I just got done with the registration over the phone with Mayfield and he said he has set me up with Dr. Tew. I have read such great things about him on this and other forums so I am pretty happy about that. I was on the phone for over an hour and Jeremy was so thorough in asking every question that the other two doctors didn't even ask about.
At the same time on the phone with him my doctor called and has the orders for the full spine and CINE MRI and should be faxing that to me. Jeremy said if those MRI's will be done soon then I could wait to send in my scan and report until I have those because 99% of the time Dr. Tew will order a CINE MRI any way. So I am glad I went ahead and got that from my doctor.
He said "between us I am sure Dr. Tew will want to discuss surgery with you" but then said of course he may also want to start with another treatment of change of diet, a sleep study, etc.
I am feeling less anxious knowing I won't be doctor hopping and confident that whatever they suggest will be what is best whether it is surgery or not. It kind of put my mind at ease I guess I would say.
Glad to hear you got things going so fast. And it works with your insurance. Dr Tew is who I’m seeing at mayfield. I was supposed to get a sleep study after seeing him the first time but my ins wouldn’t do it. And he wanted me to be changing to a plant based diet. I haven’t been too successful with that either. They do know what they are doing tho and take the time to explain things.
Jeremy did mine too. Anglyn, did your surgeon have you do a diet change? I'm just curious. It seems like everyone who has Dr. Tew gets the diet change recommendation. I'm just wondering of all the ns in that practice do or if it's just Dr. Tew.
I saw Dr. Ringer and he didn't suggest any diet changes at all. I have celiac disease and am on a gluten free diet so maybe he figured more restrictions would be too difficult for me. I'm not sure if he recommends it for other people or not.
When I did a search I saw you had posted something about a diet change. I am hoping he doesn't suggest that for me because I had lap band surgery a few years ago and I cant eat lettuce or anything leafy really. So we will see.
Have you went in to see him yet?
How long was it before you heard anything back after sending in your information?
I should get my MRI orders today from my PCP for the lumbar and thoratic spine and the flow study so Jeremy said if they will be scheduled soon then I could wait to send in my other MRI because he will more then likely want the flow study one done any way. Which it only took 4 days to get in for one and got the results and scan the next day. So I am hoping I get that lucky again to get in and get them done and read.
I am really hoping he doesn't want a sleep study done for me because I don't sleep the way it is I know I won't be able to sleep with all the stuff hooked up to my head! My youngest that had pierre robin has sleep studies/nap studies all the time as a baby and even as an infant it was hard to get him comfortable enough to sleep! lol Of course I will do whatever they suggest, just hoping to avoid the sleep study thing :)
After talking to Jeremy on the phone and he took my history and all that, he told me to mail in my MRI disk and report that I had done previously of my brain and neck. It wasn't long after they got it that they called and set up an appointment. I think within a week of sending it they called me. I went in early December, he ordered a sleep study, MRIs of the rest of my spine, and a dietician consult. While I was there, before seeing him, I went to their imaging place for the cine mri. I am supposed to go back in about 2 weeks to see him again. I am kinda stressed about the diet because I haven't been successful in changing it enough. I am not the vegetarian type. I am thinking that he recommends the diet change for everyone. But you just have to do what you can do personally. When he was telling me what I should eat he said that I didn't have to restrict gluten or anything but I know I have a problem with it. So you just have to take your own needs into consideration.
I was worried about the sleep study too because I don't sleep that great anyway. I think that you can get something to help you sleep if you need it though.
I wouldn't do good at all on the diet either.. but I would try the best I could. I just have restrictions on what I can and can't eat already.
I am a little anxious to hear what he suggests especially with the comment Jeremy made which I know he isn't a doctor or anything but makes me wonder. So hopefully I won't have to wait too long. I just want answers.. I don't want to jump into surgery unless its necessary but just answers like we all want ya know?
The first neurosurgeon said my chiari isn't that bad, he didn't tell me the length or anything, just said maybe 5mm. So i am curious to know what it is exactly even if size doesnt matter :) I will be scheduling my MRI's for CINE and other one today so will see how soon for those.
Did they tell you the size or length of yours? Are you having a lot of symptoms?
My experience with Mayfield seemed more centered on the CINE MRI rather than the length of the herniation. They didn't rush into surgery. Dr. Ringer had Dr. Tew and the rest of the group weigh in on my CINE MRI before he called and suggested surgery. He wanted to be 100% sure that no other issues could be causing the symptoms and that surgery would actually help more than harm.
He told me that it won't get better without surgery, which I already knew that. But before I was finished there his nurse went over what the surgery would consist of. That I would have pain meds for the first week and after that it would be Tylenol or ibuprofen.
I knew what the length of mine was from reading the MRI report. It was 11 mm. Dr. Tew told me when I was there that the right is bigger than the left. And my cine showed that my flow in the back is blocked and there's just a small amount getting through at the front.
I am having quite a few symptoms. My blood pressure was high and I was started on meds for that in Sept. and it actually helped my headaches. I still have headaches and pressure but they are manageable. The things that bother me the most are the depression and anxiety and not being able to remember anything or concentrate. And just really exhausted all the time and back and neck pain.
I think you'll feel better after going to see him. They won't rush you into anything but they will take care of you.
I understand the size doesn't matter, it is more a curiosity for myself. And my MRI report was very vague and did not say anything besides Chiari I Malformation with bulging C6 and C7 discs.
I am surprised that with a blockage you haven't had surgery yet? I thought from reading other people's posts that with a blockage they were scheduled pretty quick for surgery. Guess it depends on the blockage/symptoms and everything all together?
Thanks Donna.. I do think I will feel better and a little more relaxed after talking with them. I have my MRI's for the spine and cine mri on the 30th.
I have the headaches that are tolerable and then I have migraines (at least that is what I have considered them for 4 years) and those are not tolerable. I have intermittent FMLA for those because I was having to leave work so much for them. I get those every 10-12 days and nothing touches them except vicodin or oxycodone and if that doesn't work then it is immediate care for a shot. I also have the daily back and neck pain. My back on the right side mainly (by my shoulder blade) goes completely numb and tingly, even dragging a pin down it I can't feel it. I also have the leg and arm pain. And I don't sleep more then a few hours at night even with my anxiety medicine which used to help. I was on xanax for a few years and just switched to kolonopin but it isnt working any more either. When I get up in the morning for work it takes a lot of effort to get out of bed, my entire body hurts and I am just exhausted. And by mid afternoon at work I am just done. I can't wait to get home and lay down and do nothing. I have no energy at all for anything and it has been this way for the last 6 to 8 months. But I love my job so I come in almost every day and stay as long as possible.
At least living in Indy it isn't that far to get there :)
I have the same troubles trying to get up in the morning. I don’t know if I’d make it if I had to get up for a job every day. I am a stay at home mom. And I get tired fast too. I have had the killer headaches that I’ve thought were migraines for quite a few years. They have been better since the blood pressure meds too. I also have some loss of feeling in places on my left side. I guess I actually have a lot of symptoms I’ve just been living with them for a long time.
I was a stay at home mom for 5 years when my boys had all their surgeries and doctors at Riley. But after getting divorced in 2009, I had to go back to work. I actually really like my job and I am grateful to have great insurance, and two bosses that are very understanding.
I hope your appointment goes good in the next few weeks! I will let you know when I hear back and see if I get the same suggestions for the diet and sleep study :)