Surgery in two weeks and having second thoughts

Symptoms and Treatments
21

Amber. I am one year past my surgery. So last year I was struggling with the decision as to whether or not to have the surgery. I kind of felt damned if I did and damned if I didn't. It's a big decision and not an easy one to make. Like you I had good days and bad days - and I don't think I ever had as bad a day as some of the people I read about on this site. I'm a grandmother and I've lived a pretty long life with Chiari not knowing what caused the symptoms I've had over the years. I wasn't diagnosed until Dec 07. After the diagnosis of Chiari, during testing, it was discovered that I had a brain aneurysm and that needed to be fixed first. I had three surgeries for that before I could think about the Chiari surgery. After going through all that, and a broken foot, and a really bad car wreck I was really ready for a break. But the car wreck made my Chiari symptoms worse. I still put off the surgery though and struggled with the decision. I'll share with you what one of my aneurysm support group friends said to me. It really helped me a lot when I was making the decision. She said that she understood that I was afraid but I should think about how wonderful it would be to be free of worry after I had done what I could to make my life better. Free of worry - that sounded good to me and I did eventually decide to have the surgery, For me, it was a good decision and I don't regret doing it. When i woke up the next day after the surgery, for the first time in a very long time, nothing hurt. Part of the reason for that was the fairy dust they had me on for pain, of course. I really didn't find the surgery or the recovery period horrible. Nothing is ever as bad as I can imagine it to be after all. I did a lot of resting....and believing that everthing would be o.k. For me I think the positive attitude aided in the recover. I had some pain in my neck for several months and will still occasionally have a period of time when my neck gets "tired"; my worst pain was actually where my doctor harvested ribs to correct basilar invagination at the same time he did the chairi surgery. All the pain (for me it wasn't bad) was controlled really with very little pain medication. I hated wearing the collar around my neck because I'm claustrophobic,but I got used to that pretty quickly and I actually liked having it on. I was up walking the next day after the surgery. I don't have much of a scar - no zipper scar; my neurosurgeon put all the stitches on the inside. For the most part the dizziness is gone and I can walk in a straight line now. I haven't had the veritigo or headaches since my surgery. I will occasionally have a little symptom of some sort, but for the most part I'm good. I'm glad I did the surgery; for me it was a good thing. I don't worry anymore about what MIGHT happen and I feel like I've done what I can to make things better. The decision to do the surgery is such a personal decision though and only you can decide what is right for you. For me I knew when it was time......you will too. I'll keep you in my prayers and If I can answer any questions for you, just email me and I'll be happy to help if I can.

Hugs

Shirley

22

Hi Amber.....

just hoping you are doing ok .....thinking of you.

Lori

23

Amber,

I just found your post above. I was searching on google with the key words of Chiari and feeling good followed by feeling bad..... : ) I have had symptoms for years, I have seen over 30 doctors over the last 19-20 years and was finally diagnosed with Chiari this June (2011). The neurosurgeon that diagnosed me recommended surgery. I have your concerns exactly. From the middle of May to the beginning of August, I could barely get out of bed. I basically lost this summer with my children (16 and 19 years old) and family . About 2 weeks ago, I started feeling better. we were able to take a vacation for several days, I felt wonderful. Not wonderful, as in "I can choose to get up at 6 AM, go for a nice long jog, spend the morning cleaning, go out to lunch with friends, go to the beach during the afternoon, cook dinner, and then go out with friends....", wonderful, but wonderful for me! I could actually enjoy myself. There was no head pressure, neck pressure, I could think clearly, I had motivation to do something, etc. etc. This lasted for about 2 and a half weeks. Yesterday afternoon, with my daughter's help, I moved our porch and deck furniture into the yard. Nothing heavy, and with help. Immediately my neck tightened up, I had pressure in my head with a headache and my eyes hurt. Today, I am not feeling well at all, either. Headache, sensitive eyes, neck pain, weakness,the strange feeling in my ears, etc. etc.

So, I have a similar question to yours. I am afraid if I have surgery, I won't even feel as well as I felt over the last 2 weeks. There are certainly risks involved that could lead to increased symptoms and/or new issues. I was wondering if you could answer some questions? How old are you (I am 47)? What are your main symptoms? What did your doctors tell you? What did you decide to do? Where are you located?

I totally understand what you are saying about others not understanding! My husband is wonderful. He knows me well and knows when I feel good or not just by looking at me. I recently started trying to work a very flexible, part time job but was not able to be dependable and do the job that I felt like I should. I just never know from day to day how I will feel. I get frustrated because, when I feel good, I am very normal looking, and when I feel bad, if I have to go out, I can 'get it together' and I look normal, so I feel like people are judging me. Questioning me.... I don't know if that makes sense, but it sounds like you are having some of the same situations. I would love to communicate with you via email, facebook, or even over the phone. I have known for many years that something was not right, but all of this, from a Chiari perspective is still very new to me.

Okay, so I just pulled up your profile and saw that you did decide to have surgery. It looks like you are feeling good at this point. That is wonderful news!!! I also see that you are in St. Louis. I am in North Carolina along the coast. I would still love to hear from you!

Take Care!

Teri