This coming Thursday is when I have my follow-up appointment with Neurology, and I'm not really looking forward to it. I have a whole new list of symptoms for my provider, some of which may or may not be related to my Chiari, and we still have my MRI results to go over.
My PA at Neuro said she was going to put in a consult for Physical Therapy and that I should hear from them in 5-10 days by mail, but it's been 6 weeks now and I haven't heard anything from them. I don't remember if maybe she was going to wait for the MRI results.
With some of the problems I've had recently though, I wonder if maybe I should request a full spine MRI. With the recent storms we had this past weekend, I had severe, radiating neck and back pain and numbness in my neck, face, and intermittently in my hand. The pain I had practically rendered my right hand almost useless at times, and I'm right-handed. My shoulders have also gotten to where I can barely tolerate wearing my purse at times, even when it's light.
I just worry that I'm gonna get blown off like it's nothing, after dealing with so much agony over the weekend. Hopefully my husband can be there with me to give some input... he has a pre-op appointment Thursday morning down in Pueblo for a surgery he's having next week.
If your blown of go to a different doctor...Seriously I was pretty much blown off by the first neurologist it was a here's some meds take all these 3 times a day plus a vitamin D. So I masked the symptoms and it worked for a few weeks but the weather changes and this past weekend were horrible. I spent Monday and today recouping from the pain from the weekend.
I asked my primary for a different neurologist referral because I felt like I was on too many meds (6 three times a day) and even then I could feel my symptoms and masking the pain wasn't going to make me better. So she gave me a new referral this neurologist went over my MRI results, actually drew e a picture of what I have, what it does, things to watch for or pay attention too. Then sent me to a neurosurgeon for a consult. By the time I got to the neurosurgeon I had other symptoms (i.e. feeling of something in my throat when swallowing, balance and memory issues, neck pain to the point I feel like its not strong enough to hold my head up) and based on my symptoms, the 10mm herniation and syrinx in my neck he recommended surgery and told me he wouldn't wait six months that based on the progression and additional symptoms that have surfaced. By the time I got to his appointment it was already 6 months from the time I had the MRIs. So don't wait if your not getting any answers or solutions get a new doctor.
Needless to say I scheduled the surgery but they were already 2 months out when I did. My surgery is now in 20 days and I can't wait I have new symptoms even since that appointment (have gotten turned around in places I drive all the time to the point I really don't know where I am which was totally scary, confusion, balance is way worse and both shoulders have actually been effected as well) from what my doc has told me the syrinx in spine causes pressure on the nerve that runs along the front of your shoulder (if you put your arm out with palm facing up the nerve runs from neck across upper back around to the front of should like where your collar bone and shoulder meet, down the inside of your upper arm around your elbow and (flip arm over) along top right side of arm to underside of wrist (carpal tunnel area). When I explained my arm pain it didn't make sense and we pulled up a diagram online and it was exactly where the nerve runs. Was nice to make sense of some of it.
Although with surgery approaching I have good and bad days. Have freaked out a few times its scary to have your head cut open that's for sure and the constant thoughts of getting things in order and doing things I've put off before surgery is physically exhausting. But I am relieved that there is possibly a chance I can get better completely and for that option I am willing to take the risk . I have two kids at home and I really can't be a good mother to them in the condition I am in. I also can't rock at my job like I once did which makes me crazy. People relied on my memory that just isn't there anymore at all. If I weren't 32 I'd think I was getting Alzheimers. Seriously the things I forget in the short time period is ridiculous.
Hope things get better for you and if you every need to chat feel free. Since the doctor ordered rest I'm going to get some sleep but wish you the best.
I'm taking a new list of symptoms with me tomorrow, as well as my copy of Dr. Oro's "The Chiari Book" (found it on Amazon) so I can hopefully show at least one entry to my PA. Hopefully she'll listen to me, but if not, I'm going back to my PCP for a referral to the Chiari center in Aurora. Not feeling the headaches as much right now, but that's mainly because my lower back is bothering me so much at the moment. We'll see what happens tomorrow.