now that I'm not that new anymore. Here are some updates. Since my last post I have had a second neurology appointment with a different doctor who I very much loved. He actually drew a sketch of a head showed me what was normal and what mine looked like and also drew in my sphinx(or whatever the spelling) and explained in terms I understood.
He referred me to a neurosurgeon who I saw this morning and he recommended that I have the surgery as my symptoms are worsening and I'm having more and more bad days. He said that he typically recommends that people wait until they are at the stage I am. Was told that I should schedule it as soon as I can.
I guess I didn't realize that surgery was still a possibility right now and it kind of caught me off guard. Both neurologists said that they didn't think that I needed the surgery right now but the second neurologist made the referral so that there would be a baseline for down the road. Has anyone else gone through that? I am a single mom with 2 kids and a great support system so luckily the 6 week down time shouldn't be to much of an issue but definitely want to be as prepared as possible.
Anyone whose had the surgery that can tell me what to expect before and after? Anything that I should have ready or will need or want for that matter afterwards. I want to make this process as easy as I can for whoever will be helping me through the recovery period.
Any one in the Detroit area that has had the surgery and was successful that would be able to recommend a surgeon. Want to do my research before hand for sure. Very relieved at the possibility of feeling normal again. Anyone willing chat a bit about the before and afters so I can prepare my brain for whats to come. I'd appreciate it.
It’s so rare to find a neurologist familiar with chiari. I’m glad you landed a good one and that he got you into the neurosurgeon so quick.
I think most doctors recommend surgery when a syrinx is present due to the risk of permanent nerve and spinal cord issues. I know surgery is scary to contemplate but for a lot of us it’s been a lifesaver.
I was blessed to have a really great surgical experience and would be happy to answer any questions you have!
I've been saying for weeks I wish I could just feel normal again and well sounds like that is in fact possible after the surgery. My boyfriend has been great and said tonight that 6-8 weeks is a small price to pay to feel better when I've been miserable for months.
My bad days are out weighing my good at this point and I work as a paralegal by the end of the day it is really painful to even hold my head up. My headaches are excruciating even on good days and seem to be getting worse very quickly. I just started having symptoms last November and were minimal now I feel like a whine baby all the time I push through the work day and by the time I get home can't function.
I have a 6 yr old and a 15 yr old at home so as a single mother (boyfriend does not live with us) evenings are hard and frustrating.
How long were you in the hospital after the surgery? How long were you out of work? Anything that you would recommend doing before surgery to prep for home after. Anything that physically made you hurt or that helped make you comfortable?
I was only in the hospital one night but 3-4 is more typical. I returned to work at 8 weeks. Some people are ready at 6 but I was still too fatigued. I also have arthritis and recurring bouts of mono so that could’ve factored in, I’m not sure.
Things that helped me were daily walks, taking my meds on schedule, using a special pillow (everyone seems to have their own favorite, mine is the sobakowa cloud pillow), and arnica gel. Things that seem to cause me pain are lifting heavy weight overhead, racer back bras, and tilting my head really far back. Otherwise I’m in decent shape. I hike a lot, jog a little, and lift weights carefully! My energy is improved and my old symptoms are all very much improved.
You are fortunate to have a found a team of doctors that understand and can help you! I had my surgery done this past November and was not so lucky on the recovery time. Each doctor has their own lists of do's and don'ts. Follow the doctor's orders. That is really difficult, especially with children at home. If the older child is able to help out, the better for you. Try to get a support system in place before hand. It helps exponentially! I think Beeba has a list posted that is quite helpful for most people. Every person has a different experience, just remain diligent in your care. Good luck with all of your preparations and with your surgery.
I had my surgery just last year in Cincinnati, OH with Dr Tew / Mayfield Chiari Center / University Hospital, but I do know several people who have had theirs done at Beaumont, in Royal Oak, MI with Dr Holly Gilmer. Had I known about Dr Gilmer before my surgery I would have gone with her, she is amazing!
Go see Dr. Holly Gilmer at the Michigan Head & Spine Institute she does surgery out of Beaumont Hospital. She has multiple years of Posterior Fossa Decompression.
I have had two surgeries, call me and I will be glad to help you with any and all of your questions. I usually don't give out my number so when the answering machine picks up leave me your name and number and tell me you are from here.