Brand new here looking for advice, please?

[wendriful]

@ Longroad: Do you still recommend the following: "Call Texas Spine and Joint hospital. Ask for the Fibrin Sealant with Dr Pauza 903-525-3300. He will request discogram maybe a MRI and let you know if he can schedule you. Ask for Von she does all the scheduling for the Dr."

I picked this info up off a thread by you from 2010. I am seriously open to anything that can treat my pain without making me worse. Have you had any long term success with this? ~Thank you in advance for your response!

[Maria]

Does sorta seem like maybe opinions were given based on reports vs. films though then again did these surgeons put the films up in the room while you were with them and go over them with you? I always ask the consultations I go to do and they have so far. Even if getting opinions based on mail away with films/reports I believe the surgeons have addressed the films and my complaints as well as reports.

Re the emotional aspect of this .. back pain or spinal pain (any part of it) is just a big bummer period (my near 30 year experience w/it).

The autofusion of my L5S1 area actually seems to have alleviated a good deal of my pain and/or at least stabilized that area a bit so I've gotten some much needed relief compared to past years when I was seeking more surgery.

I'd contact Mark M. here at GPN Artificial Disc Replacement ADR
He's helped/assisted many of us with getting our information to cutting edge spine surgeons for opinions and just talking things out which in itself helped me a great deal.

Dealing with this spine stuff solo can make a person nutz and sometimes we just need someone else's perspective who knows enough to be helpful but isn't directly affected by our decisions (family/husband/wife). An unbiased opinion (altho Mark has had lumbar and cervical surgery and his wife has had lumbar surgery).

good luck. We know the emotional part. For me alot of that had to do with fear I'd always be as bad as I was or worse, not to mention the chronicity of the pain and all the limitations and inability to do near anything. Who wouldn't be depressed or emotional?

You're Ok..just reacting normally it sounds like to a not your normal spine/life. I do hope you'll find some answers and things will improve. I'd call Mark or contact him. I did, many of us here have.

[dshobbies]

Wendriful,

You are depressed and with good reason. You feel like you’re screaming for help in a forest and no doctor is around to hear you. You want your life back, a commonality of all back patients.

With life threatening diseases, you move forward in your treatment and are doing something, however unpleasant, to help yourself get well. It takes time – but you are constantly moving toward regaining your health. With back patients, most movements are small and many are unproductive. We give up hope and without hope, you have nothing. How can anyone help but feel depressed when all they have to look forward to is pain and no life? Please believe me when I say that most of us have been down that road. We know how you feel and why.

I am going to ask you once again to contact Mark. You might ask what can one person do? Let me give you a synopsis of what he did for me and again, many have a similar story.

I was like you – no life – I wasn’t even able to sit at the dinner table with my family. The only time I left my house was for doctor’s appointments and physical therapy. I missed weddings, bar mitzvahs, anniversary parties, etc. I chose no drugs because I like to write and I still had that one thing I was not willing to give up. Doctors offered little help. I discovered ADRs. Those wheels turned so slowly, it only added to my despair, though I still had my hope for that miracle. I found Mark in May, 2005. Within one weeks time, I had an appointment with a top surgeon. I was scheduled for surgery in July and then again in August. My insurance company pulled the plug and I gave up on appeals in September. This whole time I was in contact with Mark and finally asked him for a consult with Dr. Bertagnoli in Germany (I really didn’t want to leave this country), who agreed he could help with a 4 level hybrid, or possibly a 4 level ADR. I was scheduled for surgery in December, three months away. I called Mark. I couldn’t wait yet another 3 months. I had been traveling the ADR road for more than one year, not to mention the two prior years. Another three months seemed like an eternity. After a whirlwind of preparations, airline and hotel reservations, etc., I was in Germany three weeks later.

Please call him. You have nothing to lose. If he can’t help you, he can’t. If he can…

And then, please choose your doctor carefully. Yes, you can most definitely get worse. I don't want to scare you but not everyone achieves their miracle. Your best chances of success lie with your choices for surgeon and procedure. I do wish you every luck.

Dale

[wendriful]

Yes, I have contacted him a few times and he was VERY helpful. The problem really comes down to this: I know who the best surgeon is; it's just that A. I am not sold on the disc he uses. and B. He hasn't responded with the total amount I need upfront and C. Even when he does respond, I definitely don't have the other family member involved in this financial decision onboard with that choice because of the obvious reasons: upfront payment needed without guaranteed reimbursement AND because I'm having difficulty raising that much cash period. I think I have a pretty good chance of getting it reimbursed because it sounds like my surgery has been 'downgraded' to a hybrid/one level ADR w/fusion, but I haven't received ANY correspondence from the aforementioned surgeon's office regarding insurance codes, letters for preapproval/necessity to insurance company, etc. And, they have not responded to the fracture that they missed either, aka: contraindication to 2 level ADR. I AM so afraid of falling into the 25% rate of people that are worse off than before surgery that I am hearing about, but the pain is at a point now that I just don't care anymore, I just want to lie in the O.R. and have them cut the pain out! (Clearly, that's not good). If I choose Plan B, I don't know how to find enough patient's stories in U.S. who have used the NY surgeon, is that because of HIPPA laws? Am I the only person who's financial health issues have made their spouse nauseated? (I am being facetious to a point, but do feel like a very large dollar sign these days). Maybe I should have a lemonade stand? ha ha

[Maria]

Wendriful,
I think this has been the reason many of us have foregone surgery maybe where we wanted to have it and utilized insurance paying for authorized procedures that were covered even if not our first choice. In my case I didn't do either in terms of 3rd surgery recommended. Guess I would have if I had to or would have to.

The 3rd surgery I was designated to have w/surgeon here in LA county had an office that was so difficult to reach and even was the cause of my 3rd surgery being un authorized because the surgeon/staff didn't fill out necessary paperwork in a timely manner as required by WC. I then had to try for 2 more years to get the surgery re authorized and when I did it was for a hybrid surgery vs. 2 level ADR. I definately didn't want the same surgeon who didn't get the paperwork done to perform the surgery even though I'm sure he was more than capable and I also didn't like how the office didn't respond to phone calls so in the end it did add to putting me off from going ahead w/surgery utilizing the surgeon/his practice as I thought if that was how I was treated prior to surgery how would I be treated afterwards?

That being said there are many persons that have come and gone on this forum who have had EXCELLENT results utilizing that surgeon/surgical practice and waded thru the office BS. I know I should not have let that influence my decision as one is looking at the skill/experience of the surgeon mostly.

Good luck w/your endeavor and however you have to proceed. Finances definately play a big part for most people. It is a big chunk of change to put out and while it's best to try to get it right w/best shot sometimes we have to make do with what is most feasible for us overall (thus possibly complicating the decision).

[dshobbies]

I'm sorry, I didn't mean to push so hard. You do not walk alone. It once took 6 months to receive a return phone call from a doctor and by then, I was so frustrated, I moved on.

Most of us who own homes in high priced areas like L.A., S.F., N.Y., etc. were able to tap into our homes equity - but those in areas like my nephew - my surgery was the same price as his whole house. Even then, we have to pay it back but can do so over a long period of time. There are also medical loans which carry high interest rates. From what I've read, those with limited financial circumstances don't have options other than fusion and even then, it's still up to the discretion of the insurance co.

It's sad but that's the way it is. I still wish you the best and hope it comes sooner rather than later.

Dale

[jsewell]

Wendriful

i so understand the spouse getting nauseated with the thought of the money involved. I never can even consider going out of the country. I have found that i have an awesome surgeon here near my home in Ca. He did send me out to DrRegan when he thought DrRegan was the better man for performing the surgery. DrRegan did take care of the pain in part of my thoracic spine but i have to now live with a devistating accident during surgery which has left me with only 45% lung capacity.
My spouse can't even handle the copayments on a PPO plan with a surgeon, that just accepts what the plan pays even though he is not a provider on the plan. He has my best interests at heart and has treated me well.

I do understand what you are feeling as when my insurance co, denied 3 times my most recent surgery to correct severe kyphosis and a broken neck!! THe thought of having to pay myself was very scary as we are in LA and do not even own a house! I had to go to my parents and them turning in some of their retirement income . Not a good choice.

Good Luck with this difficult decision. Unfortunately money does play an important part in it all.
judy