Hello. Introducing myself. I am 40 years old recently diagnosed and almost can breathe a sigh of relief that someone finally found out whats wrong with me. I have been having sever sharp stabbing pains for the past 6 years and when laughing, vomiting, coughing.... even pooping. Recently, within the past 12 months, I've noticed a few things. 1. I've been getting a lot of lower back pain, and stiffness in neck and burning in my upper back. 2. General body aches from my heels up to my head. 3. Easily choking and passing things off as "gee... that went down the wrong hole" 4. More extreme headaches that are onset faster and more severe during straining now more than ever. 5. Difficulty dialing numbers - I usually have to dial about 3 or 4 times before i get the number right. And 6. Speech difficulties. This one was the doozie for me that made me make my appointment to see what was wrong. I was so scared i had an aneurysm that I made the appointment with the neurologist myself overstepping my general practitioner. (Aneurysms run in my family). My job relies on my ability to publicly speak. Now, i feel like i am playing a game of charades that never ends.
Before my diagnosis I was begging my GP for a pain reliever and she would not give me anything as a matter of fact, she took my previous prescription for ibuprofen away from me. she told me that I needed to get the extra weight off my joints and that would make me feel a lot better so off she sent me into the world to feel miserable.
Once my diagnosis came back, she gave me a prescription for Tramadol 50MG and it still has not touched the pain of body aches. So now I get Hydrocodone from my mom and it takes the pain away for about 5 to 6 hours. I actually feel normal during that time period. I go to the neurosurgeon on the 18th of November so I hope he has a pain management plan for me.
Anyways, I just wanted to stop in and tell my story and introduce myself. :)
You're in the right place! Your symptoms sound so much like mine! I lived with the symptoms for almost two years! I started taking 5 different laxatives so that I wouldn't have to strain! I had memory loss, shakiness, choking on fluids, stuttering, etc. I had my MRI and my tonsils were 9.9mm lower than normal and had almost no flow of spinal fluid.
Before surgery, my best advise is don't over-do-it. Take stool softeners, don't bend too much. Most pain medication won't help because it's more of a spinal fluid thing. I get mega-migraines the more I get the spikey headaches. Imitrex is the only thing that ever worked for those.
My NS (Neurosurgeon) recommended surgery from which I am home recovering from now. I'm taking it super easy and can't do much, but I haven't had the stabbing pains or a migraine since surgery (13 days ago!) Other than surgery, there really is only treatment of pain afterwards, not much preventative. Topimax and Fioricet are two of the medications sometimes used to help prevent the headaches. They didn't work for me at all!
Side note, GET A NEW GP! If she's not concerned with how you feel, what you feel, etc. then you need a new GP. You have that right and will need a good one for follow up treatment!
Welcome! There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed especially since you are recently diagnosed.
Vitamin d deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Tethered cord syndrome
I am glad you found us,