Post surgery questions

[beach girl]

Thanks Sweetness

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 ), 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]

Hi Beach Girl

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]

beach girl's husband

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