Chiari Online Support Group

What do i do

#1

Im not too sure what to do. Im 17 and from Perth, Australia.
Ive been to the doctors as i was having symptoms since the 2nd November this year mainly such as:

- blurred and fuzzy peripheral vision 24/7
- a foggy memory 24/7

The doctor thought it was all in my head or stress from exams, but to me i had no stress or anything going on, i feel fine im on school holidays.
I had an MRI scan done and it had showed i have mild chiari malformation and minor deformity of the posterior skull base.
after seeing my doctor after this MRI scan he thinks its a coincidence we have found this and he does not think my symptoms are because of this, now i have read into chiari alot since finding out and i very well think my symptoms are from chiari.

He referred me to a neurologist but the only appt i can get for that is in 6 months and i feel i need one before February. It feels like im high on marijuana 24/7 and i hate the feeling of it, i dont smoke at all. ive also had a blood test on ion as the only meat i eat is chicken, they came back fine.

I would just like to know if anyone has any things i should do to help my main symptoms such as remedies, medications, therapies, advice, who i can see quicker. any processes.

#2

Hey Shavelle,
My name is Merl, I’m in Adelaide. I’m a moderator for the Ben’s Friends Network.
I have to tell you that dr’s thinking ‘…it’s all in your head…’ is VERY common, especially for any neurological symptoms. Some dr’s make out they know it all, well, I’ll tell you a little secret… …They don’t.
I spent many years, decades in fact, having weird symptoms that they could not find a reason for. They even locked me up in a psych ward ’ Cos you must be crazy to be having pain /symptoms like that. We can’t find anything…’, that was until they did find something. Initially the neuro’s adopted a ‘wait and see’ policy and again this is not uncommon. Some people can go years with mild/managable symptoms but for others those symptoms can be increasing at a huge rate. I must admit earlier on my neurological symptoms fluctuated. I could go months and be OK but then have weeks of nauseating symptoms and I believe that these fluctuations only added to the medicos doubt of the reality I was managing. It wasn’t until I had a major episode that they investigated further and by that time it was an emergency situation.

So, some things that may help.
Keep a pain diary. Now I say ‘pain diary’, but not just pain but odd symptoms and treatments. I have found going to a medical appointment and saying I have symptom ‘X’ and symptom ‘Y’ can be interpreted as hearsay, where as if you have it documented, written down, they can see frequency as well as symptom, if things progress and get worse your record/diary will show this. It also shows you are being proactive and not just reactive.
Every time and I mean EVERY TIME symptoms increase, go see your dr. Their records and referral letters (which you will need) will show that progression. The Dr’s may recommend medications or other treatments, follow through with them. If you don’t they can say things like “Not following medical advise” or “Non compliant patient”. If those medications or treatments don’t work, tell them so. If you have side effects, tell them so. If you keep them informed they can’t hold that against you. I’d also recommend you keep a record of each and every dr/specialist you see so that when someone says ie 'Have you seen an optician? Yes. Have you seen an audiologist? Yes. Have you seen…"

Here in Australia you have GP’s (General practitioners) for general medical. Then you have physicians, they are a little more refined and will investigate further and make referrals to specialists. Then you have specialists. Often GP’s are limited in which specialists they have authority to refer patients to, where physicians have a broader range of referral options. You could possibly get your GP to refer you to a physician, who should do their own, more thorough investigations.

OK, so I do not want to overwhelm you with too much info, but that’s where you could start. Keeping your own records can be paramount because otherwise each new dr can send you off for exactly the same tests over and over, which is a waste of time.
The last thing I’d like to say here is that you are not alone on this journey, there are many of us who have been on a very similar route, so if you need to chat, come talk to us. We know what this is like and our knowledge doesn’t come from a university textbook, it comes from personal, lived experience, so come talk to us.

Merl from the Moderator Support Team

#3

Hi Shavy

Having Chiari is no fun and it can seem like no one is able to help. Please know that often times we have to be our own advocates simply because medical professionals do not know how to help us. We have to push hard to find the ones who can help. I have found that if I look at Chiari as a brain injury or a concussion, the world of treatments opens up considerably.

Given your age, I would suggest that you have someone step up to assist you in advocating. Someone with some medical back ground might help but is not necessary, some one who speaks well, asks questions, and is willing to attend appointments with you - not all but the important ones for sure. A family member, a family friend, a teacher, a neighbour… Now is not the time to be shy.

Get a binder together to keep all your medical information together.

Your main symptoms are vision and brain fog. You have not had decompression surgery.

Vision

I am assuming that you have had your vision screened and that there are no other problems with the physical nature of your vision system. If you have not done so it would be prudent to screen out other issues that could be affecting your vision. A lot of Chiari investigation is ruling out other conditions that affect health.

Chiari affects vision by affecting the visual processing centers. A typical optometrist will tell you that your vision is fine as they do not typically assess the cognitive aspect of vision. An ophthalmologist might tell you that you need surgery on your eyes muscles to help them keep in alignment. There is nothing wrong with your eye muscles as the problem is with your brain.

An optometrist or ophthalmologist specifically trained in assessing your brain’s role in vision is necessary to get you on the right track to improve your vision. They might advertise as treating concussion related vision problems. Hopefully, they assess the musculature of the eye but I have personal found that this does not happen. They assess, then often pass you on to a vision therapist who gives you eye exercises. No need to see them every week and stay away from the formulaic approaches where you pay $2000.

Please note that I personally did not improve my vision with a diligent approach to therapy before surgery. It did the trick after surgery. However, we are not all the same. I also did not do all the other therapy approaches I know now before surgery either. Perhaps that would have helped.

Brain Fog

Brain fog needs a multi-pronged approach

  1. Decrease stimuli and stress to maximize the brain function that you do have. Research concussion approaches to doing so. Auditory, visual, screen time, social, and physical all are drains on the brain when it is not working well.

  2. Concussion Treatment Strategies to Normalize the Brain

Eye exercises themselves help with this. When the brain has to decode conflicting input from the visual centers, it has to work extra hard.

Physical therapists and other medical professionals who deal with concussion and brain injured people will have a wealth of treatment options. They are just not all equal in quality. It seems that a sub-par approach is to treat with a graded exercise approach - walk a little today, walk a little more the next day, monitor your symptoms, maintain, walk a little more. This is not enough as it does not deal with brain function just brain tolerance.

Medical professionals need to be able to assess:

Midline Ability
Body Image
Motor Imagery
Oculomotor
Tactility
Proprioception
Balance/Postural Stability
Dual Tasking
Primitive Reflexes
Vestibular Orientation

You will not know what all these assessment areas are. However, who you see should be able to ASSESS and TREAT most of them.

With Chiari, the above listed brain abilities no longer provide the brain with good quality information. When the brain receives conflicting or confusing information, it has to work extra hard to figure things out - hence the brain fog.

I would suggest that you read my posting in “MRI - Why is my Chiari ignored” and know that you ultimately need to have a neurosurgeon review your MRI and hear your symptoms.

I have written a lot. It may be helpful to print this posting out and put it in your medical binder. Have your advocate read it and others that you find helpful. Make a to-do list in order of priority. Be in touch and ask questions.

Good luck in your journey

1 Like
#4

thankyou ill do that!

#5

thankyou heaps i will look into this stuff!

#6

Shavy, welcome to our Chiari support community. I’m sorry about your diagnosis and challenges: it’s not an easy road to be on, but as you can see you aren’t alone on it. There are people who understand how things work where you live, and who “get it” from the Chiari point of view.

I think the advice about tracking your pain and your symptoms, and reporting them to your doctor, is absolutely right on. Like with everything else, there are apps for that! I don’t know anyone who has used one, but here’s a review of several.

Best of luck with this. Hang in there, and hang out here!

Seenie from Moderator Support.

#7

Hi, Shavy,

At 51 I was relieved to find an answer to my symptoms, but that came after an exhaustive search in finding out what caused my symptoms.

All the advice given thus far is wonderful and you will find caring members at this Website. One of the hardest things about Chiari malformations are as has been stated so many symptoms that can seem odd and that can come and go, get better, or become worse.

Until you can find more resolve some simple things can help alleviate some of the discomfort and strange sensations you are experiencing:

It can help to limit extremely strenuous exercise which can challenge the cerebellum and cerebellar tonsils that are already under duress due to the Chiari.

Be careful of anything that will speed up your system like energy drinks, colas, coffee, and even some nutrients.

Applying a cool pack to the base of the skull can help calm down the compressed area and help even in relaxing your central nervous system.

Chiari never really goes away, but it can be managed and life does go on. You are wise beyond your years for having taken action and joining this Website; I did not until I was nine years post-op.

Have faith and hang in there you may be giving us advice someday!

Best always to you always Shavy!

#8

thankyou!