Hi, really glad I’ve joined the Chiari online support group and thank you for welcoming me. I am 45 and live in Western Australia. I was diagnosed with a Chiari Malformation (14mm) 18mths ago with a CT scan due to severe concussion. I am unable to have a MRI as I have a dorsal column stimulator implant not compatible with these machines. At the time of my accident being diagnosed wasn’t a big deal for me as drs seemed to dismiss it being a problem so I did too. I didn’t research it as I felt strongly about not ‘dr googling’. I believed that sometimes as human beings we could potentally cause ourself a lot of stress and unnecessary burden by trying to self diagnose, almost talking ourselves into some types of symptoms. However my health has deteriorated and minimal answers have been given I am now more open to it, hence began my Chiari research process. I cried the first time I read about the types of symptoms others have, I was almost relieved that I wasn’t the only one, it helped validated how I had been feeling and gave me a desire to find out more.
The problem that I face is that very few specialists are willing to take me on as a patient and I think it comes down to me not being able to have a MRI which would give a much more definitive diagnoses. In saying this I totally understand why they would be hesitant, especially when Chiari is classed in that 'rare disease category and some specialist themselves aren’t sure about its effect on the body and treatment options (even more so in Western Australia it seems). I am willing to have my stimulator removed if this is necessary to receive appropriate treatment. It is a huge decision and whilst I get relief from neuralgia and pain stemming from a injury 20 years ago which ended in a lumbar spinal fusion, the symptoms which currently affect me are becoming so debilitating I fear for what my life will be, if I don’t get the correct treatment sooner rather than later.
I guess my big question is has anyone been in the position where a CT scan is the most advanced scan they can have. What is it I cannot t find someone who will take me on as patient - Is it in fact my rare condition or is it that i cannot have more extensive imaging that is hindering future treatment options. I would be interested in hearing from anyone who might have experienced similar things. Thanks
I can appreciate your difficulty in finding answers and treatment in your situation. I am sure that you and your doctor will pursue finding a specialist to help you understand the significance of the Chiari finding on your CT scan. Hopefully a neurosurgeon will be able to shed some light. In the meantime, if you have not already, it may be worthwhile to pursue treatment for concussion.
You do not list your symptoms but it is always amazing how much cross over between concussion and Chiari there is. I have always thought of Chiari malformation as a slow-motion and repetitive brain injury.
Vision therapy, neurodynamics (Check out Neuro-orthopedic Institute which is Auzzie-grown), my posting for dizziness here on this web-site, many options for headaches (motor-control, trigger release, eye work, posture…), plus more. All these treatments are more physical therapy based and the trick is to find someone who is adequately trained. Ask questions up front.
Good luck in finding answers.
Hello Sally! I am sorry that I do not have an answer for your question. In all the reading and research that I have done, I have never encountered this question. In my case (22 mm herniation), I had several MRI’s done before both my first and second decompression surgeries. More specifically, neurosurgeons will have a CINE MRI done, as that type looks directly at the CSF flow. I continue to read about CM several times per week, with whatever information I can dig up on the net. If I come across any info that relates to your question, I will be sure to look you up and pass it along. In the meantime, maybe you could go to wacma.com (World Arnold Chiari Malformation Association) and see if you can find a contact number to speak with someone in regards to your situation. I have delt with many different and frustrating situations that have came about due to my CM, but I just keep on going and never give up! I hope you will do the same!! As a fellow Chiarian, I am with you!!
Thanks gabby_jazzypants for your reply, I didn’t go into too much other info re: symptoms as I didn’t want to make my first post too long.
Apparently so I’m found out today my Chiari was present prior to my concussion episode but the CT scan (done for something else) didn’t scan far enough down to identify the extent of the herniation.
My symptoms are wide and varied and because I have had lumbar spinal surgery I never really know what is stemming from what. My neurologist was treating me for migraine associatec vertigo and didn’t think my symptoms were Chiari related. However after months on treatment taking very high doses of tootimate and despite him saying he would just keep increasing the dosage until it did make a difference (which I think in itself is a odd comment), there was no improvement so I have been weaned off these.
My symptoms are as follows in no particular order and change very regularly in intensity and regularity: severe dizziness, loss of balance, weakness in arms and legs, fatigue, head wobbles, nausea, light sensitivity, headaches (feels like I have a bowling ball in base of skull) these become debilitating when I laugh, sneeze, cry, blow nose, lift heavy objects etc…, pain in back, legs, neck, r/arm, surging up/down spinal canal (that’s my way of describing it anyway), neuralgia in arms, neck, shoulders and face (legs if a stand longed than a couple of minutes), depression, pulsating in ears started sounding long and slow now in time with pulse (driving me crazy ATM), weakness in neck/shoulder (it gets to the point I can’t hold my head up and use a neck brace to help). These are the daily ones there are others les common but I these are the main ones.
I have learnt a heap of strategies and techniques that help me manage pain, stress and keep as positive as I can. Lots of alternative therapies (meditation, mindfulness, essential oils, stress management etc…), a balance program through my Physio which also helps to build and maintain muscle strength and co-ordination and limit falls, massage, Emmitt Treatment, I try to keep a balanced diet although my appetite is poor because of nausea, medications for pain, Tai Chi, journaling, learning pacing techniques, poetry.
I will definitely take on board your suggestions thank you. One of my problems is my memory has been dramatically affected and I have trouble remembering things whether it be what I’ve read, watched, said, thought etc… I am trying to remember to write things down as I go which is also problematic ax I can’t sit or use arms for too long as I get so fatigued and numbness/weakness spreads (can’t hold arms or head up). Everything is very much a juggling act even typing this response had taken two sittings.
I often think if I not only want to work this out for me but I want to be able to help preventing this happening to others, i hate the thought of others facing these same ordeals. it is really just so horrible and very soul destroying when there are very few answers or suggestions for what to do next. I think all things considered I keep a fairly positive attitude. I can’t afford to become to consumed in finding answers but on the other hand can I afford not to persue this, my future is hanging in the balance if I don’t. It’s certainly a roller coaster ride that’s for sure!
Thanks for your reply Trevor. Not being able to have an MRI really hasn’t bothered me until my symptoms became so debilitating and I wanted more answers and it started with the question to drs/specialists what else can I personally do to help me. I want to be able to improve my life, I’m happy and prepared to put in the hard work to have a better quality of life. I have been told ‘I’m actually not sure what else to do’ or ‘I don’t know what more you can do’ which scares me a bit. I have put lots of energy and resources into improving many aspects of my life, the way I approach new treatments, my thought processes, relaxation/meditation the list goes on and I’m so incredibly glad I have done these things because I don’t know how I would have coped as things have got worse for me physically and symptomatically. I don’t think I have ever put more energy into helping me in my entire life, yet it feels like I’m more debilitated now than ever before.
I am trying to educate myself a bit more, my memory is not good so what I once could read and remember I now have to read 10 times and still don’t understand it which is very hard to absorb things and keep them in the memory bank. I thought remembering things at uni was hard, that was nothing compared to now! Haha
Anyway I appreciate your suggestions and time in replying, at the end of the day we are all in this together 