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Date of last update: 10/04/2017.
Forum Name: Neurology Topics
|Janeway - Wed Sep 24, 2008 4:14 pm||
Hello, approx. Jan of 2001 I started to get extremely painful back pains in my upper back (I call them flair ups) that would last anywhere from 10 min to a few hours. I had no injury or anything; they just started happening several times a month. The first couple of times they happened I went to ER and doctor there said was bone spurs and sent me on my way. Over the time I learned that lifting anything, using arms to much, etc would cause these flair ups to happen later that day or evening. I will try to describe these flair ups:
Starts with a little bit of nausea then some trouble breathing. Then the sharp unbearable pain begins (I always described to my husband that it felt like someone had a hold of my spine and was twisting it). The pain would shoot up and down my spine and around my chest making every breath very painful. About a min. before the pain would stop I always get a cold wave running down my spine and then a minute later the extreme pain would stop. After every one of these flair ups I would be extremely sore in my upper back for several days.
Due to how unbearable these flair ups were I learned to not do hardly anything (I was very active before this started). In a years time I gained over 100lbs.
Over the years the flair ups got worse and more frequent to the point in 2006 I decided to ask my family doctor to look more into it. After several tests showing nothing I begged my doctor to do a MRI (my father had back pain and surgery several years before and this test is what showed his problem). The MRI showed a cyst on my spinal cord at T7. I was referred to a neurosurgeon and he recommended a thoracic lamonectomy of t6-t8 to remove the cyst.
Aug of 2006 I went through with the surgery. For months after the surgery I had abdominal spasms and was still getting the flair ups (though they didn’t occur as much). I didn't do to well after the surgery, I had the surgery pain and a new pain to the left of my surgery site that always burned and felt like something ripping through my muscles. At the time I felt that was just a symptom of the surgery and would go away as I healed. It never did, it just got worse. Over time the flair ups have come back and gotten worse as well. I have gone several times to pain management and have been pretty much shooed away saying there is nothing more they can do for me. Same with my surgeon, he has done more MRI's and physical therapy and has shooed me away as well saying there is nothing wrong so there is nothing I can do for you.
So I was pretty depressed knowing I had gone to all these people and no one could find out what was going on, and many thinking I was making it up.
I have been researching thoracic lamonectomys and have learned they are extremely discouraged, due to poor results and complications.
I now have extremely bad back pain all the time to the point I can not work, the only way to keep this pain in control is to lay down on my side. This has ruined my life. Every time I move my arms the burning gets worse in the area left to my scar. I have tried many exercises but they all cause flair ups. I also cannot stand up strait anymore, I hunch over (pretty severely at times). I cannot wear a bra, not even the loosest one I could find. Whenever I wear one I start getting very nauseous and a few min later the flair up will happen.
My question, is there anything out there that can help my ruined back? I regret ever getting this surgery. It did not get rid of the pain I had and added this new pain that never goes away.
Once I get on insurance again (trying to get on disability) my doctor wants to send me to a new pain management doctor and a new neurosurgeon. I keep trying to research symptoms and results of thoracic lamonectomys but there is hardly anything on the web other then it being highly un recommended. I just want to be able to get out of bed and enjoy life again. Any insight would be helpful, I am at a loss
|John Kenyon, CNA - Thu Dec 18, 2008 9:52 pm||
Hi there -
I'm sorry you're having to deal with so much pain and discomfort. These surgeries do sometimes work well, but many times one hears these stories, and they are all too real.
Once you have insurance again it would seem your doctor has a good plan. There are probably more successful corrective (second or third) surgeries to make this right than there are first ones, so if your doctor can find you a good pain management specialist and especially a good neurosurgeon, there is an ever-increasingly good chance that your situation can be improved, although specifics would be outside the scope of my training and practice.
I hope this is of some help to you. Best of luck, and please update us if anything changes.
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