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Old 02-16-2004, 09:43 PM   #1
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Join Date: Sep 2003
Location: nj usa
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sioux-z-q HB User
I feel hopeless and need your opinions

Hi guys-
I'm upset that I'm back on this board instead of going out dancing, but I'm glad the board and you guys are there for me when the pain is just too much.

Anywho, I'm back because after my micro-d, I felt good for a while and then started to develop pain again. I did PT-made it worse. My neurosurgeon said it's sacroilitis and he gave me injections of cortisone and novocaine in my sacroiliac joints on both sides. The injections helped for about 3-4 weeks before the pain would come back. I saw him again on 2/11/04 and he said something's not right. He thought I might benefit from interbody fusion and wanted me to meet with his partner. I met with him on 2/13/04. He said if I'm in excruciating pain, fusion is always an option. BUT, he wouldn't recommend it because I'm a 25 year old woman. He said I would need a 2-level fusion at L4-5 and L5-S1 which adjoins to my pelvis and would limit my range of motion tremendously for things like childbirth (I don't have any kids yet, but look forward to it someday). He also said it causes a lot of strain on adjoining discs. So, my perfectly good L3-4 disc could potentially become herniated and then I have a new problem. He said if I could hold out for a year or two, they're going to be coming out with artificial disc replacements and he thought it would work great for me. He said in the mean time, I could try transforaminal epidural injections at L4-5 to try to reduce my pain.
Here's where I get depressed........
I'm gonna go for the epidurals, but I'm not feeling hopeful. I've had a total of 11 epidurals in the past and they only worked on my L5-S1 herniation, but not L4-5. If it reduces my pain, I'll be ecstatic. If not, then what? I'm not sure I can wait 2 years. I'm sure you all know when you're in pain, a day can feel like an eternity. Perhaps if there was a guarantee that the FDA would definitely approve it on a certain date, I could begin the countdown. But, knowing the way the FDA works, I can see 2 years turning into 4 and I know I can't wait that long. I would like to have my first child by at least 30 and I'll be 26 in April. I know I couldn't carry a preganancy with my current pain, so what do I do?
My other gripe is if I do wait for ADR, I can't work in the mean time. I was almost fired from my last job because I was using too many sick days. I went on disabilty before I was fired, but in NJ, disability only lasts 6 months and has since expired. I've tried finding a job since then and am having a lot of difficulty. I tried collecting unemployment, but they said I had too many physical limitations to work. If I do find a job, there's always the fear of losing it because my back pain could decide to come to work with me on any given day. So, money is getting very tight at this point, which is obviously very stressful, both on me and my marriage. My husband doesn't quite understand why I can't just try to ignore the pain and get a job. (Non-sufferers never quite understand).
My back has taken my life away. I had a wonderful job making very good money and now I'm counting pennies. I'm tired of my back determining the outcome of my life.
Thank you very much reading my EXTREMELY long complaint list. I guess I needed to vent more than I thought I did.
I would like to know what you guys think-have any of you gone for the fusion and regretting it? Is anyone else holding out for and ADR-if so, what do you know about it?
I'm so stressed about the whole thing.
Thank you~Sioux-z-q
__________________
1996-herniated L5-S1-had epidurals x 5-relieved leg pain
2002-herniated L4-L5-had physical therapy and epidurals x 6-no relief
9/2/03-microdiscectomy at L4-L5
10/26/03-started experiencing lower back pain w/ leg numbness and tingling again

 
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Old 02-16-2004, 10:35 PM   #2
Mart7
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Posts: n/a
Re: I feel hopeless and need your opinions

I am sorry for all that you are going through. Like you I had initial success from my microdiscectomy I had in 1999 -- actually I was blessed; because I was painfree until 2003. I have since found out I have DDD, arthritis of the spine, and now a collapsed disc (L-4/L-5 region) and am seeing an orthopedic surgeon and fusion surgery is probable within the next month. Anyway, I am sorry to digress... but I just want you to know I totally can relate to your frustration. Anyway, since you don't qualify for worker's disability (since you are classified as too disabled to work) shouldn't you qualify under SSDI (Social Security Disability Insurance)? Especially, since you have been classified as too disabled to work ANY job. That is the basic criteria that SSDI is that you are diabled from perfroming any occupation. I have systemic lupus and have had to be on SSDI since 1999. The reality is I left a 15 year career in management due to my illness and have had to rely on SSDI and Long Term Disability; I would have rather been healthy and able to work, but I am grateful to have this to help support my family -- without out it we would have lost so much. Anyway, I wish just curious, (I hope it is okay that I brought this up), but it does seem like you should be eligible for SSDI at this point.) Since I have not had my surgery yet, I am not sure what my outcome will be; however it has to be better then what I am experiencing now -- so I am certainly understandig what you are feeling. I am sure there are a lot of people very knowledgeable about fusion who will have some great input for both of us! You are in my thoughts. Please keep us posted on how you are doing.
-MJ

Last edited by Mart7; 02-16-2004 at 10:41 PM.

 
Old 02-17-2004, 05:59 AM   #3
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Join Date: Nov 2003
Posts: 590
Mistina HB User
Re: I feel hopeless and need your opinions

I just wanted to tell you that your not alone by any means. I can totally relate to the fear and anxiety that goes along with all this. I am only 28 and am terrified of the future. Fortunate for me, I can still manage to make it to work everyday which has probably saved my relationship with my fiancee. We have been through a rough road as my problems are never ending also.
I have faced the fact that I will never carry children. I tell my fiance that but he is still in denial but I think he really does know.
It is very tough to go through. Especially when you had a surgery that you thought would change your life. In which I had a laminectomy on L4 and a discectomy at the same time. I still have problems and can't do much of anything but I'm not in alot of pain unless I do something to get myself there.
I just wanted to say that there are alot of understanding people on this board and we are here to vent to and lend advice.
In you situation I would think over your options and decide what is best for you. If you just can't deal with the pain anymore and know that the chances of relief are greater with fusion than without than you will decide what is best.
There are successful fusions too. You hear alot of negativity on the boards because everyone is coming here for advice, you just never seem to hear about the positive outcomes. They ARE out there.
I wish you luck and keep us posted on what you decide!!
Christina

Last edited by Mistina; 02-17-2004 at 06:00 AM.

 
Old 02-17-2004, 07:22 AM   #4
Junior Member
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Join Date: Sep 2003
Location: nj usa
Posts: 29
sioux-z-q HB User
Re: I feel hopeless and need your opinions

Thank you both for replying! It means so much that you guys are out there listening.
Mart-It's funny you should mention the SSDI because I'm actually in the process of filling out the 845 million page form required to apply. I'm hoping it will be my saving grace. It's very tough for me to do though, as I'm sure it was for you.
My husband is a plumber. He works 60-70 hours/week and obviuously comes home exhausted. I come from a family that started a business from the ground up 20 years ago and has put a lot of blood, sweat, and tears into the venture. My brother is an auto mechanic who is in the process of building his own garage to open for business.
And then there's me.....
I know I shouldn't feel bad, but I feel like I'm milking the system. At the end of the day when my husband comes home exhausted, I feel pathetic that MY back hurts from watching TV all day. I want something tangible to show for my pain and tears. I know SSDI is there for people like us, but I didn't want to apply because I'm stubborn. I thought I could suck it up and try to get through life without relying on the government, but I'm throwing in the towel at 25 and I feel pathetic and like a failure.
I'm hoping it will all be temporary and within 5 years, my back will be fixed (fingers crossed), but I do feel like I'm losing valuable time now.
Mart-I assume you're on permanent disability due to the lupus (which I'm sorry to hear about-like a back problem's not enough!). I'm applying for the temporary version. Did you encounter any obstacles that I should look out for? I hope it will all be smooth sailing, but we'll see.
Thank you all again!!! ~Sioux-z-q
__________________
1996-herniated L5-S1-had epidurals x 5-relieved leg pain
2002-herniated L4-L5-had physical therapy and epidurals x 6-no relief
9/2/03-microdiscectomy at L4-L5
10/26/03-started experiencing lower back pain w/ leg numbness and tingling again

 
Old 02-17-2004, 08:09 AM   #5
Inactive
 
Join Date: Nov 2003
Posts: 64
Pippin HB User
Re: I feel hopeless and need your opinions

Dear Sioux-z-q,

I just wanted to address some of the things you've said about your self-image and self-confidence.

It seems that many of us on this board are over-achievers and/or come from families or situations where achievement is expected. Many of us are accustomed with taking responsibility for ourselves; for bucking up and overcoming whatever is thrown at us; to win no matter what the obstacles.

Therefore, it is natural to feel guilty about having a physical problem. It makes you feel that you are not contributing, that others are suffering because you can't be there for them. Maybe you feel you aren't living up the expectations of your family or that you're a failure at facing adversity or that you aren't handling your problems gracefully. That makes you angry, sad, ashamed, and afraid. And those feelings are strange to you and therefore difficult to accept.

I'm not a psychologist. I've just been there. What you are experiencing are the stages of grief -- you've lost something that was very dear to you: your independence and strength. It is very hard to make sound decisions when your emotions are wrapped up in this grief process.

I think I've made it through the really bad parts of that process. I did it by trying to keep a healthy perspective on my problems (others are much worse), by not cutting myself off from others (even though I would sometimes break down in front of others, something that makes me very vulnerable and makes me very uncomfortable), by communicating my feelings to those closest to me, and finding things I CAN do to contribute (like designing a flyer for a local charity -- all done at the computer).

You've probably been accustomed to measuring yourself and your achievements by looking at what you've done and comparing it to others. Perhaps your family has rewarded you (praise, etc.) for your achievements. Now you may feel that you'll never achieve again.

But there is life after a spinal problem. Do not give up on yourself. You need to let yourself get through this grieving process and not deny your feelings, or your right to feel the way you do. Look at who you are -- inside -- and what you have to offer your family and community. Of course you can't contribute the way you used to, and right now you need to spend a lot of time on yourself and your needs. Does that mean you can't contribute at all? Of course not.

Hang in there. Perseverance. We all want you to be successful. And you will be.

 
Old 02-17-2004, 04:07 PM   #6
Mart7
Guest
 
Posts: n/a
Re: I feel hopeless and need your opinions

[QUOTE=sioux-z-q] Mart-I assume you're on permanent disability due to the lupus (which I'm sorry to hear about-like a back problem's not enough!). I'm applying for the temporary version. Did you encounter any obstacles that I should look out for? I hope it will all be smooth sailing, but we'll see.
Thank you all again!!! ~Sioux-z-q[/QUOTE]

Yes, I am on permanent disability and actually got approved fairly quickly and received payments retroactive to the date when I was first classified as too disabled to work; so hopefully that will case with you! It would seem that should definitely qualify for temporary status since you are classified as too disabled to work. I agree with everything Pippin said so eloquently .. it is so easy to start feeling negative about ourselves or feel like we are not contributing to society or our homes like we should. But, it is important to remember all have done to contribute in the past and what we likely contribute in the future (and what we probably are contributing now and don't even give ourselves credit for). I hope I don't sound like I am rambling .. but believe me, I have had the same feelings you are having ... overwelming guilt. Please, try not to do that to yourself .. just focus on yourself and ensuring you get all the help you need to ensure your back improves. As I said before; please keep us posted on how you are doing. You have a lot of support here!
-MJ

 
Old 02-17-2004, 04:29 PM   #7
Newbie
 
Join Date: Feb 2004
Location: Florida
Posts: 4
Mocha HB User
Re: I feel hopeless and need your opinions

[QUOTE=sioux-z-q]Hi guys-
I'm upset that I'm back on this board instead of going out dancing, but I'm glad the board and you guys are there for me when the pain is just too much.

Anywho, I'm back because after my micro-d, I felt good for a while and then started to develop pain again. I did PT-made it worse. My neurosurgeon said it's sacroilitis and he gave me injections of cortisone and novocaine in my sacroiliac joints on both sides. The injections helped for about 3-4 weeks before the pain would come back. I saw him again on 2/11/04 and he said something's not right. He thought I might benefit from interbody fusion and wanted me to meet with his partner. I met with him on 2/13/04. He said if I'm in excruciating pain, fusion is always an option. BUT, he wouldn't recommend it because I'm a 25 year old woman. He said I would need a 2-level fusion at L4-5 and L5-S1 which adjoins to my pelvis and would limit my range of motion tremendously for things like childbirth (I don't have any kids yet, but look forward to it someday). He also said it causes a lot of strain on adjoining discs. So, my perfectly good L3-4 disc could potentially become herniated and then I have a new problem. He said if I could hold out for a year or two, they're going to be coming out with artificial disc replacements and he thought it would work great for me. He said in the mean time, I could try transforaminal epidural injections at L4-5 to try to reduce my pain.
Here's where I get depressed........
I'm gonna go for the epidurals, but I'm not feeling hopeful. I've had a total of 11 epidurals in the past and they only worked on my L5-S1 herniation, but not L4-5. If it reduces my pain, I'll be ecstatic. If not, then what? I'm not sure I can wait 2 years. I'm sure you all know when you're in pain, a day can feel like an eternity. Perhaps if there was a guarantee that the FDA would definitely approve it on a certain date, I could begin the countdown. But, knowing the way the FDA works, I can see 2 years turning into 4 and I know I can't wait that long. I would like to have my first child by at least 30 and I'll be 26 in April. I know I couldn't carry a preganancy with my current pain, so what do I do?
My other gripe is if I do wait for ADR, I can't work in the mean time. I was almost fired from my last job because I was using too many sick days. I went on disabilty before I was fired, but in NJ, disability only lasts 6 months and has since expired. I've tried finding a job since then and am having a lot of difficulty. I tried collecting unemployment, but they said I had too many physical limitations to work. If I do find a job, there's always the fear of losing it because my back pain could decide to come to work with me on any given day. So, money is getting very tight at this point, which is obviously very stressful, both on me and my marriage. My husband doesn't quite understand why I can't just try to ignore the pain and get a job. (Non-sufferers never quite understand).
My back has taken my life away. I had a wonderful job making very good money and now I'm counting pennies. I'm tired of my back determining the outcome of my life.
Thank you very much reading my EXTREMELY long complaint list. I guess I needed to vent more than I thought I did.
I would like to know what you guys think-have any of you gone for the fusion and regretting it? Is anyone else holding out for and ADR-if so, what do you know about it?
I'm so stressed about the whole thing.
Thank you~Sioux-z-q[/QUOTE]

Hi! I didn't read all of your post, but you need to get the book, Pain Free: A REvolutionary Method for Stopping Chronic Pain. Pete Egoscue is the author.
He's an anatomical physiologist who is right on target. I was more or less on my back for 18 years, and now I'm walking my dogs 5 miles a day 7 days a week. I'd walk em even more, but I have other interests too--like Yoga, and that takes an hour and a half to 2 and a half hours a day--because I really enjoy it. He has at least two pain clinics. The last time I looked a guy who was hiking in the Himalayas was thanking him for making it posssible. But get the book, read the first three chapters and then start doing the e cises It's all a matter of alignment! But we got to work at it--but it's not difficult. It takes Pete about two hours to get you out of extreme pain. Check it out. Your library has it.

Last edited by moderator2; 02-17-2004 at 04:49 PM. Reason: Books by title and author only please. Not allowed to post any kind of off-board contact information. Please carefully read, know and follow the Policies and Guidelines. Click FAQ at top left of page.

 
Old 02-17-2004, 04:40 PM   #8
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Join Date: Jan 2002
Location: Dresden OH
Posts: 386
Mary Anne9998 HB User
Re: I feel hopeless and need your opinions

I agree with Pippin. And your success might not be in exactly what you had in mind, but you have the ability to succeed in many things. We all do

 
Old 02-17-2004, 05:54 PM   #9
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Join Date: Sep 2003
Location: nj usa
Posts: 29
sioux-z-q HB User
Re: I feel hopeless and need your opinions

Thank you all for responding!
Pippin-You're right about quite a few things. I AM definitely grieving over a life lost (or temporarily on hold). I should have explained in the first place that I'm an artist and a welder (both for fun) and wanted to make it my full-time career building and welding custom metal furniture. There's no way I can do this with my back-I've tried. So, I stare at my sketches of project plans and can't do anything about it. I know I will build the furniture someday, but I feel like my back's winning and that's not fair. And I feel like my art is now dependent on when the FDA wants to approve ADR.
Fortunately, my family is extremely supportive and expects nothing of me, even if I was healthy. So, it's not the stress of letting anyone down. I just feel like the clock's ticking and I'm treading water, watching others around me move freely. And it's simply frustrating. I haven't by any means given up hope. I have more things than I can count that I'm thankful for. I just need to vent sometimes. And I appreciate you all for listening!
Back to the back- Has anyone had an ADR or know someone who has?
I would like to know if it's worth waiting for or if I should just dive into a fusion.
~Sioux
__________________
1996-herniated L5-S1-had epidurals x 5-relieved leg pain
2002-herniated L4-L5-had physical therapy and epidurals x 6-no relief
9/2/03-microdiscectomy at L4-L5
10/26/03-started experiencing lower back pain w/ leg numbness and tingling again

 
Old 02-17-2004, 06:16 PM   #10
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Join Date: Jan 2002
Location: Dresden OH
Posts: 386
Mary Anne9998 HB User
Re: I feel hopeless and need your opinions

Just wanted to say be very cautious having a fusion done because once it is done it can't be undone, it is permanent. Research, research , research. Check out other options. In my opinion, physical therapy seems to be a waste of time. But there are many pain management options and you need to read on here and anywhere you can about other things you can have done first before the final decision of fusion.

 
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