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braceyourself
09-26-2011, 04:08 PM
I know there's another thread about nerve pain, but I'm pretty sure everyone who has responded is only a few months post-op. I'm almost 2 years (in Nov.) post-op, and whenever I use my arms a bit, I get pain in my upper back from between my shoulder blades to the base of my neck.

Usually, I would just live with it and not even ask, but it causes pain when I play the piano, cello, and saxophone-- which I play several hours a day this semester. Just wondering if anyone else experienced it for this long and if it goes away. Any thoughts would be appreciated.

Lorraine 1966
09-28-2011, 04:15 AM
Katie, dont know if this going to help. I have nerve problems around the top of my rod and the pain is around the middle of my shoulder blades. This has not been like this since the operation just the last 14 years. But please, please do not think you are going to be the same, we are all different. Please don,t take this to heart I only answered as you seemed to really want to hear from people who were a lot further along after their operation. I can remember after my operation that it took quite a long time for the nerves to actually settle down.


Lorraine

debbei
09-28-2011, 07:20 AM
I'm sorry that you are still having pain.

Are you sure that this is nerve pain and not muscular? Have you discussed this with your surgeon?

Lorraine 1966
09-29-2011, 11:14 PM
My surgeon has retired, and I have been to see a number a specialists. Yes, This particular pain in that spot is nerve pain you can sort of feel that it is as well. But as I have had the rods in for 45 years I am not complaining too loud,lol. Also for decades I had no pain at all and have led a perfectly normal life. I have been a member of this forum for a long time under the name of macky but then I forgot my user name and pass word so joined again. I come on here every now and again as I think it is a wonderful place for us all to talk and have a bit of a groan, also some great info. Thankyou debbei for your interest.


Lorraine

JenniferG
09-30-2011, 05:01 AM
Hi Lorraine, good to see you here. I have to say, after 45 years, your doctor did a good job on you all those years ago. He must have been a genius in his field. I wonder if there are any others who have 45 year old rods. Amazing!

Lorraine 1966
10-03-2011, 02:04 AM
Jen, he was a genius. Even when this dear man, who gave me my life back retired, he wrote me a letter. He explained all about what he did during the operation and wished me all the best. I thought that was amazing, that was 8 years ago. He actually watched Dr Harrington here in Australia all those years ago, I was the 7th person operated in Australia with the harrington rods so I have been told. I have also met the nurse who was in the operating theatre in Sydney when Dr Harrington came over and he operated on 5 patients himself. She works at the Launceston general Hospital now(I live in Launceston) and that was an amazing co-incidence. Life is like that sometimes eh!!


Look after yourselves
Lorraine.

JenniferG
10-03-2011, 04:01 AM
That's something special to tell the grandkids! Considering you were only the 7th, he certainly did a meticulous job, using what was a new procedure. Are you persuing Revision surgery, Lorraine?

Take care,
Jen

backissues
10-03-2011, 08:51 AM
I had nerve pain in my left upper abdomen after the surgery and for several months afterwards. I had intercostal shots but nothing helped except acupuncture and time. The pain was so bad that the only thing that helped was lying down to put pressure on the nerve. The pain was radiating from T8 and T9 above my surgical site. I am pleased to report that, at almost 10 months post-op, the frequency of that pain is low and the intensity is much less as I can go about whatever I am doing if I get the pain.

I also had occipital nerve pain in my neck and back of my head where the neck meets the skull. I thought these were headaches but really were "pains in the head." The acupuncturist worked on these as well. However, I found out that it was my posture using my desktop computer that was doing it. When I went on vacation, I didn't have a headache all week. This was after having them almost every other day. So, I'm using a laptop, which is set up much lower, and my headaches have gone.

By the way, I had to go through all kinds of stomach tests to eliminate the fact that it was not nerve and was something having to do with my stomach.

Also, I took Gabapentin and Lyrica to try to help the pain for the abdomen but nothing helped.

Take care.

Lorraine 1966
10-05-2011, 05:31 PM
Backissues I love the comment that you now love standing and walking, good on you. Jen thankyou, but I am not going to go into revision surgery as they have said that they cannot promise me that I will have no more pain, so with no guarantees I am going to battle on.

JenniferG
10-05-2011, 11:21 PM
Fair enough Lorraine.

Have you ever had contact with other patients your surgeon operated on all those years ago? Just wondering how they are getting on.