probably a dumb question

[golfnut]

I know from reading this forum that the surgery has been described as "horrendous" by someone while another described the pain as "insane". Knowing this and what I've read about the surgery and the long, slow recovery period, I wonder if those of you who have had surgery had family members and friends who didn't understand your pain, depression, need for pain meds., etc. I think my mom (83) thinks it will be similar to her hip replacement. I guess my question is, that while one is really recovering as well as should be expected for this major surgery, do those who aren't aware since they do not know anyone else who has had it, think that you aren't doing well, while you're actually right on target (or maybe they think you're a wimp!) I probably won't even care when it's my turn.
Just curious . . .

[ShariMSU]

It is a good question. Unless someone has actually gone through this surgery I personally feel they don't understand what we are going through. Not even the surgeon. My husband is so wonderful and supportive, but he doesn't realize how I am still struggling with soreness and stiffness, because at 3 1/2 months I look like myself. It's hard for others to truly know if you are doing good or bad. Most look at me and think I am doing remarkable from what they see I have been through. I always carry photocopies of my xrays (small size) to show those that ask. Once they see these, they always say, wow now I see what you have been through. My husband and surgeon are very much like me, type A, and push you to think through things. Is not so easy to do with this experience. I would not spend time really worrying on this. It all seems to work out and its important to share how you feel as much as you can. I don't think my husband ever thought he would know so much about the spine.
You will be so focused on recovery, this will not be an issue until you are feeling better. Then everything is a little easier to deal with.

[ADMoul]

I think it's important to educate those around you (close family, caregivers) as much as you can beforehand. I won't say my husband read the Wolpert book cover to cover, but he was pretty aware of what to expect and like Shari's husband, knows more about spinal surgery now than he wants to! I tend to be a pretty tough cookie with medical stuff and yes, there were some nights those first weeks at home when he was dealing with me in tears because I was so frustrated trying to sleep comfortably. I would not call the post op pain I experienced "insane" but everyone is different in their healing and pain tolerance. The muscle spasms at night were rough, but sometimes I think I had more discomfort from the swelling and fluid retention than I did from actual post op pain, which the meds controlled pretty well. Shari, I know what you mean about looking and appearing "normal" even though your body has a long way to go. I am still re-arranging pillows at night and getting out of bed like an elderly person even though I'm over 6 months post-op and going pretty much full-tilt all day. It's a one-day-at-a-time process. Great question, Karen.

[golfnut]

Shari,
Thanks for your reply. I had been to your web site before, but had actually forgotten to get back to it. You have definitely been through a lot, but it sounds like you're doing great now.
You are doing a service to everyone who is considering surgery or has had it by providing this web site. I think the links are very helpful. I have followed Stacy Lewis's golf career, since she is the celebrity spokesperson for the Scoliosis Foundation, but had not seen the article that you had a link to. Thanks so much for taking the time for your web site. I plan to read it often!

[golfnut]

Thanks, Anne. I have told my husband that he needs to read the Wolpert book prior to my surgery. I have tried to prepare him, but he's not one to face reality sometimes when it's not what he wants it to be. I will be fused T-4 to sacrum, too.

[JenniferG]

If you feel people don't understand your pain, show them your before and after x-rays and maybe even your incision. That should cure them of any doubts about the pain you're in. But you may not be in that terrible kind of pain, not everyone is. The medication holds the pain at bay quite well for most, though getting your meds late, can bring the pain back.

I am probably forgetting about the pain now, but though I remember some bad moments, they were short lived and only when I was in hospital. Once home, I had very little pain, which I think for me, was partly psychological, partly a decent bed.

The ruptured disc I had in 2000 was far worse and I had nothing to show for that. But your x-rays will be pretty self-explanatory.

[gmw]

Not a dumb question, Karen. I know before my surgery, I felt sometimes my family didn't understand what I was going through, nor what I would be going through during and after my surgery. But after sitting thru my last dr appt pre-op and listening to all that was going to be done they had a better understanding. Then, when they saw me after surgery and how things went in the hospital, I couldn't have asked for more understanding and support from them. They were and continue to be great.

Even though the surgery is very tough and I had a lot of swelling, etc. My pain was managed very well through pain meds. My dr did not hold back on allowing me to be as comfortable as possible with the meds. What's very fortunate about the whole process is, I barely remember anything that went on while in the hospital and for the first 3 weeks after.

You'll do well and your family will probably be more supportive and understanding than you ever thought possible.

Glenda