Any feedback would be apreaciated
Posted , 6 users are following.
I live in Canada and I will just say the doctors here are not that bright. To make a long story short Ihave been sick and in pain for years, and the doctors here kept telling me that there was something wrong with me but they ran every test you could ever think of and they would always come back negitive. I dont know if that has happened to anyone else on here, but after a while I thought I was loosing my mind. That was up till just over a year ago when I had yet another CT scan and thats when my doctor told me I had Chiari Malformation and that they would send me to a neurologist. Well that was over a year ago and I have heard nothing from anyone and I pretty much have suffered alone in this because no one knows how much pain I am in and I feel like I am annoying my doctor, but enough is enough. I really dont know what to do, is this a normal wait time to see a neurologist?? should I just suck it up?? Are the episodes supposed to be so intense and last all day or for a couple days?? The episodes werent always this bad but they are way worse now and everytime I have one it's always worse then the last. Please if anyone can help me it would mean the world to me.
1 like, 20 replies
b2wc97455 elizabeth18371
Posted
I am in the UK, thank you for your feedback, I am sorry first of all to hear about your condition, but you are not alone, I was one of the lucky one (praise to God) because I was passed out and woke up at the A&E hospital, only then they scan /MRI for then they realised I have got CHIARI 1, at that time pain was only around 6 -SCALE 1-10_ BUT THEN it getting worse and worse, its started went don the neck, spine numbness, imbalance, medication will not do any good, all my health care professional team (doctors, neurologists, NS) advice were then surgery..so I am just waiting, it is horrendous..just like someone put a drill on top on your head..unable to walk or move without getting paining not just in your head but all over your body mostly like when you cough, swallow, snezze, that is just like the ened of the world..so yeah..it is terrible..but please keep positive, get them to put you on decompression surgery..they said that is the only way to help releif the pressure..down..you must insist..in our are its depending on the health care team one area is better then another..if the health care are not lack of chiari knowledge they are good, but if they do not understand about the condition they think is just like migrane so they dont make it such an urgent case..so I SUPPOSE THEY TREAT them like they treatin gyou..so it the patiens reponsibility to make theie doctors aware of what going on in the patients health as sonetime they hae not got enough time to remember each patient at all, so, i hope this is helping you..pleae be assertive, read from you tube about our condition..know your condition so that you are able to talk to your doctor with confidence as well as prepraring you from the surgery..this site is very good the members are very helpful..some of them quite experience as well.. GOD LUCK
jon98439 elizabeth18371
Posted
From what I have read of your story this is not right. You shouldn't be waiting over a year to see a neurologist. The latest here in the uk was a month to 3 months.
Chairi is no joke. If you have offically been diagnosed it should be getting sorted. If have done. The biggest issue here is that your symptoms are getting worse.
My advice to you is ring your neurologists clinc or your doctor and tell them the situation. You have been diagnosed with chairi over a year ago and the symptoms are getting worse. There should have been further action of what to do but I have heard nothing.
Let me tell you please don't ignore what you are going through. You are in no way losing your mind. And you can't suck it up unfortunately. Also do not ignore it any further.
I wish you all the best for the future and really hope you get sorted.
Take care
Jon
whodatbritchick elizabeth18371
Posted