Hi all,
I have been diagnosed with Arnolds’ Chiari Malformations. I know that I have tonsilar herniation as well as some calcification in the vertebrae. I’m based in the Uk and after 6 months of waiting will be seeing a neurosurgeon in Mid March.
My symptoms came on overnight in November 2009. I woke up & couldn’t lift my head from the pillow. After numerous visits to my GP & even attending A&E I was sent away being told there was nothing wrong. Finally by summer 2010 I was sent for an xray of my c-spine which indicated additional cervical ribs with the doctor noting the pain was caused by a trapped nerve.
I received physiotherapy & chiropractic sessions which alleviated some of the pain before embarking on acupuncture. I found this to be excruciating & blacked out after only 5 needles into my neck.
A head MRI followed which didn’t indicate much, before finally getting a second MRI in September 2014 which identified the chiari.
I also have 3 nerves being pinched by calcification of the vertebra.
I want to know what I should be asking. I’ve not been pain free since 2009 & even the meds i am taking 50mg amitryptyline and 8 zapain a day are no longer helping. I can’t do everyday tasks easily & my relationship with my husband is suffering.
Really anxious about the consult and don’t know what I should be asking? Any advice greatly received
Hi, Tina.
I don’t have Chiari, I have Fibromyalgia, but I wanted to share a few thoughts. Have you considered a keyword search in the search field above? There may be some resources for you here within past discussions. Also, perhaps you may ask your care team to prepare you with information on the surgery in advance? This may help ease your anxiety and also help you generate questions. They may do this for you regardless. They are your care team and are there to help prepare you and educate you as well. Let’s see what specifics others may have to share on this topic as well. I wish you the best with your upcoming surgery.
Hi,
First: I write all questions down and go in with a list....writing answers down as well.
Second: No question is stupid. I asked questions like.......What can I expect if I do not have surgery? Will the symptoms go away after surgery? How long will it take? How long will recovery be in the hospital? How long away from work? These are just a few simple ones. The big one for me was.....What is the procedure? What will you actually be doing? Step by step! If you don't want to hear....don't ask...I was not prepared. I asked this question after.
third: My husband is awesome. I know he suffers, but I only hope now.....after surgery....that there is a light at the end of the tunnel for him. He came with me to the NS appointments and found info on the internet before surgery so he was more prepared than I was. Now after surgery, he actually is babying me more than I like.
For me.....right before surgery....no meds worked either. It was just suffer until the surgery. But there are a lot of different ways and meds.
Hope everything goes well.
Hi Tina,
Besides the helpful info you will receive from the members here, I have seen our member Dr Tumble offer some good advice. You can go to the members page and use the search engine, or use the search engine at the very top right of the page here.
My grandson is with me and taken over the computer for the weekend, so I’m struggling with the iPhone, and unable to just give you links to him.
Wishing you well,
SK