Hi all. It's been a while since I've posted anything. Here is part of my story again:
- 1994 lumbar surgery for herniated disc;
- 1995 cervical surgery for stenosis;
- 1997 lumbar surgery/flatback; harrington rods;
- 2000 cervical surgery/kyphosis; harrington rods cervical/thoracic area;
- 2006 spinal cord stimulator implanted;
- 2011 spinal cord stimulator removed
Currently I am still having major issues with my cervical and lumbar spine. Myelomalacia of the cervical spine. There has been a decrease in my neurological exam. My arms seem to be getting weaker. I have lumbar problems too but because of the harrington rods they can't get an accurate reading on the problem. There is arthritis, neuropathy as well in my legs.
I was on oxycodone 6 tablets a day maximum and a muscle relaxant Baclofen but was taken off of it because of side effects. Difficulty breathing.
I am now on Hydrocodone and Tizanidine. I was put on max of 6 hydrocodone per day 7.5-750 mg and 2 mg of tizandine 3 times per day.
Seeing my neurosurgeon next week. But as of last visit last year he was afraid to touch me surgically. Not sure what he will tell me when I see him next week. But will probably do another MRI to if there are any changes since last year. But last year he was afraid to touch me surgically. He said to get to the area in the nect they would have to go thru the sterum and it would be a surgical nightmare.
Been on medication for th past 5 or 6 months of so.
I am at the point that I feel they are basically telling me there is nothing more to do for me except medicate me with narcotics. But finding the right combination of medications is part of the issue. But what concerns me is being on something like hydrocodone and becoming addicted to the medication.
At what point do you stop looking for surgical answers? And how do I handle the medication issues? Am I at the end of the road on possible treatment and have to resolve that I will have to live in pain?
Any suggestions? I don't know where to turn. I am in therapy to help me deal with the pain. I just want to find an answer of how to live a more normal life at this point.
Thanks for any input and listening........
Allan
The following user gives a hug of support to pebblebeach2: kenzibenzi (05-16-2012)
You and I have talked before so I know your story. I think "when" you give up on surgical options depends on how much you want to fight or have the $$$$ to fight and keep looking. Some people will travel the world looking for answers and help and some give up with the first time they hear "no". It really is an individual thing. My best friend's daughter is up here(Boston) from Florida getting treatment for her 9 year-old daughter's very rare cancer. You fight for your child.Yet my mother refused all treatment for her cancer after just 1 oncologist said it was untreatable. The answer has to come from inside of you.....how much do you want to fight the pain your in?
Some docs just don't want to really hard cases and some thrive on them....you need someone who thrives on them. That may be the difference in the docs and not your problems....although I know just how bad you are. I just had my lumbar done after my doc stalled for 5 years fixing it as he knew it would be a huge problem. But we came to a conclusion on how much he'd do and low and behold, it worked beautifully. I can walk again. I just needed to push him to at least try.
So how much do you want to try to fix your spine instead of just enduring the pain? And you have to factor in the possibility that the pain won't go away even if they do surgery. I was not in pain but both legs were becoming increasingly numb and my incontinence was growing. I figured I didn't have much to lose.
Yes we have spoken a number of times over the years. In my heart I feel that there is an answer out there somewhere.
Financially I am limited on my options. There are good doctors on my plan. I keep looking to see who might help me. But I feel like I am constantly running into dead ends. I always believe in going to the "best doctor" that you can find.
I really don't want to give up "hope" that there is an answer out there that will at least give me some relief and that I can function at a better level, not perfect, but better then I am now.
Some doctors wont even see me. They see the initial reports and thats where it ends. Never get straight answers on what my options are.
I do pool therapy, I'm on medication yet nothing is working. I just feel that my back is against the wall at this point and may have to accept the reality that nothing can be done medically for me based on the current medical knowledge.
I'll talk to my neurosurgeon when I see him next week. I like the guy. If I didn't I would have moved on a long time ago.
Not sure what to really say or feel at this point. Just feeling frustrated and completely overwhelmed.
So tell your NS just how frustrated you are and how you don't want to give up just yet and settle for a life of pain. Took me 5 years to talk my NS into lumbar surgery. He told me it was a 50/50 "crapshoot"(his words) that I'd get any improvement at all and I wouldn't know for possibly 2 years after surgery. I knew it had worked 6 hours after I woke up from surgery.
Tell him and maybe he'll get his creative juices flowing and try to find a way to help you. Personally, I think half the battle is knowing that we want to try and we have hope. Once he knows that, he might be more willing to try. They just always seem to put a negative spin on anything as it can go wrong so easily so they want you to know the worst, instead of the possibility of the best outcome.
Location: San Francisco, California, United States
Posts: 701
Re: Do I have any options left?
If your upcoming visit with your neuro is not productive, a visit to an orthopedic spine surgeon might offer you a different perspective. Not that you would have to leave your doctor, but getting another consult can't hurt.
Not sure if your moniker indicates that you are a golf fan or that you are in Northern California, but I know that Stanford's Spine Clinic has the reputation of taking on difficult cases. I had my lumbar surgery there, and they take a wide range of insurance. (I have to say that my spine surgery was not entirely successful, but I know I sought out the best doctor and sometimes stuff just happens.)
I used to live in San Francisco in the mid 80's. I grew up in Jersey and returned to Jersey for family issues but Ca has always been my home in my heart at least, so thus the name.
As to an Orthopedic consult I did try to consult with another doctor in Philadelphia. Sent him the reports, but he wouldn't see me. Basically said there was nothing he could do for me. I got a lot of responses like that lately. Doctors telling me I am a complicated case yet not much can be done for me.
I still feel I need to connect with the right doctor that can look at me from a different angle. I feel like there is an answer out there. Maybe I won't ever be like I was when I was younger, but something tells me something can be done to help me more then just medicating the heck out of me.
Location: San Francisco, California, United States
Posts: 701
Re: Do I have any options left?
If you want to keep pushing for a consult with an ortho, you could try the Hospital for Special Surgery in New York. I know that there is a great hip surgeon there, and I think that the facility's reputation in general is quite good. You could also call Stanford and ask them for a local specialist, maybe someone who did a spine fellowship at Stanford? Let us know how the appointment with the neuro goes next week.
I had one of my prior surgeries at the Hosptial for Special Surgery. Great hospital and great doctor too. Unfortunately being on Medicare and the supplemental insurance that I have HSS is not a participating doctor on my plan.
But I was thinking of seeing a doctor there anyway, but it depends on what the office visit would cost me out of pocket. I will see what happens with my neurosurgeon then make a decision from there.
Will keep you posted.
The following user gives a hug of support to pebblebeach2: SweetPeainSF (05-17-2012)
