I have been diagnosed with a 6mm herniation about a year ago.I have a connective tissue disorder that I have passed on to my two adult children and my daughters two girls.I have had pain,dysautonomia,neuropathy and many other degenerative disc problems.My main issue is that my general practitioner contacted my NS who said to him that my Chiari was only borderline and could not possibly cause me any problems.So now my doctor is taking me of all pain medication.I am now on a very small amount of pain meds so now I am feeling the full effects of this dreadful syndrome.I have tried to explain how this feels to doctors,family and others.I am a 62 year old male and I am sorry to say THAT I HAVE HAD ENOUGH.I have had two major heart attacks and I have decided to stop all my heart medications.I just can`t stand being in this body anymore.I know this may sound like a selfish thing to do to my family,but I have been through years of judgmental doctors and now that they know my issues ,they still know nothing about them.To hard I guess!.......Anyway I have made this decision and I am sorry if I have upset anybody.Who knows what will happen ,it may even make me feel better if it does`t kill me in the short run.This medical merry go round has made me incredibly depressed and it has brought me to this point.Does anyone have the problem with anxiety that I do because of what is happening in my head and neck.I cannot get over the medical ignorance in Australia about Chiari that can bring a human being to this point in their life.There is only one surgeon who is capable of helping me in this country but my herniation to him is just to small to be a problem.I don`t know how I am going to cope by facing the full fury of Chiari and the rest of my issues but i will just have to wait and see.Thanks for reading this far and may all your pain be small ones.Thanks again..
Thank you dear friends for your kind caring words.I write this with tears in my eyes for your comforting words.But having said that I should also tell you that I recently had an episode of overdosing on what you call Klonopin.It was more accidental than intentional as I find that the cognitive effects of this "syndrome" are impairing my thinking.However this episode has put me in a bad light with my doctor and I find now that every other doctor views me with some type of suspicion.But I also know that this irrational thought process is part of the condition and always has and will be for some of us.The doctors here seem to be too comfortable with just regular medical problems and they don`t understand the underlying problems with Chiari.I have lost my passion for playing piano and composing because the pain is always there to impair the enjoyment I had from music and photography.Chiari and the other issues are gradually leaching the joy of life I once had.I appreciate your advice for looking for another doctor, but I`m sorry I`m done I have just seen so many over the years and now I find they seem to becoming more judgmental and arrogant based on a past history that can follow you like a bad smell.We all make mistakes in our lives but when you eventually find out why you have been feeling so bad,and then find out that you have passed it on to your children and then their kids then I find it hard to comprehend that the medical profession takes so little interest on how to manage difficult cases.My 34 year old daughter and her 15 yr old daughter both have to take slow release morphine because their genetic doctor is the only person who knows how bad this is.It is so difficult to see their lives so torn apart by a genetic malfunction that manifests itself in so many ways that it breaks my heart to see their problems and not be able to help them.Again thank for your advice as I very much appreciate it.I have to stop now as I find emotional problems are taking me over again.I don`t even know if this has made any sense but in some way it is an outlet for my pain because I know you all understand.Bless you all.
I hate that you are feeling so down and that the doctors are dismissing your issues. Please keep fighting for proper treatment. I know that things are different and in some ways harder in Australia but I pray you are able to keep fighting until something is done! I'm sure your family doesn't blame you for passing on these conditions so please don't blame yourself. It's hard to see your family ill but it will be harder for them to see you gone! My dad passed away a year ago this December and I would do anything to have him back!!!
It is true that we get to pick our friends, not our family. What crazy, confused, depraved individual would pick a bunch of people who all have such a painful and thieving affliction like Chiari? Non of us, but we are a family. Your family loves you, and just like biological family will do, we will carry your flag for a little while, while you take a break. I know this is not the you that you really are, we have been on this site together for a while and I know the you who is so smart and dynamic, compassionate and caring. This is a painful circumstance that seems to steel our identities, and for so long, we forget about hope. We have all read your post, we identify with it, it makes us cry, but we have not lost our hope for you. We’ll carry the hope flag for awhile too. Please know in your heart you are not alone. You may be in the shadow… but with fierce friends, and we will never leave our friend there.
Take the time to break from the doctor BS. Take the time to break from guilt (not a person here is at fault for what we have. I don’t believe that you are angry with your great grandfather for unknowingly passing a gene, or marrying his love who had the gene). You can be a responsible person and let that go cause it’s not yours.
It is ok to feel the way you do, it’s actually (I think) a very normal thing. There are others feeling the same way right now and so glad you let us know and gave a voice to what’s happening with you.
You do have a responsibility, though, to reach out further if you feel you can’t go on. You can hand over any flag at any time for a break- but you have to do the hand off, you don’t drop it, ok? Your family depends on you too.
You get some time to rest, then you join us again, your daughter and grandchild. I love the idea of seeing your daughters geneticist- could be a great support, advocate, and new jumping point. I honestly, in my heart of hearts, believe there are helpful souls among us and we will find each other- we stay in the spirit of hope and continue to see the possibilities and we get help. I am sending prayers and love.
Thanks Abby.I have thought about getting some information in writing from my daughters genetic doctor as she has told all of us that we have a very difficult connective tissue disorder that she thinks is a combination of a few genetic anomalies.With that being said I found it odd that when I rang and told her of the Chiari diagnoses that all she said to me was"Yes that happens quite a bit with these type of disorders"She works hard for my daughter and her two girls but I found it strange that she has not suggested the girls get tested for Chiari.I know the nine year old has the classic features like burning feet and not being able to tolerate sheets on her feet ,as the weather gets hotter.I had all these symptoms as a kid and she also has severe cervical instability as does the older girl.I just don`t understand why no doctor has tested them for CM.It is almost that Chiari is not an issue in this country.I have told my daughter that it is important to have it done,but it`s like she could not deal with another health issue in their lives.I almost understand how she feels.Anyway this is just another reason why I feel like I do and I hate that I feel this way.I love my kids very much and I know it`s not my fault or anybody else that we have these problems.But at the moment after being brought back twice because of modern medicine I just want to leave it to THE GREATER POWER of the universe to decide my fate.And again I cannot thank all of you enough as you have your health problems that are greater than mine in a lot of cases,and I admire the courage of every one of you.Bless you and know I will take each day at a time.There is no Chiari management in this country,only ignorance and that is a bitter pill to swallow.Thanks again Abby and I do believe there is a power in this universe that takes care of each of us.
Thanks Abby and everyone else for your thoughts and caring concern.I want to apologies for my unusual attitude.I am now fairly sure that my thought patterns were brought on by an overwhelming set of events and being given a new medication called Neurontin or here called Gabapentin as well as drastically lowering my usual pain meds.I have never reacted well to drugs that are in these type of classes so I did some research and have found that it can cause unusual behaviour and depression with self harm characteristics.I have lowered this as well and I`m feeling better.However I am still overwhelmed as to how I manage my pain and other problems.We are also in the process of selling our house so we can afford better medical coverage.This among other things has put a great strain on our marriage and so after we sell,then we are still not totally sure of what we will do next.But without going into too much detail on my very confusing life I just want to say thanks to you all for being there.And yes I have restarted my heart medications so I can give this life with chiari and the rest of my issues another good hard try.Bless you all ,yet again for your support and help.I will figure something out in this Chiari ignorant country.
Sorry for not getting back sooner but I`v been having computer trouble.I just wanted to ask you for any information you could give me about your reasons for moving house.I know that in my case that it is just too big for me to maintain.My 32 yr old son who lives with us is Paranoid Schizophrenic among other things and only makes things more difficult.I am still very worried about the process of moving but as it looks like my wife can`t take the medical problems ,it seems she want`s out.It is strange how even your closest partners will never understand the pain involved.Some days when I can do more ,then I do but that creates a precedent.I push myself way past my limit sometimes because we can`t afford anyone to do it for us.But I now realised I have reached my physical and emotional limit.I think I am just wandering if you have similar feelings and most of all you have a supportive partner.Mine gives all the outward appearances of being such a person but I know now I have become a burden which does not make for a good relationship.Thank you and the others for all your help as you are all wonderful human beings.By the way my email address is still uncertain.I just noticed the doctors recommended in each state of the US and I could not believe it.I have also read that a lot of people with even small herniations have often found a lot more going on that did not show up on scans when they have surgery.Thanks again Abby.I have a great deal to think about as you do also.Bless you for your kindness.
Putty, we have another member who lives in Australia, her member name is Sonj. She has had success with her Chiari treatment and believes she may have some helpful info for you. She is happy to hear from you, just message her.
Love and prayers still headed your way,
Understand you well. Us Aussies aren't very well educated about Chiari.
keep bright if you can ....