Just curious, if you were offered surgery right now, would you?

General
1

I am sitting here thinking how I have good days and bad days. The good days aren't by any means pain free perfect days, but better days. And the bad days can be really bad days. But as I wait to hear from the Mayfield Center I ask myself, IF I was told/offered to have surgery in the near future, would I go ahead and do it? Or try to wait as long as possible?

So for those of you that may be in the waiting phase too, or playing the doctor hopping game, what would you do?

I see the pros and the cons. I think for myself I would want to go ahead and have it done. I have seen the progression of my headaches, back pain, neck pain, the chronic fatigue, no sleep, and all around depressed because I have no energy for anything. For some one that is very OCD and house is always clean and stuff is always where it belongs, I found myself over the weekend laid up on the couch watching my husband do it, and I was depressed that I didn't feel like doing anything. I cried at the drop of a hat or even just thinking about it. Not wanting to go anywhere if I have to walk around a lot or sit in my uncomfty chair at work all day is just dreadful. A year ago I was active, loved playing outside with my kids, going to the pool, playing and wrestling around with them at home, and now the thought of doing it is painful.

But on the other hand, you read the good and the bad from surgery. I know everyone is different, and I have had 7 surgeries myself and always bounced back pretty quick, but nothing like a brain surgery. And I know I was younger with those surgeries too.. lets face it, as you get older it might be different lol

The thought of the pain, the missing work, the recovery alone is what makes me question it. And think why not wait and see if it gets any worse before having surgery? But then again, the recovery is temporary (hopefully) and the way I feel now is not temporary. So maybe surgery would be the best idea. Of course this is just all thinking, I haven't had surgery offered to me, and am still in the waiting game, but like others, I am thinking about the what if scenarios.

Guess I am curious for those of you that have not had surgery what your thoughts are? Or for those that have had surgery do you wish you would have maybe waited longer?

2

I would only have Surgery if the NS was experienced with Chiari. Being experienced means performed more than 30 of these surgeries a year. I was lucky to find Dr Dong Kim who performed 50 last year. Make sure your NS knows what he’s doing and feels confident with you. :wink: Good luck!

3

I don't want surgery. I have had symptoms for my entire 36 years of life. I have heard that the shorter you've experienced symptoms... the better the surgery result, so....

Even if it would help... as a single mom w/ no back up there is no way I could afford any recovery time.. and with no guarantees of success... it's just not worth it.

It sucks though cuz that means I will never know what it is like to be totally pain free. I will never know what it feels like to NOT be constantly, extremely fatigued. I can't 'afford' to live like this and can't afford to take the risk of getting 'better'. I'm basically stuck and just praying for SSI approval and that my symptoms don't worsen to the point that I can't still care for my kids... since my youngest has 13 years 2 months until he is 18.

4

I just had the surgery Dec 13th, and for years I thought I would never do it because it was too risky. Now I wish I would have done it sooner! My recovery was way easier than I thought it would be, and I wasn’t off work that long but the break from it was just the right amount of time. The relief I’ve experienced so far has been very promising and I’m sure it will only get better. Can’t believe I spent years suffering. :frowning:

Best of luck with whatever you decide, I know this is not an easy decision. Hope this feedback helps a little.

5

I’ve had symptoms for a year and they hit me like a freight train I’m very scared but a year ago I was running 5-9 miles a day owned my own business also ran our horse farm we have three teen children I ran to their perspective events and practices and they are very busy dinner was always ready by 6:30 house and laundry done. Now business gone no running it hurts everything house takes a backseat kept three horses pulled others out of race training put others in boarding because I’m not able to work them at home. So three here the rest spread out it really sucks. My days are me running kids around and getting stuff done around house it’s as far as I’m able to do. So YESYESYES. I would have it!!!

6

So far I have no regrets on the surgery. Yesterday I went jogging. This morning I was out of bed in time to make coffee before work. Seems like such little things to most people but before I was in bed until 10 minutes before work. I was back in bed as soon as I got home. Like Sparkyschick said above the recovery was so much easier than I thought it would be. I know everyone has to make their own decision based on their circumstances but for me I knew I had to take a chance on getting better. I had less energy than my parents and they are in their 70's!!! My 72 year old mom with arthritis was offering to clean my house because I couldn't!

I hope you hear back from Mayfield soon! I cannot say enough good things about them! They were so nice to me and did a steller job with my surgery!

7

Thanks for all the replies, I know it is different for everyone and a hard decision to make for some of us. I am thinking I would be one that would lean more towards surgery if offered, I can't help but think where I was a year ago and how I am now, and with two little boys with special needs of their own, I do not want to be miserable and in pain and not able to keep up with them! Recovery will come with time, but symptoms can get worse with time as well.

Anglyn, which doctor did you see at Mayfield? I am "assigned" to Dr. Tew at least that is what the intake person told me. They received my MRI's on Monday so I am hoping I hear back by the end of the week. Jeremy had said to allow 4 days for Dr. Tew to review my information and that a nurse would then call within 24 hours. So I am hoping either the end of this week or some time next week. I am anxious to see what they say/suggest as we all are when going through this.



Anglyn said:

So far I have no regrets on the surgery. Yesterday I went jogging. This morning I was out of bed in time to make coffee before work. Seems like such little things to most people but before I was in bed until 10 minutes before work. I was back in bed as soon as I got home. Like Sparkyschick said above the recovery was so much easier than I thought it would be. I know everyone has to make their own decision based on their circumstances but for me I knew I had to take a chance on getting better. I had less energy than my parents and they are in their 70's!!! My 72 year old mom with arthritis was offering to clean my house because I couldn't!

I hope you hear back from Mayfield soon! I cannot say enough good things about them! They were so nice to me and did a steller job with my surgery!

8

I was assigned to Dr. Ringer. I believe Dr. Tew is the head doctor of the group so you are in good hands! I know Dr. Ringer had him review my CINE before deciding whether to schedule me for surgery.

9

Awesome, I have read mostly good things about Mayfield and Dr. Tew, and of course a few negative things which there will always be. I had my PCP order all the MRI's so hopefully I won't be missing anything that they would want done. Other then a sleep study? I see a lot of people saying the needed one of those done.

My CINE MRI only said "sluggish flow" at a certain section of my brain or something. But sluggish isn't exactly normal from what everyone says on here :) I am just looking forward to hearing a "real" explanation of what is going on instead of all the BS :)



Anglyn said:

I was assigned to Dr. Ringer. I believe Dr. Tew is the head doctor of the group so you are in good hands! I know Dr. Ringer had him review my CINE before deciding whether to schedule me for surgery.

10

I had my decompression surgery back in april of last year. I have noticed little difference if any from my symptoms . but was told mine was very compacted after the sugary was done. Also that everyone heals differently from surgery. I am still glad I had it because it has taken away anymore damage from the pressure and I am just dealing with what has already been done.