Post surgery questions

[beach girl]

My husband had surgery four weeks ago. He was fused from T4 to L4. We traveled all the way from California to St. Louis to have this surgery with Dr. Lenke. Needless to say, the journey back (at 3 weeks) was a real trip!
Everything seems to have gone really well from the point of view of smooth surgery, great-looking Xray and the wound healing beautifully. The pain has been very difficult, but that was expected.

My biggest worry at this point is that my husband has no appetite whatsoever and does not want to eat. He is very thin as it is, and now is obviously losing more as he isn't able to take in the calories required to build up some weight. Thank goodness he is able to drink Ensure, but I really don't think it's enough at this stage, and he doesn't seem to be making the progress I would expect with a gradual return of appetite. I am sure this is really slowing his body's ability to heal, so I keep pushing the food and trying all different kinds of things which are as mild and plain as possible. I'm trying to be patient and not to push too much, as that probably creates resistance, but I don't really know what to do!
Has anyone had experience with this, and if so, any suggestions??

Another question is: he is using a cane to walk now, and could this cause any problem with unequal distribution of weight, or is it okay?

Lastly, has anyone tried acupuncture for post-surgery pain control, and would this be considered safe at all? I believe acu-pressure would not be okay until much more healing has occurred. Is that correct? I am sure the pain meds are contributing to his lack of appetite, but he can't manage without them.

I'd REALLY appreciate any advice/feedback or sharing of experiences on these topics! It's really hard to watch your loved one suffering and not appear to be
flourishing as one would hope.

Thank you!

[monie]

Hey beach girl, congratulations to your husband for having a successful surgery... I think that him travelling that distance at three weeks, was extremely brave of him... thank goodness he had you to help him through it...

Regarding his appetite, I think you should talk to his doctor about that, and see what he says... I also wanted to mention that after my surgery, I too had next to no appetite... my mom was at her wits end. I found out that it had to do with the large number/amount of pain pills I was taking... they really affected my eating habits.. maybe that's it? Sorry I couldn't help more, but I thought I'd mention that to you... Good luck with everything!

Monie

[tessa]

Hi.

I was the same way after surgery, food wise. Because of the pills is probably one of the main reasons.

What I did to fix it was to not eat anything that I didnt feel like eating, and eat not when your hungry(as you dont feel hungry ever) but when for like the 15 minutes of the day you are the least nauseas . Sounds wierd but foods like fruits make it harder to eat as with the pills your stomach just gets worse. eat what you crave even if it is ice cream for breakfast and pancakes for dessert.

Milk or milk products work for some. and freezees are great for settleing the stomac.

also small portion amounts are better as eating a lot will just make you not feel like eating, like it isn't worth the pain.

for me it was chinease food and light soups. and a hot water bottle against my stomac (not when eating, but like at night when taking the pills). And dont take the pills with juice, they aften dont mix well.

I hope that helps some, I am not very coherant when writing sometimes.

[beach girl]

Thanks a lot, Monie. It helps to know that one is not alone. Thanks for the encouragement. I think I will write to the doctor but I think it is partly the pain medication, as you said. Sounds like you have made great progress - I enjoyed reading your Blog. Best of luck for everything to get better and better for you! I love your honest and positive attitude.

Beach Girl

[Jacque's Mom]

Beach Girl - if you go to search on the top of this screen and type in "appetite" you will see your husband is not alone. I had absolutely no appetite and lost a great deal of weight. It will return, but the medicine certainly has a lot to do with it. The Ensure does help as it is high in calories and nutrients. Hang in there, both of you. Take care, LYNN

[Mary Lou]

Your husband's lack of appetite is probably completely normal. So, here's my two cents worth. My daughter had the same problem following her surgery last year and she is so small that she couldn't afford to lose any weight. What I figured out was that due to the lack of activity, they don't really get that hungry. The iron pills and pain pills don't help when it comes to being hungry. Jamie would sometimes tell me in the beginning that the pills filled her up! Try not to worry. His appetite will return and if he is like Jamie, he'll eat you out of house and home eventually. For Jamie, the more active she became, the better her appetite became. Hang in there. Tell you husband to keep up the good work. It sounds like he is doing very well for just a few weeks post-op.

Mary Lou

[marmyte]

ok several things here...about food, someone else said it already and i think you just have to eat what you feel like eating. hang what your dentist might say at this point. good things are not necessarily plain, but easy to eat: start with something like soup or milkshakes (or similar) as these are more like drinking so it doesn't feel so torturous (i swear it was similar to having an eating disorder after surgery) and then build up to other things like pasta. for somebody with a personality like mine (i'm quite driven and ambitious), it's good for your self esteem to know you've cleared your plate, so once your husband feels capable of eating "proper" food again, perhaps give him small portions so if he eats it all, he feels like he's achieved something :)

was the cane recommended by his surgeon? if not, i think i'd be concerned due to this becoming something you rely on, and which can cause your posture to contradict what has been achieved through surgery (if that makes sense, they can cause you to hunch over basically)

acupuncture - i'm not sure about this. my main concerns would be, don't have him lie on his front to have it (this is a big no-go until your surgeon says he can lie on his stomach again) and is there a potential for infection due to penetration of tissue? i don't know much about acupuncture, but i'd say if there was a risk of new wounds being created and causing the body to be more open to infection, don't do it (i'm not worried about needles being sterile, i'm sure that's not an issue)

i can appreciate how hard this must be for you but you sound like you're doing a great job, hang in there and hopefully each day you'll see a gradual improvement

[sweetness514]

About acupuncture...I would not get treatements for at least 3 months, or even later when the healing is more done. It helped me for other pains that were caused by surgery, like neck and arm nerve pains and even to heal more around the scar. Needles are usually thrown away, but I don't know if all acupuncture specialists do that so be SURE to ask, it's best instead of sterilized ones.

About the weight and appetite, mine came back earlier and I gained weight :p But the iron pills and pain pills do take it away and I think once he takes less pills he will get more hungry. All the foods that other people have mentioned are good(like soups and ice cream, jello, etc). Taking a daily walk can help too. Make sure he still takes either iron or vitamins if he's not eating a lot.

[monie]

I just thought of this, so I figured I'd post it... Beach girl, I forgot to mention that my apetite has since returned... I'm eating like a cow now... I'm not sure why, as I never was a big eater even before the surgery, but I've been eating a heck of a lot lately... really... Maybe my body is trying to regain some of the weight I lost? You know, I went shopping for work clothes yesterday, and instead of fitting in size 6 pants, I had to get size 4... even then, the waist was still too big...

Don't worry too much... His apetite will return, I'm sure of it... just make sure you eat, and keep your strength up. It's easy to forget to take care of yourself when you're taking care of someone else....

It gets better soon... everything does. :)

[Karen Ocker]

I went through that.
Is there any way he could see a pain specialist in your area? I found regular doctors and even surgeons do not correctly manage this type of pain. This actually retards healing and promotes complications-especially in adults. With proper pain management a person is able to move around more, eat properly and heal. Also a terrible depression ensues when opiods are reduced because the brain gets used to them. I ended up with that plus no appetite at all,crying spells and hot and cold sweats. That's because I tried to do it on my own. My pain doctor helped me with alternative meds and was a real Godsend. I needed a short term antidepressent for this and then I ate like crazy! I was not allowed to use stuff like Aleve, or Motrin for awhile because it might interfere with fusion. The primary doctor has no clue about this.

Pain specialists are usually covered by insurance. They are often anesthesiologists.
Karen

[chrisfrie]

Hello,
I agree with most because I did not have an appetite for a long time. AFter surgery I weighed 95lbs. I ate jello and soups and did a breakfast drink. 5 months later I reached 101lbs. My appetite is much better but I have always had a problem putting weight back on. I am taking mostly advil instead of the heavy pain pills. I used a cane for the first week or so. It is much better than getting dependent on a walker. I also started walking as soon as I got home. At first only to the sidewalk in front of the house then the corner then one block. Now I walk 4-5miles per day broken up into 2 session. I tried accupuncture at 4 months and it set me back both energy wise and pain wise. I did find the chinese herbs very helpful and still use them. It is just a slow recovery and I agree you have to eat even when the desire is not there because his energy will come back faster. He is a real trooper for taking such a long trip and he could not have done it without you. I wish you both the best and remember the care taker needs support too!
Good Luck!
Chrisfrie

[zerodegrees]

i am 5 weeks post op having been fused from t3-l3. My appetite is only now slowly returning. I have only been eating simple foods which require little or no effort to eat. Lots of soups etc & soft things like pasta & rice based dishes. Strangely I have eaten things that I haven't eaten for years. My doctor says it is the medication mainly. (I am taking 40 tablets a day!).

Try not to worry.

[beach girl]

Thanks so much to everyone for responding to my concerns about my husband's lack of appetite and other post-surgery questions. You all helped so much, and i appreciated your encouraging suggestions! It certainly seems from what everyone says that the pain meds are mainly responsible, but right now my husband can't do without them. We did get what I thought was a great suggestion from his "primary care" doc, though, when she saw him a few days ago, (5 weeks post-op). She said we should use one of those high-protein weight-on shakes which you buy at health/sports stores. I wish I had thought of that! I got this real power stuff, which gives 900cals in one full dose shake in 2 glasses of milk. I was so excited, except that it turned out that a whole portion was much too rich for my husband to take. Anyway, he's now having a 1/4 portion 2x a day, so I have to be satisfied with that for now. Any amount must be helpful.

The main thing that is really needed I guess, more than anything is PATIENCE!! It's hard to guage your progress when it seems so slow, and sometimes comparing yourself to others is not helpful, as everyone's situation and healing is so individual.

So, I just want to wish all of you courage and patience in your recovery, and thanks again for the great feedback!

[marmyte]

you're right, you can't compare your own progress to someone else, you just have to remember what it was like yesterday and last week and the week before that and know how far you've come. my parents made my sister keep a chart of how long i spent in and out of bed each day and she made graphs using a spreadsheet on her laptop (it all got a little hardcore for my liking) but it gave me raw data to take in and show me how far i'd come :) i'm not suggesting doing that yourselves, i think it's a little overboard, but you're right that you have to maintain some perspective. it'll get better eventually, sounds like you're doing a great job

[sweetness514]

I agree about that, you can't compare. I know that everybody here means well when they post about how good they're doing, it's exciting for anybody to feel better, and you want to share. But we all have to keep in mind that we are all different when it comes to MANY health problems. I often hear some people say IRL things like "well I had back surgery for this or that and I feel better, why don't you?", or people who have MS who have great periods or remission and others who are in a wheel chair, how can we compare?

I've just met a young woman who had scoliosis surgery years ago and in her case, she couldn't keep the hardware. Just as an example.

One thing we have to remember is that when a person asks about how long the recuperation will be before they get surgery, that our situation can't come into play. If I would have read some of the posts when I had surgery 8 years ago, I would have beat myself up sometimes, because I was only 26 and it took me at least 4 to 5 months to have good days. I was anemic, an insomniac and my bone structure is very small. I pushed myself to the limit everyday, and did all the exercises I COULD. My body needed to heal, and sleep that was rare was what it craved the most.

Sorry to ramble but I wanted to share my thoughts on the subject.

Beachgirl, I hope you're husband gets stronger and don't give up, you're a great wife :)

[beach girl]

Far from rambling, I really do appreciate your thoughtful response, and what you said helped. I think my husband was feeling very discouraged seeing so many people talk about 3 weeks as being the "magic number" when everything turned around, and it hasn't for him. He also has great trouble sleeping, so we can really relate to your problem. This has been an issue for so long that our kids started to describe him as "nocturnal". I sure hope you are sleeping better now, and doing fine after all this time.

It really helps to have your marker of 4-5 months - that is pretty much what our primary care doctor said. That can be depressing, because one hopes that there'll sort of be a linear progression, but I guess it must take about four months for the fusion and the muscle-healing to reach a certain point before one starts to really feel better. I just think it's truly amazing that there is so little interest, education and follow-up on the part of most of the surgeons once a patient leaves the hospital. My dad was an orthopaedic surgeon and he followed up and cared for his patients for months post-surgery. But that was a different time, and a different country. Medicine just isn't practiced like that anymore, or at least not in the U.S. I'm still most worried about the nutrition but it does help to know that some of you survived similar problems!

[sweetness514]

Hey, no problem. I think that's what this forum is about, helping each other, and sometimes mentioning little details that can help.

He will progressively get better, I did. The first two months were very hard, but even so, there was a progression. I was doing well for about 6 years, as far as my fusion goes, but it took me about a year and then I had a hook taken out so after that, with exercises and some rest, it got better and better. Now I have to get revision surgery in about two weeks(just for the holidays :rolleyes: ), but it's for a broken rod. You're right about doctors and after care, it's not the same, here in Canda I'm sure it's worse, as our healthcare is free. My ortho told me that I would be all healed after three months, and that only discouraged me. Thankfully, even if I didn't have the internet back then, I got in contact with another lady who had surgery like me, and she explained ALL her pains, what she did to ease them and her progression, wich resembled mine a lot and helped me, pretty much saved me I could say. I also have seen other othos so that I could get as much info and help about all I could do to ease my pains, and my recovery. Even other types of medicine experts helped(like acupuncure).

But right now all your hubby mainly needs is rest, nourishment and time, andf if he's up to it some light exercises, like walks or going to the pool.

[chrisfrie]

Tessa,
My system is delicate too. I actually lost weight on some of the weight gain supplements because they were too rich and I got diarreha. I found combining a soy supplement with a green vegatable powdered drink from the health food co op was a success. So, I agree when you find something that works stick to it because each body is so different. I am still drinking this drink in the mornings because I just don't have a morning appetitie still. I then eat two small meals later in the day. I must say at the 6 month mark I am back at work and needing pain meds occaisionally. I am working 10 hour days too! Part of my occupation and a my personality. My breathing has improved 10% and my heart-lung ratio has improved. So please know it is true that there is the experience of feeling it was worth it. A month or two out I was really questioning everything about it. It is normal to feel depressed at times and to be grouchy.
Take Care,
Christine

[crookedspine]

I am about six weeks post-op. I was fused from T11 to L5, posterior and anterior. I don't have a real problem with appetite, although I am not eating near as much as I used to. I eat smaller portions and do not snack, but at least I can eat. I did have about 4-5 days when I could not eat due to nausea, but that was medication. Living with pain all of my life from the scoliosis, I was able to kick the pain meds for the most part. I just take one now and then. My biggest problem is aches rather than pains. These aches (deep ones) don't usually come about until I lie down at night. I have a problem sleeping, too. Any suggestions anyone? I am glad someone posted that not everyone is the same with healing, because I am trying to compare with everyone else.

I think it is wonderful that you are so concerned about your husband. My husband is also a wonderful caretaker. He does not like it when I am depressed, weeping, sad or cannot sleep. Keep up the good work and, as was said before, TAKE CARE OF YOURSELF!!

[JoAnn5]

Something simple and over-the-counter like Tylenol PM works well for me. Also i had to start watching the amount of caffeine i drank after noon. I had become addicted to sodas. Since i didn't have any appetite, i sipped on sodas a lot, and it caused me to have very restless nights... Switched to milk or water and it helped too. Take care of yourself, you've done very very well!!!

[Shari]

I had my 2 surgeries 5/18 and 5/24/05. I went from 130lbs to 90lbs in 3 months. When you are in that much pain, who wants to eat. All I wanted was my next pill. I forced myself to eat, but not a lot even tasted good to me. My family and friends were very worried about my weight loss, and it even scared me a little. But once the pain eased up, my appetite started coming back slowly. I have gained back 15lbs. And my husbands says "If my eyes are open, I'm eating". So keep up the good work. I know what you are going through. I know it's as hard on you as it is on him, only in different ways. If you would ever like to chat with someone that has gone through the surgery, my email address is kpsmr@aol.com. Since I am still homebound, I would welcome your correspondence.
S-Curve Shari

[dmb]

My husband had surgery four weeks ago. He was fused from T4 to L4. We traveled all the way from California to St. Louis to have this surgery with Dr. Lenke. Needless to say, the journey back (at 3 weeks) was a real trip!
Everything seems to have gone really well from the point of view of smooth surgery, great-looking Xray and the wound healing beautifully. The pain has been very difficult, but that was expected.

My biggest worry at this point is that my husband has no appetite whatsoever and does not want to eat. He is very thin as it is, and now is obviously losing more as he isn't able to take in the calories required to build up some weight. Thank goodness he is able to drink Ensure, but I really don't think it's enough at this stage, and he doesn't seem to be making the progress I would expect with a gradual return of appetite. I am sure this is really slowing his body's ability to heal, so I keep pushing the food and trying all different kinds of things which are as mild and plain as possible. I'm trying to be patient and not to push too much, as that probably creates resistance, but I don't really know what to do!
Has anyone had experience with this, and if so, any suggestions??

Another question is: he is using a cane to walk now, and could this cause any problem with unequal distribution of weight, or is it okay?

Lastly, has anyone tried acupuncture for post-surgery pain control, and would this be considered safe at all? I believe acu-pressure would not be okay until much more healing has occurred. Is that correct? I am sure the pain meds are contributing to his lack of appetite, but he can't manage without them.

I'd REALLY appreciate any advice/feedback or sharing of experiences on these topics! It's really hard to watch your loved one suffering and not appear to be
flourishing as one would hope.

Thank you!


Beach girl,

My appetite after surgery was very low. I also drank ensure, i'd chill it and then drink it, it seemed to taste better. I'd also eat things like applesauce and puddings. When i went into the hospital i weighed 128lbs and when i got home i weighed 109lbs. The pain meds takes their toll on the body as well. It will come around. But as always, contact your surgeon with ANY regards. that is what they are there for! Good luck and keep the faith.

dmb

[Karen Ocker]

It's way too early for an adult to feel good after scoliosis surgery-it's a world of difference with teens. The adult body needs time to become uncoiled. I had a pain doctor and avoided a lot of trouble;also went to a rehab hosp for 2 weeks-covered by insurance. I personally believe this is mandatory for adults.
As an RN I would not take that on myself with MY spouse. If you can get a pain doctor for about 3 months it would help a lot. The medications can be fine-tuned so that he could move around more without pain. GPs do not have the expertise to do this. Also the tapering off too fast can cause withdrawal. Also, pain doctor's incorporate alternatives a GP never heard of like an ALPHA-STIM nerve stimulator, local anesthetic patches over the incision. Ice bags are wonderful on the thoracoplasty areas.

I got a post-op manual from my surgeon's office which helped a lot. I could also e-mail his staff with questions.

I have a post on this forum with a list of what worked for me.
Karen