I have chiari and was diagnosed 5 months ago. Prior to chiari I was diagnosed with lupus, Sjögren’s syndrome and RA many years ago. I have quite the mix of issues but I know I’m not the only one. I am going to have the decompression surgery June 2nd and am wondering if anyone had relief of symptoms that they thought were related to the lupus, and they disappeared after surgery? My lupus is primary and the Sjögren’s syndrome and RA are secondary. I feel like possibly a lot of my symptoms that I have had for many years that were thought to be related to my lupus could actually be chiari symptoms? A lot of the chiari symptoms and lupus symptoms are similar which would be just my luck. I know my body pretty well and know that the head pressure and the headaches that run from the back of my head are the chiari. Also the swallowing and dizziness along with many others. If anyone has any insight on this and could let me know if they had symptoms relieved that you thought were due to your lupus and decompression surgery relieved them I would appreciate the info. This all can get so complicated but we are all used to that considering all the different symptoms all of us struggle with every day. Thanks for listening and take care!
Me, me , me....I thought I was the only person who did!
I have a CM, Lupus, Antiphospholipid Syndrome, Hashimoto's Thyroiditis, and Psoriatic Arthritis. My decompression was done November 4, 2013. I still have symptoms. I am told to give it more time. I thought that all my issues were CM, not the Lupus. But then, there are some symptoms that I know are the SLE. It takes research and a TEAM of understanding and knowledgeable doctors. As if a CM wasn't bad enough, nature tossed in some side items that cause damage and wreak havoc by themselves.
Have your specialists on notice when you have surgery. Not that you will have any complications, but it is better to be safe. Your body may have other ideas after the surgery.
I recommend a strong support system. Recovery varies for everyone. Try to educate your peeps and express your needs and wants. I couldn't explain my feelings, just that I felt off. Listen to your body. Ask questions, lots of them.
Stay strong and good luck!
-M
Hello Weebleviii! You have a mix of medical issues also and your right they wreak havoc by themselves. That’s a great idea I will let my Rheumy know my surgery date also so that way he can be on alert if I need him also. Your right I’m trying to educate my family as much as I can about my symptoms and the recovery of the surgery. I told them it varies so Im just letting them know possibilities and things that I will need. It is hard for me to communicate at times because I feel like they just doesn’t understand and I feel isolated sometimes because I have to lay down so much. It can be difficult to explain exactly what and how I’m feeling. I’m working on my communication with my support team that will be helping me after surgery since it’s crunch time now. I feel like my family got that much more serious about it now that I have an actual surgery date . It’s like they realize this isn’t just me exaggerating symptoms or being lazy. So you are 6 months into your recovery I really wish you to continue to be relieved of more symptoms soon. It’s tricky knowing what is chiari or lupus or our other conditions only time will tell. Thank you for the info it was very helpful to me take care!