The waiting game...

[dridobits]

Hi all, if this is in the wrong place...I'm sorry maybe it needs to be moved.

Next week I have the first of my ortho surgery appts. Then in the next few weeks more. I am consumed with what will happen. It's so huge in my life. I guess I'm wondering how others are dealing with this and coping. I haven't even been to the appointments and I'm obsessing!

I never thought the day would come where I was actually looking forward to surgery. The more I know the better I feel, I found out tons of important information regarding insurance and "emergency" issues such as what happens if something goes wrong and I have to stay at the hospital...i.e. who pays. Putting all my ducks in one row so to speak.

And then I think of all of you right before you go to Germany...and the anticipation. So, I guess I'm wondering how you all deal with these issues. I so wish to extend my support for all of you making the decision and the "waiting period".

[dshobbies]

D,

The reality is there's little you can do to keep your mind from going ballistic while waiting either for surgery or the diagnosis that it is necessary.

Breathing, meditating, diversion techniques, etc. are all useful but the stress is ultimately inescapable. I know of no one who can turn their brains off at will. Just know it's something we have all lived through.

If you think back to anticipated scolastic tests or even the 3:00 bell or birthday parties or a special outing or vacation, the anticipation for all of those made you want to jump out of your skin. You could actually watch the clock tick second by second. It's the price we have to pay for the ability to think But by all means, try breathing, meditating....

Good luck!!!!! Dale

[Gil Denis]

Hi Dridobits

The waiting game is to see as many Doctors ,Surgeons , Nero Surgeons.

Take all the test MRI, CT Scan, EMG, X Rays etc. Do all the research as possible study listen and learn. Send your information around and get plenty of opinions as possible .

Try all conservative treatments as you can afford.

Then it is time to make a choice where to go see and what type of surgery would work best for your special condition.

And the insurance $^&$

I wish you all the Best

I am also in the waiting Game and moving on

Gil

[Michelle Maree]

Hi,
I am in the same boat too,the process seems to take forever. I sent a refferral through to an ortho a month ago now and still havent been sent an appointment letter. By the time I get to see him I think my bones will have fused themselves....LOL.
Luckily though my doctor has decided to be more generous with the pain meds (about time), so the waiting wont be as bad.
I cant say I am looking forward to surgery though, I am scared of the outcome. I think I will be really happy I had it done if it eventually gets rid of the pain. But I know I wont like the stiffness ,it will be a trade off.
I still dont know what questions I will ask him. And I have no idea about the finer details like cages and hardware etc. Does knowing about that stuff matter?
I sympathize and understand exactly what you are going through,
please keep us posted.

Michelle.

[Michelle Maree]

Can I ask you dridobits what has made you decide to look at surgery now?
I see you have been on opiates for 10 years and seem to have a life.
Is it that the symptoms are getting worse? Or are you more restricted now than before? Are you glad you waited this long to have surgery?
Sorry if these questions are a bit nosey. Its just that I have been told by one ortho surgeon, a physiotherapist and a pain management doctor to wait it out and stay on pain meds and keep with conservative options, as they dont think that spinal fusion will necessarily get rid of the pain or that I might trade in some pain for different pain. And that I will have problems with adjacent levels down the road. And if I wait long enough i may fuse naturally
My pain management told me that the surgeons give fusions about an 80% success rate (mine only said 70%) where as everyone else (pm, pt,etc) give a 30% success rate, because they see the patients further on down the track.
I am not saying this to depress you, its these kinds of comments that have made it very hard for me to make a decision on what to do.
It seems that maintaining some movement is the key and if you can get by on a small amount of pain meds every day and keep the excercises up then that may be better than fusing. I dont know sometimes I wish i had a crystal ball. I think If I was STILL a candidate for ADR then I would definately consider it, Im just not sure about fusions

Its a big decision and I want this one to be the LAST!
Unfortunately though there seems to be a cascade of continuing surgeries for some people and I know I am not cut out for that at all!
Please save me from my own negativity !!!!!

Michelle.

[dridobits]

Hi Michelle...the only thing I think there is a misunderstanding is me having a life. I don't. I spent 60% of my time flat on my back. I have trouble taking care of myself, cannot grocery shop (can't lift), have stairs (can't move). and yes, it's getting worse. I can do a little walking but I never know when. My situation is completely unpredictable and I cannot make plans. Unfortunately, things are getting worse. I am incapable or working.

What has given me hope is that in terms of my situation regarding the "chemically sensitive disc" issue which is my biggest problem is that my doctor (who is an expert in this) wrote an article where the numbers are completely different. I have sent this to others, if you want this, let me know. It is for people with a chemically sensitive disc who do NOT have surgery and how they are usually NOT better. I am not looking to be out of pain. I am looking for the horrible nerve pain battery acid feeling with days of spasms and acute pain to hopefully change. That's not the same as wanting to run.

I had "given up" and didn't know about ADR. I was also dealing with life threatening cancer and fighting that. Now that's over I can move forward with the back.

Michelle, you and all of us know how complicated this decision is...The reason I waited over ten years is due to those statistics you wrote about. But I have learned I am not a statistic...if I believed that in regards to my cancer, I would be DEAD. Do I wish I had done this earlier? YES but in hindsight I didn't know about what my doctor wrote about in regards to this condition. I now have more hope. Also I met someone who changed my life...someone who makes me want so much more.

I guess the question is what do I have to lose and that's serious business? I could be in a wheelchair (I don't have to say the worst). I could also be taking a long walk. It's a risk game and I think since I've already gone through one life altering risk situation, I'm a little bit more apt to make this decision and also knowing if I had only six years more, I'd be willing to have two years (whatever) to recovery and four good years. Sounds creepy but this is how it is for me.

I have my first ortho appt this week with HMO after all my tests were completed (discogram, bone density, additional needed facet block, etc). next week. In two weeks I see Dr. Bitan and Dr. Neuwirth. I still don't know if I am a ADR candidate due to my facet arthritus and bone density. I will find out with each Dr. appt. I don't want fusion but if I have to do it. I will. I don't need to be too flexible. That I can give up...it's just the acute unrelenting nerve pain that I can no longer deal with.

You'll certainly find out more as I go along....I have to remain positive. For me after making the decision I cannot afford to think negative. I can be realistic but not negative.

[dridobits]

Hi Again, Michelle, by now I've probably put you to sleep with all my talking. You mentioned questions.

I was given a form with the following on it in regards to questions from one of the doctors I am gong to see. Maybe this will help?

1. What is the name of my condition?
2> Can you explain it to me in terms I can understand?
3. What is it due to?
4. What is the most likely outcome in the absence of treatment?
5. What treatments other than surgery are available?
6. CAn they cure of stop the process or are they just symptomatic?
7. Is my condition accessible to a surgical treatment?
8. Can you explain it to me in terms I can understand?
9. What are the risks of the procedure and what do you an dyour ream do to try to prevent them?
a. During the procedure
b. During the hospitalization
c. During the recovery processs
10. What is the recovery time?
a. To be able to perform basic domestic tsks (getting out of bed, walking getting ready for the day)
b. To resume sedentary professional activities?
c: To b able to drive a car?
d> To resume strenuous professional activities
e. To resume sports activities.

[Michelle Maree]

Thankyou dridobits for your replies.Dont worry about the length, thats what we are here for!
Im sorry, I had no idea it was that bad for you. I thought you were doing o.k on your meds and thats why you had waited 10 years. Im sorry you have had such a rough time.
From what you are describing I agree that getting rid of your disc will probably bring you enormous relief. How did your discogram go?

I think that my facet joints are causing me the most pain and so am having a facet block on Friday then if that goes well and looks to be positive i will have Radiofrequency denervation of the medial branch nerves. I think you might call it a facet rhizotomy in the US. Hopefully this will bring a lot of relief and I can then cut back on the opiates.
Does anyone know how well a fusion gets rid of facet pain? I have heard that it doesnt always help straight away.

Anyway I hope your appointments go well and you find the right surgeon for the job. I just got a letter of appointment for October! But I will see about getting in sooner. I hope this means he is an excellent surgeon.
Good Luck,
Michelle.

[dridobits]

My discogram showed mostly what I knew...the annular tears, bulge, DDD and something leaking from the disc outside.

That's interesting you think your pain is coming from the facet? Good luck on the block. It was my second one and provided no relief. I think your question would be good to post...I think I've seen snippets here and there and I also asked a question about facet joints....I can hopefully remember this question and put it to the first surgeon next week. I'll certainly let everyone know as things progress! Let me know how it all works out for you. Best, D

[dridobits]

Well I have to say I was pleasantly surprised going to my HMO my first stop for surgery advice. The guy seemed like he knew what he was talking about and had a great bedside manner. The fact I have done so much research made it much better. I was his last appt. so it lasted for two hours.

What he said was what I thought...not exactly what I wanted to hear but that I need a two level fusion and that due to the facet issue and the bone density he didn't feel adr or a hybrid was the best. I'm glad in a way he wanted to do two levels as I have a bunch of annular tears on another disc which the report failed to mention from the radiologist. So at least the ball is moving. I will see the other surgeons in NY. I know different people have different requirements.

No way would I let him do ADR as he doesn't have enough experience in my book, but over 300 fusions felt better. I hate to say it but if I did exactly as I wanted it could wipe me out financially. It's a total drag to be in a situation where money is a factor. More later.

[Katie]

It's an evil fact for most of us...the green monster, and I'm not talking jealousy, but $$$, rules our lives one way or another. I have to go through this insurance *ell too, because the only other way would be to sell our home, and I won't ask my husband to do that. He (we) have worked too hard to give it all up. We pay for the insurance...we shouldn't have to give up everything.

I wish I could say or do something that would help, some suggestion to help you get through this maze. All I can do is agree...it IS a total drag.

It's comforting that you at least felt comfortable with this last guy...better than the alternative. If the doctors in NY agree that your bone density is not good enough, will you stay with this guy for fusion? You are going through all the right moves, eliminating the good and the bad...and doing a good job of narrowing the options. It will be crappy if your only opinion isn't what you want (all fusions), but at least you'll know you did all your homework properly.

Nothing like finding out after the fact that you shoulda, coulda.....

Hang in there. I'm glad you are keeping us updated....I'm thinking of you daily.

[treefrog]

Originally Posted by dridobits

Hi Again, Michelle, by now I've probably put you to sleep with all my talking. You mentioned questions.

I was given a form with the following on it in regards to questions from one of the doctors I am gong to see. Maybe this will help?

1. What is the name of my condition?
2> Can you explain it to me in terms I can understand?
3. What is it due to?
4. What is the most likely outcome in the absence of treatment?
5. What treatments other than surgery are available?
6. CAn they cure of stop the process or are they just symptomatic?
7. Is my condition accessible to a surgical treatment?
8. Can you explain it to me in terms I can understand?
9. What are the risks of the procedure and what do you an dyour ream do to try to prevent them?
a. During the procedure
b. During the hospitalization
c. During the recovery processs
10. What is the recovery time?
a. To be able to perform basic domestic tsks (getting out of bed, walking getting ready for the day)
b. To resume sedentary professional activities?
c: To b able to drive a car?
d> To resume strenuous professional activities
e. To resume sports activities.

That is an awesome list of questions.

I look forward to hearing what Dr. Bitan says. You are wise to get several opinions, and to be educated about your condition and options. Good luck.