It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arachnoiditis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 12-20-2011, 12:15 PM   #1
Senior Member
(female)
 
Join Date: Oct 2010
Location: Nashville tn
Posts: 102
musiccitygirl HB Usermusiccitygirl HB Usermusiccitygirl HB User
Constant pain but, why?????

This is a piggy back off of my last post, "Continued pain 1 year post two level lumbar fusion." I want to hear any other stories of people who have had surgery to fix there back conditions and a year or more later still have continued pain but, the imaging shows everything is fine. My hardware is in place, no adjacent disease but, still very painful in my low back. Feels like pressure, and like I have a brick in my lower back. I have some hip and thigh pain as well. How many of you are still in pain and what have you decided to do about it. I am able to work full time and live my life but, I hate the level of pain and being prisoner to pill popping all day long. Share your story with me. Thanks
Heather

 
Reply With Quote
Sponsors Lightbulb
   
Old 12-20-2011, 03:49 PM   #2
Member
(female)
 
Join Date: Dec 2010
Location: Longview, TX, USA
Posts: 74
carolaann HB User
Re: Constant pain but, why?????

Hi Heather,

I'm there with you. My surgery was Jan. 17, 2011, a 5 level fusion, 12 hours long to correct my scoliosis. I'd already had 3 other unrelated back surgeries, all successful.

My pain is lower back, groin, and hip - - sometimes thigh pain but not always. I see a pain management doctor and I'm on oxycodone and fenatyl patch which pretty much keep the pain under control but only if I'm not up too much or do too much. I'm retired, but there's no way I could hold down a job. And like you, I hatethe thought of being dependent on meds for the rest of my life. I've also gained weight because of this enforced sedentary lifestyle.

I see my neurosurgeon for a follow-up visit the end of this month and intend to ask him what my prognosis is. I know my hardware is all in place because of x-rays but I haven't had any MRIs, etc., since my surgery. I have had several procedures done by my pm doctor, but none have helped.

I also hope to hear from any others like us. Surely we aren't alone.

Hang in there . . .

 
Reply With Quote
Sponsors Lightbulb
   
Old 12-20-2011, 07:28 PM   #3
Senior Member
(male)
 
Join Date: Feb 2010
Posts: 190
parman HB Userparman HB Userparman HB User
Re: Constant pain but, why?????

Heather, I know exactly what you are talking about. Everything you said fits me except I can't work. My right quad pain is so bad that I can't hardly walk. My job requires me to be on concrete for 10 hrs. I have only worked 4 months this year.

I'm considering accupuncture if the chiropractor thinks it will help me at all. Probably won't know until after the 1st of the year.

I e-mailed my surgeon yesterday letting him know that I have gotten worse since my last visit with him which was 6 weeks ago. He called me this afternoon and said for me to come in and see him on thursday of this week. He says we will work out a plan. Don't know what that would be but I'm willing to do almost anything at this point.

It's a shame they can put a man on the moon but they can't fix bad backs. If there is a miracle out there for me I will sure let you know.

Try to have a Merry Christmas and a Happy New Year.

 
Reply With Quote
Old 12-22-2011, 12:01 PM   #4
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,732
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: Constant pain but, why?????

I'm a bit perplexed by your post. I went back and read through your posts from the surgery, and it seems to me that other than the first weeks when you thought you were doing great and were walking 2 miles on a treadmill, you have continued to have pain. You didn't gradually start to get better for several months, and then suddenly, things took a turn for the worse. I remember you having a rough time of it when you went back to work...and it seems like that has just continued on up to the present. Would that be right, or am I misunderstanding your situation?

Would you say you are in a lot more pain than say, about 4 months post surgery?

What does your surgeon say at this point? Have you talked to him about having a hardware block to see if hardware might be causing your pain?

 
Reply With Quote
Old 12-30-2011, 12:46 PM   #5
Senior Member
(female)
 
Join Date: Oct 2010
Location: Nashville tn
Posts: 102
musiccitygirl HB Usermusiccitygirl HB Usermusiccitygirl HB User
Re: Constant pain but, why?????

TT,
I am not sure why you would be perplexed? I just wanted to hear others experiences at a year post op. Are others feeling the same as me, it is nice to know I am not alone. My CAT scan was perfectly normal and my NS just wanted to refer me to PM which I am already in. Yes, I probably went back to work too early but, I fuel a family of 4 and I had no choice. All I know is my pain is bad, I honestly cant remember if it is better or worse than at 4 months. But, it is worse than before my surgery. It is in my lower back and has been moving to my hips. It sucks and I have very little time to figure it all back when I am basically working 12 hour days with commute. I have no choice but, to work!!!! My husband is such a huge support, and I could not ask for more only if he made more $$$$$. But, if he made more money, he probably would not have the time to be so supportive and such a great Dad.
Parman, I may need a referral to your Dr.
Heather

 
Reply With Quote
Old 12-30-2011, 09:46 PM   #6
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,732
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: Constant pain but, why?????

I guess "perplexed" wasn't the correct word to use. I understood why you had to go back to work when you did....I'm sorry if my comment offended you. I didn't mean it that way.

The reason I asked about the 4 month mark is that often, when a patient gets through what he/she knows is probably surgical pain and starts to make progress toward healing for several months, and then suddenly starts to notice the pain increasing, it is often a sign that scar tissue has developed around one or more spinal nerves.

If, once the patient has gotten through the immediate post surgical period, the symptoms of pain are very similar to what was experienced prior to surgery, it often means that there is still some mechanical reason for the pain. Perhaps the wrong level was operated on, or an additional level is still causing pain or there is a blockage in the lateral recess that was "cleaned out," etc.

At one year, if a surgery is going to be successful (from the patient's point of view, not a medical definition of "success") the patient is mostly pain-free or at least there is continual progress toward resolution.

What happens fairly often when there are continuing symptoms, the surgeon tells the patient that it takes the nerves a long time to recover, to give it time, etc. Then, at the one year check-up, if everything looks normal on MRI or CT scan, and the patient is still in pain, the patient is discharged from the surgeon and told to seek pain management...that there is nothing more the surgeon can do.

I have had both experiences. With my first fusion, I fairly early felt something wasn't quite right. My sciatic issues never resolved and I developed a pain in my thigh that had not been there previously, prior to surgery. It took 18 months longer to determine what was causing the pain and to convince my surgeon there was a "fixable" reason for it. The immediate reaction when the MRI looks normal is to refer to pain management. They want the patient to "try" a spinal cord stimulator (Neurostimulator), etc.

I had a second fusion 18 months later...and four days post surgery, I knew they had finally treated the right thing, and despite the surgical pain, I felt pain-free. The second fusion uncovered a serious problem that had not been visible on any imaging...and the surgery ended up being more complex than what we had expected. I am now 18 months post surgery and I just realized the other day (with all the Christmas prep stuff that I haven't been able to do for the last 5 years), that I am still improving. I am still getting stronger and in better shape, and am able to do more, even though at a year, I thought I had "recovered."

I think at a year, if your surgeon is not still actively treating you, it might be time to seek a second opinion to see if there might be something else going on. Even though I stayed with my surgeon, I sought opinions from about six other neurosurgeons and ortho spine surgeons during the period between my two fusions. I think it is helpful to get another set of eyes looking at your problem. Doctors tend to go with the most obvious diagnosis and then tend to stop thinking "what else could be causing her pain?"

After going to a variety of specialists for over two years, having numerous tests, and imaging, diagnostic nerve blocks and injections, etc., my "pain generator" turned out to be a surprise that was only discovered after the surgeon had my back open on the operating room table.

I was very lucky, but it did take a great deal of perseverance, time, research, and creativity to finally get treated. If I had listened to each of my two surgeons who told me "maybe this is as good as it's going to get..."
I often wonder where I would be today.

Happy New Year. I hope 2012 is a better year for you.

TT

 
Reply With Quote
Old 06-02-2012, 05:10 PM   #7
Newbie
(male)
 
Join Date: Jun 2012
Location: Winter Garden, FL, USA
Posts: 1
anotherSeeker HB User
Re: Constant pain but, why?????

Quote:
Originally Posted by teteri66 View Post
I guess "perplexed" wasn't the correct word to use. I understood why you had to go back to work when you did....I'm sorry if my comment offended you. I didn't mean it that way.

The reason I asked about the 4 month mark is that often, when a patient gets through what he/she knows is probably surgical pain and starts to make progress toward healing for several months, and then suddenly starts to notice the pain increasing, it is often a sign that scar tissue has developed around one or more spinal nerves.

If, once the patient has gotten through the immediate post surgical period, the symptoms of pain are very similar to what was experienced prior to surgery, it often means that there is still some mechanical reason for the pain. Perhaps the wrong level was operated on, or an additional level is still causing pain or there is a blockage in the lateral recess that was "cleaned out," etc.

At one year, if a surgery is going to be successful (from the patient's point of view, not a medical definition of "success") the patient is mostly pain-free or at least there is continual progress toward resolution.

What happens fairly often when there are continuing symptoms, the surgeon tells the patient that it takes the nerves a long time to recover, to give it time, etc. Then, at the one year check-up, if everything looks normal on MRI or CT scan, and the patient is still in pain, the patient is discharged from the surgeon and told to seek pain management...that there is nothing more the surgeon can do.

I have had both experiences. With my first fusion, I fairly early felt something wasn't quite right. My sciatic issues never resolved and I developed a pain in my thigh that had not been there previously, prior to surgery. It took 18 months longer to determine what was causing the pain and to convince my surgeon there was a "fixable" reason for it. The immediate reaction when the MRI looks normal is to refer to pain management. They want the patient to "try" a spinal cord stimulator (Neurostimulator), etc.

I had a second fusion 18 months later...and four days post surgery, I knew they had finally treated the right thing, and despite the surgical pain, I felt pain-free. The second fusion uncovered a serious problem that had not been visible on any imaging...and the surgery ended up being more complex than what we had expected. I am now 18 months post surgery and I just realized the other day (with all the Christmas prep stuff that I haven't been able to do for the last 5 years), that I am still improving. I am still getting stronger and in better shape, and am able to do more, even though at a year, I thought I had "recovered."

I think at a year, if your surgeon is not still actively treating you, it might be time to seek a second opinion to see if there might be something else going on. Even though I stayed with my surgeon, I sought opinions from about six other neurosurgeons and ortho spine surgeons during the period between my two fusions. I think it is helpful to get another set of eyes looking at your problem. Doctors tend to go with the most obvious diagnosis and then tend to stop thinking "what else could be causing her pain?"

After going to a variety of specialists for over two years, having numerous tests, and imaging, diagnostic nerve blocks and injections, etc., my "pain generator" turned out to be a surprise that was only discovered after the surgeon had my back open on the operating room table.

I was very lucky, but it did take a great deal of perseverance, time, research, and creativity to finally get treated. If I had listened to each of my two surgeons who told me "maybe this is as good as it's going to get..."
I often wonder where I would be today.

Happy New Year. I hope 2012 is a better year for you.

TT
I have had one back surgery (which I consider a success) but may need another for a similar issue which appeared about a year later.

This is probably straying a little but would you please amplify on the ' "pain generator" [that] turned out to be a surprise that was only discovered after the surgeon had my back open on the operating room table.'

 
Reply With Quote
Old 06-02-2012, 10:13 PM   #8
Senior Veteran
(female)
 
Join Date: Nov 2010
Location: USA
Posts: 6,732
teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
Re: Constant pain but, why?????

I had both prone (lying down) and positional (sitting and standing) MRIs and numerous diagnostic nerve blocks and nothing revealed that my facet joints at L3 had worn away and were no more than little nubs. This was creating a good deal of instability and was allowing my spine to move in ways that nature had not intended. No one had a clue that these joints were so diseased. Also my pattern of nerve pain did not indicate that my issues were coming primarily from a L3 nerve compression. It seemed much more typical of a L5 or S1...so...there wasn't really any imaging that indicated I had problems at L3, and my primary neurologic pain was in a location that did not clue us in on involving the L3 nerve....

My insurance carrier also denied covering the surgery citing no evidence of "medical necessity." When their doctor reviewed the MRI after talking with my surgeon, he also said there were no indications of nerve compression and upheld the decision.

So, the very diseased and damaged facets were my unknown pain generator.

Four days after my three level fusion, my leg pain went away...and all the trials and tribulations were worth it.

 
Reply With Quote
Old 06-03-2012, 12:34 PM   #9
Facilitator
(female)
 
Moldova's Avatar
 
Join Date: Dec 2006
Location: N.J.
Posts: 3,654
Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
Re: Constant pain but, why?????

Dear Heather,

my heart goes out to you and other people who shared their pain here. I wish one day they would find a better way to "fix" our backs b/c what I see now is not working for so many of us.
I am not sure if I can share "MY ALL" with you (to make people depressed not my intend), but something I can do.
I had my first infusion 03/2006 and was told my surgery will be only 6 hr and i will be back to work in 8 weeks. Surgery was 10 + hour; 6 month later asked my surgeon when my dropped foot goes back to normal; why i am having so much pain; when i will get better? His answer was: "What do you want? You had very big surgery and you cant expect to recover before 1 year at least".
3 Spinal doctors told me same thing: be patient and wait at least a year.

By 8th month of my "recovery", I feel I develop more and more pain, food gets worse as well. Go for second opinion and again: wait until 1 year. Make long story short: they sent me to be under Pain mgmt DR. who puts me on regiment of opiates around the clock: LA and BT .

First surgery left me with bowel/bladder dysfunction, dropped foot, so much pain. Earlier athletic person ended up walking with walker or cane, depends on a day.
A year later, I had my second fusion, but now on higher levels. I was told when we have spinal fusions, often upper/lower levels may suffer. Even little bending (I was told to never fully bend ever), turning or carrying, reaching for higher shelves may put strength on other levels and they may crack or "give up". Happened to me and I had again spinal fusion.
During surgery my second surgeon saw how well my first surgery fused and it didn't show any problems. Where did pain come from than???
Both of my surgeries were done by very professional, well known surgeons and yet, I am an invalid. Permanent disability.

I don't blame anyone. When we go for spinal surgeries, we sign papers that we know what may happen to us. They work on very important part of our body and one wrong move, people may left paralyzed even.
I wasn't paralyzed.
But 30 min after spinal fusion, in recovery room I developed heart failure and pneumonia same time. After first surgery I need blood transfusion for 4 days . This is the price I paid to get better, I wanted to have normal back thus life.
This wasn't it though. I had so much pain; leg got worse, walking for more than 30 min is impossible.
I was told by a very famous spinal surgeon from NYC (HSS) that more spinal surgeries one has - weaker spine becomes and more complications may be.
It took me time to finally be diagnosed with ARACHNOIDITIS (ARC), which is severe scarring of spinal cord and nerves. Not curable, not treatable.
It may happen during serious spinal surgery where blood ends up in a sack where not suppose to be causing this condition.
ARC progresses, not staying the same; spreads to limb, organs which attached to the nerves coming from spine (bowel, bladder). No drugs can stop the pain completely and longer time from surgery, more scarring - more pain and less medicine takes the edge off. Ideal, they are not allowed to operate on someone with ARC since condition worsens causing even more scarring.

A month ago I had another scanning done due to pain spreading to my hips, legs (in all 4 sides inside/outside) feet. It showed I need another surgery done to stop the process of further damage. This time I need to have again on Lumbar area + neck area since I have many issues in there too but due to ARC they try not to operate on me, but since I need lumbar surgery anyway, they would do C-levels as well.

Aren't you happy you asked? LOL

Nerves which get involved during spinal surgeries, get very swollen, especially nerve roots. I was told it really can take up to a year for them to come down. I feel for you dear, but it could be still due to your healing. But my good advice to you: if you not healing, even if all your tests show no problem, you just take all your pictures and reports and go to see someone really knowledgeable at good teaching hospital.
Not every surgeon tells you the truth when you complain about your pain that MRI, Myelogram, CT, EMG and even discogram not 100% accurate tests and that some problems may never show there. It takes a very experienced, honest, good professional who will talk to your honestly.
It took me 2 years until I got someone who really told me what to expect, what area needs to be checked, what this can be. Otherwise most of us slip through the cracks.
Feel free to ask me any questions. I was on your place now knowing what is going on and I still remember how I appreciated any input from someone who "been there-done that".

All the best to you
Moldova

 
Reply With Quote
Old 03-21-2014, 07:01 PM   #10
Newbie
(male)
 
Join Date: Dec 2013
Location: San Jose CA
Posts: 4
velo77 HB User
Re: Constant pain but, why?????

Your posts are most helpful and informative.

at 4.5 months post three level lumbar fusion L3-S1, I am still in more pain than prior to surgery. Three-month x-ray looked normal with healthy bone growth, somewhat slower and lower level, but as expected.

Been working full-time from home since two weeks post-op. And recently three days a week part-time in the office, basically "gutting" it out with no meds while at the office. Topical lidocaine patch does seem to help during the day.

After reading your post, I will seek a second opinion.

Thanks again,
Keith

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
hi new here and in constant pain shelsers75 Arachnoiditis 4 01-29-2011 04:04 AM
Good CT scan but constant pain CL in Austin Back Problems 3 04-28-2010 08:07 AM
Need help!!! lower back pain with constant heel pain both feet!! mldman75 Back Problems 13 10-07-2009 11:17 AM
MRI & EMG results, Please help! lindabobinda Back Problems 5 03-21-2008 11:34 AM
1 year since L4-s1 fusion doc gives up /still in constant pain Michael2192 Back Problems 6 01-16-2008 09:13 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:29 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!