I need to talk to someone!

[Joyce7]

Hi, I'm a 57 year old female 8-1/2 months after a revision to my thoracic fusion done in 1969, and completely fused from T4 to the pelvis. I'm having a feeling of heaviness across my lower back (like 100 lbs. of weight) and having a hard time getting around. I recently started using my cane outside of the house. I don't go out much. I'm still on pain medication (Ultracet) 3x a day and would like to communicate with anyone who is having similar difficulty. I am also experiencing sciatica in my right hip/leg. Is this common?
Can I expect to improve more at this late date? Joyce7

[Karen Ocker]

Joyce, I was fused the same levels as you-at age 60. It was a good year and half before I was pain free. Because of the extensive fusion the lack of movement around those areas of the spine causes the muscles to weaken/spasm. It was common to feel like I was wearing a suit of armor.

I had my spine surgeon prescribe some PT to get into better condition and 6 months after surgery I gradually resumed the Pilates I did before surgery. I increased my walking. On occasion, when I did new activities, I would get assorted pains including sciatic ones when I stretched my legs(the sciatic nerve runs through the buttocks) or if I sat or laid on my butt certain ways.

I assume your surgeon has checked you out and found no reason for the heaviness;I sometimes felt that way when I was too sedentary or rode on long car trips.

What helps me is to keep moving; I do modified push-ups, walk 3 miles up and down steep hills 2x a week and a modified Pilates program tailored to my limitations. I still work, standing all day and plan a trip hiking in the Alps in spring. My experience has shown that the worse thing for me was allowing myself a sedentary lifestyle. I certainly would not use a cane :eek: this late after surgery without really checking this out with my surgeon. I also believe that I could not dwell on every little ache, jab, itch, pull that's involved with the healing. Otherwise I would go nuts. I took no narcotics after 3 months but did use a TENS machine, Tylenol Arthritis, Neurontin(up to 6 mos post op) and Aleve after 4 mos post op. However, the thinking now is that no NSAIDS should be used the first year after surgery. NSAIDS are: ibuprofen(Advil), naproxen(Aleve) etc.

[SandyC]

Joyce,
I was 52 (now 57) when I was fused T4-S1, like you. I agree with Karen, it was at least 12-18 months after surgery before I felt human ;) . The very worst thing you can do is be sedentary. I know that it is soooo easy to just want to lay or sit instead of at least walk around your neighborhood everyday. I started with just walking around my block 2 or 3 times aday, and I can tell you there were days when it took a LOT of effort to just walk out the front door. One of the things that really helped me was besides the heavy duty pain pills was the addition of Neurontin. I just love the stuff, it is for nerve pain and is very effective, at least for me. You've just really started the healing process, so just hang in there (easy to say huh?), it will get better.

[Joyce7]

THANKS FOR MUCH FOR THE REPLY! It helped me a great deal! If we could continue any dialogue, that would be great. Please let me know. Regards, jbJoyce, I was fused the same levels as you-at age 60. It was a good year and half before I was pain free. Because of the extensive fusion the lack of movement around those areas of the spine causes the muscles to weaken/spasm. It was common to feel like I was wearing a suit of armor.

I had my spine surgeon prescribe some PT to get into better condition and 6 months after surgery I gradually resumed the Pilates I did before surgery. I increased my walking. On occasion, when I did new activities, I would get assorted pains including sciatic ones when I stretched my legs(the sciatic nerve runs through the buttocks) or if I sat or laid on my butt certain ways.

I assume your surgeon has checked you out and found no reason for the heaviness;I sometimes felt that way when I was too sedentary or rode on long car trips.

What helps me is to keep moving; I do modified push-ups, walk 3 miles up and down steep hills 2x a week and a modified Pilates program tailored to my limitations. I still work, standing all day and plan a trip hiking in the Alps in spring. My experience has shown that the worse thing for me was allowing myself a sedentary lifestyle. I certainly would not use a cane :eek: this late after surgery without really checking this out with my surgeon. I also believe that I could not dwell on every little ache, jab, itch, pull that's involved with the healing. Otherwise I would go nuts. I took no narcotics after 3 months but did use a TENS machine, Tylenol Arthritis, Neurontin(up to 6 mos post op) and Aleve after 4 mos post op. However, the thinking now is that no NSAIDS should be used the first year after surgery. NSAIDS are: ibuprofen(Advil), naproxen(Aleve) etc.

[Joyce7]

Sandy: THANK YOU SO MUCH - your message really helped! Please continue a dialogue with me. Regards, jbJoyce,
I was 52 (now 57) when I was fused T4-S1, like you. I agree with Karen, it was at least 12-18 months after surgery before I felt human ;) . The very worst thing you can do is be sedentary. I know that it is soooo easy to just want to lay or sit instead of at least walk around your neighborhood everyday. I started with just walking around my block 2 or 3 times aday, and I can tell you there were days when it took a LOT of effort to just walk out the front door. One of the things that really helped me was besides the heavy duty pain pills was the addition of Neurontin. I just love the stuff, it is for nerve pain and is very effective, at least for me. You've just really started the healing process, so just hang in there (easy to say huh?), it will get better.

[henderr]

Before I had my thoracic fusion, I often felt like a heavy sack of potatoes was resting on my stomach below my bras line. My doctor told me this was refererred pain. The pain went away after I had my surgery. According my my surgeon, referred pain occurs when you have something wrong in one part of your body, but your brain interprets it incorrectly and makes you think the pain is in another area of your body.

[Joyce7]

Thank you for your response. The heaviness I'm feeling is at my waist and below half-way down my buttocks. What could this be? jbBefore I had my thoracic fusion, I often felt like a heavy sack of potatoes was resting on my stomach below my bras line. My doctor told me this was refererred pain. The pain went away after I had my surgery. According my my surgeon, referred pain occurs when you have something wrong in one part of your body, but your brain interprets it incorrectly and makes you think the pain is in another area of your body.

[henderr]

It is hard to tell just where the referred pain is coming from, but I am guessing it is coming from the lumbar area. Sorry I can't be of more help.

[Joyce7]

Thank you for the response. I'm just scared that something else is wrong. jb

[Joyce7]

Sandy: How long were you on neurontin? I'm having right leg pain...now I'm on Lyrica, but it's 9-1/2 months after surgery. Please contact me. Regards, jbJoyce,
I was 52 (now 57) when I was fused T4-S1, like you. I agree with Karen, it was at least 12-18 months after surgery before I felt human ;) . The very worst thing you can do is be sedentary. I know that it is soooo easy to just want to lay or sit instead of at least walk around your neighborhood everyday. I started with just walking around my block 2 or 3 times aday, and I can tell you there were days when it took a LOT of effort to just walk out the front door. One of the things that really helped me was besides the heavy duty pain pills was the addition of Neurontin. I just love the stuff, it is for nerve pain and is very effective, at least for me. You've just really started the healing process, so just hang in there (easy to say huh?), it will get better.

[SandyC]

Joyce,
I'm still on Neurontin :( . But it is in my rib area, where the anterior incision was made, that has nerve damage. I take 2 pills a day. Since I had my surgery in '02, I don't think that there will be any more improvment in the forseeable future. 2 pills a day is not a big deal and the Neurontin controls the pain very well, so if I have to take it forever :eek: , it OK.

[Joyce7]

Hi Sandy: I'm glad the Neurontin helps. I tried it prior to surgery and it gave me hives and an allergic reaction. Now I'm taking Lyrica (just started) and having some relief, but I'm still having difficulty walking for any length of time and staying on my feet. The most I'm out of the house is 3-4 hours and not often. I had a CAT scan today of the lumbar region and I'm taking the CD to the pain management doc next week....hope nothing else is wrong. The Lyrica makes me feel a little wigged, but it's better than the pain. Also, I think it gives me headaches. Feel good, regards, jb

Joyce,
I'm still on Neurontin :( . But it is in my rib area, where the anterior incision was made, that has nerve damage. I take 2 pills a day. Since I had my surgery in '02, I don't think that there will be any more improvment in the forseeable future. 2 pills a day is not a big deal and the Neurontin controls the pain very well, so if I have to take it forever :eek: , it OK.