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susancook
01-02-2013, 09:26 PM
I have never had back surgery. My back pain now is intense. I take 2 Dilaudid twice a day and I don't think that it does anything to help. Now, I'm worried about postoperative pain after the PCA is discontinued. I imagine that the pain after surgery is severe, and if Dilaudid doesn't help now....how am I possibly going to be able to control my pain postoperative?
Susan

tae_tap
01-03-2013, 04:41 AM
Susan,
Yes, you can expect post op pain but this is something your doctor will be able to work to find the right thing to help control it. It is also one of those things you wont know how your body may react. It is something that you don't need to stress about. You need to look at the bigger picture and end result which is your spine being fixed and long term pain being gone. Start positive thinking now, because that is what is going to get you through the rough patches. There is power in positive thinking. Invest in a good heating pad because that too will help calm things down.
Tamena

rohrer01
01-03-2013, 08:59 AM
I thought you said you had neck surgery where a nerve was accidentally injured??? Maybe I'm confusing you with someone else. Anyway, post-op pain is always managed no matter what surgery you have. If the medications don't cut it, then they find something else. I've never had back surgery, but had other surgeries. The pain meds don't always get rid of the pain entirely, but enough so that you can rest and recover and get around as your body allows. I would discuss this concern with your doctor.

Yep, it was you. You said:
"I had neck surgery and the surgeon cut the terminal part of a nerve and I can't more one arm in a certain direction. I would still have the neck surgery again because I needed a diagnosis. I get it, honestly I do. You can let go of this one. Let go.......
Susan"

So how did you fare with recovering from this surgery? It sounds pretty invasive to have cut the nerve. Although soft tissue surgeries (I'm making an assumption that it was) are probably easier to recover from than spine surgeries. Again, I would bring this up with your doctor. I had a surgery and was already on pain meds for my back and was worried about pain control. They just gave me stronger pain meds for a while.

susancook
01-03-2013, 12:38 PM
Susan,
Yes, you can expect post op pain but this is something your doctor will be able to work to find the right thing to help control it. It is also one of those things you wont know how your body may react. It is something that you don't need to stress about. You need to look at the bigger picture and end result which is your spine being fixed and long term pain being gone. Start positive thinking now, because that is what is going to get you through the rough patches. There is power in positive thinking. Invest in a good heating pad because that too will help calm things down.
Tamena

I own 3 heating pads, even one that stays warm for a couple of hours unplugged. You are right, I do need positive thinking. I stayed in the house for a couple of days and of course, my pain was quite minimal. So then, I started to think that maybe I don't need surgery after all. We went downtown San Francisco and walked around an art gallery and I was toast and in a lot of pain. I am micromanaging everything and really feel down about what to do. I feel like I'm in a rut.
Thanks for caring. Susan

susancook
01-03-2013, 12:53 PM
I thought you said you had neck surgery where a nerve was accidentally injured??? Maybe I'm confusing you with someone else. Anyway, post-op pain is always managed no matter what surgery you have. If the medications don't cut it, then they find something else. I've never had back surgery, but had other surgeries. The pain meds don't always get rid of the pain entirely, but enough so that you can rest and recover and get around as your body allows. I would discuss this concern with your doctor.

Yep, it was you. You said:
"I had neck surgery and the surgeon cut the terminal part of a nerve and I can't more one arm in a certain direction. I would still have the neck surgery again because I needed a diagnosis. I get it, honestly I do. You can let go of this one. Let go.......
Susan"

So how did you fare with recovering from this surgery? It sounds pretty invasive to have cut the nerve. Although soft tissue surgeries (I'm making an assumption that it was) are probably easier to recover from than spine surgeries. Again, I would bring this up with your doctor. I had a surgery and was already on pain meds for my back and was worried about pain control. They just gave me stronger pain meds for a while.

That was a soft tissue surgery. I had some enlarged lymph nodes and they removed them for biopsy. They were all negative and the pain was minimal.

I will talk to my surgeon ( unsure who that will be) and pain management MD about the postoperative pain concern. I just feel so ambivalent, yet in a lot of pain when I try to go outside the house and do anything to be active. My husband planned a trip to Mexico in a few weeks and I wonder how I am going to survive. I wish that I could figure out my ambivalence. I think that some of my problem is having confidence in a surgeon. I am working on that.

Thanks for all of your support. Susan

rohrer01
01-03-2013, 05:14 PM
Have you had a steroid shot recently? If so, did it not work well this time?

I have a friend who needed fusion for degeneration and refused. It came to a point where surgery was no longer an option for her. I'm not trying to scare you, it's just that she was bone on bone, too. Her spine fused itself and then there was nothing that they could do for her. She says she still would NOT have the surgery even though she's in a wheelchair now. It scared her too much. I guess my point is, you have to know what you want and what you are willing to risk. There are risks both ways. Right now you know what you're dealing with and surgery is an unknown. You have to consider how bad your pain really is. If it is really that bad, then could surgery make it worse or could it only get better or stay the same? Just some things to think about.

JenniferG
01-03-2013, 06:40 PM
I didn't experience any pain after surgery for several days because I was given two epidurals which were set before closing. I am unsure if this method of pain control is used in the States, but might be worth asking about. It gave me a chance to at least get over the effects of 8 hours of anaesthetic and I was already up and about before they removed them on Day 3 or 4 (I forget now.) I then went on to oral meds and didn't feel any pain for another day or two, so it was a nice reprieve and I think I was probably over the worst before I experienced any pain. I am totally grateful for that.

susancook
01-03-2013, 06:46 PM
Have you had a steroid shot recently? If so, did it not work well this time?

I have a friend who needed fusion for degeneration and refused. It came to a point where surgery was no longer an option for her. I'm not trying to scare you, it's just that she was bone on bone, too. Her spine fused itself and then there was nothing that they could do for her. She says she still would NOT have the surgery even though she's in a wheelchair now. It scared her too much. I guess my point is, you have to know what you want and what you are willing to risk. There are risks both ways. Right now you know what you're dealing with and surgery is an unknown. You have to consider how bad your pain really is. If it is really that bad, then could surgery make it worse or could it only get better or stay the same? Just some things to think about.

Sobering thought. I wish that I knew why I am hesitant to have surgery. I have a second opinion next week...I expect a lot out of 30 minutes!

I did have a steroid inj about 4 weeks ago. The pain relief only lasted 4days this time where previously it was 2 months. Maybe I needed steroid inj on 2 levels?
Susan

golfnut
01-03-2013, 07:58 PM
Susan,
I had never had any surgery prior to this major surgery and was really worried (terrified) about the post-op pain. It was not nearly as bad as I had imagined. It was well controlled at the hospital and at home. My main pain was from constipation, which took time to get under control. I hope that you find confidence in Dr. Hu. If not, maybe you need a third opinion. Unfortunately, it seems to me, that because of your age and your current level of pain, you don't have the luxury of waiting too long.

Confusedmom
01-03-2013, 11:16 PM
There are many things to think/worry about with this surgery, but post-op pain shouldn't be one of them. You probably will have it well controlled, and if you don't, the doctors will fix it. I actually don't remember any pain until I was home, two weeks after surgery. And that's when I voluntarily started decreasing meds. Oh, except the stomach issues. Karen is right about that being painful. But there are lots of combos to help with that, too.

Cornerthree
01-04-2013, 03:43 AM
These are all excellent comments.

I just want to add that pain is different for everyone. It's subjective; everyone feels and experiences it differently. Some people may need a lot of medication after surgery, others not so much. Not to mention that everyone reacts to different opiates/narcotic pain killers in different ways.

Also, some people like to be prepared for every eventuality surrounding the surgery; it just depends on what type of personality you have. It sounds like you are of the type that indeed likes to be prepared, so perhaps you should consider hiring a private anesthesiologist at the hospital to be in charge of your pain management. Actually, I think you said you had a pain management doctor already. You should consider discussing the fact that you are already on opiates and therefore may be slightly opiate tolerant, and that you are concerned about adequate pain control after the surgery.

I hired the anesthesiologist from my last surgery to also be in charge of all my pain control after the surgery and while I was in hospital. I had already been on opiates for ten years at that point so I, too, was concerned about pain. Having a true expert made all the difference; I had a spinal cathetar with my pain meds and I can honestly say I didn't feel a thing during my entire hospital stay. When I told him this later, he said, "That is our goal; to have you feel no pain." So it is possible to have zero pain after a spinal surgery; at least it was for me. I hope it will be for you, too.
Best of luck to you,

leahdragonfly
01-04-2013, 08:09 AM
Hi,

While I think that the goal of experiencing zero pain after major spinal surgery is admirable, I also think it is extremely unrealistic to expect that. It is inevitable that you will experience some pain, unfortunately. You are not a stranger to pain, however, so you can make it through some pain.

It is much more reasonable to expect your pain to be well-controlled and promptly treated. For instance, one of my best nurses after my second surgery told me her goal was to keep my pain below a 4 during her shift. Too bad I didn't have more like her after my first surgery, where my pain was very poorly controlled and none of the nurses seemed to care much.

Some docs will not allow an epidural (including Dr H) because it carries an increased risk of infection right into your back where the hardware and grafting was done. I was disappointed to learn this, but definitely understood the reasoning!

One of the best things you can do is have a helpful companion or private nurse who will not hesitate to make sure you get all the pain control and comfort measures you need when you need them.

loves to skate
01-04-2013, 10:33 AM
Maybe I needed steroid inj on 2 levels?
Susan

Susan, I asked the pain management Doc about that and was told that since the injection goes right into the spinal fluid, it will reach the other level. So, no, they will not give you two steroid injections at two levels. I am so sorry that the last injection did not work for you. My SI injections did not work for me either.
Sally

jrnyc
01-04-2013, 11:19 AM
spinal fluid...?
i was told my SI joint injections went directly into the SI joints...
was given injection on left and on right sides.

jess

SpineTime
01-04-2013, 02:44 PM
Susan, I asked the pain management Doc about that and was told that since the injection goes right into the spinal fluid, it will reach the other level. So, no, they will not give you two steroid injections at two levels. I am so sorry that the last injection did not work for you. My SI injections did not work for me either.
Sally

I've been given steroid injections at as many as 3 levels at once. I think those were facet joint injections, as they thought that might be where my pain was coming from. So they do give injections at more than 1 level, but maybe it depends on where they think the pain is coming from?

Lisa

susancook
01-04-2013, 03:09 PM
Hi,

While I think that the goal of experiencing zero pain after major spinal surgery is admirable, I also think it is extremely unrealistic to expect that. It is inevitable that you will experience some pain, unfortunately. You are not a stranger to pain, however, so you can make it through some pain.

It is much more reasonable to expect your pain to be well-controlled and promptly treated. For instance, one of my best nurses after my second surgery told me her goal was to keep my pain below a 4 during her shift. Too bad I didn't have more like her after my first surgery, where my pain was very poorly controlled and none of the nurses seemed to care much.

Some docs will not allow an epidural (including Dr H) because it carries an increased risk of infection right into your back where the hardware and grafting was done. I was disappointed to learn this, but definitely understood the reasoning!

One of the best things you can do is have a helpful companion or private nurse who will not hesitate to make sure you get all the pain control and comfort measures you need when you need them.

Thanks Gayle, I plan to have someone stay with me in the hospital. My son, daughter-in-law, and daughter are either a nurse or nurse practitioner. My husband and brother (nuclear/electrical engineer and bartender can help also. Susan

susancook
01-04-2013, 03:15 PM
I've been given steroid injections at as many as 3 levels at once. I think those were facet joint injections, as they thought that might be where my pain was coming from. So they do give injections at more than 1 level, but maybe it depends on where they think the pain is coming from?

Lisa

I have had facet joint inj at multiple levels. They helped a lot. This pain is probably due to a very steno tic L4 right. This was my 3rd steroid inj there. The other 2 lasted one month and 2months....and then just 4 days. Susan

susancook
01-04-2013, 03:19 PM
Thanks to everyone who has been quite reassuring. I really appreciate your input and now figure that it will work out. Someone said that I am trying to get lots of info and my ducks in line to control the situation. So true, so true. Trying to have control over a situation that is currently seemingly out of control.
Susan

SpineTime
01-04-2013, 03:53 PM
I have had facet joint inj at multiple levels. They helped a lot. This pain is probably due to a very steno tic L4 right. This was my 3rd steroid inj there. The other 2 lasted one month and 2months....and then just 4 days. Susan

The thing that was surprising to me was how difficult it can be for the doctor to find out where the pain is coming from so they can treat it with the injections or nerve ablation or whatever. I didn't think it would be that hard.

I wish you well in making your decision about surgery. I've gone back and forth so much about the idea of surgery that it's made my head spin. I can relate to so many of the things you've talked about, except you've said you're normally very decisive. I'm not, and the more important the decision, the more I can see both sides and have an even harder time deciding. I've often wondered, what was it that made someone finally decide on surgery, actually have the courage to schedule a date... and go through with it? Was it any one thing, like the pain level, or (more likely, I'm guessing) a combination of things?

Lisa

susancook
01-04-2013, 04:47 PM
The thing that was surprising to me was how difficult it can be for the doctor to find out where the pain is coming from so they can treat it with the injections or nerve ablation or whatever. I didn't think it would be that hard.

I wish you well in making your decision about surgery. I've gone back and forth so much about the idea of surgery that it's made my head spin. I can relate to so many of the things you've talked about, except you've said you're normally very decisive. I'm not, and the more important the decision, the more I can see both sides and have an even harder time deciding. I've often wondered, what was it that made someone finally decide on surgery, actually have the courage to schedule a date... and go through with it? Was it any one thing, like the pain level, or (more likely, I'm guessing) a combination of things?

Lisa

There was a thread that either Terrik started that asked that very question. It is called The big question- when do you know it is time? On 9-25-2012. Sorry that I don't know how to cut and paste this one.
Susan

loves to skate
01-05-2013, 10:40 AM
spinal fluid...?
i was told my SI joint injections went directly into the SI joints...
was given injection on left and on right sides.

jess

Jess, I should have clarified myself. Epidural steroid injections go into the spinal canal while SI injections and facet injections go into the joints, so yes, you can get more that one injection at a time into separate joints.
Sally

hasteffen
01-07-2013, 06:23 PM
Don't fret about post op pain. There are several drugs out there. I will say that I apparently was one of the few that's pain was not controlable after surgery. I will say now that I do not remember hardly anything after my surgery and 3 weeks after. My sister kept a journal and has filled me in about things... So, even if the pain meds don't work I am guessing that you will be on so many that you wont remember... like me. My sister said I was like the Princess and the pea story. I would cry if there was a slight wrinkle in my sheets or pillow. She said I cried myself to sleep often. Point is, I a made it and I am doing great now! I have been off all narcotics since 4 weeks post op!

Irina
01-07-2013, 06:55 PM
Don't fret about post op pain. There are several drugs out there. I will say that I apparently was one of the few that's pain was not controlable after surgery. I will say now that I do not remember hardly anything after my surgery and 3 weeks after. My sister kept a journal and has filled me in about things... So, even if the pain meds don't work I am guessing that you will be on so many that you wont remember... like me. My sister said I was like the Princess and the pea story. I would cry if there was a slight wrinkle in my sheets or pillow. She said I cried myself to sleep often. Point is, I a made it and I am doing great now! I have been off all narcotics since 4 weeks post op!

Hi Heidi,

I am glad to hear that you're doing well and being off narcotis at 4 weeks is wonderful! Can you tell us what things can you do at this point - driving, going out to a restaurant, cooking etc? Thanks!

hasteffen
01-08-2013, 09:02 PM
I have been driving since 9 weeks post op ( I believe) I think I could have done it sooner but I had help here and I didn't need to. My first trip out of the house somewhere around 4 weeks post op was to buy a new chair at Lazy Boy. After that I could do short trips, if it wasn't crowded or far from home. At Christmas we made a trip to Target and had to leave because it was too busy and I was afraid someone would hurt me. I drove my sister to the airport on December 16th... it was over an hour in the car and was just fine. (That was 10 weeks post op)I do have a memory foam pillow in the drivers seat of my car as well. I think it helps so I will continue to use it
BUT now I am a few days over 3 moths post op and I can do everything... just differently and more carefully. I had my car serviced today and waited an hour...no pain, even after sitting in those chairs. I had a pedicure two weeks ago... I did bring a pillow but it was relaxing and enjoyable!
I have gone out to eat with my husband quite a few times. I went to Belks and bought new swimwear for our trip to Hawaii in July. I remembered to bring my dressing stick but that didnt help me when I dropped my cell phone! I just asked a passerby if they would pick it up explaining that I had back surgery... and everytime I am in this predictament strangers have been so kind. Just yesterday I needed to get gas in the minivan and pulled in and realized I had no one with me to reach down and pull the lever to open my gas tank... so I walked over to the man at the next pump and explained and he helped me. I can walk endless amounts now... and stand for longer periods. Seems like Target or Walmart or grocery stores are harder or tire me faster but a regular trip is no problem. I can cook... peel apples and potatoes no problem.
I am doing great but it is not EASY. Everything takes so much more time. Although I am happy to report that I can now shower and dress in under 30 minutes. It used to take over 90 minutes. GEEZ!
Other things I can't do: i reach the bottom 2 shelves at the grocery store... so I have to bring someone with me.
I can do laundry using my grabber but it is a painstakingly long progress and very frustrating so I gladly let someone else do that!
bending down to get tupperware out of my cabinet to put leftovers away... I can squat and do it but if someone is around I ask them to get it (don't know if I am really supposed to squat so I do it ever so carefully)
Scooping the cat box is not doable yet or getting the dog water. I have tried several times with my grabber and it makes a bigger mess. I have not tried to lift anything heavier then a gallon of milk.
I can pretty much do anything that I want to taking into consideration precautions.
Oh, and not to be too personal but sex is difficult. Can't go on top or bottom...spooning seems to work best for us right now. Will retry every couple of weeks to see if that gets better....
Anyhow, now that I am totally blushing, I am off to bed!
Best, Heidi

I have my 4 year old stand on a chair or table to help him get dressed or wipe after the bathroom

Confusedmom
01-08-2013, 10:03 PM
Heidi,

I bought a long-handled cat scoop for the litter box, which works great. You can Google it or search here. I posted about it. I also bought long-handled water/food dishes.

Hawaii will be fabulous! Especially with your new, straight back to show off!

Evelyn

susancook
01-09-2013, 12:24 AM
I have been driving since 9 weeks post op ( I believe) I think I could have done it sooner but I had help here and I didn't need to. My first trip out of the house somewhere around 4 weeks post op was to buy a new chair at Lazy Boy. After that I could do short trips, if it wasn't crowded or far from home. At Christmas we made a trip to Target and had to leave because it was too busy and I was afraid someone would hurt me. I drove my sister to the airport on December 16th... it was over an hour in the car and was just fine. (That was 10 weeks post op)I do have a memory foam pillow in the drivers seat of my car as well. I think it helps so I will continue to use it
BUT now I am a few days over 3 moths post op and I can do everything... just differently and more carefully. I had my car serviced today and waited an hour...no pain, even after sitting in those chairs. I had a pedicure two weeks ago... I did bring a pillow but it was relaxing and enjoyable!
I have gone out to eat with my husband quite a few times. I went to Belks and bought new swimwear for our trip to Hawaii in July. I remembered to bring my dressing stick but that didnt help me when I dropped my cell phone! I just asked a passerby if they would pick it up explaining that I had back surgery... and everytime I am in this predictament strangers have been so kind. Just yesterday I needed to get gas in the minivan and pulled in and realized I had no one with me to reach down and pull the lever to open my gas tank... so I walked over to the man at the next pump and explained and he helped me. I can walk endless amounts now... and stand for longer periods. Seems like Target or Walmart or grocery stores are harder or tire me faster but a regular trip is no problem. I can cook... peel apples and potatoes no problem.
I am doing great but it is not EASY. Everything takes so much more time. Although I am happy to report that I can now shower and dress in under 30 minutes. It used to take over 90 minutes. GEEZ!
Other things I can't do: i reach the bottom 2 shelves at the grocery store... so I have to bring someone with me.
I can do laundry using my grabber but it is a painstakingly long progress and very frustrating so I gladly let someone else do that!
bending down to get tupperware out of my cabinet to put leftovers away... I can squat and do it but if someone is around I ask them to get it (don't know if I am really supposed to squat so I do it ever so carefully)
Scooping the cat box is not doable yet or getting the dog water. I have tried several times with my grabber and it makes a bigger mess. I have not tried to lift anything heavier then a gallon of milk.
I can pretty much do anything that I want to taking into consideration precautions.
Oh, and not to be too personal but sex is difficult. Can't go on top or bottom...spooning seems to work best for us right now. Will retry every couple of weeks to see if that gets better....
Anyhow, now that I am totally blushing, I am off to bed!
Best, Heidi

I have my 4 year old stand on a chair or table to help him get dressed or wipe after the bathroom

So much great info! Thanks! Re: Sex....thanks for your thoughts/experience/frustrations. There is a thread caled Intimacy that had some suggestions. Dr. Hu's recommendations is to wait "6 weeks, dependent [does that mean on the bottom?], missionary or side lying. No hip flexion greater than 90 degrees". I also am having problems figuring the mechanics of it.
Susan

Irina
01-09-2013, 12:38 AM
Heidi,

Thank you so much for sharing all the things you can do and those that are still difficult :-) I was worried about that too, but guess this is one of the things we have to deal with and hope it will get better with time. I have an idea on how to lift a gas lever in your car - can you use a dressing stick? The hook should be small enough to lift the lever. I already bought a dressing stick and tried pulling a lever in my car using it and it works.

You must have felt so happy and liberated purchasing new swimsuit! What island are you going to? I didn't even go swimming in a long time because I am embarrassed to show everyone my twisted back, but I really love to swim. I hope to be able to do it soon too :-)

hasteffen
01-09-2013, 06:34 AM
Irena-
We are going to the new Disney resort on Ohau and then to the big island. I just purchsed a collapsable dressing stick to add to my gym bag.... I bet it will work to open the gas tank as well.
Evelyn- I am on it! I will purchase both items today.
Thanks!
Heidi

hasteffen
01-09-2013, 03:22 PM
Hey susan! I also meant to say that I too, prepared like crazy prior to my surgery. It included meal prep,buying cards in advance, child care, care for me, who was going to help with my medical care here in town, house cleaning, laundry cleaning, and probably anything else you can come up with. I also planned who would man my facebook page, update my family and church. I read up on people's stories and of course devoured all the information I could find on the internet. I will say it did help me endure the wait. Many say the waiting was the worst part... I don't agree with that BUT it was hard. I think knowledge is power. For me, after the surgery was hardest and very painful... even with all the pain meds. Trust me I was on some heavy stuff. With that being said, I made it and have been off all narcotics since four weeks post op. This surgery is not only hard physically but mentally and emotionally as well. I am almost at the point where I can say that I am glad I went through it and I am a stronger, better person because of it. I made it through not only because of a good surgeon but by God's strength within me! I do not know if I could knowingly make the decision to go through this surgery knowing what I went through. I thought I was prepared and knew what to expect. In a way I think one can never quite prepare for it. I think you just have to make the decision, prepare what you can (all the above plus eating and exercising), pray, and trust in your surgeon.
Best,
Heidi

Irina
01-09-2013, 03:35 PM
Hey susan! I also meant to say that I too, prepared like crazy prior to my surgery. It included meal prep,buying cards in advance, child care, care for me, who was going to help with my medical care here in town, house cleaning, laundry cleaning, and probably anything else you can come up with. I also planned who would man my facebook page, update my family and church. I read up on people's stories and of course devoured all the information I could find on the internet. I will say it did help me endure the wait. Many say the waiting was the worst part... I don't agree with that BUT it was hard. I think knowledge is power. For me, after the surgery was hardest and very painful... even with all the pain meds. Trust me I was on some heavy stuff. With that being said, I made it and have been off all narcotics since four weeks post op. This surgery is not only hard physically but mentally and emotionally as well. I am almost at the point where I can say that I am glad I went through it and I am a stronger, better person because of it. I made it through not only because of a good surgeon but by God's strength within me! I do not know if I could knowingly make the decision to go through this surgery knowing what I went through. I thought I was prepared and knew what to expect. In a way I think one can never quite prepare for it. I think you just have to make the decision, prepare what you can (all the above plus eating and exercising), pray, and trust in your surgeon.
Best,
Heidi

Hi Heidi,

What were the things that you found yourself not prepared for? I am also planning everything I can under the sun, but I am sure there would be something I overlooked. From your experience, what were those things?

hasteffen
01-09-2013, 05:11 PM
The Pain for one... the loss of my memory. Sometimes it is still hard to recall certain things. For example, about four weeks post op I couldnt remember my neighbors name. I do not think I will ever be able to remember after my surgery to about 3 weeks after. I remember very little of that. The fact that my plan A, B, C didn't work out... but no fear plan D formed and it all worked out. I was not prepared to go through the drug withdrawls. Again, I weaned faster then most... and I am thankful now that it is over with but it was hell in the hallway. I had full blown withdrawls like a crack addict. Sweats, panic attack ( and I am not usually a sufferer of them),chills, crying... terrible is all I can say.
I was not prepared for the frustration of not being able to do things or that things just take 5 times longer then they should. Even though I knew what the precautions I would have, I didnt know the magnitude of how it really would affect me.
I was not prepared for the feelings I felt... I'm going to try to put it into words but I am sure I wont do it justice... It was as if the world continued and my world stopped. It was very hard emotionally for anyone to fill my emotional cup. I think once I got off the drugs, and back to my prayer life, things started getting better for me. I felt like no one really understood me. There are good feeling too, like walking further then you did the day before, realizing it's 11 pm and you're still awake without pain! Realizing how delightful it is to have a waist, and how exhilerating it is to try on new clothes.
I know everyone has different experiences... and this is part of mine.
I also was surprised that I felt like I was back in my boston brace after all this time. Wearing the brace as a child for me was no big deal and I am already used to the feeling... at three months post op it feels like nothing... just me!
Anyway, you all may not experience the same things. I definately had some tough spots but I DID get through them and I am optimistic that I will continue to get better from here.
Best,
Heidi

Irina
01-09-2013, 05:42 PM
Thank you, Heidi, so much! All these things are good to know.

I know I will be frastrated with the things I wont't be able do and loss of control. That would be brutal, but I am preparing myself emotionally for that. On the bright site, it might be a good life lesson for me - to experience loss of control and may be become less rigid with the ways I do and plan things :-) I've never wore a brace, so it's hard to imagine the full extent of loss of flexibility, but if I am trading off flexibility for being able to walk pain-free for more than half-an-hour, I am all for it. I will also talk with my family about drug withhdrawl effects so that they are also prepared.

JuliaAnn
01-09-2013, 06:25 PM
Heidi, you listed some really good ways to prepare.

I wish I had known how much scoliosis surgery would hurt the first month or two. I've had six natural childbirths and only the first one with pain medication. The training I got to face childbirth pain made all the difference. I wish I had known that before my scoliosis surgery, such as knowing that it was normal to have rib pain. Knowing all the various pains were normal and that they were "healing pains" would have made me face them with more courage. I did more research on pain after surgery than I did before.

Like Heidi, I didn't know about withdrawal from pain meds. I had full-blown symptoms too, very very unpleasant, such as severe bone pain in my arms and legs for two days. Dr Hey's office had planned on slowly weaning me off narcotics using other pain medications but it was over Thanksgiving week and I didn't bother to call their office asking for advice. Next time, I'll call the Dr with questions before I make my own decision about medication.

One thing I wish I had done before surgery was buy some comfortable bras. A sports bra would have been excellent, one that had a very soft back, perhaps with a front closure if there is such a thing. After my surgery, I couldn't wear my old bras for two months because they didn't fit right and hurt my sensitive back. At one point, I decided to send my husband to buy a bra for me. I told my husband "Look, just stick out your hands and memorize me. Then walk through the bra department with your hands held out and feel the bras until you find one that fits your hands." I think I was on some strong pain meds at the time I made my request. It sounded perfectly sensible to me! I ended up just wearing layered shirts to hide the fact that I couldn't wear a bra.

susancook
01-09-2013, 07:39 PM
Heidi, you listed some really good ways to prepare.

I wish I had known how much scoliosis surgery would hurt the first month or two. I've had six natural childbirths and only the first one with pain medication. The training I got to face childbirth pain made all the difference. I wish I had known that before my scoliosis surgery, such as knowing that it was normal to have rib pain. Knowing all the various pains were normal and that they were "healing pains" would have made me face them with more courage. I did more research on pain after surgery than I did before.

Like Heidi, I didn't know about withdrawal from pain meds. I had full-blown symptoms too, very very unpleasant, such as severe bone pain in my arms and legs for two days. Dr Hey's office had planned on slowly weaning me off narcotics using other pain medications but it was over Thanksgiving week and I didn't bother to call their office asking for advice. Next time, I'll call the Dr with questions before I make my own decision about medication.

One thing I wish I had done before surgery was buy some comfortable bras. A sports bra would have been excellent, one that had a very soft back, perhaps with a front closure if there is such a thing. After my surgery, I couldn't wear my old bras for two months because they didn't fit right and hurt my sensitive back. At one point, I decided to send my husband to buy a bra for me. I told my husband "Look, just stick out your hands and memorize me. Then walk through the bra department with your hands held out and feel the bras until you find one that fits your hands." I think I was on some strong pain meds at the time I made my request. It sounded perfectly sensible to me! I ended up just wearing layered shirts to hide the fact that I couldn't wear a bra.

First of all, I am glad that you feel better now and sorry that you had to go through all of the withdrawal. Thanks for your comments. I wish that I could have seen your husband fondling bras in the women's section trying to find one in your size! It must have been funny. I remember sending my husband to the store immediately after childbirth for some menstrual pads and describing the exact pad that I wanted in detail, but I couldn't remember the name of the brand that I wanted.

Bras: I wear Bali bras that are really stretchy, no hooks, no seams...just a very little support. I would recommend them. They really stretchy and give you just enough coverage not to look braless. Some people may wear them as sleeping bras, but I have worn them everyday for about 10 years. If anyone wants the style, send me a PM and I will find one and look on the tag.

Re stopping narcotics: Irina...post above this one....don't worry much about this if you stop them very slowly with your doctor's suggestions. There are also meds that you can take temporarily to help with side effects. Postop, I intend to use narcotics at whatever dose they allow me to get out of bed and keep moving and exercising and then very slowly decrease the dose as needed.

Susan

hasteffen
01-09-2013, 07:42 PM
Irena you sound just like me!!! Uhm- I don't notice the "brace" feeling now. I am loving that I definately have less pain then before surgery. Since I am only three months post op I am not 100% healed so I imagine that I will only get better and faster as I recover.
As you may have seen in a different post I still have some right leg weakness and I have to use aids to dress because I can't quite lift my right leg high enough. I am hopeful that this is temporary but even if it's not, it is not so bad to use the dressing stick, shoe horn and the sock aid. It doesn't make me walk funny or anything like that. Right after surgery though I fell several times... no one could figure it out. Well when I got off the narcotics I was able to tell that my leg was weaker and my knee was giving out on me. Thankfully, that has subsided and my knee hasn't given out since I was about 6 weeks post op. I am so thankful that I didn't mess up my back or anything else!

hasteffen
01-09-2013, 07:49 PM
JulieAnn-
I also consider myself to have a high pain tolerance and had my son naturally with no drugs! So, I was surprised that I couldn't handle the pain of this surgery. I expected with drugs that it would not be a problem... but surprise! It was the hardest thing I have been through in my entire life. It felt like a train had hit me. So this is the reason why I say I couldn't put myself through this if I knew... and I would probably be TERRIFIED if I had to go through it again but now that I am through it and feel better I am happy that I did...
Hope that makes sense!
Heidi

titaniumed
01-09-2013, 09:04 PM
The Pain for one... the loss of my memory. Sometimes it is still hard to recall certain things. For example, about four weeks post op I couldnt remember my neighbors name. I do not think I will ever be able to remember after my surgery to about 3 weeks after. I remember very little of that. The fact that my plan A, B, C didn't work out... but no fear plan D formed and it all worked out. I was not prepared to go through the drug withdrawls. Again, I weaned faster then most... and I am thankful now that it is over with but it was hell in the hallway. I had full blown withdrawls like a crack addict. Sweats, panic attack ( and I am not usually a sufferer of them),chills, crying... terrible is all I can say.
I was not prepared for the frustration of not being able to do things or that things just take 5 times longer then they should. Even though I knew what the precautions I would have, I didnt know the magnitude of how it really would affect me.

Heidi

Some good posts here!

Same story here.....I completely lost a week from the ďbombingsĒ.....Its why I didnít want any visitors at that stage but they all told me about it at a later date...I was standing by my bed in ICU with many many hoses hooked up and apparently I was ready to go play poker downtown. My visitors quickly alerted the nursing staff. (smiley face) Never a dull moment.

I donít play poker in casinoís. EVER.....In fact, I donít even go to any casinoís at ALL anymore. Once every 5 years if that and only to eat.

It took me 2 trys to get off meds and was on the bathroom floor for 2 days each attempt, freezing, sweating, freezing,sweating.....with the house at 84 degrees. This was at 6 weeks post, my final tough period. After that it was smoother sailing......you get tired of meds after the bombings, you just do...

Any extensive A/P is going to hurt....I did pass a huge kidney stone before my scoli surgeries which is WAY worse, so I had some preparation.....The IV and injectable Lortab, Morphine, and Dialuid is extremely effective, 3-4 seconds and you are OUT. There is no pain while being out on the heavy stuff, itís the weaning thatís hard when you are not knocked out and you cannot stay knocked out forever.....I was begging for shots..... They came every 4 hours. There is no PCA is you cant work the button.

I was warned, and expected it.....as with any extremely difficult thing you have to do in life, you donít have a choice and have to be mentally prepared. Now that its all in the past, I think back often. I did it.....and with a broken shoulder!

For those that have to do it, you do it, and you get over it......you learn to adapt, you learn patience. It taught me a lot about things......

I can finally relax now, which was something I couldnít do in pain before my surgeries.

and I smile a lot.

Heidi and Julia, you guys must be jumping out of the nest around now.....3 months is a good time but it will get SO much better every day from now on. I want to hear when you guys finally are out of pain. Iím talking about a zero pain level....You guys are not going to believe it and makes surgery so worth while.

Ed

hasteffen
01-09-2013, 09:32 PM
Ed. I am feeling great... at least much better then a couple of months ago! HAHAHA
Funny story.
Apparently, I told the physical therapist in the hospital about the time I brought wine coolers to school and drank them during cooking class.
My sister later asked me if it was true and I was like how did you know that? It is a true story... but why did I feel the need to tell the therapist that!?!?! Also, I am told that I referred to my husband as my ex husband... thankfully, my husband wasn't in the room to get offended!
I can't imagine what it will be like to be pain free- I am already marveling at the "significant reduction" in my pain now!
Best,
Heidi

Irina
01-09-2013, 11:14 PM
Heidi and JulieAnn,

You made me laugh so hard with these bras and ex-husband stories!

Confusedmom
01-10-2013, 12:05 AM
Irina,

I was prepared for all the early stuff--first three months or so. I was not prepared for it to go on and on and on! I think recovery is mentally and emotionally challenging because you are constantly asking yourself--when am I going to get better? Will I ever feel normal? And some days you have a good day and are like, hey, yah, I've got this! And then the next day you have a bad day and think you'll be like that the rest of your life. It's just a bit of a roller coaster.

Also, I was not actually prepared for the possibility of never being completely pain-free. I don't know how anyone can be prepared for that. But it is a real risk. The surgeons will tell you many people (40%???) have at least some pain after surgery on an ongoing basis. I thought I was prepared for that possibility, but I wasn't. Even though my pain is mild at this point (often nonexistent), it's emotionally frustrating.

Also, I was not prepared for the feeling that I have a minor disability. That feeling may go away in time, but it has been difficult to feel that way even 9-10 months. Example: going on a ladies' weekend with my girlfriends, I had to have them carry my luggage. Made me feel weird at age 40.

On the flip side, probably one of the best things about it has been the freedom of knowing this surgery is BEHIND me, and it's (God willing) all uphill from here! I hated that dread pre-op of not knowing if/when I would have to do this and how I would get through it. Now I've got a nice, straight back and am focused every day on getting stronger!

Evelyn

susancook
01-10-2013, 02:06 AM
What all of you have so graciously and honestly shared brings reality to the decision to have surgery. It is especially relevant to me right now as I will be confirming my date tomorrow morning when the scheduler calls me. There are no guarantees...how I want guarantees. ... on second thought, I can still cancel the surgery tomorrow morning, just thinkin'.....

ED: You always make the situation seem funny and I really appreciate your humor. I'll be looking for you at the poker tables on Reno next time we go down there!

Evelyn, sorry that your pain drags on. I hope that it improves with time.

Heidi: Funny story, I have had a wonderful and sometimes wild life. Hope that I don't share any of my wild stories from the 1960's!

Again, everyone, thanks for a reality check on pain and pain meds.

Susan

yacpatty
01-10-2013, 06:38 AM
Susan,

I was 13 when I was fused T4-L2. I remember that the pain was tolerable and minimal. My parents had to beg me to even take a shot for pain. I just had L4-L5 done Dec 11 and in 3 days I didnt even feel I had surgery. The only time it hurt was when i had to roll in the bed. I am no hero when it comes to pain. I don't have a high threshhold but you might be surprised that the pain is no where near the pain you have built up in your mind. Yes, you will have pain...ask the thoracic to sacrum sisters who had that surgery....I just feel you are going to be pleasantly surprised at how you will be able to manage the pain.

Patty

golfnut
01-10-2013, 08:09 AM
What great posts on this thread! Heidi, I loved the wine story! Susan, you can do it!

Irina
01-10-2013, 11:38 AM
What all of you have so graciously and honestly shared brings reality to the decision to have surgery. It is especially relevant to me right now as I will be confirming my date tomorrow morning when the scheduler calls me. There are no guarantees...how I want guarantees. ... on second thought, I can still cancel the surgery tomorrow morning, just thinkin'.....



Susan,

When I spoke with Dr. Hu patients they reported different pain levels post-op. One woman in her 40s said she discontinued narcotics a few days after she got home. She had pain, but not that bad to warrant narcotics use. Another woman in her 60s was on narcotics for 5 weeks and I can't recall what 2 others said, I think a few months, but not sure. It's good to prepare for the worst and hope for the best.

susancook
01-11-2013, 11:39 PM
Thanks again. I reread this thread and think that this is another area that I just need to let go of. So-o-o-o-o-o-o-o, how do you let go? Susan

susancook
01-11-2013, 11:40 PM
What great posts on this thread! Heidi, I loved the wine story! Susan, you can do it!

Karen, There is no doubt in my mind that I will "do it". But, it might not be pretty.... Susan