Do You Have Post-Op Discomfort after THREE years?

[Irene]

Hi Everyone ~ I have scoliosis and had my 12-hour-surgery 3 years ago. I was fused from T-11 to S1. My "S" curvature was 58 degrees and 56 degrees. I am wondering if any one out there still feels EXTREMELY uncomfortable after waiting patiently 2 or 3 years for relief...?? Does any one feel as though a giant fist the size of a cantaloupe melon or basketball is either "squeezing" or "pinching" their entire lumbar area from "deep within"? ~ I used to call this feeling a "crushing sensation", but there are many adjectives for it out there. I guess I'm looking for more "adjectives" to help me tell people what I go through every day. Thanks much!

[sweetness514]

Hey Irene, I remember and was thinking about you

After the first year of healing and having that hook taken out at about 1 year and four months post op, the pain was a bit like you are describing even in my upper back after over doing it(standing or sitting long periods) but I have gotten better with much time and exercises, such as swimming and lifting light weights. The spine needs to readjust to it's new form and that really takes time and strenght in the muscles.

I don't know if it's what youre describing, hope you get relief soon.

[LindaRacine]

Hi Irene...

Intense pain after three years is definitely not the norm. I'd like to encourage you to get a second opinion. Who was your surgeon?

--Linda

[Irene]

Hi Linda! Hi "Sweetness"! Thank you so much for your replies.
I think I'm kind of stuck for a while, because I simply don't know what to do or who to turn to, or who to "trust". Dr. Lawrence Lenke (Dr. Bridwell's associate) performed my surgery in St. Louis on June 19, 2002. I think he's an excellent surgeon and I sincerely trusted him. He told me that I would "get used to" this "pressure" deep inside of me. He also told me that none of his other patients complain as much as I do. I have the same problem as everyone else... "Which surgeon can I turn to".... "Which surgeon can I really trust"... I think I will give myself a total of 5 years (2 more to go), and if I'm still this miserable, I was thinking of Mayo... I hope you all have a fabulous weekend! You always seem to "be there" for me... Thank you so much!

[Gail]

Hi Irene,

For 6 months post-op, I felt like I had this huge cramp at the top of my incision (which is just above my bra clasp), and it felt like someone was trying to pry the rods out with a crow bar! I ask my doctor to write a script for Physical Therapy. The first day of PT I described my pain to the guy and he gave me an excerise that totally took away the cramp and pain! I couldn't believe it...there I had gone 6 months thinking that it would always be there. This guy was so wonderful! Each week I would describe a problem I was having(tieing my shoes, etc) and he would assign exercises that would solve my problems. I would encourage you to talk with your doctor about PT and then find a PT instructor that has worked with spinal fusion patients. It was my turning point!

Kindest Regards,
Gail

[Lavinia]

Hi Irene,

It really sounds awful how your consultant spoke to you. No excuse and for it's not true that everyone feels that.

HOwever I can relate to what you say, and the difficulty finding words to explain what it feels like. I'm coming up to 1 year post-op, spinal fusion T2-T12, age 56. Various problems, and will need a cross-link removed at some point, not my favourite thought. One symptom that has not shifted is a feeling of massive pressure and spasm starting from the middle of my back, spreading up towards the shoulders and round the ribs. Like a suit of armour several times too small, getting ratcheted tighter and tighter if I move or (!) breathe, and totally intrusive and uncomfortable.

I haven't yet found out for sure what it is due to. The last medical appt (different system here in UK) was with a junior who airily said it is permanent nerve damage and won't change. I'm now waiting to see the consultant in December, who at least said he could not say what it might be without examining me - which was more than his junior did. The only thing that sounded even remotely likely to me was from an online pain clinic, which suggested there is sometimes 'thoracic spasm' in reaction to the metal, so that the actual metalwork feels huge. My spasms sometimes feel like metal poles and sheets, so might be that but also might not.

Hopefully physiotherapy might help you - did nothing for me but make things worse, so was discharged after 3 visits. Sorry not to have anything to suggest, but fellow feeling for very difficult to describe and obnoxious sensations which just go on and on.

[Karen Ocker]

For Lavinia

That "suit of armor feeling" is normal; I had that for 2 1/2 years. I even get that sometimes now. Tension makes it worse and exercise helps it.
Karen

[Lavinia]

Karen

Karen - very many thanks for yet another encouraging message. I have been trying to hold on to the hope that the spasms might improve, despite what the last doctor said. THe odd thing is that they don't seem to be muscular - diazepam does not affect them, and stretching/exercising etc. makes them more acute, at least in the short term. I've been walking 45 mins a day or more since last February and having remedial yoga lessons (and 20 mins practice eac day) since July. Both of these, and even trying to breathe into my even more reduced lung capacity intensifies them, and the day after yoga lessons is always really painful. I'm continuing, because there is no future in doing otherwise. But I do wonder what they are due to and why they are not beginning to reduce. Do you have any thoughts about why this might be? Hopefully I will get an appt with the consultant in the not too distant future to be able to discuss it properly. Ironic, because my reducing lung capacity was a main reason for having the operation - as it was for you - so disappointing to find that so much worse than before. But am trying to keep an open mind about possible improvements. At least I know enough to cast doubt on the medical line here, that nothing improves after a year except general fitness.

I even think that when the cross-link is removed it might help the spasms - it certainly makes them worse. So quite hard just now - more pain than any time since the first months post-op, and having to spend an increasing amoung of time lying down, as the only way of reducing the pain.

Thanks again for your help and encouragement. I only wish it were half as available from the medics here! You do a great job for all of us oldies.

[Karen Ocker]

spasms/"suit of armor"

Lavinia:
Since I don't have them all the time any more I attribute it to spasms. I also believe we get deep scar tissue which I have had broken up, myofascial release, by a muscle therapist. This is a painful massage type therapy which seems to help. I do agree that, though not painful, the sensation can be rather perplexing at times. Dwelling on it can drive one crazy.

I don't think valium is a good idea because it is a depressant-we don't need that!--and one dose is not totally eliminated from the body for 3 days.

My surgeon did say that some pulmonary function can be lost because the muscles are cut but I believe keeping aerobic and exercising wil keep us supple.

Karen

[Irene]

"Suit of Armor(Armour)" INDEED!!

Hi Karen, Gail, and Lavinia... and Everyone! ~ THANK YOU! That was good, Lavinia! You have given me a new way to explain my pain-in-the-butt discomfort! "Suit of Armour" is excellent! Thanks! ~ I do not have "spasms"... Once in a while I have a quick, sharp, short, "stabbing" pain here and there, but my biggest problem is simply the "squeezing" feeling deep inside my entire lumbar and hip area, and in the back of my waist and halfway up the middle of my spine... and that yucky pressure never goes away... (except for when I lay in my bed!) ~ ~ Gail, I have had so many PT's that I've lost count. My Hubby drove me 2 hours to St. Louis to work with a specialist who only works with post-op scoliosis patients. All of those silly exercises do absolutely nothing for me. I'm very thin, but I use my treadmill a lot and my legs are very strong, so I am able to do almost all of the exercises. They just don't help me. Nothing will release that "pressure-cooker" feeling. (My upper back is pretty good.) ~ My mini-torture exists completely in my lumbar area. I'm so glad that PT helps you, Gail. I sure wish that it would help me. That's OK... I will not give up! I know as time passes, my miracle will happen! Thanks again to all of you for that wonderful feeling of NOT BEING ALL ALONE!

[Abbyjo_21]

Irene
I have those same pains that i think your describing...it gets to the point to where i just want to lay down because i feel so miserable. Right now i am just 4 months post opp, i have had surgeries befor and i put up with pain somewhat like this for 6-8 months and finally gave up and went to the doctor. It ended up that i had fractured 3 vertrebras and had to have a surgical revision. For me, i also get my breath taken away from me when i lay down..like from all the tension in my lower back. I think that if your doctor is telling you that "your complaining too much" that you definately need to find a doctor! Im sorry but im the type of person who goes to a doctor to get help, not get turned down. And mayo is definately a good place to be thinking about. That is where i have had all three of my surgeries, all preformed by Mark B. Dekutoski M.D. I guess just keep strong, but dont put yourself through too much because there is a possiblity that it can be fixed and your going through all this pain for no reason.
Let me know if you do ever figure out what the pain-in-the butt pain is caused by...id also like to know!!

Sincerely,
Abby

[Irene]

Hi Abby! Thanks for the great input! We all need to hear each other's situations... It really does something good for our spirits, eh? Your description of what happens when we first try to lay down is perfect. I experience the same thing... it kind of takes my breath away... When I first "lay myself down" on my bed, I can hear myself moaning "oh.. oh... oh..." ~ until I relax all of my muscles... then it's more like "mmmmmmmm"... "Feels so good to defy gravity"!!!!! I'm so thankful that all of my pain and discomfort goes away when I'm in a total horizontal position! ~ When and "if" I ever find out what's causing this annoying "squeezing" down in my tail bone and hips, I'll be sure to post it! Thanks again, Abby!

[LindaRacine]

I have those same pains, especially if I've had an especially active day. It hurts like hell for about 10-15 seconds, then it feels great.

--Linda

[Abbyjo_21]

Irene-
I agree that its nice to hear other people situations. Its nice to know that some other people in this world are going through what your going through, and that your not the only one suffering. Like in school, absolutely no one knows what im going through so its hard for me to have a conversation with them about it because i feel like im talking to a brick wall and it tends to get very depressing. I totally agree with you on the fact that it feels really nice when im in total horizontal position...its kind of the only time i feel confortable the whole day. I've even tried having a heating pad on my bed to see if possibly the heat would help my back. I think it might have helped a little bit, but im obviously in a lot of pain still. Keep in touch-
Sincerely,
Abby

[sweetness514]

Abbyjo...

Maybe it is different for everybody but heating pads made my rods swell and it made me feel inflammation, so it was worse. Icing helps much more. Just a thought.