How do you know when symptoms are not from Chiari?

Thank you so much for responding. The herniation is 7 mm. I have not had the cine study or any other testing as my PCP basically reported the findings and isn't very knowledgable on the topic. I've been searching for a good neuro and am scheduled to see one in SEPTEMBER but I am not holding out a lot of hope as the more I read online tells me most neuros are not well versed in our disorder and there aren't that specialize in Pittsburgh. My biggest consistent symptoms have been tinnitus and localized pain at the back of my skull. I've also had neck and shoulder pain from time to time and neuro episodes such as nystagmus and vertigo. I'm truly lucky that none has been severe to this point and would not consider surgery at this time so I'm not sure if travelling for a specialist would be worthwhile but I have so many questions.

Hi,

The symptoms that I have are neck pain, eye pain, hearing problems, back pain, walking, and stomach pain. I had surgery in 2014.

My dr was the director of neurology at Emory University Hospital in Atlanta. In my case, I must have had the problem for about 8 years before a diagnosis was made. Nerve damage had already occurred. I had a 13mm herniation.

After surgery, I was in the hospital about 5 days. I went home and continued to digress. I'm in assisted living in bed mostly.

Surgery can have a positive result or a negative experience. It depends on a lot of factors.

I hope you find the answers to your questions.

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

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.

Hi,

I'm kinda where you are after decompression surgery. My eyes hurt and my balance is off. My neck wobbles and I feel downward pressure on my entire spine making it difficult to walk. I can't sit very long as the pain is bad. My back has been hurting since 2014 and it doesn't stop. Pain medication has not worked for me. I'm in and out of bed all day. I know you are upset and rightly so. Some people say they get better after the surgery. You have a 50/50 chance with surgery. I wish I knew what to say to cheer u. I see a counselor once a week to let out my feelings. I take an antidepressant and it helps. Sometimes just posting to a group that understands helps too. Anyway, I hope u get some answers and feel better.

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

Hello,

Based on the little bit I know, if gravity is pulling your brain down it is closing off your spinal canal. The only way to fix it is to find a Chiari Specialist like the other lady told u. Personally, I didn't know what was wrong for 6 years. Now I'm in bed, can't sit up long, and can hardly walk to the bathroom. U are in a situation like this: the fire is coming do u jump or do u sit there and definitely get burned. Find a doctor and get some help. Wishing the best for u.

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.

I understand how you feel, hence you need to find out from your local support (website mentioned) who would be the best NS in your area or even perhaps you have to a bit further than your home (I have to travel 3 hours to get to my NS- but it is was worth while)

AS I said GP is not specialist - they have no clue what you are feeling, how Chiari can really disable the sufferer, you need to print that from a few site (so, indirectly you educate them) write a letter to them copy to the board..(in our country is NHS Trust) all the health care professional in the world have a duty to loook after their patients..you have to understand they have so  many patients, they work long hour..,patients in my area said that the health care professionals here (where I go) do not help them at all..and yet..I find it completely the opposite, they are really support me in all level..I think because I put my self in their shoes..and I always have understanding about their lack of knowledge (not just chiari) could be any other condition, that is why if something like this happen they refer you to the specialist - because the specialist know their field. Just have conversation with them, this is how I always start my conversation with them: 1. Thank you for seeing me 2. Understand how busy you are. 3. I do not really like to waste their time 4. However I am really worried with my condition. 5. My Quality Of life is really no longer exist 6. I do not know what else can I do 7. I read all the information about my condition (showed them the print out I have got) 8. You are my only hope 9. Where do I go from here 10. PLEASE ADVICE ME...WHAT WOULD YOU DO IF YOU WERE ME....11. I feel as though my life is no longer value..what the use of carry on...???

BUT saying that..it seems that you are still OK..I was not...so do not have surgery if you can live your life without decompression - You will know when you are so desperate....I am anti drug...as I used to work for Pharmaceutical Company..however drug/s will also help if you can not stand the pain (temporary only - remember there is POTENTIAL of side effect)..let alone surgery..but after waiting foryear my condition got even worse.I could not stand any longer...I wish I have done it sooner (the time when they advice me) i got 3rd opinion on the matter - so I prepared to travel over 3 hours for best recommendation. So thre again...only YOU KNOW BEST 

4b2wc97455

NO, i am not okay as you imply.

I have seen many doctors and "speciallists" who know nothing, who do nothibg except tell mevto take painkillers that don't help.

I cannot afford to travel to another country to find help, and three hours from where i am doesn't even get me into another state in Australia!!