I am having my surgery on the 8th of August. I fought really hard to get this surgery, going from Dr. who sends me then to another Dr. to get cleared, who sends me then to another Dr. to get cleared. Finally I get cleared and surgery scheduled. When I was first diagnosed in May with Chiari, I was having really really bad days. Seizures, ringing in ears, pain, cramping hands, stiff neck and back, tachycardia, followed by bradycardia. Now I still have some of those, but I don't feel nearly as bad as I did before.
My battle that I am fighting with myself is why am I going to take the risk of surgery if I don't feel like crap everyday. I'm not sure what to do. I know I've asked the question before about good days and bad days. But what about good weeks and bad weeks. Is it worth the risk??? Then I feel like if I don't have the surgery is it all going to come back 10 fold? I am really confused on what to do.
I'm also having a hard time because I haven't been able to work since the beginning of June, and i've ran out of my eto and esb, so people at work have been so great and giving, they have been donating their own eto to me. It's very difficult to accept because I don't feel sick everyday and I don't look sick. I go visit them at work and I walk in with a tan, because I go out in our pool during the days with my kiddos. When I'm in the pool, I'm not sore at all the water just helps. People who don't know what Chiari is, or understands what it is just don't get it.
Please, please someone give me some advice on what to do, insight on things. There are no chiari support groups where I live and besides this website I have no one else to talk to that understands.
Hello Amber! How are you feeling now? I thinks its more of your choice on what you want to do about surgery. My only symptoms were/are burning of my left arm and hand sharp pains that traveled my left side when I coughed or sneezed and my left breast and arm are numb. Im still having the burning and numbness and I can deal with that to a certain degree. I had 2ndsurgery thoughts and mom and dad tried to talk me out of it but I was the one in pain not them. If you canal your surgery and you start backing having problems do you think it will be easy to get another scheduled?
But again its all up to you. But I pray that the decision you make will be the best decision.
Love Tradee30
If you ever needed to talk send me a message im willing to listen, No problem
Oh wow. I totally get you on this. Some days I’m okay, like today. And I think okay, I can handle this…then I have days where I’m completely NOT okay and I think I can’t take this anymore. It would be a very hard decision in your shoes. I think its an important one and I’m glad you’re giving it so much consideration. I really hope you come to an answer that is perfect for your life. Just remember though, that you are the one in pain and you are the one suffering. So only you can truly make this decision for your life. Do you want to risk surgery? Do you want to risk not getting surgery and having more and more bad days ahead…it’s such an unknown. Big hugs…
Thanks Tasha, I think after today I am going forth with the surgery. I am not having a very good day at all. I'm very shaky and achy. I am having some new symptoms and I'm not sure I want to experience anymore. I'm still terrified to have the surgery. But I have to just put it all in Gods hands and hope that it will out be ok.
You're right, I think my biggest fear now is that I'm not going to wake up after surgery. I'm sure I will, but I'm just terrified. I want to be here for my kids, I want to watch them grow up and graduate. I want to see them get married and have babies of their own.
I know that It will probably be best for me to have the surgery so I don't have these bad days anymore, which today is a BAD day. This isn't the mom I want to be either. Do you ever just think to your self somedays and just ask WHY? And do you ever just think " I really hate this". Tradee30 said:
Hello Amber! How are you feeling now? I thinks its more of your choice on what you want to do about surgery. My only symptoms were/are burning of my left arm and hand sharp pains that traveled my left side when I coughed or sneezed and my left breast and arm are numb. Im still having the burning and numbness and I can deal with that to a certain degree. I had 2ndsurgery thoughts and mom and dad tried to talk me out of it but I was the one in pain not them. If you canal your surgery and you start backing having problems do you think it will be easy to get another scheduled? But again its all up to you. But I pray that the decision you make will be the best decision.
Love Tradee30
If you ever needed to talk send me a message im willing to listen, No problem
You and I are in the same boat. I often feel like the surgery can wait but then, why do I want to prolong the pain I am in. 4-6 weeks of surgical pain and getting back to 'normal' if you is worth the risk.
I have had other minor surgeries, so I know I it will be ok. I too hate being the mom who cannot be hugged hard around the neck, not able to play and just plain tired. Tired of complaining, feeling like garbage and knowing that I can have something done to change this is making my pain a little more tolerable.
Just sit back and think about the pain you are enduring. Hang in there.
At the time when I had the decision to make about surgery, all I was worried about was having the pain stop. The only thing I was worried about doing the surgery was having my hair shaved. I was a 15 year old girl in high school. I look back now and think how stupid that was to worry about that. It was the least of my problems. I didn’t sit around thinking about yes or no to do surgery. When I was given the option of surgery I just took it as it would help the pain and in my mind, it would all stop. So it was a yes for me. I am glad I did it. It helped me ALOT. Although I still have a lot of headpain and many more symptoms, my headpain isn’t nearly what it used to be prior to surgery. I know everyone is different.
I see you have gone back to deciding yes to surgery. If your pain outweighs your fears of surgery you have your answer/decision. Just know that it is not a cure. But it can help.
I have the bad days and those are the days I sit around and think why me? But then I also think that I wouldn’t want someone else to have to deal with it. I’m used to it, I tolerate it.
I hope you are feeling better! Have you read anything on the surgery procedures?
-Alicia
Amber, I feel your anguish honey, big time!! My surgery is on Aug 23. As everyone said, it's your decision. I know that advice doesn't really help. I hear what you're saying about good days and bad days. Unfortunately lately for me, it's more bad days. But when I have a good one, I feel guilty. Is that rediculous? I have a tan too from being in the pool and vacation. Remember we're home from work for a reason. We're not fakers. I love my job and miss it very much. I too have deep fears about not waking up! My kids and my husband are my life too. That's what drives me to my surgery date. I want to have the old me back. Well, as close as I can. Remember, Chiari is progressive and is lifelong. However, the surgery will help stop the progression and hopefully will subside some of our symptoms. Everyone is different on their recuperation. We need to go in with a positive attitude telling ourselves WE ARE FIGHTERS AND WE WILL DO GREAT! WE WANT TO GET WELL AND BE THERE FOR OUR FAMILIES. We are going to get thru this Amber, I just know it!!!!!
Thanks Christine. I too have been having some really really bad days lately. So I’m pretty sure I’m ok with having this surgery now. I went today for my Pre-op visit and everything is set. Now I just have to wait 2 weeks.
Christine said:
Amber, I feel your anguish honey, big time!! My surgery is on Aug 23. As everyone said, it's your decision. I know that advice doesn't really help. I hear what you're saying about good days and bad days. Unfortunately lately for me, it's more bad days. But when I have a good one, I feel guilty. Is that rediculous? I have a tan too from being in the pool and vacation. Remember we're home from work for a reason. We're not fakers. I love my job and miss it very much. I too have deep fears about not waking up! My kids and my husband are my life too. That's what drives me to my surgery date. I want to have the old me back. Well, as close as I can. Remember, Chiari is progressive and is lifelong. However, the surgery will help stop the progression and hopefully will subside some of our symptoms. Everyone is different on their recuperation. We need to go in with a positive attitude telling ourselves WE ARE FIGHTERS AND WE WILL DO GREAT! WE WANT TO GET WELL AND BE THERE FOR OUR FAMILIES. We are going to get thru this Amber, I just know it!!!!!
Praying for you today, I am imagining that is a hard decision… My son only has just had a diagnoses and I am wondering if and when he will get more symptoms…have you had symptoms all of your life…The way things are going i would say …if you have a great and fantastic surgeon you may want to go for it…It seems as if some people are in such pain with Chiari. If you can get relief with a surgery that is not too risky…as our neorologist said “surgical decompression” is low risk…I don’t know what your surgical plan entails but always go to a great hospital with a surgeon that you trust! If my son is going to get more symptoms…I hope he gets them soon… so we can get it fixed up…Blessings to you my friend and praying that it all comes togeather for you. CInzio.
Clnzio said it as well..the surgery itself is really considered low risk..there was a WEBCAM on youtube I think showing a Chiari operation...at the very end...the NS said..basically, from a NS's standpoint it is an easy surgery.
My NS told me the same thing...I have had 2 neck fusions and he said those were much more detailed and riskier surgeries.
I was decompressed 8/08..so almost 3 yrs ago..still have some issues but still glad I did it.
Christine....Wow ..your surgery is coming up too!!! You are both in thought and prayer.
My 15 year old daughter just went through the surgery last week and she is happy she did! Immediately, the evening after surgery, she noticed some of her chiari symptoms were better! It is a rough few days, but so worth the long journey! Remember, just living your life everyday with Chiari makes you strong enough to do the surgery! You can change your life in so many ways! Good luck and special blessing coming your way!