Sorry I am just now getting back. I have been reading updates, but been in a world of pain…as most of us here are! I had the neck fusion from my spinal fluid being blocked. Comparing MRI’s I had CM then but never diagnosed. I don’t know how many mm, because after the car accident, when I was dx, I asked the NS what if it was the CM all along and I did not need the fusion…needless to say, it ticked him off very bad. I have been with pain mngt. For the past six months and had RFA’S, L and R cervical, numerous steroid epidurals with daily pain, still. After one steroid I.injection, they hit a nerve, which made me urinary incontinent for about three weeks AMD I still have trouble occassionally. My doctor never gave me enough pain meds and my last visit he said I needed to find another doctor. He said, “the patient before you, TERMINAL… He has cancer, maybe two months left to live! You don’t see him crying. Every time I see you, you are crying! You need to pull yourself toge ther. The so-called pain or pressure in your head…yeah, is just that…in your head. Take your migraine medication. You are clearly depressed!”. I of course argued the fact that I was crazy or depressed because I am so happy when I wake up every morning at 530 to my wonderful loving husband, believing today is the day for my healing. Also, my daughter, two months ago, gave birth to two beauti twin baby granddaughters that I certainly am not depressed! I get to see them every day! So, I went to see my Neuro yesterday and requested a cine mri…he did not know what it was. He did order me an mri, so when thy called, I said is it the cine MRI…they did not know what it was. Help!!! And is there anyone in the Atlanta area that you might suggest pain management wise, neuro wise and whatever other etifying information would be great!!! Xoxoxo my fellow chiarians
First of all, I am so sorry for everything you are going through. That doctor had no right to come at you like that. You need to find a doctor that is a Chiari Specialist, and will actually care about you! Some doctors truly don't know how much pain we actually go through. Though, try not to stress. I know it's hard, but stress aggravates the condition. Just take a deep breath and do some research to try and find a Chiari Specialist near you. If you would like, you can check out my website that has some more Chiari information on it! www.screwedontight.com (:
Do you mind sharing your symptoms?(:
You are so typical of most chiari patients,you must go to a specialist in the chiari field, there is no help in the reg. med.Community,unless you are extremely herniated,that is not a good diagnosis measure,in lots of cases the was little or no herniation.I think that is part of the NL’s problem with diagnosing this condition,their methods are all wrong I am certainly not smarter than them but I have plenty experience in chiari symptoms 28 yrs. without much help and a lighter purse.
You are in the right place to gather info.and get support from so many friends,that get it!I will say again PLEASE get a specialist.
Thank you all so much for your feedback. I have had so many symptoms for many years. Nystagmus, neck pain. Just had neck fusion four levels,now have left AMD right arm, horrible pain, nerve pain, head pain, daily headached, feeling like passing out when I cough, sneeze, especially laugh. Almost to the point of passing out. Wishing I would, it was so bad. Trouble formulating my words, shoulder pain, back of the head pain, vision problems, forgetfulness. Feeling like head is going to explode when I laugh. lump on the back of neck comes and goes with pain, balance problems,dizziness, unsteady gait…my joints are awful. Locking Nd popping. Sometimes it feels like a razor blade is cutting the back side of my eyeball. There are more, I am sure, this is all I can think of right now. Not a good night and hurting terrible.
I just read about hypermobility…that is me up and down! Never been diagnosed with it as a while…but I.dividually, sprai.ed ankles, all the time. Bursitis, shoulders and k.res, check…elastic joints and muscle spasms around those joints. Hmmm!
Check this out good luck.
Uh oh. I didn’t get anything.
I am so sorry that you are going through so much. It is reprehensible that doctors treat us like that. I have had very similair experinces with numerous head up their butt doctors through the years. It doesn't matter how acomplished they are or their reputations if they dont know about Chiari they are worthless. Most neurologists dont understand Chiari. If you find one you are very lucky. I ended up finding a very good PC to listen to me and help with my meds. It took going to a lot of doctors and a lot of prayer.
This might help you find some answers or clues as far as companion disorders like EDS. The EDS may have led to you having to have the fusion and may be part of your puzzle.
I hope this helps a little. Also you can try Arnica cream or another homeopathic cream that helps with any kind of muscle pain called Hylands Leg Cramp Ointment. They both help me take some of the edge off my muscle pain. Some people find relief with wearing a neck brace sometimes also. It helps take some of the strain off your neck muscles. they can be a little uncomfortable though. If there is a pharmacy near you that carries medical devices maybe you could go and try one on before you buy it and wear it around the store to see if it gives you a little relief? It may be a long shot but thought I'd mention.
Enjoy your beautiful family and you r new grandchildren....Don't let the turkey doctors get you down. You deserve help and you deserve to feel better.
This is kind of long but very profound .... Sums up the experinces of going to doctors who dont listen.
There are always people here that know exactly what you are going through and are willing to help and listen.