I Went MIA, I’m back and here’s what happened

[Greg]

I sincerely apologize to all my friends on this site that helped coach/guide me through the toughest times of my life. You all were more supportive than I could have ever imagined and when I needed you the most I turned my back on the site to dwell in my own sadness/depression excusing it as I didn’t want to affect others. With that said, it’s time I enlighten you all as to what happened and how I got to my surgery date on May 28th for a 2 level fusion (ALIF) from L4-S1.:thumpup:

I’ll try to make this part short as I want to bring you up to speed as the story before I disappeared. I am 24 years young and had back significant back pain since I was 14….at least it was becoming chronic at that point. I went to doctors on and off but they all said I was too young to have any serious concern. When I approached my 20’s the pain became more constant, severe and a major setback in enjoying my youth. Again the doctors thought it was tense muscles, abusing my body, etc, etc, blah, blah, blah. I have come to find out that the county I live in, Brunswick County, NC, is one of the worst places for narcotic pain abuse in this state. It is tough to receive adequate treatment for back pain at a young age when the doctors are afraid to properly treat and medicate due to concerns of the growing pill abuse problem. Needless to say I did the chiropractors, physical therapy, exercises, stretches and so on.

June or July 2009 I went to the orthopedic office that did my shoulder surgery the prior year (tore my ligaments and bicep muscle knee-boarding on my boat) for help with my back because at this point my life has become a living hell and I cannot continue being my own doctor trying to treat myself with conservative approaches. In the office I demanded to the Dr that we do an MRI and I wouldn’t see her again until this was done. This happened and now the truth finally came out. Herniated disc at L4-S1, stuck on nerves, annual tears, DDD, spondylolisthesis and we knew about scoliosis. This was the best worst news I had ever received Continued conservative treatments but this doctor said she does not believe in narcotics as treatment for back pain. Obviously she has never had to go through the problems we all face on a daily basis. It was like pulling teeth with this woman to get even the weakest of medications. I finally convinced her to send me to pain management to get the help I needed. We did the injections (6 in 3 months) which didn’t help but he was able to enlighten me that I have 2 problems. My central back pain from the discs was a big one but my sacroiliac joints were causing the buttock pain that radiated down the legs. The thought was do the surgery on the back and that should calm the S1 nerves down and let my sacro joints chill out and quit hurting.

I started to go for surgical consults on this but the biggest setback at this point was my “life altering mistake” at pain management. We switched from one med to a different before the month script was up. We did this because what I was taking didn’t even come close to easing the pain. There are 2 things in my life that have never worked for me like the guidelines would say….anesthesia and pain meds! I had to turn in the old bottle of meds (couldn’t believe that I had to give him something I paid for to be thrown away) because I was getting new meds and that’s just the rule at pain management. Well I had taken a few more than the prescription called for so my bottle was short by a few. This is a direct violation of the pain contract I had to sign to receive medication. I didn’t think a couple pills would be a big deal especially since I never thought I would have to give them away. Well it was and even though the doctor sympathized with me he was legally obligated to discharge me from his treatment without meds and now have a permanent black mark aka the “Narcotic Violation” on my records with him. My family Dr has a policy where they don’t treat chronic pain so he couldn’t help and the original Dr who sent me there used my mistake as an excuse to not help me. My life has been flipped upside down now. Also, at the same time the insurance company had just denied me the surgery of getting artificial discs in my back.

This is what I call the “dark times” in my life as I tried to get into different pain management clinics (and there are only a couple near me) and b/c of why I was discharged from the PM clinic I was seen as a high risk drug abusing patient. I couldn’t even get accepted into other general practice offices to help. And I couldnt go to these places without the PM records because they want to know why I am not in PM anymore and I cant lie to them...but I wish I would have I did the only thing I could think of to end this saga and that’s fight the insurance to get the surgery.

I finally gave up on ADR and since spinal fusion is the standard for my condition I will go ahead and do it since I am out of options and can’t bare this life any longer. Being 24 years young I really wanted to avoid fusion but I’ve ran out of options. Crazily enough, BCBS of VA denied me for the 2 level fusion citing my records did not show any signs of instability in my spine HOW BOGUS IS THAT? Instable or not fusion is what you do for my case and they where flat out denying me because they have been spending A LOT of money on me over the last couple years. Not to mention my out-of-pocket cap was already met, this is in November/October and the surgery wouldn’t have cost me a penny. I sent appeal after appeal trying to get approved before the years end but they were relentless.

The “Dark Times” have just gotten unbelievably darker. Now the only option left to save my life is being denied as well so I have no surgery, no meds, no Dr, no plan, no hope, no happiness and no light at the end of the tunnel. Life wasn’t worth living. Had it not been for my wonderful fiancé who stuck by my giving me the motivation to fight through this and be the persistent person I am and find a way out. Well I did!

…..almost forgot, at this point I had now paid and completed a 6 week treatment for $4,000 (no insurance, they wanted $6,000 but I talked them down some) for spinal decompression. I believe my condition was too far gone for too long to benefit from this treatment and wish I had saved the money. I did get somewhat of a false hope in the process for a little bit. Not worth 4k though!

I had been searching clinical trials since August 09 trying to get ADR but I need 2 levels and the ADR trials are for only one. I even tried calling all of them to convince them the data would be worth getting and do the surgery for me. I did happen to find a fusion trial in Durham, NC (3 hours away) doing something with stem cells to promote a quicker more successful fusion. I got an appointment and now its time to change my life.

The doctor is an incredibly nice, educated and understanding person and didn’t stereotype my because of my age or anything. Basically said that you are right, you got a lot of issues causing a lot of pain and need this surgery. He couldn’t believe I was denied the fusion and wanted to attempt to get approval for the fusion the clinical trial was doing before they paid for it. Oh and by the graces of god the doctor prescribed me some meds to cope with the pain….it wasn’t as much as I needed but something is better than “ABSOLUTELY NOTHING” and I couldn’t have been happier.

I called the Dr Office 2 weeks later checking on the status of the pre-authorization. They said they could do the surgery in a month (2 weeks left at this point) but the lady had been swamped and didn’t have a chance to start the process. She promised me she would call them immediately and called me back. She called back 30 minutes later and said after 15-20 minutes on the phone just stating my conditions (not providing a book of tests and records on my life of my back) they APPROVED THE FUSION! It was like New Years at my house or when the Philly’s won the World Series! I couldn’t believe it. So now we have a date set and hopefully everything will work out in the end.

If your still reading at this point I thank you for taking the time to interest yourself in the story of my life. This has been a never-ending road of ups and lots of downs that put me to the brink of not wanting to live…. I’m sure a bunch of us have felt this way at times. I couldn’t have made it without the help of my friends on this site:thumpup: and the loved ones in my life. I had to disappear for a while during the dark times because reading and posting on the site depressed me even more. Just reading about people being treated like humans and receiving the treatment they deserved was the icing on the cake and I mentally couldn’t handle it….at least this is my excuse

So to all that have been there for me in the past and I’m sure will be there in the future, I hope you accept my deepest apologizes for leaving you all in the dark during the darkest part of my life. I tried to keep this short but I’m just not very good at that. I am glad to be back and am here to offer support and guidance to any and all in need.

Sincerely,

[linda]

Dear Greg,
Thanks for sharing your story. I had a feeling you were having a hard time. I am still having a lot of dark days but somehow just keep going. If you need anything while you are here having your surgery I am only a few minutes away and could come at the drop of a hat. Wishing you the best of luck with your surgery,
Linda

[Greg]

Dear Greg,
Thanks for sharing your story. I had a feeling you were having a hard time. I am still having a lot of dark days but somehow just keep going. If you need anything while you are here having your surgery I am only a few minutes away and could come at the drop of a hat. Wishing you the best of luck with your surgery,
Linda

Linda,

Thank you for your kind words and expression of compassion. One thing I love SOOOO much about this site is that most everyone, "KNOWS WHAT YOU MEAN" as we've all been there one way or another and understand how much of a mental strain it can be as well as the physical.

I still find it pretty cool we have the same doctor....I take it you live in Durham or somewhere close to there? I dont have a time scheduled for the operation yet but I'll probably head up to durham on friday, May 28th or overnight if it's an early one....I want early! I should be in the hospital right next to his office through the weekend. Dr Dimmig has been out for his back surgery on himself but he called me earlier this week when he came in for a day to catch up on paperwork and progress of patients (not physically seeing them though). Thats just the dedication you dont find in every doctor. Most all the doctors I've been to had their PA or nurse call me if they needed. Dr Dimmig does most the calls himself and even took the time to check up on me 1 week after he had back surgery on himself. I feel I'm finally in good hands, especially since he's your doc too and you seem to like him.

[Justin]

Hey Greg,

I'm so glad that you are moving forward. Back pain at any age sucks, especially if you are young. The good thing about being young is that you will recover quite well (you don't have decades of genetic or trauma-related degeneration and you don't have any comorbidities). Keep us in the loop buddy, as we do care. Let us know if you need anything--we are here to help.

Linda,

Thank you for your kind words and expression of compassion. One thing I love SOOOO much about this site is that most everyone, "KNOWS WHAT YOU MEAN" as we've all been there one way or another and understand how much of a mental strain it can be as well as the physical.

The Spine Patients that frequent these Forums are incredible people. It's truly amazing how everyone is willing to help. Linda, you're awesome!

[Katie]

Congratulations on persevering, Greg! I am so glad that you made your way back here to let us know how things are going for you. Your success really brightened my day, and I hope you have continued success. As you probably know, I just had a two level fusion there as well, back in mid-March and every day is getting better.

You will be able to say the same soon...hang in there, and I think your case is a huge lesson to others to not give up, no matter how dark it seems. As for the fusions, I've heard of so many people who have had many more levels of fusion than we do, (or will have) with no side effects after years of normal living. I was very worried about fusion vs ADR at the beginning, but all that has left me now. I'm just happy to have my life back, one day at a time.

[runagain]

Greg,

Hang in there. i can relate to your story, given that I have had insurance denials for surgery and have encountered people that are insensitive to how much pain I am in.
Those dark days seem to be always around.
I have had the misfortune or fortune to have to go through this process twice.
It is Hell. But somehow i just muddle through and look forward to the day that I am not in this kind of pain.
You can look forward to having a successful surgery and recovery.
Your perseverance will be rewarded.
I wish you Good luck.

runagain

[Greg]

Congratulations on persevering, Greg! I am so glad that you made your way back here to let us know how things are going for you. Your success really brightened my day, and I hope you have continued success. As you probably know, I just had a two level fusion there as well, back in mid-March and every day is getting better.

You will be able to say the same soon...hang in there, and I think your case is a huge lesson to others to not give up, no matter how dark it seems. As for the fusions, I've heard of so many people who have had many more levels of fusion than we do, (or will have) with no side effects after years of normal living. I was very worried about fusion vs ADR at the beginning, but all that has left me now. I'm just happy to have my life back, one day at a time.

Katie,

It is great to be back....I really missed talking to all my friends on this site. I could talk to freinds and family but non of them understood as much as everyone here. IT'S GOOD TO BE HOME. I'm glad my story can brighten some days and ultimately give hope to others who get stuck in the forever seeming downward spiral of HELL

Thanks for the reasurrance from other fusions....I needed that. I'm so happy to hear your surgery went well and just hope that I can be there for you like you've been for me. I PROMISE I WONT GO MISSING FOR SO LONG AGAIN.....PROMISE!

[Katie]

That's OK Greg. I've been a hermit these past few weeks ever since coming home from surgery. For the first week I was sleeping eighteen hours a day, but after that, I was feeling absolutely horrid before finding out that I can't do dairy.

I was so sick I just wanted to end it...there was still some back pain, and I had talked myself into believing that the surgery may not have worked as it should, and that plus feeling like I was being poisoned, I just didn't want to deal with anyone.

Now, just five or so days later after stopping the milk, I am feeling so much better...on the verge of wonderful But boy, did I ever catch heck from people who wanted to spend time with me. Apparently they thought I was being almost rude or even severely depressed, when I was just plain sick. The more someone pushed to 'help' me, the further I crawled into my cave.

So all that rambling was just to explain that I DO get it, and no apologies necessary. I'm just glad that you are feeling up to talking to us again, and have a way forward.

[Gilbert P]

Hi Greg

Thanks for sharing your story as I can relate, I am on the edge of being in the dark side but will not go their. I have a son and wife that cannot see me in that condition. I will keep moving forward
I know you will do extremely well in your fusions and wish you the best, Keep your core sstrong etc.

Thanks
Gil

[Katie]

Gil, I'm so proud of you, having the strength to carry on and not let the dark side grab you. You are stronger than I am. I truly would have given up years ago if not for my family too. I could not hurt them like that, as you say.

This is a wonderful place to share our pain and frustration, and save our loved ones some of the misery. Thanks Justin!