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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #11  
Old 04-04-2009, 11:02 PM
kimmers kimmers is offline
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JJames,

thanks for your comments. It is tough deciding what you are going to do with your back. You know if you have a good PT, when you are feeling bad, they will back off and have you mainly have massage and stretching. It can actually help the pain. A hybrid may be a good option for you, especially if it seems like you are not going to have any problems with your sacroilliac area. My SI joint tends to go out of place time to time so I am not sure I would undergo fusion at L5/S1.
From everything I have heard and read, Dr. Yue, seems to be a great doctor. There are other options with regards to insurance, I have heard of people having a two-level by a one-level trial doc. And I have seen evidence of the FDA allowing surgeries on a compassionate basis.

I would just research. I wouldn't settle for something you don't want. You have to do what is best for you. Remember that.

Sandra D and Racheleddie,

It makes me feel better that other people are feeling like I am. I don't mean I would wish this upon you as this does suck.
I am pretty sure that my L5/S1 was an accident waiting to happen. It could of happened 10 years from now but I am just unlucky for it to have problems now.
You can't believe how good you can feel after an ADR. I was feeling like, "Wow. This is all I needed to do to fix my back and now I can live my life."
It was short-lived, I know, but it was good. I will have more answers about what is going on with my back soon and then I will take it from there.

I cannot get over this separateness, dissassociation, I feel with my life. Of course, there are the facts, I have lost my job, a lot of my love with my hobbies, my career is at a standstill, and I feel like I have aged a lot in 23 months. I am taking more and more pain meds which doesn't help. Again, I am awfully forgetful because of that.
I just don't feel like I can go and go. I felt very different before I had back pain and now I feel kind of lost.
It is like you are looking at life through a fog. Things are just different and the little petty things people complain about seem very trivial when you don't feel well.
Thanks for your thoughts.

kimmers
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hurt back lifting, herniated disc at L4/L5. DDD
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  #12  
Old 04-05-2009, 02:05 PM
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CindyLou CindyLou is offline
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Back to JJames, folks.....this is his thread, after all,

First, I just want to express my sincere concerns about your current state of pain, frustration, where to turn next, etc. It can be absolutely overwhelming. Hence, you have come to a wonderful place in search of the best answers and solutions for you JJames. I hope you find precisely the best solution and the best doctor to lead you to pain free living in the weeks and months ahead. I am just speaking from my own personal experience here, obviously, but in a nutshell here is the path I went down, and I only share it in hopes that it might help you, and any others: I had 3 lumbar adr's installed by Dr. Bertagnoli 2 years ago, yet never felt like I got the pain relief I was hoping for.

I then had ALIF below the 3 levels, at L6-S1 (I have an extra vertebra), last July. Unfortunately, had to be reopened up 30 days later, due to bone cement leakage. 5 days after that discharge I suffered a fairly massive pulmonary embolism and double pneumonia, and had to be rushed by ambulance for an additional 5 day hospital stay. I thank God I am still alive to tell this story. Unfortunately, even tho I was fusing nicely, my pain was getting worse, not better, especially in low back, right butt cheek, and right hip. I could not stand for 5 minutes at the grocery check out line w/o excruciating pain.

I then had the very good fortune to be put in touch with a surgeon here in Minneapolis by a gentleman that runs another spine forum. He had met him at a spine conference last fall and was very impressed by his findings. This fellow arranged a 3 way conference call with the doctor one evening, and we consulted for over an hour! Amazing. He then "found an opening" to fit me in the very next day for an in person consult, along w/ viewing my images. After a thorough physical exam and ordering an additional MRI of my pelvis area, he concluded that my SI joints were major pain generators. (back up: I also had had an SI joint injection about two weeks prior, at my pain management clinic with 100% relief, for about 5 hours) This doctor said most doctors still don't believe how such small joints can cause such high pain levels. This is all he does is SI Joint Fusions. Highly specialized. (he has done numerous other surgeries over the years but became interested in chronic back pain sufferers, failed back syndrome folks like myself, and committed himself to only handling the most difficult cases.) He has had amazing results with hundreds of patients who journal in a book that is available to read, while you wait for an appointment. I have to admit, I was more than curious and desperate for pain relief. He highly recommended a fusion of my right SI joint (my most painful side), and before I knew it, I was scheduled for 3/10/09. I even got to enjoy an evening of dinner with him and a small group of other local ADR patients, Dr. B patients. Who gets to have dinner with their surgeon the night before?! I will be 4 weeks post op on Tuesday, and I can honestly say, I am coming along incredibly well. I have to use my crutches/cain for 2 more weeks, then I will likely start some p.t., or do my own water and exercise regime. All my pre-surgery pain is gone, and I am only experiencing surgical pain.

Let me be clear when I say I have not been this pain free since my bicycle accident 8 years ago. This doctor very much believes my other surgeries were necessary and are supporting this final piece to the puzzle. He is absolutely fascinated by what he can see on my images that Dr. B performed. He says they now finally have a chance (my 3 new discs) to perform like they were meant to. Pain-free. Just to give you an idea of how this latest surgery has already changed my lifestyle: I went to a Blues Bar and dance club (obviously didn't dance!) with friends 1 week after my surgery, sitting and thoroughly enjoying all the fun. I let my crutches do a little jig, and got alot of laughs from the patrons. I have been enjoying my new granddaughter on almost a daily basis, with no pain.

This past weekend I went out with friends again to Happy Hour, sat for almost 5 hours at the restaurant, thoroughly loving life and great conversations, until I knew it was time for me to leave. As soon as I felt some pain, I got up, bid my goodbyes and left. They call this LIFE. LIVING. Something I have not done in a very long time. Sorry this is so long. I just wanted to give you a picture of a changed me. Of course I hope and pray this is long lasting relief, and I never for a minute forget the hell I came from, and am thankful for every day that nudges me closer and closer to pain-free living. This is my hope and desire for you in the days ahead, and anyone else reading this. Please feel free to PM me with any questions or if you would like to talk. Where in Connecticut are you? My husband is from Glastonbury. God bless JJames!

Cindylou
__________________
CindyLou
bicycle accident 6/19/01
2 compression fractures, T12, L1;
vertibroplasty @ above levels, 9/15/01
4/06 hip labral tear repair
4/07 Lumbar ProDisc replacement by Dr. B., 3 levels; L3-6
7/2/08 ALIF of L6-S1
7/30/08 Removed bone cement.
8/7/08 Diagnosed with pulmonary embolism, double pneumonia, collapsed left lung, pleurisy, pleural effusion.
3/10/09 right SI Joint Fusion; seeing light at end of tunnel, for first time in 8 years!!
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  #13  
Old 04-12-2009, 10:09 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Default Thank you for your replies ...

Thank you all very much for your thoughtful input. It is oddly of some comfort mentally that there are others who are feeling as trapped as I am in this world of isolation and pain as sad as that is. It is so difficult on my wife and children to have to put up with my back issues. CindyLou, I live in Enfield, CT (not too far from Glastonbury, but of course CT is a small state).

Believe it or not, I haven't even been contacted by my surgeon, Dr. Yue's, office to schedule my latest MRI yet! When my wife called last week on my behalf it appears they are having some trouble finding where exactly he requested one be done! I have done my homework, and Dr. Yue appears to be a very impressive and successful surgeon on "paper" but I am seriously losing faith.

Any suggestions from anyone on finding the "right" surgeon? I've seen several in NY city, and am certainly not opposed to go to Boston, MA. I have recently received a suggestion regarding a surgeon in Hartford, CT who I plan to look into.

I MUST have something done. I have had it with living this way. By some miracle I continue to work, and have not yet been fired. I can't help but wonder if pushing through the pain and continuing this is the wrong choice for me. I am driving 120+ miles/day commuting on all these meds, having great difficulty concentrating and remembering things, etc. I don't know what else to do. I need to provide for my family financially somehow!

Aaah, I just don't know anymore.

Thanks all - 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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  #14  
Old 04-12-2009, 10:59 PM
Liz Liz is offline
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Join Date: Oct 2007
Posts: 195
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hi jjames,

i'm so sorry you are struggling. can you find a place near you that can perform your MRI, call Dr. Yue's asst and have them fax the referral to that MRI facility? you need to get it going if Dr. Yue's office can't. This is what i just did for myself with my surgeon in less than 24 hrs (MRI in a few wks). I know you have a lot on your plate so just try and take one thing at a time. Then, i think you need to try and get a hybrid op or even a 2-level fusion if that is indicated after the MRI results as you sounds like you are deteriorating. I don't know what meds you are on but it doesn't sound like you are comfortable driving that far and you're putting yourself and others at risk.

Can you take a sick leave or time off under the Family Medical Leave Act? I would ask your HR person about it. When i was struggling pre-op to perform my own job duties I took part-time off under the Family Medical Leave Act for my own illness.

Since you've come this far w/Dr. Yue try and get the MRI and surgery w/him soon (unless your gut tells you otherwise) but if not get another opinion. I don't know of anyone in Boston but i'm sure people on here will. i've heard good things about Dr. Fabian Bitan in NYC, but I have no personal experience with him. He performs a lot of hybrid operations, but i believe he uses the Charite. Try and get the MRI and then maybe see if other surgeons will review your films remotely if you have trouble getting into Dr. Yue.

Hang in there,
Liz
__________________
scoliosis; 1998 snowboarding injury->DDD L3-S1 w/annular tears/protrusions; 2007 episodes of rt foot drop
2007 Prodisc ADR L4-S1
L4-5 Prodisc tilted/facet issues; old L5 nerve damage
2009 L4-5 Prodisc ADR removed and revised to XLIF w/posterior instrumentation
massive hemorrhage from tear of inferior vena cava at right iliac vein due to adhesion from Prodisc op
2010 not fused; as a result of complications permanent nerve damage to lumbar plexus causing severe rt leg, hip, groin pain
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  #15  
Old 04-13-2009, 03:25 AM
Jessica Jessica is offline
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Join Date: Mar 2006
Posts: 169
Default Hang in there

I have been through the waiting and the "you need to try Pt". Luckily for me I had a wonderful PT that told the doctor "no way". I, too, worked part time and was flat on my back the rest of the time. That is no way to live life. I agree with the post that said "one day at a time". I would get more anxiety because I had made plans with someone and then a flare up would prevent me from going ... or I would go and suffer so as not to seem like a whiner.

I once read --- Your pain will change what you do.... don't let it change who you are.
This is a very tall order, but it helps remind me to try not to lose myself.

I also read ---- I am not depressed... I am grieving my former life.
There are alot of people here who know how you feel and I hope that gives you some level of comfort and helps you keep your sanity.

Best Wishes.
__________________
Jessica 39 yrs old
10/2005 MVA C5-C6 herniation w/ cord impingement/displacement Unable to work full time.
July 31, 2006 Surgery successfully completed Prodisc-C C5/C6 on in Straubing, Germany by Dr. Bertagnoli. Able to work full time since 1 month post op, but some pain remains.
10/2008 3 surgeons confirm C6/C7 needs ADR and always has.
Has anyone had a second ADR surgery on an adjacent level?
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  #16  
Old 04-13-2009, 01:01 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Question Thanks, Liz.

Quote:
Originally Posted by Liz View Post
hi jjames,

i'm so sorry you are struggling. can you find a place near you that can perform your MRI, call Dr. Yue's asst and have them fax the referral to that MRI facility? you need to get it going if Dr. Yue's office can't. This is what i just did for myself with my surgeon in less than 24 hrs (MRI in a few wks). I know you have a lot on your plate so just try and take one thing at a time. Then, i think you need to try and get a hybrid op or even a 2-level fusion if that is indicated after the MRI results as you sounds like you are deteriorating. I don't know what meds you are on but it doesn't sound like you are comfortable driving that far and you're putting yourself and others at risk.

Can you take a sick leave or time off under the Family Medical Leave Act? I would ask your HR person about it. When i was struggling pre-op to perform my own job duties I took part-time off under the Family Medical Leave Act for my own illness.

Since you've come this far w/Dr. Yue try and get the MRI and surgery w/him soon (unless your gut tells you otherwise) but if not get another opinion. I don't know of anyone in Boston but i'm sure people on here will. i've heard good things about Dr. Fabian Bitan in NYC, but I have no personal experience with him. He performs a lot of hybrid operations, but i believe he uses the Charite. Try and get the MRI and then maybe see if other surgeons will review your films remotely if you have trouble getting into Dr. Yue.

Hang in there,
Liz
Thank you for your input, Liz. I've contacted Dr. Yue's office again today and am once again awaiting a call regarding scheduling the MRI. He feels very strongly that all such diagnostic tests like these should be done at the Yale Facility who he is affiliated with as that way the images and results are more easily accessible to him. I'm actually okay with making the lengthy hour+ drive to have it done there if it helps expedite things.

I have given a lot of thought to what options may available to me regarding my job and my family income if I were to take some sort of leave. I've spent the last 20 years of my life working my way up to my current position within this company. I am certainly not raking in big money by any stretch, but it is certainly far more than if I had to start all over somewhere else assuming someday my back issues would even allow that. I do not know how the "system" works for losing or leaving your job for medical reasons. If it were only me that I had to worry about it would be a "no-brainer", but I must consider my wife and my children and their futures. I simply don't know what else to do except to continue struggling and trying to make it to the end of each work day so that I can lie down. My idea of a "perfect weekend" is 2 days of laying in bed to prepare my body as best I can for another work week!

Does anyone have any suggestions on how to navigate programs like the Family Medical Leave Act? Does anyone have any suggestions on how to survive financially when your condition becomes so poor that you can't do your job anymore? My wife's income could only cover a small fraction of our expenses. My income keeps us only slightly better than living paycheck-to-paycheck, in addition to providing the medical insurance.

Thanks for any information and all of the kind thoughts and compassion - 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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  #17  
Old 04-13-2009, 10:19 PM
Liz Liz is offline
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Join Date: Oct 2007
Posts: 195
Default Family Medical Leave Act

hi jeff,

i'm glad you're getting the MRI sorted out w/Dr. Yue... i agree it's better to have it all electronically available to Dr. Yue through Yale, just if that wasn't happening i was proposing another option.

re: FMLA... do you work for a company w/more than 50 employees? i believe this is a stipulation. You have to have worked for your company for over a year to qualify which you have.

Unfortunately any time you take off under FMLA is unpaid, but you do keep your health benefits and i believe your job is protected (but please confirm this). You can take up to 12 weeks in a 12 month period... if continuous you'd have to pay your employer their portion of your health benefits; if you just take part-time (hours) off then you should still be covered under your employer's policy (and not have to pay anything additional for benefits but you'd have to check w/your HR dept for your company's policies). This is what i did... i only worked 5 miles by bus from my apt though and when my pain became unbearable to focus and be productive (i would have to stand a lot in my office working and in mtgs b/c sitting was excruciating as you know) or i was having an episode i could take a shorter work day to go home, take meds and lie down, or go see a doctor, PT, etc. If this is the case FMLA can last longer than 12 wks b/c it's the cumulative number of hours. My life was like yours... just working long days and then coming home, taking meds and lying down... not much of a life.

there's a form that you, your employer, and Dr. Yue would fill out for "employee's serious health condition" for FMLA, see http://www.dol.gov/esa/whd/fmla/.

Re: financial assistance, you'd have to check w/your local social security office, see http://www.ssa.gov/disability/

There is a very low limit (i think $3K) to qualify for supplemental income from social security (if you own a house i don't think you'd qualify), but if you can no longer perform your job duties you could file for social security disability. i know this is not ideal and ideally you'd like to have surgery and get on with it and get back to your life.

do you have a private disability policy? either through your employer or one purchased privately?

is there anything you could do remotely from home?? does your job require you to be in the office 5 days a wk? it's worth asking about if you haven't already.

i hope your wife can help you sort some of this out, as i know it's overwhelming to deal with in addition to the pain.

i also hope you can figure out a solution to your pain soon so hopefully none of the above will really matter for long.

hang in there!
Liz
__________________
scoliosis; 1998 snowboarding injury->DDD L3-S1 w/annular tears/protrusions; 2007 episodes of rt foot drop
2007 Prodisc ADR L4-S1
L4-5 Prodisc tilted/facet issues; old L5 nerve damage
2009 L4-5 Prodisc ADR removed and revised to XLIF w/posterior instrumentation
massive hemorrhage from tear of inferior vena cava at right iliac vein due to adhesion from Prodisc op
2010 not fused; as a result of complications permanent nerve damage to lumbar plexus causing severe rt leg, hip, groin pain

Last edited by Liz; 04-13-2009 at 10:42 PM.
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  #18  
Old 04-14-2009, 11:15 AM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Default

Liz,
Thank you so much once again for the additional information. I did begin some research yesterday regarding the FMLA, and will also be checking out the sites you included in your post.

I do have a disability policy through my employer which would be of some assistance if I am forced to use the FMLA. I believe that my best course of action is to put a proposal in writing to my employer regarding the possibility of working remotely at home. Most of my job requirements are performed via telephone and computer. I know that there would be some sort of pay-cut which I would have to endure as I am also a Department Supervisor and couldn't perform those duties very well from a distance.

While awaiting the scheduling of this MRI, attempting to find some resolution to my pain with Dr. Yue, and researching the possibilities of seeing yet another surgeon I am going to begin trying to come up with a plan which will allow me to maintain at least a level of income to support my family.

Thank you once again - 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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  #19  
Old 04-24-2009, 05:06 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Angry Getting near the end of the rope!!!

Okay, so I have to wait the almost 4 months to see a surgeon who I am supposedly already a patient of (i.e. not a new patient). I get in a car crash while waiting, doubling my back pain. I finally see his royal highness, only to be told that we need to schedule another MRI - no surprise as even I understand that he needs to see what issue(s) I may currently have. For a myriad of reasons it takes over 4 weeks to finally get the darn MRI (yesterday). Now my wife gets a call from the surgeon's office to schedule the appointment I've been so desperately waiting to have. Today is Friday, April 24th, my appointment has been scheduled for JUNE 15TH!!!!

Now I'll take a deep breath ........... ah, that's a little better. I have a somewhat larger concern. Please don't tell my employer, but I just plain cannot do my job anymore due to my back issues. I am struggling along, and doing what I can. I am scared to death about the uncharted waters which I may soon be entering into - unemployment. Can anyone direct me to anyone, any website, any organization, etc that may assist me in what I am supposed to do if and when I can't provide the income and benefits (medical, 401k, etc) for my family???????

The FMLA details I found do not sound very promising. I have never had to even think about this stuff before. I do not know where to find the resources to get up to speed on this. I am not ashamed to admit that we currently live paycheck-to-paycheck as it is! Perhaps those here are the only ones who can understand the additional weight that this worry brings.

Absolutely any advise would be greatly appreciated. I really do not know what to do or who to turn to. Should I find a way to hire an attorney? I simply do not know....

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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  #20  
Old 04-24-2009, 05:57 PM
AJ AJ is offline
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Join Date: Nov 2005
Posts: 64
Default Bad situation

Only a quick post as I can't offer any practical help on what to do being from the uk. Just to say that you aren't alone in your situation. I have been dismissed and have an appeal against this dismissal as my employers did not seek medical advice before taking action. My union is representing me. I have been waiting for surgery since the end of January, had a surgery date of yesterday which got cancelled at 4pm the day before as the surgeon had an "emergency" come in. I've now got to wait another two weeks to go in again. I have one daughter who I am just finishing putting through college and another about to go. I was funding this from my wages which have just stopped.

Its all just so frustrating and the feeling of powerlessness is not one that I am used to. You've just got to stick in there and do the best you can and if its all getting too much then shout out and tell someone. PM if you need to, I spend hours on the computer as it one the few things I can do that doesn't cause more pain. Thinking of you.

alison x
__________________
Alison
2009 May 9th - Revision L5/S1 Charite in situ, posterolateral gutter fusion
2008 Caudal injections. Prolapse L2/L3 found
2007 L5/S1 Facet deterioration, Loss of disc height.
2002 March - ADR Charite - L4/5, L5/S1
2000 Broadbased disc prolapses L4/5, L5/S1
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