on my good days!) Before I had the surgery, I was on every med under the sun. I have a 12-page list of them. Nothing worked. Mainly because the cerebral-spinal fluid isn’t going anywhere. So, meds don’t ever get to where they’re supposed to go. Chairi’s is a plug. NOW, I take a very low dose of amitriptyline (3mg) to stop chronic nerve pain caused by Chiaris. The nerves are OK. They’ve healed. But, they don’t know how to stop saying “Ouch.” And, that’s what amitriptyline stops - is that ouch. For me anyway… the surgery was a real game changer!

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Hey Rebecca!

Thanks for taking the inniative and reaching out to a community that might be able to help you. I think that is a step that is underappreciated, espeically at such a young age. I did the same thing when I was 17 (I was struggling with Ataxia symptoms left over from a couple of surgeries when I was really young), I am 19 now. In my experience, it isn’t something that you talk about doing or share. I guess I’ll I am saying through my convoluted and confusing rambles is that you should be proud of yourself for doing it, that both me and the others who staff Ben’s Friends recognize that and are proud of you!
I also had headaches starting in 2nd and 3rd grade. These headaches were an unimaginable pain, and I suffered through my share of teachers who were unsympathetic and disbeleiving, same as doctors. Fortunately my parents were really pushy (my tumor grew back ~7 times, so that might hve trained them) and I was able to get the help I needed. The headaches, very poor balance and coordination, and other symptoms were eventually releived by the removal of a lumbar shunt that was inserted when I was young. To my understanding it was a similair cause as the headaches tat some get with CM- the CSF in your head is prevented from absorbing in your head or draining by the CM. Therefore the headaches come from this overpressuring of CSF against your brain. Mine were caused from the CSF draining too much, therefore it was sort of the opposite.
I remember how crappy it was to get those headaches every day, you have to leave class or suffer, you have more homework or just miss things, people start asking or envying you, etc. It sucks-a lot…
I agree with what Merl said “every brain is wired differently”. One of the things I would suggest is start asking for more opinions. Send your results to other teams, etc. You can tell your doctors that it isn’t anything against them, you just want lot’s of information about it. Every doctor has there own interests and their own specialty. They will all tell you something a little different. It is anoyying because you have to become your own advocate and researcher. It sounds like your current nuerosurgeon is pretty sympathetic! I would suggest this to her and see if she will help you!

Please reach out to me if you need anything at all! You can reach out by clicking on my avatar, then going to private messaging.
Jakob

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Hi,
I’m so sorry you’ve had such a long journey, and dismissed by your neurologist. If it makes you feel any better, I’ve been dismissed by 5 neurologists and counting! One neurologist, after hours of testing, concluded I needed a “Thera-cane”- which is a tool to work out muscle-knots in you back. I left her office feeling like a complete fool. Ugh! The only real concern and care I received was directly from the 8 (yes, 8!) neurosurgeons I met with. (That’s a little over-the-top, but I have other brain anaomolies on top of Chiari, making my case more complex.)
It sounds like you are experiencing many symptoms with little relief. Seeking out doctors who understand, keeping medical diaries of meds and symptoms, and keeping on with the fight is hard- but in the end, it might just pay-off. Be your own advocate, and if you don’t like your doctor, move on…You deserve to have doctors working with you to resolve your symptoms.
Hopefully, your neurologist can find the appropriate seizure med for you. Dizziness and vertigo-type symptoms can be addressed by an ENT. I just went through 4-hours of ENT testing, and came out of it with a diagnosis of “vestibular migraines”. ( On top of a diagnosis of " a component of chiari headaches). I’ll be trying Botox injections, since no headache meds work for me either. The ENT also gave me meds that help with dizzy spells.
A sleep apnea test was one of the first tests a neurosurgeon ordered for me- Once I got on a CPAP, it helped with some of my insomnia. ( But I still struggle with it!) More importantly, depending on your tonsillar descent and anatomy, it is important you have supplemental oxygen if needed.
With vision issues, I went to a neuro-opthamologist. I would encourage you to do the same- just to make sure there is no pressure on your occiptal nerve and to see if they can help with vision-issues.
Please know, I understand- we all want a magic fix to make it all go away. If you decide on surgery, I’d just offer you this- go into it with realistic expectations, and ask your neurosurgeon what outcome to expect from surgery.
Maybe your gut was telling you to “be on the fence” for a reason- I think a second opinion is a must. Or, hopefully, you can find the right doctors to help manage your symptoms w/out surgery? Ask your neurosurgeon if your symptoms can be conservatively managed or is surgery your only option? Just fyi, if you need to go out-of-network, and can’t find a Chiari specialist in your area, your PCP can write a letter to your insurance (private or Medicaid) stating it’s “medically necessary” to go out-of-network- either for a consult or for surgery. Often, they approve it. That may help open up your options for neurosurgeons. I know travel isn’t ideal, but if close enough, it’s worth the ask…and the drive! :slight_smile:
Everything I am suggesting to you, are things my doctors wanted me to rule-out with specialists, before even thinking about surgery. They wanted to know what symptoms are Chiari related and what symptoms could be from something else, or managed by conservative treatment. I appreciate their diligence before “jumping” into surgery- the last thing you want is to go through surgery, only to find, these symptoms still remain.
Best of luck!

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Hi! Thank you for this you gave me a lot of new information and things to try. I visited an ENT in 2016 and ended up scheduling a tonsillectomy because of frequent strep and my tonsils sitting “lower than normal”. They were thinking I could have some relief (headache wise) from having them removed, but that wasn’t the case. On a plus side I went from strep once or twice a month to only having it twice(ish) since that surgery. I will definitely try to find me another and get some things checked out since they only looked at my throat. I want to find some second opinions (well, maybe like 4th at this point?) with neurosurgeons. Every neurologist I’ve seen wanted to do a sleep study, but wouldn’t ever schedule one. I’m not even sure why. If I can find relief for just a few symptoms, I’d deal with the rest. I think anyone with CM would agree that if someone came and gave them an option to suffer with all of it or be relived from even just a few symptoms we’d all take it in a heartbeat.