Am I making the correct choice?

[Richard Tulip]

Thanks Maria,

Thanks for the advice, i think what you are saying makes good sense, i am not in a critical state, just had enough with 'making do' and it is starting to impact on both my personal and work life far too much. I am a full throttle kind of person and want to get on with my life.

Why did you not get the third op done? did you manage your condition through physio? did it settle down? what where your symptoms?

What where your your circumstances when you had your first two op's?

what did you have done in the first two ops?

sorry for all the questions!

Thanks Richard

[Maria]

No problem Richard re questions. I had an L5S1 discectomy (big open surgery) in '89. Symptoms were 8 years of back going out with loads of pain, being off my feet for 2-8 weeks at a time and finally I decided to have surgery when I was off my feet more than on them. I was RN,NP (Nurse Practitioner) at the time and back problems were sort of the "kiss of death" for a nurse's career back when I first injured myself.

2nd spine surgery was L4 percutaneous discectomy at L4. Unfortunately it was the beginning of when this was being done and maybe the beginning of when the Neurosurgeon was doing this type of surgery (had it for similar symptoms as first surgery). Anyway it failed horrendously as I'd never have imagined that pain could be so awfully nightmarish and be 24/7. Loads of burning pain from my waist thru buttocks, down my legs into my feet plus the back pain.

So this was '92 when I had that surgery. And then I lived with super bad pain that back then wasn't treated with ESIs, wasn't treated with pain meds, was basically told I just had to live with it. No other surgical recommendations given.

Move forward to 2000 and I thought "I've had it... can't live like this" so I was offered a 3 level global fusion in order to "fix" my pain.

I started talking to people that had multiple level fusions and not many did that well and even if they did they were having more surgery down the road for adjacent levels so I just didn't see myself going there so when I heard about ADR (Mass General Neuro forum that Mark used to write about his spinal endeavors) I started following Mark's endeavors to go to Germany and have ADR surgery done.

By 2003 I got WC to authorize a visit to UCSF (CA) with an OSS that did ADRs and got authorized for the surgery but I had moved to Fla by then for a a short period. By the time I could have had the surgery the surgeon had to have shoulder surgery and the trial was closed.

I didn't get authorized to see someone else again until 2005 (had moved back to CA) and was trying to see Dr. Delamarter but saw someone else in his office who dropped the ball on my ADR paperwork and WC rescinded the offer for ADR because necessary paperwork wasn't turned in on time.

Finally saw Dr. Delamarter (with Mark along to help me out) and he agreed to take me as a patient. WC sent me to 2nd surgical opinion with Dr. Coufal in San Diego and Mark accompanied me and the surgery that was approved was a hybrid of ADR at L4 and fusion at L5S1.

By now we are talking late 2005 going into 2006. Thing is I was starting to feel better and more stable or with less pain that I had in years (not perfect just way less than all that burning nightmare horrible crazy stuff) and truly I was just afraid to take a chance that I might go back to any level of the neuropathies again as that pain was so incredibly gnawing and grueling ...

So here I am today on a low dose opioid pain medication for my back every day which I do pretty good with. I no longer take anything for neuropathies and my L4 La5S1 area has auto fused (or some part of it) which has actually reduced the pain at the worse level that bothered me for so long which was L5S1.

I guess I was so relieved at feeling the level of relief I have achieved these least few years that I felt like "better the devil I know than the devil I don't". You'd had to have gone thru what I did for the time that I did to understand my thought process and decision. Ideally I would have liked to have gone abroad to have the surgery as I felt the greatest expertise was there plus other factors yet this wasn't monetarily feasible for me.

I felt that here in the US insurance determines how many levels we can have done re ADR (unless one can pay cash) and I also felt that the real expertise is abroad or other countries where a surgeon is not limited by the FDA, Insurance, etc can do for the patient what he or she feels is necessary to do. I could not afford to pay for this surgery (may have needed 2 or 3 levels abroad) and Workers Compensation (future medical benefits paid for re my initial injury at work) would not have paid and I would have been discharged from the medical services covering my back and my pain all these years. If I had surgery abroad and needed anything else such as pain management still I wasn't sure how I could have handled that... so finances/insurance also played a big part in my decision as I really wanted to have the surgery done abroad if at all.

Again this was my thinking at the time re 2006. Now I'm no longer a candidate for ADR re naturally occurring degenerative changes to the spine. This is Ok thus far as these changes seem to have stabilized me a bit or so I think. However that has been a long long haul that I would not encourage anyone else to undertake (the wait wait wait wait wait and see period).

We take a leap of faith whether we make the decision to have surgery or more surgery or no surgery or surgery at some point vs. another. I don't do a lot of things I used to do prior to my back problems (then again I was young) but I don't live in the type of debilitating back and back related pain I did for so many of years 24/7 either.

And that is why I didn't have any further surgery~ to date at least. Never say never.

[jsewell]

Richard regarding my movement , it is not as limited as i expected from being all fused. My neck is probably the most limited. It is unfortunately in a forward position and kyphotic. It kind of brings my whole back out of alignment. I also an dealing with drop foot a complication of having my L4 and L5 very inflammed. I am having surgery to fix it at the end of June. I am very excited about that. If i try to move my torso or trunk area to the left and right i get only a little motion. Legs are still weak but they do not affect walking at all. I used to be a mountain trail runner and had to switch to hiking. But i have in the past been able to hike as normal. I have a lung deficiency problem which is keeping me from any intense exercise, but i am starting to make myself get back into some serious cardio starting tomorrow. I only have 50% lung function left do to a surgical accident when removing the disc at T 7-8. The nerve that controls the diaphragm muscle was damaged.
Ask any more questions that you like
JUdy

[henry4956]

Rich, see my 'PM' and let's talk.

[henry4956]

I will not (because I am a layman) try to tell you what you should do, but I do agree that not getting the perspective of a surgeon who does both adr's and fusions and know when fusions are appropriate and when adr's are appropriate is quite logical. That's why I believe Dr Zeegers opinion (if you can spare about 700 euros) can be so valuable for your sanity. It's never too late until they stick that needle in you that puts you to sleep before the surgery. You have a short amount of time if you seriously want an alternative opinion. If you are as unsure as you sound, you might consider delaying until you can compare what may be 2 very different opinions. I say you have 1 chance to get it right. Don't be hasty and if you can don't let money decide for you. I knew I might get a double fusion (but that would have occurred only if my bone density was not up to snuff) fortunately Dr Zeegers saved my spine with a double adr. He performs 'Hybrid' surgeries that are usually just as effective as double adrs at L4-S1. It would not surprise me if a 'Hybrid' could possibly be a solution for you. I'll go no further here because it's all conjecture. Take a deep breath.

[henry4956]

by the way - the 700 euros is a average cost of his very detailed diagnosis. IMO it's well worth the money even if you go another way

[Tim]

Hi Richard
I definitely agree with everyone thats said see someone who can offer both options - fusion and ADR.
Fusion at 5/S1 and ADR at 4/5 might well provide the cushion to stop the 2 levels above deteriorating further.
Where are you in the UK? There are good surgeons in the UK who can offer both options but possibly not in your location. Are you limited to NHS or could you go private? See a couple more surgeons privately to get opinions - you don't have to proceed to surgery and can always switch back to NHS..
If you need help with surgeons i might be able to help.. Try visiting the UK ADR site where you'll find details of UK doctors..
Wishing you all the best
Tim

[Richard Tulip]

Thanks to everyone for all the info, its been a big help, I have put off my surgery and have an appointment with my surgeon on Thursday to discuss options moving forward.

Mark, ive sent you my email

Henry, ive PM'd you