Chiari Advice Needed
Posted , 4 users are following.
Okay, so I have Chiari type 1 which for most of my life (I'm only 17) was asymptomatic (besides a few things). This past year though it has become very symptomatic so I contacted a peds neurosurgeon who was listed to specialize in Chiari, my mom called, but the place scheduled me with a different doctor. He did a full spine and brain mri along with a cine mri, today they called me and they told me I had no tethered cord, no syrinx, so blockage, and that my chiari was too small (7mm) to operate on and too stable (what does stable mean?). They basically dropped me and told me to go back to my neurologist. What should I do? I have a boatload of symptoms that greatly affect my quality of life, but I feel like no doctor will take me seriously because my chiari is "too small". I've had double vision for as long as I can remember, I have POTS (I don't know if that is chiari related but it causes lightheadedness and dizziness), I have Ehlers-Danlos type 3, I'm numb all over, I can't feel my toes or certain parts of my feet, I have countless vision problems, I have migraines that are nearly impossible to control with medication plus the chiari back of a head migraine and neck pain, I have chronic fatigue and pain, and just a lot of those oddball chiari symptoms. The only good thing that came of that appointment is that I have updated scans, and that the doctor said I have minor disc herniation in my neck, but that I shouldn't be having symptoms from it, the notes on the MRI say I have "disc osteophyte complex" or very mild disc degeneration in cervical spine. I don't get it, is all of this caused by something else but just looks like chiari? Have you guys dealt with this kind of thing? What should I do? Has anyone had a successful decompression with an "unsignificant" chiari? Should I just give up?
0 likes, 3 replies
Apple62 KGill18
Posted
In my situation, I had fusion surgery C5/C6 in 2/14/13. I never recovered and starting
having head pressure, eye problems, hearing problems, balance issues, and a lot of other additional weird symptoms. I was decompressed in 2014. I still have problems.
My Chiari was 13 mm with CSF flow blockage. From what I understand, the size of the herniation does not dictate whether you need surgery. If your CSF flow was
blocked that would be another thing. You might check out Chiari UK on Facebook.
There are a lot of knowledgeable people on that site. I hope you find some answers.
whodatbritchick KGill18
Posted
b2wc97455 KGill18
Posted
Hi Dear, in the name of our Lord, I am so sorry to hear about your condition, I promised you, 3 years ago I was worst then you, but then mine was only 5mm, so it is not the sie..but it is how much pressure you have... because I was scared of the side effect of the surgery I deetested it and refused it, but I ended up damaging lots of my nerve (neck, spine) - where are you UK or US ?, if you are in the UK it is easier to deal with, as lots of health care professionals really like to work with you - only if you - yourself done a research, responsible for your own health...because our condition is not a disease..it is morme like technical issue..but my condition was effected my life, I resigned from an excellent job..as I became house bound..then I kept blacking out each time I sneeze or coughing..the pain was horendous, I finally given up and agreed to have surgery- but I have 2nd opinion..I asked my first NS to recommend me to Mr Flint he is in QE Hospital Birmingham (UK) - I found him by talking to (I could not remember wether Yeltzer or Apple) basically once I joined this forum...so I contacted Ann Conroy Trust ..kept calling the nurses and asked for advice..I also spoken to one chiari centre in Milan and Mayo Clinic..I studied about my condition...I participated about my own helath by updating my health care professionals how I was doing...the drugs I was taking (MADE NO DIFFERENCE!!!!) so I studied the role of supplements and some food that helping me..each day I drink warm water with 1/4 tea spoon or carbonate soda, I take 5 minutes breathing exercises,..cook the leaves vine..I took it each week without any issue (even though I dont like the test) tumeric with mil or yougurt (anti inflamatory agent)..slowly my blacked out reduce while waited for my surgery. I kept inform my health care professionals as well, but it was not helping at all, I started unable to talk properly becuase I could not got the words of my mouth even though I knew what I was going to talk about..I just thought it was really cruel for my family to see me like this..I kept pestering the QE Hospital to get me in promtply, I finally got my decompression..the soonest I woke up from the surgery, the pressure went...and the first two months was HARENDOUS...but the 3rd month and now (1 year) its getting much - much better, I think that was the most excelent and right decision I had made in my life..I still not allow to drive know...becuase sometime I got headache..but after getting my diploma on nutritions I understand that lots of supplements had helped me up to this date... YOU NEED to summarise :
1. How your condition
2. How that make you feel
3. How your Quality Of Life is effected by it
4. How you just helpless and surrender to them explained it to them, that you fully understand how they do not aware about this condition, but tell them how much you are suffering..if need be go to A&E several times.
5. How you need their help.
All health care professionals in the world (WHERE EVER YOU ARE) how the duty of care to treat patients and resolving their quality of life..it is a part of NICE guide lines (UK) to adhere to treat their patients. So, if they are not providing that, then you could put a complaint (I suggest you ask help) to PALS patient Advise Liaison Services or to the local NHS where you are..if there is no luch then you can contact Mitchell solicitor or any solicitor that will help you to get the proper services (FREE- PAID BY THE lEGAL aID - no win no fee)
iF YOU ARE IN THE US try to contact the health department or your insurance..they should be able to help you. But do not wait too long..you are young, you do not want that condition to damage your nerve, musle and tissues that connect to your brain/CSF.. some people have more pressure than others..if you are scare of surgery, get your neurologist to have Lumber Puncture..I had 2 LPs before getting surgery then another 3 LPs after surgery.
Magnesium spray help tiny bit ..no much..but it seems to help me recover pretty quick..I am free of drugs now (I hate taking toxix) in my body..but the drugs are there to help you temporary..it do not cure..but just maintaining it..if you have diseases such as: asthma, copd, cardio vascular, high blood pressure, high cholesterol changing a life style and temporaryly taking drugs will help, but chiari, fibromyalgia, ME, is a condition..and you can only be helped by surgery (that is my opinion) so..PLEASE..ask your mother or father to help you and accompanied you to see your health care professional, sometime they do not take notice of teenager (that is the fact)..if you like more help contact me..if you are in the UK, I will be willing to call your health care professionals for you..do not forget, they do not have awareness themself..my mother passed away because of that..no one know at that time what is CM..so..Keep us update..I will be happy to help you..becuase I know how hard it is to cope..YOU ALSO HAVE TO TAKE IT EASY HONEY..YOU CANT DO LIKE A NORMAL PEOPLE..IT MIGHT MAKE YOU EVEN BAD...