Hi everyone! First off, I wanted to say thank you for the warm welcome. That was completely unexpected and a pleasant way to start my morning!
The hardest things so far have been the waiting (almost 3 weeks since tentative diagnosis, still waiting for the neurosurgeon's call), not knowing if I'm able to make the right decisions for my care, and the toll it's taking on my poor husband. He feels helpless because this is something he can't fix for me... I feel helpless in the face of this scary limbo we're in, but I feel like when things start moving, they're going to go fast. Trying to enjoy (haha) this time of solitude and quiet as the past three years have been non-stop work, volunteering, school, obtaining certifications, the wedding and trying to start my own small business.
My questions to you all: I read somewhere that a few years ago a teaching hospital had started doing decompression surgery laproscopically through the nose/sinus cavity. Has anyone else heard about that or experienced that type of surgery? Also, how do you cope with the waiting? Waiting for the doctors, waiting to feel better, waiting to recover from surgery, waiting to get back to the life that's waiting for you... I am no good at sitting still but pushing myself too hard results in me getting even sicker (pushing too hard these days can be as much as trying to sweep the floor or even walking to the kitchen for water).
I know it's probably a long shot, but has anyone had surgery in Spokane, WA? Any recommendations for a neurosurgeon here? My husband and I are willing to travel to Seattle, as long as my insurance covers the surgery there.
Thanks for listening to my rambling. I don't really have anyone to talk to here who understands what I'm going through.
I know a lot about waiting. It took me 5 years & 52 specialists to get a CM diagnosis. It takes a lot of faith to face the unknown. After a certain point the worrying went away for me. You kinda turn into a dealing with CM mode. Once you hear from your Neurosurgeon it takes a lot off your shoulders. We have to make the best decision with the information we have. You are very fortunate to have found this group. Everyone here has basically the same diagnosis but different stories. We are a plethora of knowledge about CM. Ask us anything !!!! I also worried about what my illness was doing to my family. Please know you can always come here with anything.....We Understand !! I Promise !! I have read several articles about the laproscopic decompression surgery but don't know anyone who has had it as far as I know. Have you discussed it with a neurosurgeon? I think it's used for very mild cases. I am from Va. but we have Members from Washington & Oregon. I know they will be on at some point & will recommend NS in your area.
Please let me or any of the Moderators know if you need anything,
welcome Katrina (beautiful name that is my daughters' name as well)
Anyhow ramble away that is one of the many things we are here for. For the waiting, tr to so what relaxes you, I know it is nerve wracking at times and even down right frustrating and try to take it easy. As you mention when you push too hard it hurts, take the time since you have been very busy relax, smell the flowers and enjoy your coffee/tea.
A hospital around me Allegheny General (Pittsburgh,PA) does the laproscopic surgery and from what I researched the main advantages (if you want to call them that) is it is to be a shorter recover time and the do not open the dura. However many complications can still result from it as every individual is different, The other important item in my opinion is if the dura does need to be open they can not do it that way and you have to endure another surgery. I personally do not know of many people who have had their dura opened...some were good and some were bad.
I honestly don't know what more to say except I am not trying to scare you and it is a discussion that you should have in-depth with your NS because ultimately it is going to be you and the NS team in the OR when it happens.
Best of luck and try to relax while waiting, I know hard but try.
Thanks for your responses and help, everyone! The videos are great - if I don't find the doctor I need here, I will definitely try to contact Dr. Ellenbogen's office. I'm hanging in there, waiting for the neurosurgeon to call. I have a great support system - a massage therapist friend is coming over for some gentle, relaxing massage! Lucky me! :D I will keep updating my profile as things develop. Thanks again for your support!
A massage? Lucky Duck! Massages always help me feel better although I haven't had one in a while. Have you ever used Arnica Oil? I use Weleda's Arnica Oil any time I have a really sore muscle and it works wonders.......Wendy
7thhousedoula said:
Thanks for your responses and help, everyone! The videos are great - if I don't find the doctor I need here, I will definitely try to contact Dr. Ellenbogen's office. I'm hanging in there, waiting for the neurosurgeon to call. I have a great support system - a massage therapist friend is coming over for some gentle, relaxing massage! Lucky me! :D I will keep updating my profile as things develop. Thanks again for your support!
Amazon has the best prices for it. A bottle will last a very long time because you only need a little. Definitely get the Weleda brand though. It is by far the best one and smells great. I use it on my kids too. They love it.