In an otherwise very positive mindset I have reached the point where the things I do to maintain an open, resourceful, pro-active attitude towards my health have died. With all due respect to the drs/specialists who work tirelessly to improve people’s lives, at no point is it ethical nor personable to ignore a plea for help. I am possibly the most appreciative patient any Dr could ask for. I take my respinsibilities to play an active role in helping myself with stress reduction techniques, maintaining a healthy lifestyle, seeking alternate treatment options, following regimes recommended very seriously. I hold the medical profession in high regard and am very appreciative for help. But I’ve lost faith and ask what did I do wrong.
One of my specialists who has been truly amazing until lately is not returning emails, phone calls or following up on things he said he would within a acceptable time frame. At the most crucial time for me when my symptoms are more debilitating than ever and I’m questioning my strength to continue living because it is so horrible, he has let me down. For some time I have questioned what I’ve done to be treated like this. I’ve made excuses for the lack of communication and been optimistic that ‘tomorrow’ I might hear back.
I just don’t understand how a person who dedicates their life to helping others (which I think is very noble) can leave one feeling so helpless.
I asked for was help when I was most vulnerae and I’ve been let down.
This Chiari stuff is ruthless especially when the people we rely on to actually help (there’s limited help let’s face it) leave us with little hope. Finding a specialist that knows aboutwhat these symptoms mean and why they affect us like they do is hard enough - particularly where I live.
If I get through this I’m planning on spending the rest of my life helping others deal with the fallout of chronic health conditions, listening to their concerns, empowering their knowledge and skills to help themselves and others and above all holding onto some kind of hope, whatever that may be. For its that tiny bit of hope that is sometimes the only thing that keeps us going.
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Dear Sallymagint
I am sorry to hear you are feeling so let down. Chiari is a complicated issue and we do have to stay on top of all information, educate ourselves, understand possible symptoms and be sensitive to what we are experiencing in our own bodies.
My Neuro is excellent, but very busy with patient appointments and surgeries. The responsibility to keep tabs on what is happening with me, is my own. When I have a crisis I will email him, his assistant will let me know if he wants me to come in to see him, or pass on what he said in the event that he does not need to see me. Our agreement is that I will come in if I have problems and treatment changes are needed.
In this way I ended up finding this sight and find the information on here very helpful. I have increased my knowledge of Chiari through this group, as well as by studying up on the internet about symptoms, how to live with Chiari etc.
It is important to contact in to this sight when you feel at your wits end and be encouraged. Here we all understand as we have the same issues and can share how we coped with different symptoms etc.
I would encourage you to share what you are battling with, so that group members who has the same experiences can share what we did, how we have adjusted our lives to support us and help us make it through.
Hang in there.
Flerrie
Your medical care professionals are not necessarily responding/not responding to you in a personal manner. They just do not have the knowledge base to help you or to direct you to the care that you need. Rather than bucking up and saying so, they are acting all dodgy - not very responsible but not everyone is. It sounds like new faces are in order. It is not always easy to watch even a professional relationship fall apart. Good luck in finding the care that you need!
As an aside, I have found the book “Explain Pain”, from the Neuro-Orthopedic Institute website (Australian based) to be very helpful for those seeking to understand chronic pain and to find their own role in managing it. They have some wonderful treatment approaches that NOI does bring to the States via courses for physical therapists.
Thanks for your support Flerrie. The arrangement you have with your Neuro us similar to what I have with my specialist, I contact him via email if/when necessary and his receptionist will let me know if I need to make an appointment. Unfortunately for whatever reason over a month has passed and despite ringing/emailing to remind (I do appreciate he is very busy), I am still not sure what to do. My GP has sent a email to him also with no reply. If he is unable to help requires me to make an appointment then that needs to be communicated.
The unfortunate part about my situation and probably many others alike, is that when I’m feeling OK there’s no need to contact him unnecessarily but when things are bad and I reach for help, particularly when I’m probably not feeling the best, in more pain, nor as tolerant or strong to hold it together. This is when things are at their hardest, and I really need that help.
I will get through this, not without some emotive moments and questioning myself as what I have done wrong and why I’m not be able to communicate my needs. It’s going to take some energy but I need to remain positive and grateful for the good things and have faith things will turn out OK.
That stinks! I hope you hear back soon, if you have not already. Patience is hard, especially when you’re hurting. We are here to listen 
Hang in there!
Finally my GP (bless him) has been onto another Neurosurgeon who I have a app with mid May. He does deal with Chiari but is not a Chiari specialist as such. There is a neurosurgeon in Sydney who I’m seriously considering going to as his speciality is Chiari which makes me feel much more confident in getting the correct treatment. It’s a 5 hr flight and a number of weeks recoup there if he could operate but at least I’ve got someone who’s confident and experienced. Of course the aftercare is important as well and nurses/hospital are familiar with that which is also a reason for leaning towards travelling to get treatment.
I have to do something I know that, these symptoms are just horrid and the weakness and neuropathy is that little bit worse every day. It makes it difficult to keep focused on daily tasks and above all it is scary and no one - and I not any of the medical team involved in my care are confident in saying what is causing it. I hope if is because they don’t understand the complexity of the condition rather than think it’s in my head (which is often how I feel). Despite what they may or may not say or think this is all very real and very debilitating. I have to have faith that being proactive finding someone to help will end in a positive outcome.
Hi Sally, how is it going now, have you been for treatment?
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Hi Flerrie, Thank you so much for asking I really appreciate it. I have a appointment with a Neurosurgeon in Sydney across the other side of the Australia from where I live on 10th July. This neurosurgeon is well known for his experience with Chiari and has had really positive results. After lots of deliberation I decided that my situation is just too complex to not go to the top Dr in treating this condition. Should there be any problems involved with surgery, and I sincerely hope there’s not, I will feel much more confident knowing him and his team as well as the hospital have current experience.
It sometimes feels a bit surreal this is me that is living this condition, it’s something I hear about happening to others and I find it difficult processing it. I know I feel dreadful, I know the pain, neuralgia, weakness is very real, its debilitating. 12 more sleeps until I see him for his opinion and at the risk of sounding weird I am so looking forward it. Life is tough, every day is a challenge and my entire body is affected in some way. I’m very mindful the things I undertake daily to keep me focused, active and engaged physically, mentally and spiritually with myself, others and the world around me are genuinely becoming harder and harder to do. I’m finding the multiple days in a week that were once challenging are now more multiple hours every day. It is fatiguing and there are many times when I can feel the emotion rising. Aside from the fact that getting upset actually physically hurts - a lot, I am very mindful that I may very well not gain composure if I let my defenses down and that is something I simply cannot afford to happen, so… as many on this site know all too well, you just have to keep on keeping on. Imagine the rainbow that will shine when the rain clears, regardless how torrential the downpour.
I am hoping and praying this neurosurgeon is confident that surgery may help or can at least offer a alternative proactive approach to move forward. I feel like handing myself over to science and research, signing a waiver and saying ‘do whatever you need to to give me some relief, use me as a guinea pig but learn as much as possible in the process to help others in the future live with this horrible condition’. If only it was that simple! (sigh…). I will keep you updated once I’ve seen him with hopefully some positive news. 