Horses and dogs are the angels God sends to keep us looking up.
I'm glad I was finally able to get to a true specialist, though I'm looking into a closer Dr. His name is Dr. Henderson. I will wait until the results of these new test first. That way I know if its even worth switching drs. Though I feel comfortable with the doctor is Ohio. If surgery is needed I prefer to see Dr. Henderson since my PCP and I have been working with him over the last 7 months to get things straight for my visit to Ohio. I'm not going to stress because I think that also triggers the headaches. So I'm going to not think about it until I hear from the new rounds of my MRI scans. I'm sure my results of my Cine MRI is waiting for me once I make it home in the morning. We will see.
I'm glad your post op is going good for you. May it continue to do so. I can't wait to get home and see my little critters. I have missed all my pets. They seem to keep me going when I'm down. So I'm looking forward to seeing my two dogs and my horse. They also keep my stress levels down.
But thank you for sharing your story. It has given me a reason to not worry about the second round of test. Until there is something to worry about. I won't think about it until then. I must stay brave though its hard, I know I must go on. When I can't be brave I know I have this community as well as my SO that will help me be strong and continue to fight.
WOW that is something new as we both went to TCI and I was not given a special soap to use....
I know with time things change as they learn things,. and I am 5 yrs post op so, I am sure it was a change they felt was needed.
Thanks for the update and be sure to copy and paste your updates to a journal page so all your updates are in one place.....
Thank you to each of you about the answers you all replied to my pre- surgery shampoo query. During my pre-surgical testing day, a nurse gave me a 7 oz bottle of soap that I was asked to use all over, letting it stay on for 2 minutes before rinsing. The only funny part of that was that for the two minutes that the shower water was turned off, I almost froze!
I am glad that you went and managed to arrange to spend time with your family. One incident of my own that may put you at some ease is that the initial MRI that I had was interpreted inaccurately because my neurologist knew nothing about Chiari. She chucked and said "Go, there's nothing to report." I researched about specialists, and I found 2 separate surgeons (Dr. Oro in Colorado and Dr. Bolognese in New York. Incidentally, they both saw me as a patient that would benefit from the surgery. My neurologist flatly refused to write a referral. At the time, my anger at her led me to go to radiology to request a disc of my study myself. In fact, the very sweet lady at the desk asked me if I wanted more than one. The next day, I sent them with an introductory letter. Medical secretaries from both places called me and asked me if I could come for initial consultation. I chose to go to New York first, as it is a whole lot closer to NC.
Dr Bolognese wanted to do his own MRI studies, which got me to wondering if he had seen something bad and wanted to get a clearer image. I had the study that day, and he saw me again. I did have a CM1, and he said I would do well with surgery because I had no other issues/complications. Your legs' weakness may just want your surgeon to rule out other issues that have similar symptoms to Chiari. Selma told me that a while ago, Maybe send her a question about the significance of your leg weakness.
Dr Bolognese ordered a CT scan of my cervical spine - which scared me because I thought he had seen a significant skull issue also. As I learned, he wanted that test to view the bones around the spinal cord more closely. He told me that a CT scan was usual procedure and said he couldn't believe I hadn't one requested by my neurologist at home. He also had me do another MRI at my pre- surgery appt the day before my surgery to check for any changes before he operated.
And you know I had the surgery 7/29, so I am almost 2 weeks out. I feel much better than going into it. I know the goal was to restore the flow of CSF, but the doctor said that many of my symptoms would either ease or maybe even go away if I listened to all postoperative recovery directions.
I am pretty tough so my recovery is going well. I knocked out those narcotics immediately, and have taken Tylenol for the neck pain..
Keep your promise and don't stress until you get some answers- and it sounds from your post above that your surgeon in OH is very thorough. You no doubt have heard the saying "measure once and you may cut twice; measure twice and you may only have to cut once." May be he wants to check for errors on your original MRI before he proceeds. Whatever the reason may be, do try to be brave. Listen to CDs with calming sounds (ocean waves). I did not attempt to hold you hostage with this very long response; however, I remember my own fears and hope something written here will help you to feel better as you are waiting for answers.
I had my appointment yesterday and my cine MRI today. I will be returning home this weekend. Im spending time with my sister and her family before I travel home. I return to Ohio in two months after I complete new MRIs for the doctor and new blood test as well. So all in all I feeling kind of scared because he obviously didn't like what he saw on the first set of test or he wouldn't reordered them. Right? I hope its my brain over worring and not something worse. Though since three doctors have said I have lost strength in my lower limbs I'm worried. But I'm not going to stress yet. Not until we have more answers.
Have you gone and returned from Ohio?
Yeah, I know. I can't wait to get to see the Dr. Next week. Maybe it will give me some type of relief. My travel to Ohio will be well worth it.
Thank you for the information. Like you, I have read so much and asked so many questions. It's nice to know those who have gone before you :-)
They told me something like hibiclens. I believe that's how it is spelt. I was asking questions as soon as I did my research and saw that surgery could be needed. But you can get it at Walmart for 6.00 I believe. It's expansive but from what I'm told it does well.
Thank you for your reply to my question. I will wash with baby shampoo on my morning of surgery. And about the inability to wash for a time period during recovery - I will take the opportunity to show my hat collection.
A good question, and the answer is no, however avoid a shampoo that will leave a greasy residual (there are a few conditioning shampoos that are in this category). Baby shampoo is fine. The surgical team will sterilize the area arounds the incision. Remember that you may not be able to wash your hair for an extended period of time after the operation.