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Post by dawn on Oct 20, 2015 7:06:21 GMT -6
After 4 years of waiting and watching we are moving forward with the surgery.
I will be having the intramedullary C1-C2 tumor removed by Dr Rhines at MD Anderson in Houston.
Wow - this is it. I appreciate all the information I receive on this site and look forward to hearing your pre-op tips and tricks. Thanks in advance.
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Post by Shirley on Oct 24, 2015 23:24:33 GMT -6
Hi Dawn,
Good luck on your surgery in December. I wish I had found this sight prior to my surgery because there is nothing compared to hearing real life stories. The fact is everyone is different and the outcomes are different. I went through two hip replacements last year and it was a piece of cake compared to this surgery (C4 to C7 intramedullary tumor). I knew I had to have the surgery or I would eventually become paralyzed and die. So having found the right neurosurgeon I had it scheduled 2 weeks after. My suggestion is to get all of your affairs in order. Hopefully you have family or friends to help you when you come home. Try not to concentrate on the operation ....concentrate on the fact that you will finally be rid of this tumor. If you work...you may need to keep it open as to when you come back or even start back part time when you are ready. I actually started back to work the third week after surgery. I was a mess back then but it was good for my head. Keep a positive attitude. It takes a long time for the nerves to heal and you have to be patient. That is something I didn't really understand prior to surgery. I still can't drive due to numbness in my legs and feet but am lucky to have a retired husband (I call him my personal Uber) to drive me. I wish you a successful operation and a speedy recovery. Please keep us posted.
Shirley
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Post by dawn on Oct 25, 2015 7:00:40 GMT -6
Hello Shirley,
Many thanks for your reply and advice. I love that you encourage me to concentrate on the outcome rather than the surgery. I will take that to heart as I just get 'tiny terrors' thinking about the actual surgery. I would love to chat on the phone if you are willing. I will send you a private message with my number if that is okay.
What kind of work do you do? 3rd week back? wow. I keep wondering if I will be able to type. I work as an artist full time and an RN part time. Both jobs require a lot of fine motor control in the hand and a lot of typing.
Again, thank you. Your information and experience is precious. I know we have different outcomes, but it really encourages me to hear that people are back to living their lives tumor free!
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Post by Shirley on Oct 26, 2015 20:46:29 GMT -6
Hi Dawn,
Yes I would like to chat with you...I don't know how that works...can you send me an email? I have an office/warehouse and sell cooling and warming apparel on my website. I am basically a 1 person business. Had my husband drop me off and had my walker to get around. I was just determined. I was in a lot of pain but it really helped to get my mind thinking of something else. It was hard to type at first...I started typing on my laptop as soon as I got home...my fingers kept hitting the wrong keys and I was slow...but each day it got better. I didn't go to rehab after the hospital...I opted to go home. I think they let me go home as I could walk with the walker in the hospital. My surgeon's instructions at that time was to walk as much as I could, put ice packs on my neck and not to lift anything heavy. I later went to pt mainly for balance.
The hardest thing for me right now is not being able to drive. I am afraid I may fall if I take a gym class so I bought the "gym chair" so I could exercise at home. Swimming has also been good. My surgeon was extremely happy that he got all of the tumor, however, as far as all of my body issues I was having he just said it takes time and he would see me in a year. I am going to see a local neurologist to see if he has anything to offer. I took oxycodone for about 2 months but haven't taken anything since then.
You will get through this. It will take time. Just listen to your doctor and do what he says. Sometimes you have to push yourself to do the walking and exercises but it will pay off. My prayers are with you.
Shirley
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Post by dmdgood on Oct 28, 2015 3:16:22 GMT -6
Dear Dawn. My thoughts and prayers will be with you on the 8th. You have been such an inspiration to me. I watched Dr Rhines' presentation at the recent patient conference put on by MD Anderson in Houston for which you provided the link. One of the things that stood out for me is that although surgery outcomes are influenced by function going into surgery, most people generally do better in the medium to long term following surgery. So as he or you said, you can put your energies into recovery from here on in, knowing that you will get over the initial effects of the surgery, and with a good chance that you'll be tumor free. You'll also be in very good hands with Dr Rhines.
I am grateful for your sharing of your experiences with your condition. It has been enormously valuable to me, and also inspirational in that you actively seek information and check out what is true and right for you rather than just defer to the opinions of experts (which we know don't fit all sizes, and are often contradictory). DM
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Post by dmdgood on Oct 29, 2015 2:40:52 GMT -6
I also wanted to add, what a wonderful community we have here on this forum. There is so much sharing and caring. I would be lost without it. Thank you all. DM
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Post by pringleman on Dec 6, 2015 6:48:38 GMT -6
Good luck Dawn,
Have faith that it will turn out ok. Be positive and after the operation get up and start moving as soon as possible - I believe that you need to move to keep your muscles strong.
I will be thinking of you.
PG
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Post by dawn on Dec 20, 2015 6:40:16 GMT -6
Surgery was a great success! Glad I chose the surgery as I have much less pain now. Rehab is going well and each day I think of Pringleman telling me to keep moving which I do.
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