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  #1  
Old 03-25-2009, 02:06 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Unhappy Appt with surgeon April 1st, need some advice. Harrison-I hope you chime in!

I haven't been on in awhile. I'm not really sure why. I've been pretty depressed, and it's really taking a toll on my family life. Especially my relationship with my wife. That's not why I'm writing now though. One issue at a time, right?

I am finally almost to my appt. date to see my surgeon again on April 1st. An appointment which was made back in January if you can believe it. I had a car accident on March 3rd. Nothing too major, but enough that it certainly seems to have caused greater issues with my lower back. The other update lacking from my signature is that I have been taking Avinza (morphine) for 3 or 4 months now due to the pain becoming more intolerable.

Since the day of the accident the pain has been incredible. I am on all these narcotics and muscle-relaxants but still have great difficulty making it through a work day, or even rolling over in bed. My sciatic spasm episodes have also come back. Just quick bursts, but something I truly hadn't missed!

I was (or am - I'm not sure now) ready to visit the surgeon and tell him that if I could not have the bi-level ADR, then I want whatever surgery can actually be performed which will be covered by my insurance - the "hybrid" surgery or a fusion at BOTH levels! I've had it. Then for no reason at all, likely temporarily, my pain levels have returned to where they were before the accident today. The weather is actually nice today - could that be it?

I'm just so confused. My back pain completely controls and ruins or diminishes every aspect of my life. I work or am lying in bed unless there is something of importance to do. This is absolutely no way to live! I do not even have memories left of what it was like to exist without this pain and hinderance as part of my life.

Any suggestions on how I should address this with my surgeon? In some ways, based on my mental state, I am fearful I may get what I am asking for and then live to regret it the rest of my life.

PS - Harrison, I do hope you have time to chime in with any thoughts or advice. You've always offered meaningful posts in the past. You don't know me, but you have actually spoke with my wife Cathy in the past about me. She was way ahead of me at getting online and locating this website. It's likely been years since you two have spoke, so don't wrack your memory too much about it! Thank you for what you do for those like me.
__________________
DDD diagnosed ~99
Chronic Pain since Aug 2006
Failed L4 Microdisctectomy Apr 2007
2008-Positive Disco (L4/L5&L5/S1 annular tears)
Herniated discs at L4/L5/S1, bulging T12
Began constant/severe neck & upper back pain 11/09
Jan 10-Cervical/Thoracic MRI:bone spurs+new disc probs
Cervical Spine issues causing terrible pain beginning in July 2021 - scheduled for 2 level C-Spine ADR on Oct 19th 2021 now!! Part of Clinical Trial so unsure if Mobi-C or Baguera C will be implanted ....
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  #2  
Old 03-26-2009, 05:28 AM
kimmers kimmers is offline
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Posts: 554
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JJames,

I think I know you from somewhere.
Your name rings a bell, anyway.
Just wanted to say, Hang in There. Remember the cat, hanging for dearlife on a screen door?

I can relate to what you said: That back pain completely controls and ruins or diminishes every aspect of my life.
I am having problems after surgery when I should be back to a somewhat normal life. My pain increases and then decreases and I cannot make sense of it. I am pretty sure it stems from the level below my ADR but my MRI has just a bulge at that disc, L5/S1.
Since last night, my sciatica increased mainly in my right leg and I am wondering what is going on.
Like you, I have my surgeon appt coming up in April and I see my pain doc next week.
I am just trying to maintain things as normal as I can but I feel so disassociated from what I consider my normal life.
It is strange and I just want to have the pain decreased. I was speaking to my neighbor, who is a PT, and was stretching out my legs, about what was up with my back. She is not my regular PT and she asked me if I had been cleared to go back to work. Well, it is hard to tell people that there is no way I can work my regular job because I am having too much back and leg pain (plus there is the little thing about being terminated).

I think with back pain, people think you are ok as long as you are not using a cane, a walker or a wheelchair.
The problem is that I am far from ok. Sometimes, I can drive my car and then othertimes, I cannot get off the couch.
I was ok today but because of the sciatica, I was kind of limping. Later, after the PT treatment, I could walk without a limp but still when I was walking from a street to a sidewalk tonight, I tripped.
I go around everyday, saying, "ouch" or I grimmace. The back pain is not quite as bad as before surgery but it is getting there and the sciatica is a lot worse.
It is kind of ridiculous.

I hope you get some answers to your problems and you feel better as soon as you can. Don't be too hard on yourself. I know all this back stuff is a strain for my husband and children, but this is the way it is until I get some definitive answers.

K
__________________
hurt back lifting, herniated disc at L4/L5. DDD

Last edited by kimmers; 03-26-2009 at 05:35 AM. Reason: problems with computer and my fingers.
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  #3  
Old 03-30-2009, 01:31 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
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Hello Kimmers,
Yes we have certainly corresponded here on the boards before. I appreciate your reply and your compassion. The pain is excruciating today! Cold and rainy weather is always the worst for me. I almost wish I would get fired from my job over this. Just as you mention in regards to not using a cane, walker, etc that those who do not really know what severe back pain is like, they also assume because I take all my pain meds and somehow push through this terrible pain to make it through each day at work that it simply can't be too bad. It's so unfair. On the other hand I can't forget about my responsibility to my wife and children's financial well-being.

I just know that nothing is gonna' come from this appointment with the surgeon on Wednesday as usual. I simply don't know what to do, and it seems that there's no one who really does! I am so sorry that you were able to manage to actually have a surgical procedure which was supposed to help, and yet you are still in such pain. I worry about that being my situation as well, especially now that I've given into fighting for what the surgeon says would be the best surgery for my situation, and now have to ask him for alternate surgical solutions - a hybrid or double fusion instead of the bi-level ADR which the medical insurance refuses to pay for.

Oh well ... hope your condition improves! You hang in there too, huh? I'll try to post anything interesting which comes from this appt but I am not optimistic. Somehow I'm then leaving on a plane for Florida to attempt to walk Disneyworld with my family for 5 or six days! Lord help me!
__________________
DDD diagnosed ~99
Chronic Pain since Aug 2006
Failed L4 Microdisctectomy Apr 2007
2008-Positive Disco (L4/L5&L5/S1 annular tears)
Herniated discs at L4/L5/S1, bulging T12
Began constant/severe neck & upper back pain 11/09
Jan 10-Cervical/Thoracic MRI:bone spurs+new disc probs
Cervical Spine issues causing terrible pain beginning in July 2021 - scheduled for 2 level C-Spine ADR on Oct 19th 2021 now!! Part of Clinical Trial so unsure if Mobi-C or Baguera C will be implanted ....
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  #4  
Old 03-30-2009, 01:50 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Question What about the "Hybrid"????????

I have this appointment in a couple of days. If I can't have the bi-level ADR surgery which I am convinced is my best choice, in reading some of the post-op ADR results it seems to me that a hybrid isn't such a bad choice: Fusion at L5/S1 and ADR at L4/L5.

I know that surgeons and or spine experts are not those who are posting on the boards, but it appears that fusion doesn't sound so bad of an option at L5/S1 even on someone with DDD. I see several mentions of this area not having much movement and having the most bone to fuse to. The L4/L5 seems in my case to be the one which I don't want to create the domino-effect of issues continuing up my spine. I already show signs of future trouble headed in that direction, but I have got to do something now.

Does anyone have any thoughts or advice on this? Any obvious flaws in my thoughts? Anyone have a successful or unsuccessful Hybrid surgery?
__________________
DDD diagnosed ~99
Chronic Pain since Aug 2006
Failed L4 Microdisctectomy Apr 2007
2008-Positive Disco (L4/L5&L5/S1 annular tears)
Herniated discs at L4/L5/S1, bulging T12
Began constant/severe neck & upper back pain 11/09
Jan 10-Cervical/Thoracic MRI:bone spurs+new disc probs
Cervical Spine issues causing terrible pain beginning in July 2021 - scheduled for 2 level C-Spine ADR on Oct 19th 2021 now!! Part of Clinical Trial so unsure if Mobi-C or Baguera C will be implanted ....
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  #5  
Old 03-30-2009, 07:00 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
Red face Tough questions, but good ones for sure...

James, sorry for chiming is so late! And thanks for your kind words. Kimmers, nice thoughts and ideas as usual -- despite your troubles (so sorry).

I can only answer your questions as an active member in this community during the past four years and as a single-level ADR patient -- the outcome of what may be your future surgery is dependent on SO many factors. I think you know this already.

Regarding hybrids, the outcomes are (as mentioned before) somewhat variable. IMHO, inconclusive for myriad reasons. Some have done extremely well, others not so well -- this measured in their words describing their pain relief over a one to three year period. Perhaps some of the explanation for this is the (possible) higher risk that multilevel patients have in terms of the evolved pathology of their degenerative spine disease(s). And arthritic conditions that remain elusive or undiagnosed may be a missing piece of this terrible puzzle.

Regarding movement at L5-S1, it's most definitely there. Though comparatively small, it is important. Is there less movement? Maybe. More stress and compression? Probably. Whatever the case, it's difficult for us to "decode" what the studies are saying on this important & complicated topic.

James, have you carefully reviewed the "risks and complications" post in the Arthroplasty Central forum? This may help you articulate the "tough" questions to your doctors. If you are contraindicated for ADR, but not fusion, then some type of fusion procedure may be a good choice if you do require surgery. Perhaps you would benefit by receiving some other medical opinions?
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #6  
Old 04-02-2009, 01:30 PM
Deborah Deborah is offline
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Join Date: Sep 2008
Posts: 78
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My husband opted for hybrid surgery, even when he had a possible chance for 2 level TDR vs. hybrid. He's been in pain a long time and has had little movement in any case, so L5/S1 just made sense to him to remain stable. I don't know if his logic will hold up longterm or not, but we don't have any clinical data proving either position.

So far, he is *very* happy with having had the surgery (only one month post op now). Removing the discs seemed to be the most important issue for ending the constant pain he's had for 8 years. The dynamics of the hybrid I doubt would be apparent until after he weans from the back brace in 2 more weeks. After 3 months he'll get PT and that should give him some solid information on movement. Gentle flexing for x-rays felt like normal range to him though, and surgery looks good.

He's still on pain meds at one month. He was on heavy narcotics 24/7 prior to surgery, and he's now on a *much* lower dose. He's interested in the world around him and enjoying doing a few things that have been out of reach for him for years. Sitting through a meal, hanging some pictures, playing with our grandson, are all now possible for him.

FDA approval on multiple levels should come through... but it could be up to... 9 months from now, I think? Even after approval it can take a while to have coverage, so timing is very tough to predict. Even if he didn't personally prefer a hybrid, I think my hub would have opted for surgery now. He was 'at the end of his rope' on not living life. He couldn't do anything but try to lay flat as often as possible (which was about 23 hours a day). He's like Rip Van Winkle now... rediscovering our home for a start with short jaunts outdoors.

Debi (a very happy wife)

__________________
----------------------

Deborah

C3-5 fused 2001
Hub: C3/4 fused 2001
Hub: TDR Prodisc L4/5, Fusion L5/S1 on 3/3/2009
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  #7  
Old 04-02-2009, 02:13 PM
JJames JJames is offline
Senior Member
 
Join Date: Nov 2008
Posts: 102
Default Thanks Harrison ...

Thank you for posting, Harrison. I only wish my appointment was more exciting than a horrible, near-unbearable car ride to have some more x-rays taken and being told that we'll need to set-up yet another MRI. Apparently some medical insurance carriers are now requiring PT before an MRI can be performed according to Dr. Yue. He wrote me an Rx for 4 weeks of PT 4 times a week! I asked him if he'd lost his mind. I've tried PT at various offices at least 10 times. I cannot even move without pain and frequent sciatic spasm full-time for the last month.

In any event, I guess I won't be able to hear anything or asking any questions until that MRI has been scheduled, and the results are reviewed.

I have seen 5 different neurosurgeons in the past regarding my issues. All but one felt that anything less than the bi-level ADR was not in my best interest going forward. I have waited for about 3 and 1/2 years hoping the procedure would be approved and covered by my insurance.

I have often been told by all of the various doctors who I've seen since I was 18 years old regarding my back issues that I would know "when it was time" to have a surgical procedure to correct my problems. The time has come. If I cannot have the bi-level ADR, the Hybrid seems to be the runner up because otherwise I am going to beg for a bi-level fusion. The pain is just too much.

Thanks again. Unfortunately all I can do is wait once again.....
__________________
DDD diagnosed ~99
Chronic Pain since Aug 2006
Failed L4 Microdisctectomy Apr 2007
2008-Positive Disco (L4/L5&L5/S1 annular tears)
Herniated discs at L4/L5/S1, bulging T12
Began constant/severe neck & upper back pain 11/09
Jan 10-Cervical/Thoracic MRI:bone spurs+new disc probs
Cervical Spine issues causing terrible pain beginning in July 2021 - scheduled for 2 level C-Spine ADR on Oct 19th 2021 now!! Part of Clinical Trial so unsure if Mobi-C or Baguera C will be implanted ....
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  #8  
Old 04-02-2009, 02:35 PM
JJames JJames is offline
Senior Member
 
Join Date: Nov 2008
Posts: 102
Default Debi - It's so nice to hear good news!

Quote:
Originally Posted by Deborah View Post
My husband opted for hybrid surgery, even when he had a possible chance for 2 level TDR vs. hybrid. He's been in pain a long time and has had little movement in any case, so L5/S1 just made sense to him to remain stable. I don't know if his logic will hold up longterm or not, but we don't have any clinical data proving either position.

So far, he is *very* happy with having had the surgery (only one month post op now). Removing the discs seemed to be the most important issue for ending the constant pain he's had for 8 years. The dynamics of the hybrid I doubt would be apparent until after he weans from the back brace in 2 more weeks. After 3 months he'll get PT and that should give him some solid information on movement. Gentle flexing for x-rays felt like normal range to him though, and surgery looks good.

He's still on pain meds at one month. He was on heavy narcotics 24/7 prior to surgery, and he's now on a *much* lower dose. He's interested in the world around him and enjoying doing a few things that have been out of reach for him for years. Sitting through a meal, hanging some pictures, playing with our grandson, are all now possible for him.

FDA approval on multiple levels should come through... but it could be up to... 9 months from now, I think? Even after approval it can take a while to have coverage, so timing is very tough to predict. Even if he didn't personally prefer a hybrid, I think my hub would have opted for surgery now. He was 'at the end of his rope' on not living life. He couldn't do anything but try to lay flat as often as possible (which was about 23 hours a day). He's like Rip Van Winkle now... rediscovering our home for a start with short jaunts outdoors.

Debi (a very happy wife)

Debi -
I am very happy to hear that your husband is recovering well from his surgery. It sure sounds like it was the correct "fit" for his particular condition. Although I am still seeking the correct one for me, it is always so comforting to hear stories about successful back surgeries!

I certainly hope the rest of his recovery is positive and quick.
Jeff
__________________
DDD diagnosed ~99
Chronic Pain since Aug 2006
Failed L4 Microdisctectomy Apr 2007
2008-Positive Disco (L4/L5&L5/S1 annular tears)
Herniated discs at L4/L5/S1, bulging T12
Began constant/severe neck & upper back pain 11/09
Jan 10-Cervical/Thoracic MRI:bone spurs+new disc probs
Cervical Spine issues causing terrible pain beginning in July 2021 - scheduled for 2 level C-Spine ADR on Oct 19th 2021 now!! Part of Clinical Trial so unsure if Mobi-C or Baguera C will be implanted ....
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  #9  
Old 04-03-2009, 10:59 AM
Sandra D Sandra D is offline
Junior Member
 
Join Date: Feb 2009
Posts: 11
Default

Quote:
Originally Posted by kimmers View Post
JJames,

I think I know you from somewhere.
Your name rings a bell, anyway.
Just wanted to say, Hang in There. Remember the cat, hanging for dearlife on a screen door?

I can relate to what you said: That back pain completely controls and ruins or diminishes every aspect of my life.
I am having problems after surgery when I should be back to a somewhat normal life. My pain increases and then decreases and I cannot make sense of it. I am pretty sure it stems from the level below my ADR but my MRI has just a bulge at that disc, L5/S1.
Since last night, my sciatica increased mainly in my right leg and I am wondering what is going on.
Like you, I have my surgeon appt coming up in April and I see my pain doc next week.
I am just trying to maintain things as normal as I can but I feel so disassociated from what I consider my normal life.
It is strange and I just want to have the pain decreased. I was speaking to my neighbor, who is a PT, and was stretching out my legs, about what was up with my back. She is not my regular PT and she asked me if I had been cleared to go back to work. Well, it is hard to tell people that there is no way I can work my regular job because I am having too much back and leg pain (plus there is the little thing about being terminated).

I think with back pain, people think you are ok as long as you are not using a cane, a walker or a wheelchair.
The problem is that I am far from ok. Sometimes, I can drive my car and then othertimes, I cannot get off the couch.
I was ok today but because of the sciatica, I was kind of limping. Later, after the PT treatment, I could walk without a limp but still when I was walking from a street to a sidewalk tonight, I tripped.
I go around everyday, saying, "ouch" or I grimmace. The back pain is not quite as bad as before surgery but it is getting there and the sciatica is a lot worse.
It is kind of ridiculous.

I hope you get some answers to your problems and you feel better as soon as you can. Don't be too hard on yourself. I know all this back stuff is a strain for my husband and children, but this is the way it is until I get some definitive answers.

K
Hi Kimmers, It's as if you are describing my life!! It's been almost four years since my injury and I have been unable to return to work. I own my businesses with my husband and he has had to continue without me. It has had such an impact on our lives both personally and professionally. I feel disassociated from everything around me too and its as if I have become my back. The first thing I am asked when meeting friends or family members is" How's your back?" It's absolutely the last thing I want to discuss Everyone is guilty of having at least one deadly sin and mine unfortunately is pride; so no matter how bad it is, I am always telling people that I am "fine", I try not to limp or struggle to my feet or complain if I can help it. The result however, is that no one can quite get it why I am not working, or why I don't want to socialize or why I spend so much time exercising or doing some other form of rehab. I am a non-drinker but perhaps you and I should just have a few and let the world go by? I find my best coping mechanism is not to plan ahead. I just do one day at a time. Get through today and then get through tomorrow for who knows, tomorrow we may dance?? Keep us posted on how you are doing.
Regards

Sandra D
__________________


2004 Fell and injured L3,L4,L5 fractured vertebra
2005 Sneezed and herniated L5/S1
2006 Maverick disc L5/S1 Surgery in South Africa
Initial relief but situation deteriorating

Updated Diagnosis - March 2010
Disc degeneration at L3/4 andL4/5
L5 Radicular Weakness
Left L4/5 foraminal disc
L4/5 Severe facet Joint disease
Bilateral sacroiliitis
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  #10  
Old 04-04-2009, 04:40 PM
racheleddie racheleddie is offline
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Join Date: Feb 2009
Posts: 24
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Sandra D, I agree with you wholeheartedly about the back taking over your life. I too struggle with the pride thing and try my best not to complain, or show how much pain I am in. I have to take pain meds on a daily basis, and can hardly walk in the am when I get out of bed. My husband is really the only one who sees the full scope of pain that I am in. I used to be a social drinker, which I no longer drink due to the pain meds, and have had many friends tell me that I am not the same person anymore...they always say because of the pain I am in, but I don't think they truly understand the pain that I go through on a daily basis, and I do not fully understand what they mean by I am not the same person. I try very hard to stay as close to the same person as I was prior to these back problems, but the pain does rob you of your real life. Friends and family are always telling me that it seems like I am better, but they have no idea that all of the pain is still there, but just being masked by pain meds and my strong desire not to be a whiner! I guess no one will quite get it why we are not the same people, and why we don't want to socialize or why we spend so much time laying low except those that are going through the same ordeal! Best of luck to all in your individual journeys to a pain free life!
__________________
Karla
Age 47
Constant Back Pain since Jan 2008
PT, Traction, MRIs, CT Scan, Epidural Injections, Discogram
Herniated disc at L4-L5, spinal stenosis
Slight DDD and bulging discs at T6-8
Surgery June 12, 2009 - Scheduled for ADR, ended up with Fusion
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