Just had surgury

[Mistina]

Hi Theresa,
I am looking at revision sometime here with an original fusion from !t to L1 and probably needing to be fused to the sacrum.
What was the date of your surgery and who was your surgeon?
I'm really terrified of all this, especially since when I had my last fusion at 17, I thought that it was all over.
What did you mean you had problems with the ilius?
Are you feeling better day by day and what is your pain level?
Also, what is it like being fused to S1?

I don't mean to bombard you with a ton of questions, I know your probably in pain so answer whenever you can!

Thanks,
Christina

[Theresa]

fused to the sacrum

Christina, My surgery was on April 8 and April 12. My doctor is Dr. Charles Reitman. He put a device (plate) attached to the sacrum so that the fusion has a better chance of fusing. He said alot of times the fusion has a had time fusing to the sacrum so he uses this plate that really helps. The most pain that I have right now is in the tail bone area, but I'm trying to work through that. Ilus is where your intestines shut down for awhile due to the surgery. You stay on a liquid diet until the doctors start hearing bowel sounds. It took me a little longer because I was out for so long. My problem I'm having now I think and hope is hormonal. I don't know if your hormones get messed up with the surgery and all the meds but I assume they do. I've been having little pity parties and crying spells. It doesn't help that my daughter just graduated law school and had to leave the next day for Denver. That wasn't even a week ago. I am starting to get around a lot better. When my husband and I go for a walk, we take the wheelchair so that I can walk and then rest, and walk some more. Hope this helps. Theresa

[SandyC]

Re: Just had surgury

Theresa,
Hi, I'm about a 11/2 from my revision. You are doing really well. I was also fusied from T3-S1 at 53yrs. I can sympathize with you...I had to learn to take things a bit slower for about 1 year. It took 6 months for me to bend from the hip to get to my tennis shoes and tie them myself! Making the bed was a major undertaking, which required a nap afterwards LOL. Hang in there once you can stay up for several hours a day, drive and walk a couple of blocks, things will speed up as far as healing goes.
SandyC

[Theresa]

Sandy, Thanks for the words of encourgement!!!! We don't hear enough from the people who have the long fusions or extensive surgery. It sure is different in terms of healing and getting better. It sure takes alot longer to do the simplest things both mentally and physically. There was a man in the hospital in the next room to me with the same doctor who had a spinal fusion. I don't think it was scoliosis related though, he was in and out and walked out just fine. When you have the anterior and posterior procedure and the whole spine is involved is a hugh surgery. You know this going into the process but it doesn't hit home until you're at home trying to recover and at almost 1 1/2 months you still have pains in the oddest places and using all kinds of handicap devices to get though the day. I know that one day it will be better but sometimes it gets hard waiting for that day. In my case, there was no option in my opinion to have the surgery. I could feel my ribs on the left side already poking into my lungs. I'm glad you're feeling better and I look forward to the day that I will. Theresa

[Mistina]

Hi Theresa,
It sounds like you are doing pretty well. I don't remember much about my first surgery when I got home except for when I did something very minor I was beat and ready for a nap. Of course I was quite young and back to school in 1 month.
My biggest fear now being fused to S1. I know your still really early into it but do you have pain in that area of the sacrum at all?
I'm so afraid of this. I'm afraid of all the hardware in the sacrum causing pain.
When I hear that someone can tie their shoes at 6 months though sounds pretty good to me, as I cannot do that now.
Hope that your recovery get easier every day!!
Christina

[Theresa]

pain

Christina, I do have some pain in the sacrum area but it seems to be getting less and less. I didn't have any the first few weeks, I assume that area was still numb. I helps putting an ice bag on it every so often. Keeping my fingers crossed that it will go away. Theresa

[Dorinda]

Hi Theresa!

It's so nice this forum exists! I learned more from reading about others' experiences than my doctor could ever have prepared me for!

I am 51 years old, had A/P surgery on March 29th, for progressive curves of 74 and 52 degrees - all done in one 10-hour day. I am pleased to find out a month later that the curves were 50% corrected and am 2 inches taller. I had steri strips instead of any stitches or staples on both incisions. My stay in the spine unit was 5 days after which I was transferred to another hospital for 10 days of rehabilitation. Next week, I'll be starting out-patient physical therapy and hope to be fully recuperated by this time next year. I'm supposed to walk 30 minutes twice a day (with a walker) and have a few exercises that I do in bed before getting up. It's so difficult to exercise when you hurt, but it really does help the stiffness as long as you don't overdo.

I had to travel from Alaska to Seattle, WA for the surgery and rented an apartment for the 6 weeks before flying back home. A good idea since the 2-hour flight was pretty unbearable even after all those weeks after the surgery.

The body "waking up", numbness, tingling, and other odd sensations are finally not so bothersome as they were. The bone graft from my hip was about the worst pain for the first 6 weeks or so, but much better now. I also developed an ulcer, which the doc says is not uncommon in this type of surgery. I'm not sure if it was caused by the painkillers or all the worrying I did. (It's a good idea to keep occupied with a good book or movies, etc. while you're laid up so you don't dwell too much on how you feel.) I also lost approx. 20 pounds after the surgery, and am still trying to gag down Ensure and milkshakes to gain my energy and strength back


Now that I'm back home, with family, things seem more normal. I may be able to go back to work part time sometime next month.

Hang in there!

[Theresa]

Dorinda, It was great to hear from you. It sounds like you went through all the same things that I am. What were the exercises that you had to do in bed. I think that would be helpful for me to do. I overdid the walking the other day and now my calf and ham strings and real tight. Did you have pain in your buttocks? This isn't where my bone graft was from. It's from the other side. I don't think it's the hardware that was put in down at my sacrum, I think it is muscle. Did you find yourself laying down quite alot during the day? Like up for 2-3 hours and down for 2-3 hours? Good luck with your theraphy.

[nora]

Question for Dorinda

Hi All,
Thanks to Dorinda for sharing her experience. Dorinda, what mad you make that final decision? Was your pain still bearable? Had you lost quality of life? Any recommendations to a 40 year-old who has 2 large curves but pain that is tolerable. I've only had to curtail a few activities and I basically take rests periods when I do back-breaking (pun intended) things like gardening and a lot of lifting or moving furniture, etc. My kids are still little and I think will be easier on my family in 5 years or so. Its hard for me to concede to such a major, permanent intervention when I'm fortunate to not suffer nearly as much as most of the folks on this forum. Thanks again. -Nora

[Dorinda]

Theresa & Nora,

Thank you both for responding! It's good to find others to relate to that have very similar problems that I do.

In answer to Theresa's questions: Yes, I do have pain in the buttocks, more muscle pain than anything else although the bone graft site is still achey at times. I spent most of my time in bed the first couple of months. I had to lie on my back most of that time because of pain in my left hip (graft site) and pain in my right side from the chest tube and incision - so much that I think I'm getting a bald spot where my head rubbed the pillow! Now that I'm home, I can stay up for longer periods and rest in my recliner, but still nap once or twice a day for 2-3 hours.

Nora, my final decision to have surgery was a very difficult one that I had grappled with for most of my life, vowing that as long as I could still walk, I wasn't going to have it. For the past 13 years, I've been a single mom raising 2 children by myself, which is probably one of the major reasons I've delayed this surgery so I can empathize with your situation. Now that my children are grown they have been a great help. Three years ago, I found that the pain had increased to a point where my quality of life had indeed been negatively affected. My lung function was becoming below normal and the ribs on my right side were painfully rubbing against the top of my hipbone. Not to mention increasing pain and the inability to do most household tasks without having to rest every 10 minutes or so. And the increasing desire to avoid social activities and dealing with the pain while at work; I avoided prescription painkillers as much as I could because of the drowsiness they caused. Good luck in your decision; I know it's a very tough one!

[nora]

Thanks Dorinda

Thank you, Dorinda, for such a prompt reply. I've come to realize that I'll never really know the right choice. Its all a calculated risk until someone learns how to see the future. I'll keep on reading and learning. N

[Theresa]

Dorinda, What were those stretching exercises that you did before you got out of bed? Also, what was your fusion length?

Nora,

I was like you. I had two major curves with tolerable pain (79 thorasic, 44 lumbar). I understand about the gardening. You do it but know your going to pay for it later. The reason I decided to have my surgery now was I could feel my ribs poking my lungs and having muscle spasms in the lung area. If my lungs were starting to be involved, I didn't want to wait and find out how long before my heart would be involved. My kids are 26 and 19, so I didn't have that concern. If you have family to help it would be great. My husband stayed home the first two weeks, then I had my daughter, and now I have my son. I've been out of the hospital about 5 weeks. Still use the walker alot, and lay down in bed for a few hours everyday. Starting to fix simple dinners and doing a few things around the house. Be glad to answer any more questions. Theresa

[Dorinda]

Theresa,

My fusion length was from T4 to L4.

Sorry, I totally spaced the exercises earlier. Basically, I am doing one set of 20 reps each twice a day (the first 4 exercises while lying in bed):

Calf Pumps: (They probably had you doing these in the hospital.)
Slowly point your toes back and forth to produce contractions in your lower legs.

Knee Extensions: With a pillow under your knee, raise the leg to a count of 6 before lowering. Repeat with other leg for the same amount of reps.

Isometric Abdominals: With your knees bent, tighten your stomach by pressing your elbows down. (If this makes spasms in your back, like it did mine, you can just press the palms of your hands against your thighs instead.)

Shoulder Protraction: While raising your arms straight overhead, attempt to push your arms to the ceiling. (This should result in a nice stretch between the shoulder blades.)

Shoulder Circles: Sitting on edge of bed with feet on floor, circle shoulders backward and then forward.

Standing (with walker for support) Mini Squats: With your back straight against the wall, bend your knees and hold for a few seconds before straightening.

Toe Raises: Again with walker for support, keep your legs straight and alternate pushing up on your toes and rocking back on your heels.

My doctor recently had me add bicep and butterfly curls with one pound weights. I also try to walk a half hour twice a day, but most days can only manage once per day.

My hospital had a website that may also have some more information you might be interested in at: www.swedish.org
My rehab was at their Providence campus.

A question for you: Do/did you have to wear a back brace? (I don't but sometimes wonder if it would help.)

Thanks!

[lily]

karen,
what is you email address? i have a lot of questions.

lily

[LindaRacine]

Theresa...

Please do not try ANY exercises without the help of a qualified physical therapist or other health professional. I know from experience that exercise can actually worsen a situation if it's either the wrong exercise for the individual, or it's performed incorrectly (which is incredibly easy to do!).

Regards,
Linda