Richard from Perth West Australia, looking for help and advice

[richmc]

Hello to everyone.

I have joined the forum looking for information and understanding in difficult times.

About me;

Suffered a double disk herniation (full) at levels L4/L5,L5/S1 in late 2006.
Had IDD treatment (Google IDD) in London where I was based at the time and went from 60% lower left leg numbness and agonising lumbar pain with the assosiated problems of walking, to being virtually pain free for 3 years.

I changed my lifestyle, moved to Perth WA and exercised my back, as prescribed by the specialist, with religious fervour.
However, in mid June 2010, the problem flared up again, with localised lumbar pain and sciatica down the left leg. But this cleared up after a couple of weeks and I have been (hope I am not tempting fate with this next bit) virtually pain free since, but the pain will return, maybe in an hour, maybe in 3months, as I have been told that L5,S1 will be "bone on bone".

Referred to a surgeon, who has said I have one of 3 options because I have severe DDD, with little disk left at L5/S1;

1/ Traction...see IDD above.

2/ Cortisone injections...this just masks the problem, doesn't treat the cause.

3/ Fusion surgery...when I enquired about ADR's/TDR's, he dismissed my enquiry with a wave of his hand...he does not do them and did not seem to want to talk about the implications for the adjacent disks.

However, he did calm my worries about spending the rest of my life in a wheelchair and on a diet of painkillers...by saying that I would not end up in a wheelchair....but would be on painkillers.

Whist I was told that there was no need to rush into surgery, salient advice I am sure, I can't linger, because, correct me if wrong, if the disk space becomes too small a TDR/ADR cannot be fitted properly.

I believe in being proactive in situations like this, not reactive and have been in touch with Stenum/Pro Spine and Dr Matthew Scott Young in Brisbane Aus....Does anyone have any advice regards these choices, or any additional suggestions?

I believe forums like ISPINE are invaluable in getting information and making an informed decision, so please, if you have any suggestions let me know.

To all those out there suffering, you have my heart felt sympathy and best wishes and in the not to distant future, very probably my empathy.

Regards,

richard

[Katie]

Welcome Richard You will find that most on this forum have had similar if not exactly the same experiences as you.

I had suffered for almost five years, with local surgeons saying that they do not operate 'just for pain' in my same lumbar levels. I also had a badly compressed spinal cord at the C5/6 level which caused neurological problems.

I found a fabulous surgeon in Brazil who also travels to the US, working with Nuvasive; a top-notch manufacturer of spinal appliances and new minimally invasive approaches to surgery. Dr. Luiz Pimenta was first brought to my attention by another fellow from Perth, Australia, who went to him after his ADR surgery needed revision.

Dr. P's opinion for me was that ADRs were used much too often in the L5/S1 levels, but were a good choice for the L4/5. Unfortunately I was not a candidate for that either. I had discovered that I have severe allergies to all the metals that would be used in spine surgery, including the titanium alloy. A metal free ADR for the lumbar is not yet available anywhere, so I had to have plastic PEEK cages instead, with no reinforcing rods or plates.

But there is a silicone cervical ADR available and it was used in my C5/6.

So I suggest that you have more options than you first thought. A good number of my friends have gone to Stenum with wonderful results. They are more prone to use ADR at all levels, but if necessary will use hybrid surgery...combinations of the above. Each case if different of course, but all that I know have been very happy with the results.

The networking on these spine forums is amazing and has saved my life, literally. I hope we can do the same for you.

[Katie]

I am not familiar with the Australian surgeon you mentioned. But one of the most important things to find out is how many ADR surgeries he has performed, and if you can contact any of his patients. While confidentiality is an issue, quite often patients will offer to help. Any surgeon with less than 100 or so under his belt is just too novice for me.

The surgeons most of us have gone to have done thousands of surgeries.

You are also correct about the injections...I had eight with no results.

The surgeons who dismiss ADR surgery are just the ones who haven't chosen to learn about them. There is a circle of very skilled surgeons who will be able to help you...it just requires some research on your part, with some help from others who have already 'been there'.

[dshobbies]

Welcome Richard,

Usually an ADR is preferable to a fusion because a fusion doesn't move. However, your lumbar spine moves the least at S1/L5 and in your case, if the disc height is severely compromised, an ADR might not be feasable whereas it may entirely be possible at L4/5.

The only honest opinion you'll get is from a doctor who does both ADRs and fusions. If he doesn't do ADRs, he's not going to recommend one. You also want a doctor who had lots of ADR surgeries under his belt, which still doen't guarantee a quality doctor but at least you won't be a guina pig.

Stenum started off with a bad reputation but those who have found success with them believe this zebra changed its stripes. It caused quite a fracus on this forum and most pro-Stenum spiney's left. Now, even Dr. Bertagnoli in Germany, long considered one of the best ADR surgeons, has come under well deserved scrutiny as of late. Dr. Zeegers, also in Germany is still at the top. The US has several top ADR surgeons, at probably the highest cost, and others can recommend doctors from different countries including Dr. Young if anyone has experience with him.

I will tell you this, that your choice of surgeon is your most important decision. Choose wisely and good luck,

Dale

[Maria]

I have had the same areas w/problems as you. Even tho I had recommendation for both the 2 level ADR at one point and later a hybrid surgery with ADR at one level and fusion at the L5S1 level since I had started feeling better than I had in a very long time and much more consistantly I chose to do nothing more surgically.

L5S1 has pretty much autofused on it's own now but it has been a very long haul and I have gone the route of lumbar ESIs the last 10 years and low level pain medication and medicine for neuropathies.

I'd not recommend spine surgery urgently however to get opinions while you're feeling good and then maybe while you're in this process if your spine flares up you will have decided what you want to do, with whom, how, when and where.

I'm not at all unhappy with what has happened with my L5S1 level at this point without having any surgery done. I'm not convinced that everyone has to have surgery just because the disc space is flattening out. In fact I'm quite pleased with what I've been able to do in the last 5 years (again I presume from the L5S1 level autofusing) compared to the many years following my 2nd discectomy (failed).

While there have been many persons that have actually had their lives made better with surgery there have been probably been plenty who haven't. Even the best potential case can turn out not so hot so really think about what you're doing and make your decision for the right reasons. Be prepared for whatever result you might get from surgery.

Good luck of course with your spinal endeavor. Not trying to rain on your parade it's just that here you will find near every range of the spinal spectrum regarding surgery and/or more surgery. At one time I was very gung ho to have more surgery tho couldn't have mentally or physically dealt with another failed surgery and another set back after feeling so much better. So I let my body be my guide.

And yes, it's true.. I waited too long and the degenerative processes kept going on so I was told ADR was no longer an option for me so there's the flip side of the coin re getting things done while one is still a good candidate.

[richmc]

Thanks to Maria, Dale and Katie,

for their replies to my first post.

It's very gratifying and interesting to hear other peoples stories and opinions on your own personal situation.

You all mirror my thinking regards the amount of ADR/TDR replacements done is important, this is why I was erring towards Germany, but then Harrison from the ADR Community forum suggested Dr MSY in Brisbane Aus, who has over 1000 TDRs' to his name and also helps to develop new hardware...but I have not been able to get an idea of how much he charges, whereas with the German clinics you are given an idea up front.

The interesting thing about the whole back problem area, apart from the nitty gritty as to what is physically wrong, is the psychological bit.
The bit that has you thinking 'I must do something now! Not tomorrow, but now!'...and which could have you rushing headlong into a potentially terrible mistake.

But at the same time how long do you wait....and could this be too long in the case of disk space narrowing and fitting a ADR/TDR.

There are so many variables to take into account regards spinal surgery and the possible outcomes and this varies for everyone...so when reading all the reviews and opinions of certain surgeons, the good the bad and the ugly, you never really know if it was the surgeons fault or the patients, or a combination of the two.

So when it comes to choosing a surgeon, taking it for granted that they choose you in return, how much faith can you put in the reviews you read?

The issue of L5/S1 ADR is one that has been playing on my mind and I had come to the conclusion that a fusion would be the better option, if, L4/L5 had a non-compressible ADR (Maverick M6) inserted, as there is not much mobility to be lost there, 2-3% I believe.

However, even if all goes well, no subsidence etc, having a prosthetic inserted could cause problems that were not there to begin with, because the geometry of the back has been changed after x amount of years working in a certain way....I had an orthotic made for my right foot once to stop it pronating, it stopped the pronation, but caused too many problems with my right leg to make it worthwhile....my body was used to the pronating right foot.

These are the issues that I have been wrestling with, but have come to the conclusion that Hybrid surgery would be the better option, because without it, to be honnest, I don't have much of an option.
But who???

And I believe that this puts me in the same boat as so many other people using this site....which is why it is so good... and to echo Katies' surmise, a potential life saver.

With best wishes,

regards,

richard.

[Katie]

On top of the reasons already mentioned, I also went to Dr. Pimenta because his surgery was much less than anyone I checked with in Germany. I don't know what I would have done if it wasn't, as it took every available cent we had.

Just another issue of having to go without insurance. It stops so many people who need help.