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Old 11-09-2009, 05:57 AM   #1
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help

I have fibromyalgia; degenerative neck disease with many bone spurs; bulging discs L4/L5 with tears; spinal stenosis; and now they are looking at L4/5 & L5S1 facets. I have gone through 8 shots in my back and neck (total). I have so many different types of medicines to try and help with the pain. Nothing is helping and they say nothing is severe enough for surgery. I don't know what else to do. I see a specialist about the facets this week. Praying that they are the true source of my relenting pain.

Last edited by Loosing Hope; 11-09-2009 at 05:57 AM.

 
Old 11-09-2009, 09:27 AM   #2
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Re: help

Check out EFT - Emotional Freedom Technique. It has helped many people with long-term chronic back pain.

 
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Old 11-10-2009, 02:27 PM   #3
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Re: help

thankyou for the suggestion. I'm not quite sure what it is but I will take a look at it. Once again thankyou for taking your time to try and help me.
Sincerly Loosing Help

 
Old 11-10-2009, 05:19 PM   #4
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Re: help

Hi there Losing Hope. I'm from the Spinal Cord Disorders board although I do post here from time to time as my lumbar spine is bad too.

What most people don't understand about spine surgery is that spine surgeons don't operate for pain. Pain can be treated by pain specialists. What spine surgeons look for is loss of function in the affected nerves or spinal cord. What is loss of function? Numbness, tingling, pins and needles...that is loss of sensation. Muscles that don't function right and make you walk funny or you have trouble moving your legs...that is loss of muscle function. Bladder problems....can't hold it or can't go at all and bowel problems...same thing...those are a loss of nerve function to the sphincter muscles...that an indication for immediate surgery.

You should also know that the same symptoms of loss of function that affect your lower spine are the same for the neck. Wherever the problem is, it affects everything below that level so my first indication that I had a problem high in my neck was numb toes followed by only being able to take baby steps(stiff thighs). I thought it was my lumbar spine and it turned out cervical. So your neck should be checked out as well as a possible source of your pain.

I hope the facet injections help or they try doing a rhizotomy(burning off the nerves in the facet joints). But I will make a suggestion. Injured nerves need good nutrition so I take both vitamin B6 and B12 and it has helped with my residual nerve pain from my surgeries. I have a 6 level cervical fusion. Worth adding to your meds to keep the nerves alive and going. Hopefully someone will be able to help you one way or the other.

I hope it helps to know others are going through the same thing and know just how much you hurt.

gentle hugs...............Jenny

 
Old 11-10-2009, 10:26 PM   #5
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Re: help

Losing Hope - hello. I came over to post an update on my L5/S1 problem and saw your post.

It is true they do not like to jump into surgery for most people. Lots of people get to a better state with only conservative care - especially on the lumbar conditions. However, pain is a condition that surgeons [B]will[/B] operate for if all other conservative measures are unsuccessful at treating your condition and when there is a clear structural problem causing the pain. An accurate diagnosis is essential! For patients who suffer from pain, but no specific anatomical cause of the pain can be found, spinal surgery is not advised and non-surgical treatments are recommended

Most excellent surgeons will evaluate the "quality of your life vs. condition" and make decisions and recommedations.

If you have tried the conservative care, and sought out a good interventional Pain Medicine Specialist - and are still not functioning at the proper level, you should be evaluated for what methods have been tried along with surgical intervention as a possibility. Do not be afraid to seek a couple different opinions. I know one woman who was going to what was thought to be a top Pain practice, and they did not help her. On recommendation she went to another pain practice and they were able to help her case.
Surgery is not always the answer! I also noticed you wrote the injections did not help you, that might be an indicator that surgery "might" not help you either because they haven't gotten to the bottom of what is causing your pain. There are lots of examples of people who go through surgery and
although they get a little better, pain and other problems will still remain. Some do get fixed, but your case sounds complicated in that you also have fiibromyalgia. [B]I am wondering what is the highest level pain medication they have tried you on? [/B] Also exactly what medications did they try? Also just as a side note, if you do not live in a sunny climate and get lots of sun, you might have your Vitamin D level checked, because low D levels, can play havoc on Fibro and spine conditions and actually cause an increase in your pain levels. Every little thing helps.

The other thing is has anyone discussed alternatives like internal pain pump, or spinal cord stimulator? Not sure if these fit your case, but certainly - they are also worth investigating. The pain pump is usually reserved for people wo don't do well with the medications either responding or side effects. Some people with lower lumbar isssues are helped by even external TENS units.

Pain, it is exhausting, believe me - I know. I have problems in all parts of my spine and it is a battle. I have been in those depths before where I just got really depressed thought that there wasn't hope, but all I can say is to try to step back, figure out what you can do and make a run at it. Push hard for every diagnostic test available like the things already done plus EMGs, discograms, other blocks, etc. I know it is costly and exhausting but you need to get some good result to show if pain is coming from your spine.

My thoughts are with you. Good luck.

Last edited by PNo; 11-11-2009 at 01:43 AM. Reason: left out paragraph.

 
Old 11-11-2009, 12:06 PM   #6
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Re: help

Hi Neckpatient...great job on the spine board...but....I guess your spine docs and mine disagree because my neurosurgeon does not operate for pain...period. I did talk to a doc in NYC who considered operating for pain in my lumbar spine but the Boston doc said no way. I'd create more problems that I solved.

So I guess I should tell folks that SOME docs won't operate for pain.

But I can see my doc's point. Pain can be treated and the real problem is nerve damage...that can be irreversible. I found out the hard way, didn't I.

I'll remember that next time.

gentle hugs........Jenny

 
Old 11-11-2009, 06:48 PM   #7
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Re: help

Jennybyc - your doc is one opinion and I see how you trust your doctor and that is very good. I certainly do not want to be distrespectful to you, it's just it wouldn't be accurate to say doctors will not operate for pain. In this case your doctor said they wouldn't operate for pain.

Pain is the number one driver of surgical intervention in the spine in the U.S..
In patient studies over 5-10 years they also found pain as the number one symptom that does resolve for a majority of people after surgeries such as ACDF.

My own doctor at Mayo Clinic told me that pain is the number one reason that drives people to the surgeons at their clinic. You are right, pain by itself isn't the reason to operate - it's the structural problems causing the pain.

My hope for Losing Hope here is to encourage to seek other opinions. Keeping in mind that there are many surgeons out there that will look at the whole patient and try to find a solution and not just tell them "your MRI doesn't look that bad." A good diagnosis is key to getting a good solution - surgical or not.

Last edited by PNo; 11-11-2009 at 06:50 PM.

 
Old 11-12-2009, 02:09 AM   #8
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Re: help

Thanks Jenny
new specialists (pain management) really seems on his game. Said people with fybro don't do will with those blocks (would have been nice to know that ahead of time). Anyway, he is scheduling me for a test were he will numb those facet nerves (I think I got that right) and said he is just looking for maybe one day of relief. Then he said he will know he is on the right track. He then plans on burning the nerves as you recommened. I'm very grateful for the feedback. I am also relieved but very saddened to know there are so many people in such pain. I actually had a specialists tell me I was to young to have back pain, have a good day and walked out of the room. WOW!! Then another kept pointing his finger at his head and saying we will see if you know. I was outraged and then started to wonder if maybe I was all of a sudden drama queen and they were right. Unfortunately, thinking I didn't have the pain didn't work out so well either. Anyway, I'm sticking with this doctor for a little while to see how things go and maybe we are finally on the right track. I hope your pain improves also.

 
Old 11-12-2009, 02:21 AM   #9
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Re: help

I have to work to pay the bills so I try making it without many meds. I have been taking skellaxin (up to 800 mg); actually take 2 pills while working. I can't seem to handle anyother meds and make it through the day. As soon as I get home it is straight to the ice packs and popping the others. The highest I have had for pain is loratab. It really doesn't do a whole bunch for the pain but I have learned what combinations I can safely take to just knock myself out for awhile (being I don't sleep long even with the meds) while on the ice packs. My new pain specialist is looking into burning the nerves to the facet (rheuzotimy - sp). I've been petrified of doing any real procedures to the back but at this point I'm ready to let them slice the whole thing. Thanks for input

 
Old 11-12-2009, 02:37 AM   #10
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Re: help

I hope that this is on a private thread. I haven't figured out what I am doing on this except that I'm not alone. I also hope this thread is going to Jenny. You have hit things right on the head. The tingling and numbness. Unfortunately, I have met some doctors alone the way that have told me my symptoms do not make sense. So basically I am just wanting attention I guess. I have started to dismiss those symptoms and just rub them or whatever I need to do to keep going. I don't know what is really physically possible and what isn't. I only know when I try to describe what I feel many doctors look at me as if I've lost my mind. I am having bladder surgery in a couple months. I have all 3 forms of incog. So they are putting in a sling. He has done several tests on my bladder and says it just doesn't squeeze. Does a sling sound like a good idea?? I'm worried that we are totally on the wrong path and things are going to get worse if my bladder problems might be caused by something else. Suggestions??? Thanks.

 
Old 11-13-2009, 11:56 AM   #11
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Re: help

Hi Losing Hope. No, you are posting on the regular thread that is open to everyone. If you want to talk to someone privately, you can "click" on their name in the upper left corner of their post and see if they allow private messages. If they do, then you "click" to go to the private message and write one and then click send. If you post here, it is seen.

Get your bladder problems taken care of and then see where you stand with your neck. Burning the nerves of the facet joints may help you a lot and will tell if that is the problem. I know how confusing it can be to figure out what is causing what.

Take care.................jenny

 
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