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View Full Version : Almost 3 years post op-still in pain



bluestone
10-22-2013, 09:44 AM
Im 3 years post op on the 4th November and I fear I'm heading towards hardware removal. I've tried so hard to accept and live with this pain and discomfort but I'm thinking long term and I can't live like this.

I get up in the morning so sore from lying on my back all night-I can't sleep on my sides because its too painful. Then I get the pulling and digging, by lunchtime the pressure starts and if I don't lie down I end up in dreadful pain. If I have to do something that involves leaning forwards-such as most things! It feels as though my hardware is cutting into my muscles then I feel as though I'm walking around with a knife in my back, it also feels as though a big pair of hands are squeezing me around my torso and if I'm walking it hurts to take a deep breath-this can't be right can it?

I wrote to my surgeon detailing how I feel and he said he is confident that it is my hardware-mainly the protruding screws and he will remove it if that's what I want but of course there are no guarantees.

I so so wanted to keep my hardware in, I feel as though its my security blanket but my body obviously doesn't want it. I keep asking myself-why me? There are many people who seem to bet on with their lives with no problems like this. I just feel so damn unlucky.

Dora
10-22-2013, 10:26 PM
I can't offer advice or thoughts because I'm barely 12 weeks out.

But I can say that I think a person knows when the pain of having something one way is worse than NOT having it that way. What was your pain level before the surgery?

susancook
10-22-2013, 10:33 PM
Bluestone: how about another opinion? If I had surgery and was in constant pain, I might consider seeing another spine surgeon for an opinion.

I am sorry that your life has been so difficult and it is probably hard to read threads about people with minimal problems postop. We are all so different. i do not remember who you said did your surgery, but you might consider seeing a spine surgeon that focuses on revisions. Just my 2 cents worth.

Susan

gardenia
10-23-2013, 10:53 AM
You stated that you wrote to your surgeon i.e. he did not see you but answered casually without being for certain. How far are you from him? Is there travel or insurance restriction to prevent an office consultation? I am very in tuned with my body and I know well about pains and pulls that increases towards the wrong direction.

My operation was last November and I was lucky and not. As soon as I came out of surgery, I was painless. I took the necessary meds for 6 weeks and then I was cut off without any problem except for Gabapentin for another month. All was well until my 6 months check up when I noticed a loss of taste in food which continued to get worse.

Now, I am taking Prednisone (much against Dr Bridwell's consent) for a month to reduce my EOSINOPHILIC GASTROENTERITIST diagnosis. My digestion system is severely inflammed, I was no longer absorbing any nutrient and lived in the bathroom and bed.

I lost 20 lbs and my rib cages can fit in one hand thus they are painful. My back muscles are extremely numb/dead and I can feel all my hardware. Using Ben Gay extra extra relief at night helps except that it gives me the chills and I cannot warm up for hours.

My feet are always frozen. But, I get to see my doctor in a Month for the One Year checkup. Lucky for me is that I traded one pain of a lesser one.

You need to see a doctor and not sit for 3 years suffering without medical help.

WLB1
10-23-2013, 06:34 PM
I am only four months out, but since I had fusion t4 to s2, I can relate to being unable to breathe deeply. I realized that since my ribs would only flex so far I couldn't really breathe deeply in my chest. I taught myself another way to breathe deeply using my abdomen. Before I figured that out I would panic that I was suffocating. For me, lyrica has helped along with cymbalta. I was also told I might never be "pain free" pain free. Whatever that means. I, too, would go for a second opinion. I went through three surgeons for just the first surgery.

bluestone
10-24-2013, 06:13 AM
Bluestone: how about another opinion? If I had surgery and was in constant pain, I might consider seeing another spine surgeon for an opinion.

I am sorry that your life has been so difficult and it is probably hard to read threads about people with minimal problems postop. We are all so different. i do not remember who you said did your surgery, but you might consider seeing a spine surgeon that focuses on revisions. Just my 2 cents worth.

Susan

I trust my surgeon completely and he has a good reputation here in the UK so I don't see what a second opinion will bring to me. He has been extremely thorough and after a consultation about 5 months ago he sent me for a scan to check that an infection wasnt causing my pain. He also sent me for a bone scan and a CT scan. No problems showed up. I know that he also does revision surgeries.

bluestone
10-24-2013, 06:21 AM
You stated that you wrote to your surgeon i.e. he did not see you but answered casually without being for certain. How far are you from him? Is there travel or insurance restriction to prevent an office consultation? I am very in tuned with my body and I know well about pains and pulls that increases towards the wrong direction.

My operation was last November and I was lucky and not. As soon as I came out of surgery, I was painless. I took the necessary meds for 6 weeks and then I was cut off without any problem except for Gabapentin for another month. All was well until my 6 months check up when I noticed a loss of taste in food which continued to get worse.

Now, I am taking Prednisone (much against Dr Bridwell's consent) for a month to reduce my EOSINOPHILIC GASTROENTERITIST diagnosis. My digestion system is severely inflammed, I was no longer absorbing any nutrient and lived in the bathroom and bed.

I lost 20 lbs and my rib cages can fit in one hand thus they are painful. My back muscles are extremely numb/dead and I can feel all my hardware. Using Ben Gay extra extra relief at night helps except that it gives me the chills and I cannot warm up for hours.

My feet are always frozen. But, I get to see my doctor in a Month for the One Year checkup. Lucky for me is that I traded one pain of a lesser one.

You need to see a doctor and not sit for 3 years suffering without medical help.

I can't fault my surgeon and I get to see him whenever I want, I'm in the UK so we don't have insurance to worry about-we have the fantastic NHS. its an hour and a half drive away. I am currently waiting for an appt after calling his secretary. The letter was some thing I did 5 months after I had my consultation with him and I was going through a particularly bad time.

He offered to remove my hardware last year but I was unsure because I have heard of people my age taking up to 3 years to completely heal. I told him I was worried about leaving it too long but he said the longer the better because it would mean my fusion is more solid.

I guess I'm used to pain because my pain pre op was so bad for many years but I've traded that pain in for a pain that I feel is more difficult to live with. Its the pressure and the feeling that knives are digging in if I do anything that involves leaning forwards, to me that indicates its the hardware digging I to me. I wonder sometimes whether I would be in less pain if he hadn't corrected me so much.

susancook
10-24-2013, 10:48 AM
I trust my surgeon completely and he has a good reputation here in the UK so I don't see what a second opinion will bring to me. He has been extremely thorough and after a consultation about 5 months ago he sent me for a scan to check that an infection wasnt causing my pain. He also sent me for a bone scan and a CT scan. No problems showed up. I know that he also does revision surgeries.

Just thinking that a second opinion might either reinforce your trust in him or give you another perspective. My first opinion was an awesome Scoliosis adult specialist. My second opinion (an equally qual sugeon....both are chairs of the spine dept) exactly agreed with his recommendation mostly, but had a little different approach for surgery. #2 was my choice as I had a better support system.

Is your surgeon a scoliosis specialist for adults member of SRS who does major revisions frequently?

I am not saying that he is wrong in anything that he did, just thinking if you were me, I would just double check with another "expert", just to make sure. Make sure that your #2 consult is in a major university hospital SRS adult specialist.

Nobody likes to travel, I travel 13 hours to my surgeon. Gardenia traveled accross the US to see her Surgeon.

Hope that you find a solution to your pain and can get on with a future like of being more active.

Susan

WLB1
10-24-2013, 03:45 PM
Thanks so much, Susan, for all you comments. Both on this thread and mine and others you give me hope!

bluestone
10-24-2013, 04:59 PM
Susan-the hospital I attend is a major university teaching and research hospital.
I agree with you that a second opinion could reinforce my trust in my surgeon and it could help in my making a decision.

I've had an easy day today and if my back felt like this-just some pressure and pulling, I could live with it but I'm only 47 and I don't want an easy day everyday to avoid pain. I had to clear up a smashed bottle of wine off the floor yesterday and the pain of doing this was horrendous, I wanted to cry. I had this surgery to improve my life but I feel as though its just the same-apart from being amazingly straight.

Thank you for your advice.

Sarah