Chiari Online Support Group

frustrated and fed up


#1

I have recently undergone decompression 5 months ago after many complications including meningitis 3 csf leaks requiring a lumbar drain and steroids also a nice little cocktail of antibiotics im slowely starting to recover.I had my checkup appointment from the nuerosurgion who has told me "by 5 months I should be feeling better and that sometimes fatigue just happens’’.I am constantly tired all the time and nobody seems to be helping me find the answers the nuerosurgion said to go back to the nuerologyst but I have called around and am finding it incredibly difficult to find a person that specialises In chiari that will treat me with any sort of dignity.I am fed up with arrogant drs and rude clinic reception ladies.I am constantly dismissed and im just wondering has anyone? had these issues in Australia or is it just me.


#2

I am sorry that you are in such a state 5 months post recovery. Sometimes the moon is promised in the surgical package! Recovery times vary and you have had further complications which affect your condition. Unfortunately, neurosurgeons and neurologists hear patients report fatigue symptoms all the time with little to offer. Please remember that physicians are able to offer surgery or medications as their prescriptive options.

I had surgery a number of years ago now and found that fatigue and other brain symptoms were my biggest concerns post-surgery. Symptoms included dizziness, vision disturbances, brain fog, and wonky pain - all which originated from a physically stressed brain (a.k.a. Chiari!) and how my brain tried to make sense of confusing input. I did not find any assistance from a variety of physician specialists over the years.

Given a seven week complication, still being in recovery three months post-discharge, after lots of drugs and illness is a considerable possibility. No need to push through things. Chiarians know that that does not work. It is hard not to pick up all the roles and duties that we feel that we should. It just is not always cognitively possible to do that. It helps me to think of Chiari AND the surgery as a slow motion brain injury. Recovery techniques and patterns seem to be the same.

If you have the need to seek out help, I might suggest Brain Injury resources for your recovery time and a physical therapist who is well-trained in the Neuro-Orthopedic Institute (NOI) courses. Australia is the birth place of this ground breaking research group into pain management, neurodynamic exercises, and graded motor imagery. Assessment is key!

For myself, I will list the things that have actually helped my cognitive abilities and fatigue levels - not just a Band-Aid that helps me to cope but have actually increased my activity and cognitive levels. I will list them in the order that I wished I had done them, not necessarily how I stumbled into them.

  1. Rest - serious and purposeful. Not doing too much in a day.

  2. Regular, outside walk. When I first started after surgery, I would walk one block and sit in a chair for an hour to recover. No use in doing more than is tolerable

  3. Ketogenic Diet. Do not dismiss what I say here because of pre-existing beliefs about wonky diets. It does help considerably with brain fog and cognitive deficits that doctors said I would have to live with for the rest of my life.

  4. Graded Motor Imagery - earlier levels available as an app through NOI!

  5. Neurodynamic Glides - the folks at NOI have some great ideas

  6. Myofascial work in the neck, shoulders, upper back

  7. Vision Therapy - when the eyes are not seeing as they should the brain gets tired much easier

  8. Primitive Reflexes and other brain development stuff - regulates and normalizes movement patterns = less brain fatigue

  9. Motor control exercises for painful areas neck, shoulder, upper back - pain dulls the mind. It’s a fact.

  10. BrainHQ - on-line brain exercises

Quite a lengthy list but who says Chiari is simple. Changing the brain takes a lot of time and effort. Good luck with your recovery journey


#3

Thankyou! gabby_jazzypants this is a great list of things I can do.I am fearful to go back to the nuero mainly because they have a tendancy to “bandaide” with experimental medication.I have so many other immune related issues because at one point I was taking up to 13 pills a day just to function.I have always known a holistic approach would be better for me in the long run.I will give this list a go and see if it helps.Certainly beats seing another doctor.I have never been a lazy person so that is why this is so new to me I have always been motivated and driven now days I wash a few dishes and I feel like I have run a marathon.I don’t think I did myself any favours the first week I got out of surgery For the first time in 5 years I had no chiari pain just post op swelling and I did not rest because well it was exciting to be somewhat pain free.I was on those heavy painkillers to so I don’t think I relised how much was actually going on with my body nor did I think at the time that it was “trauma”.I know a lot better now.Alot of my issues I think are the “guilt” that comes with resting and getting my head around all the changes.But thankyou it is sooooo nice to hear what I “can” attempt to do to manage this without drugs.


#4

Hopefully it is a helpful list and not a daunting one. Chiarians vary so I am sure not all will apply.

I forgot to add “The Trigger Point Therapy Work Book” by Clair Davies. An excellent resource to self-treat pain issues originating from muscle triggers - headaches, shoulder, neck whatever pain. Not saying that triggers cause all pain, just that if triggers are a source, this book will help.

Go easy into your recovery…