What would you do? UPDATE 8/26/15

I keep hearing stories like yours were people get started on a medication and then they can't get it anymore and this is ridiculous. In January I started having trouble with Norco and this is really getting crazy in the USA, The feds are cracking down on pain medications and it's not right to those of us that use them as prescribed. I'm sorry you can't get your medication anymore, is there another medication you could try? Are you in a US State that allows for MM? I have been doing serious thinking of moving to a US State that allows for MM...if the feds get more stricter on Norco then I will just head up and move...really hate that because of the pill mills and abusers that we are facing this type of situations everywhere...Can you ask your doctor if you can be allowed to fill your script out of state? or maybe consider a move...but this is getting outta control on the Federal end now...We jump through the hoops, we take are meds correctly, we never harm anyone, yet we get the headaches and troubles...
Sorry about the rant, but you should be able to get your medicine as prescribed!

I've actually been exactly where you are -- lumbar fusion vs. continuing to try to treasure-hunt for a pharmacy with my medication.

Having also had far too many issues with surgery, I will keep battling for meds as long as I am able to. But that's my personal decision. Only you know what's right for you and your family. If you're ready to try surgery again, then that's the right choice for you.

One thing I know I will do going forward having also suffered from a long-term infection that no one believed I had until it had spread the entire length of my spine is to check hospital infection rates and specifically ask the surgeon what all he does to prevent infection. The best hospitals screen all patients for MRSA and take extra precautions to prevent transfer of that infection to other patients through segregation, advanced sterilization & more careful personal hygiene (ok, it's more involved than that, but you get the idea). Morbidity & mortality rates are now available on-line for most, if not all, US hospitals and I've begun to realize that is at least as important as having an excellent surgeon.

Unfortunately, surgeries do run long sometimes -- mine usually do. And no hospital (or any place) is ever perfectly sterile. That said, there are plenty of things that hospitals and surgical teams can do to significantly reduce risk of infection and it's surprising how few follow even relatively basic research-based protocols for that. Now I know to ask about whether they use a pre-op checklist (reduces surgical errors & likelihood of extended operating time) and what protocols they follow to prevent infection.

Good luck with your decision! Hope whichever way you go you are able to find some relief.

Sorry you are having pain!

I'm not surprised that you are having trouble getting 3 opioids. I presume the patch is your long-lasting med. One of the others could be for breakthrough, but 3 opioid meds is a big red flag. I would talk to the doctor about this problem. Maybe he can raise a dose of something and eliminate something else.

Pharmacy shopping is another red flag. Walgreen has a bad reputation on this forum, although I'm sure they have some very good pharmacists. I personally like my ma and pa pharmacy, but they can have problems too. My insurance won't pay for 2 of the same category of meds, although I can pay out of pocket for some types.

Bottom line is talk to your doctor.

My Dr. appointment was yesterday so I can't go back. Like mentioned if I jump onto a schedule I'll have to take a day off just to wait.

In Florida you can have a BT (Opana) ER (Nucynta), full time (Fentanyl) and Muscle Relaxer. The BT meds are the ones pharmacies treat poorly. I've never had a problem with getting the others, only the BT.

My insurance gave me issues in the beginning but after speaking with them about spending them spending $10 meds or $100,000 surgery they approve everything.

I did notice the people I normally wait with are starting to dwindle down. After talking with the nurses, It's due to them not getting meds filled so they either leave, get dropped for use illegal meds (Marijuana) or go another route (surgery, physical therapy, etc.).

What they are doing in Florida is working, they are cutting down people getting meds. However surgery, physical therapy, Botox, Accupuncture, psychotherapy, etc. is costing insurance companies millions and millions.

@ Cary, my C5 is fused to titanium on both sides.  They can do 1 disc in 25 minutes.  They do it quick and it's pretty violent.  Slit the throat, move throat and remove disc from the front. 

Post Edited (jpjr50) : 6/25/2015 8:57:33 AM (GMT-6)

I have fantastic healthcare insurance, company pays 100% too. I had a terrible recovery because they told me I couldn't leave due to the flu. Little did they know that flu was MRSA. Two months later I'm back in surgery getting a MRSA cyst removed in my right sinus.

I should have done 3 discs but they didn't know that until they cut me open. They are not allowed to fix everything on the spot as only the C5 was approved by my insurance (nothing else). We didn't know this until later. I was in a neck brace for 6 months.

A year later I was back in pain management with severe neck and nerve pain. This was 2010 so now 5 years later I'm hoping with today's technology I can be fixed without cutting me open again. I'm not going back to the University of Miami Neurologist Center again, the worst post surgery care too. I'm looking for a new surgeon.

jpjr50 it is not uncommon that the disc above or below, a fusion ( or both) to go bad, I had one neurosurgeon tell me that this usually happens within the first ten years of the first fusion! I got twenty five years out of mine before I had to have the disc above it removed and fused. The ACDF has gotten easier and easier over the years! My first one was done when this procedure was brand new, and they didn't use donor cadaver bone for the graft/fusion, nor hardware to secure it all together! For mine I was in the hospital 8 days and they took the graft bone from my pelvis, and I had to wear a cervical collar for well over four months. My second fusion twenty five years later, I was only in the hospital two nights and they used cadaver donor bone and titanium screws and bracket to hold it together, and I only had to wear the soft cervical collar a week or two and only when I was up and about! Maybe it would be better to get those disc taken care of??? But of course there is always the risk of complications with the surgery?? But it might be worth considering????

Also Is it possible to get a implanted pain pump? Is that even a viable option for you and your condition? I know I had a foraminotomy done from L3 thru L5 it helped but afterwards the surgeon told me that the L5 disc was shot and I would need further surgery and have a discectomy and fusion done. Well I did not want to have more surgery and my oral pain meds took care of my lower back pain and sciatica pretty well. However when I moved down here to Kentucky I ran into the problem of not being able to get my normal pain meds, and I was driving 300 miles (one way) once a month to old PM doctor in Illinois to get treatment. ( that got old really fast especially in the winter) So my PM in Illinois gave me a referral to the University of Indiana in Indianapolis to their pain management center to get a implanted pain pump. I have had it for just over a year now, and it works great! It does a really good job of controlling my lower back pain and sciatica pain, and I am no longer taking any oral pain medications at all! Could something like this work for you? Your main disc problems are in the cervical area of your spine isn't it? Can they do pain pump infusions that high up in the spine? Anyway.... it is just a thought I had when reading your post! Could something like this work for you?????

CaryF the disc (cartilage) is the part they remove, and they fuse the bones which is the vertebra above and below the removed disc together. They do this by inserting either ones own bone or cadaver donor bone in the space where the disc was, and this grows new bone in that area, and thus making just one big bone, or vertebra where there used to be two vertebra and a disc. This is why you lose so much mobility in your neck if you have more than one disc removed and fused. But I think I understand what you mean, because when you get a discectomy and fusion they always refer to it as (example C5/6 fusion) where they take out the cervical disc 5 and fuse the cervical vertebra 5 and 6 together.

White Beard

Its a tough call to make since you are doing so well with medications. Regardless whether the surgery is now or 10 years from now I would find myself the very best neurosurgeon I could to do the surgery. Like WhiteBeard said its very common for a disc above or below a fusion to give out over time. How much time is a hard one to answer because each person varies.

I am glad I have a pump & not have to go through some of the grief like some of the Floridians do to get their meds.

Thanks for the replies, much appreciated with the concerns of my condition.

My Dr. isn't on a blacklist, the Opana is just on back order everywhere. I get the rest of my meds just fine. The 3 Opiates are Opana, Nucynta and the Fentanyl patch. Nucynta shouldn't be an opiate but it is, I couldn't get this one years ago, never had withdrawls. The Fentanyl patch I change every 5-6 days now, I'm tapering myself off this one already. Soma to me is not addicting at all, I didn't have any refills last month (forgot to ask the Dr for a new script) and went an entire month without it (no withdrawl). I'm kinda different though, the only withdrawl I've suffered from was Exalgo (Dilaudid) years ago.

I have been looking for neuro's and put a list together. My wife and I will start visiting them one by one. I need a new MRI, it's been a while since I've had one.

It's been 2 days since my last Opana, I'm just about out of everything and even though my scripts are at the pharmacy I may not pick them up next week. If I get through the next 5-7 days without taking anything (other than Excedrin migraine or stomach stuff) I'm not picking my meds up ever.

I'm in agony pain wise, I only have the patch right now. I shouldn't have to suffer like this but mentally I'm too strong because my mind is telling me I can do this but my body is screaming no you can't.

I'm going to be real miserable next week and my wife knows it. I'm just hoping we can get to these surgeons quickly and get a date set up. I'm on vacation the end of the July and the goal last year was to have my surgery done so I'm recouping during my vacation week.

This sucks but I have no choice, pharmacy still has 0. There is nothing I can do at this point but to deal with the pain. The migraine is the worst part.

JP, sorry to hear of all the problems you have had. I am 2 weeks post op from ACDF with ProDisc C (artificial disc replacement) at c4/c5. I am a surgical technician and have passed the instruments on thousands of surgeries in 25 years. A one level procedure takes 1 and a half to 2 hours time. It is a 1 level disc between 2 vertebrae. Referred to by stating the vertebrae number above and below the actual disc being removed.
I had an old fashion ACDF with cadaver bone at c5/c6, back in 1991. Degenerative disc disease has caused the break down of the upper level I just had surgery for.
Took over 4 months from diagnosis to finally have surgery. Most surgeons want to try medications, physical therapy and epidurals first.
I was released the following morning after surgery, given 6 days of percocet and now taking only motrin twice a day. I have been able to drive for the past week. Have full range of motion, this type of surgery the vertebrae do not fuse together. Check YouTube for videos. There is no way I would be able to return to work this soon. Regardless of type of procedure it takes 6 weeks or more to be able to work. No lifting over 5 pounds for months. Pushing recovery too quickly can cause permanent damage, and the possibility of chronic pain.
I know for myself that because of my 1991 fusion, that the level below the fusion c6/c7 has a chance of deterioration in the future. But right now it is not a problem.
I hope you can find a good neurosurgeon and find relief soon.

UPDATE

Nothing new really to report other than I haven't had Opana or Soma in a week.  I ran out of Nucynta on Monday so a few days of not taking anything.  I just have the Fentanyl 50mcg patch on, that's it really.  The withdrawl I thought would be worse but not so bad.  The pain sucks but my mind is fighting my body.

We have put together a few neurosurgeons and now it's time to start calling for appointments.  Thanks for all the replies. 

You might need to re look at the calender July 24th is a Friday... July 22nd is Wednesday, I just had my pm appointment moved up...Good luck with your neuro appointment, start making your list of questions and I hope your pain can get in control soon. Worried about your increased pain without any help that can cause emotional distress as well, so maybe seek out a councelor for further help...
Prayers and well wishes and keep us posted, hope you can make it through this next week...