I have been experiencing extreme pain in my lower back and several other symptoms of “tethered chord” I had an appt scheduled for late August for what turned out to be the top neurologist in my area. But Hurricane Isaac messed up not only my home but my appt as well. I was reschedule with another Doc who acted like he understood Chiari at my initial appt. I explained my symptoms- he took me off of work, scheduled an MRI and sent me on my way and had me return today after my MRI was done and a round of muscle relaxers etc (that didn’t work)
When I went in today I realize that he didn’t even look at my MRI all he did was read the radiologist report (while I was sitting there watching him) and according to the radiologist report said all I have is some “minor arthritis” in my back. Then he proceeds to tell me that I’m too fat (Duh I know that) and that I need Physical Therapy, and he is going to refer me back to my surgeon that did my decompression (last October) his reasoning… When we get a patient with Chiari we always refer them to the surgical team because we do not know how to deal with them.
If he had told me that in the beginning I would have walked out and found someone who knew SOMETHING about Chiari!!! Its my stinking life! I’m the one in pain! I’m the one that has been off of work for 6 weeks now!
The good news is that once I get to my surgeon g=he is a great guy and hopefully he can get me to someone that knows something about Chiari!
I told the guy when I went in that I wasn't some hypochondriac looking for a disease or problem but that something was definitely wrong, and all my symptoms were synonymous with TCS. I doubt that he even knew TCS was!
I just hope that it doesn't take forever to get into see my surgeon, being that he has already done my surgery I doubt he will be in a rush to see me.
I totally understand. After my decompression surgery in 2005 my NS wanted me to have a NL in my area in case of any problems. I made the appt. with a NL I had seen before & he had his nurse call & tell me he couldn't help me...... I know the disgust you feel. If wishes were fishes things would be much easier for Chiarians. Please rant or vent anytime. We all do at times. That why we are here for each other. "No one understands a Chiarian but another Chiarian."
I am glad you like your NS. Please keep us posted,
That's the last thing you need is a nuerologist being a yerk to you. I am sorry you had to go through that. I've been through it so many times and it never gets easier. Sometimes Castor Oil helps calm down muscles of the lower back. I have made a poultice with Castor Oil and Arnica Oil (If you can only get Arnica Cream I would spread it over the sore area and then put the cloth with Castor Oil on it) mixed together and then put a heating pad on it. Every drug store has Castor Oil and health food stores have both) To make a Poultice you take a soft thin cloth (Piece of an old t shirt works great) and saturate it with a mix a Castor Oil and Arnica Oil 3 to 1 ratio. Put it on top of plastic wrap and put it on sore area then put a heating pad on top of the plastic wrap.(You can store the cloth afterwards in a ziplock and use it several times by just adding a little more oil each time.You want it to be really saturated) Lay down for an hour or so, so that it sinks in. It won't take all the pain away but may calm down the muscles some. I've had good luck lately with finding Homeopathic remedies to help areas of pain on my body (Uppper arm pain and thigh pain) If you want to try Homeopathy I can help you find something that may lessen the intensity of your pain while you wait to see your doctor. Homeopathy is completely safe doesn't have any negative effects or drug interactions, is inexpensive and available at most health food stores. Let me know.