Fui diagnosticada com Chiari por meio de uma ressonância magnética que pedi ao meu médico de família para solicitar. Os sintomas têm sido geralmente leves até agora, mas venho lidando com visão turva desde a última terça-feira. Sei que distúrbios visuais podem ser causados por Chiari, mas minha mãe e meu avô ambos morreram de derrame, então me preocupo. Além disso, minha mãe teve um AIT antes de seu derrame que a fez perder a visão em um olho. Tenho uma consulta de doença hoje à tarde com o PA no consultório do meu médico e com o optometrista na quinta-feira (minha avó tinha degeneração macular, para piorar) e presumo que o PA vai me dizer para ir ao ER se eu achar que preciso. Acho que a única forma de descartar isso é por meio de uma tomografia computadorizada, mas não quero ficar exposto a radiação em excesso de forma rotineira. Alguém tem alguma opinião sobre isso?
Oi,
Eu lamento muito saber dos seus problemas. Você está marcada para ver um neurologista ou neurocirurgião? Eles seriam a melhor fonte para determinar os sintomas que você está experimentando. Você está experimentando algum outro sintoma? Qual o tamanho da hérnia? Problemas nos olhos são definitivamente um sinal de Chiari. Espero que você obtenha algumas respostas dos seus médicos. Por favor, nos avise o que você descobre?
Muito obrigado por responder. A hérnia tem 7 mm. Não fiz o estudo cine nem nenhum outro exame, pois meu médico de família basicamente relatou os achados e não é muito conhecedor do assunto. Tenho procurado um bom neurologista e tenho consulta marcada para SETEMBRO, mas não estou muito esperançoso, pois, quanto mais leio na internet, parece que a maioria dos neurologistas não está muito familiarizada com nosso distúrbio e não há muitos especialistas em Pittsburgh. Meus sintomas mais consistentes têm sido zumbido e dor localizada na parte de trás do crânio. Também tive dor no pescoço e ombros de vez em quando e episódios neurológicos como nistagmo e vertigem. Sou verdadeiramente sortudo por nada ter sido grave até agora e não consideraria cirurgia neste momento, então não tenho certeza se viajar para um especialista valeria a pena, mas tenho tantas perguntas.
Hi there,
Sorry about your condition, anyway I had that for over 2 years, my neurologist and NS advice me to have decompression - Irefused at first, but as I left it - my condition getting worse in a state that I became a housebond - unable to do anything not even laughing..I did not have a quality of life, I had to resign..the drugs did not help at all..finally I had to giving in for operation..TH at the end of the day..THAT WAS THE BEST DECISION I HAD DONE IN MY LIFE..(I had 5 - 6 CT SCAN) - at the end of the day YOU ARE INCHARGE OF YOUR OWN HEALTH
Hi.
Can i please ask what medications you were on before you decided to have surgery?
How long did it take for recovery after surgery?
Regards
Oi,
Os sintomas que tenho são dor no pescoço, dor nos olhos, problemas de audição, dor nas costas, dificuldade para andar e dor no estômago. Fiz cirurgia em 2014.
Meu médico era o diretor de neurologia no Emory University Hospital em Atlanta. No meu caso, devo ter tido o problema por cerca de 8 anos antes de um diagnóstico ser feito. Já havia ocorrido dano nervoso. Tinha uma hérnia de 13mm.
Depois da cirurgia, fiquei no hospital por cerca de 5 dias. Voltei para casa e continuei a piorar. Estou em uma casa de repouso, na cama a maior parte do tempo.
A cirurgia pode ter um resultado positivo ou uma experiência negativa. Depende de muitos fatores.
Espero que você encontre as respostas para suas perguntas.
Hi alwys alone,
It was gradually over 3 years before I was diagnosed with Chiari Malformation (I was fainted and wa taken to the A&E) - for 3 years I rejected any medicationn (I used to be a drug rep for the biggest pharmaceutical co- so you know why I do not like to put any drug in my body) the most I have was paracetemol then, but after I fainted I could not stand any longer, so I took everything from: oioid, steroid, topiramate, Deluxitine,gabapentin, amytriptine, bethahistine, Ibuprofen, Tramadol..decoflenax,butrans...you named it..I tried everything..as I did no like the idea of surgery. With any condition if you can manage without surgery take the management option (drugs) but I could not stand it any longer, my bladder could not be control, I woke up 3 - 4 time at nite just to go to the loo, then the headache getting horrendous, back pain, leg pain, light headache..and the longer I leave it the worst it cecame, I wished I had done it the soonest they diagnosed me..I might not had rapture my spine ..and due to leave it that long (I assumed) I have to be careful with my back and neck now..but I am durg and pain free now..so..do not worry..there is a light at the end of the tunnel,just ensure yo9u have got the right NS...mind you, I was lucky enough my health care professional team are FANTASTIC...!!! I do not know what would I do without them..I supposed because they know that I know so much about the condition and I talked to them..asking their advice..as well as understand their dilemma (they have lack of knowledge of Chiari) and now due to my own fault..I have to be treated (on going on) by:
1. Ortopaedic specialist
2. Rheumatoid specialist
3. Long Term Chronic pain management team
4. Physiotherapist
I will go back to my NS for the post operation check-up
I hope this will give you a bit knowledge about CM1 - go to youtube learn about your condition- be assertive to your health care professional, remember they are there to help you..but they also see 100 patients with so many different diseases..if you know your condition..(I used to write each week how I feel) and I type it and gave it to them...that will help them to understand your pain and open their mind as well..dont forget even specialis (neurologist/s) got no clue about our condition
Oh, you got the medication I took, I collapsed in May 2014-it took about 6 months for me to ask for surgery then, but as I read soo much about it...I have 3 opinions..and I was lucky that I was referred to QE hospital Birmingham (apparently they renounced of the best Neuro treatment in EUROPE) - I was in waiting list for sometime (as I wanted to have this particular NS to operated me and he has a loooooooooooonnnnnngggg list...so I only had my decomp. in May last year.., the first 1-1.5 months was unbelievable..but on the 2nd mid months its getting better..and I had my life back, I listen to my NS...I have not work yet, I dont think I can work like I used to be, as I should not carry any heavy things..my NS told me that I will be 90% normal by the 16 - 18th months...after surgery (the 2nd-3th months) I kept doing gentle exercise..and now I can do briskly walk for 1 - 2 miles daily
Thank you for your information.
No-one here acknowledges the problem unless the tonsils are severely elingated, and even then they are reluctant and hesitant to do anything.
GPs i have seen do not even know of this problem. I had an mri done to try to find out why i am so sensitive to light and the CM1 was discovered but dismissed, but i began to research it and found that all the symptoms related to it are what i have been having problems with for many years.
I have never been prescribed any medication for the problems, except to be told to take panadol which is useless. I do, however, take over the counter codeine products that are beginning to have no effect.
The doctors here do not like the patients telling them or hinting at what they think is wrong. In doing so we are frowned upon and written up as peoblem patients so no-one wants to help, let alone look into the problems. It's always "take panadol because there's nothing wrong".
If i were to eventually find a doctor who believes what i believe to be wrong and they want to do surgery, i am too reluctant to have it being so close to my spine and brain. After hap-hazard surgeries and uncaring doctors in the past, i don't believe there is anyone here capable enough to do the type of surgery this illness requires without complications or perhaps even paralysis.
I do not trust the australian medical field at all anymore.
To add to that, i don't have the patience to have to wait 18 months to feel only 90% normal, nor do i have anyone to care for me over such an extended time.
Well, when I said 90% that was the prediction ..just say if you broke your hips..even though its recovered..your hips will never be the same..so that analysing of 90-95% back is just that...is there any Patient association in Australia..? if you have start writing to them, get solicitor as well (NO WIN NO FEE) that is negligence...once some one can not put up with the pain anymore..they will do anything to make it better, gathering from your feeling..you might not have condition as bad as me.I just was terrible, I have back, neck, arms, legs, pain..each time you wake up in the morning its felt like a truck just crushed my body..and my had felt like being drilled..I felt like I was going to die any second when I cough/sneeze..it was horrid..I am drug and pain free now..I have my life back..
Information on how to complain in your country
:by Peter Lavelle
The Australian medical system, what to do and who to go to if something goes wrong.[How to make a complaint] ISTOCKPHOTOYour rights
Complaint options
Litigation
Health Ombudsmen
More info..just type it on google ''how to complain to my health care professionals about my condition''
here are some more where to take your case to:
Australian Government:
''Complaint options
If the doctor is employed by a medical practice or hospital, the complaint should be made there in the first instance. The doctor should be given the opportunity to respond.
If you are not satisfied, or the complaint is serious enough, you can make a complaint to the health care ombudsman in your State. This is a person whose job it is to handle complaints about health care providers. Each State has one, though they go under different names.
Contact details are listed below (see in the Health Ombudsmen section).
You should call them and discuss the problem over the phone, and then submit the complaint in writing.
If they feel the complaint is unjustified or frivolous, they may dismiss it. Otherwise, depending on the nature of the complaint they may deal with it in different ways.
For example they may refer it to their dispute resolution service. This is a forum in which patients and doctors are encouraged to come together and discuss and resolve their differences. It may result in an apology from the doctor for example.
In more serious cases the complaint may be referred to another regulatory body for investigation.
In cases involving professional misconduct or where there is a question mark over the skill of the health practitioner, this might be the medical board.
Each State and Territory in Australia has a medical act which outlines the conditions under which medical practitioners are allow to practice. The acts are administered by State medical boards.
A board may investigate a doctor via a medical tribunal or professional conduct hearing, and if found guilty, the doctor may disciplined by a fines, suspension, the imposition of conditions on practice, or deregistration.
Hi.
I am actually in a hell of a lot of pain every day.
Each day i have a severe headache or migraine, made worse with each movement or involuntary action. I have severe neck pain to the point i try to keep it still with a neck brace. My back is in constant pain. Most days i cannot move my arms or use my hands. It is very painful to walk and i also feel like i've been through a crusher. Trying to get up to use the toilet, which is also worsening, is absolute horror. My face constantly aches. I cannot go outside or watch television because the light pierces my eyeballs and into my head with what i would assume a bolt of lightening to feel like. I have to limit time on a computer with a lowered light screen so i can see it and tolerate it for a few minutes at a time. I cannot go into a shop and doctor surgery and hospital light is excruciating. I am forced to wear dark glasses, and most of the time my eyes are closed as well.
I also now faint a lot which has been put down to the worsening headaches/migraines and photosensitivity.
I had the mri done -which worsened my problems for several weeks- in the hope i could find a reason for the light sensitivity and rectify it.
The pain i suffer through is one thing, but not being able to go outside or sit and watch a movie with my son is another.
I'd rather have my sight than be in bed all day.
I thank you for the information regarding doctors etc but i am aware there are such agencies to complain to. However, it's hard to complain in a country that doesn't even acknowledge symptoms or illnesses, and without a decent GP to know of and diagnose the condition, there is no point in complaining about a condition untreated due to lack of medical knowledge. To be undiagnosed and treated like the problems i have are impossible is one thing; it's another to be operated on (if it ever eventuates) by people who don't even believe illnesses such as this exist.
I'm not a lab rat and would prefer pain to paralysis caused by negligence or lack of knowledge and understanding. No amount of compensation or fines being given to so-called doctors can make up for that.
I am glad you're in a place that is up to date on problems and illnesses that other parts of the world disregard, and i'm glad surgery helped you.
I have read of surgeries that have made others worse so i'm relieved to hear you were one of the lucky ones.
Take care.
Oi,
Estou mais ou menos onde você está depois da cirurgia de descompressão. Meus olhos doem e meu equilíbrio está desregulado. Meu pescoço balança e sinto pressão para baixo em toda a minha coluna, tornando difícil andar. Não consigo ficar sentada por muito tempo, pois a dor é intensa. Minhas costas doem desde 2014 e a dor não para. A medicação para dor não funcionou para mim. Fico entrando e saindo da cama o dia todo. Sei que você está chateado e com razão. Algumas pessoas dizem que melhoram após a cirurgia. Você tem uma chance de 50/50 com a cirurgia. Gostaria de saber o que dizer para animar você. Vejo um conselheiro uma vez por semana para desabafar. Tomo um antidepressivo e ajuda. Às vezes, apenas postar em um grupo que entende também ajuda. De qualquer forma, espero que você obtenha algumas respostas e se sinta melhor.
Hi apple, you had your decompression in 2014, you still pain, when did you start the pain after that surgery - where did you had yours done?
But you can not just let the condition wear you down, you have responsibility to your self and your son...if you really love him you should get yourself better, if I were you..I will got to the website about Chiari from NHS UK or Mayo Clinic USA..print it out.go and make an appointment ask your doctor to refere you to the neurologist..put in writing how you feel together with the prin out taken from the Mayo clinic USA, NHS UK, Ann Conry Trust UK..show it to them or even print some of these testemant from this website and show it to them, i am sure they will take notice..you have to help yourself..come on do not give up..this is your life youare talking about..it is their job to look after you..talk to your local MP...? but try as well to give you topiramate..its helped me a great deal...but do not leave chiari too long..you are having what I had...its amazing you can put up..I could not..and I learned if a chiarian leave it too long after the symptom it is only going to get worse..., but if you think you can put up then..I ll pray for you..hopefully you are getting better and stronger..GOOD LUCK- Pleae follow this info and contact them in your country : Chiari & Syringomyelia Australia www.chiariaustralia.com/ A website to help those suffering from Chiari malformation and Syringomyelia find help and support inAustralia.
''
go to google find chiari malformation in Australia - you will get the access to find the wright health professional in your area..I just google it..I am unsure why my response to you needed to be checked..there is nothing..endanger anyone
Hi.
This is my point. The doctors here don't like you knowing what is wrong with you without their invrstigations and interventions. No amount of proof or paperwork changes that.
I am in no way getting better, but i would rather be able to kind of see and semi walk than have surgery and be bling, paralysed or both.
IF i were to have surgery, it'd be by competent and experienced doctors, not ones eho know nothing and dismiss everything; but thag said i cannot afford to travel.
I suffer in silence because thd GPs here know nothing, and that includes neurologists.
Well, you can only find out from the website I have posted you...at the end of the day..if some one could not stand anymore with the pain, they will do smoething despite worrying about what is going to happen before my decompression I had to sign my understanding of the side effect of the surgery, each surgery giving that, just like our life, when we drive a car..there will be a potential of accident, it does not mean that you are going to have accident. When we walk and accross the road, riding a bike, riding a horse, taking medication.there are always ''this word POTENTIALLY'' ..but if you believe in our creator and ask him to guide you..you will know what you are going to decide, just follow the information I have posted to you..I bet they will do it promptly and not hesitently...but GOOD LUCK..YOUR LIFE, YOUR HEALTH..YOUR RESPONSIBILITY
Olá,
Com base no pouco que sei, se a gravidade está puxando seu cérebro para baixo, está fechando seu canal espinhal. A única maneira de corrigir isso é encontrar um especialista em Chiari, como a outra senhora lhe disse. Pessoalmente, eu não sabia o que estava errado por 6 anos. Agora estou na cama, não consigo ficar sentada por muito tempo e mal consigo andar até o banheiro. Você está em uma situação como esta: o fogo está chegando, você pula ou fica aí e definitivamente se queima. Encontre um médico e obtenha ajuda. Desejando o melhor para você.
b2wc97455
I'm sorry to disagree but i refuse to allow someone who knows nothing about the illness to cut into my head, spine and/or brain.
If anything goes wrong due to my stupidity in allowing it, being paralysed would no longer be a "life".
Also, as i have already explained, the doctors in Australia do not even acknowledge this condition exists so how am i supposed to believe in my creators - my parents - when the doctors know nothing and i don't see my parents?
Thanks anyway.