Summer of surgery ahead!

[on pause]

Hey
I posted a few weeks back about my situation. I have seen 3 surgeons since then, and it was a tough choice deciding what to do, as each person had a completely conflicting view of what to do!

One doctor said I shouldn't get ANY surgery, and if I did, just a lamenectomy at L4/L5. I did that back in 2003 and reherniated one of the operated on discs 3 weeks later!

Saw another doctor who said fusion at L4/L5 and L5/S1 was the only way to go and that he wouldn't even put an ADR in his dog (his exact words). He failed to mention the lasting effects of a full fusion with regards to my age, and was a difficult man to talk to, as he didn't speak unless spoken to the whole appointment! I had to mention to him which surgeries I thought were best! So certainly not my doc!

The other doctor I saw struggled for a while to come up with a plan. He said if I was over 40, it would be an easy decision, but since I'm 23 he was hesitant to do a full fusion, as it is so permanent.

Both he and another doctor he was consulting with decided on a course of action. Unofrtunately I'm not so much of a candidate for ADR at L4/L5, something about how major arteries were too close. So this May 18th I'm getting a fusion at that level, then 8 weeks later, a Prodisc ADR at L5/S1.

Its all booked, forms are signed and now the waiting game begins! I have to admit I'm pretty terrified of the prospect of 2 huge surgeries so close together, and spending my entire summer recovering. I know it won't be easy, and it's going to hurt, but I need this in order to go back to school and try to build some sort of life for myself!

Does anyone have any thoughts on what is being done?

PS. The fusion will involve some of my bone and artificial bone, so nothing is coming out of my hip

[mmglobal]

If the reason for not getting ADR is the vascular situation, I'm not sure I understand this plan.

>>> did they do a CT Angiogram to determine vascular configuration?

It sounds like the plan is for something like a PLIF or TLIF at L4-5, followed by an anterior surgery for ProDisc at L5-S1.

The vascular situation is not known for sure. Unless you've already had an anterior spine surgery, it would take a very unusual vascular situation to preclude ADR. If my undertanding is correct and if this were me... I would proceed as follows:

> do anterior surgery for planned ProDisc at L5-S1.

> while he's there, he may discover that the vascular situation does not preclude ADR at L4-5. This all depends on how easy it is to mobilize the vessels. I've probably observed over 200 lumbar ADR imlantations and have NEVER seen a situation where the vessels presented any issue in a virgin approach. (And rarely in a revision.) So, it may be easy to do the ADR at L4-5.

> if it's not easy to do the ADR, they could still do an anterior fusion with something like a STALIF cage. This does not require as much room for insertion as ADR does. If the final configuration with STALIF or other anterior device looks good, they may not need posterior surgery.

> if there was no ADR at L4-5 or if the fusion config does not seem to be sufficient, they could flip you over and do whatever posterior surgery you needed in the same OR session. (If this occurs, the doctors and hospital will all still get paid for 2 surgeries.)

Telling you that you are not a candidate for 2 level ADR completely disarms any discussion about off-label use and the related insurance or risk management issues that sometimes steer the ship instead of medical issues.

I would rather recover from one surgery instead of 2. I would rather stay away from violating the great muscles of the back if I was already having an anterior surgery... why not do it all from the front?

Please note that I'm not a doctor... just a layperson. Don't believe anything you read on the internet!

Good luck... please keep us posted.

Mark

[mmglobal]

By the way, I can't tell you how many doctors I've seen who would not do ADR on their dog... while they can't do ADR. Somehow, when they learn enough to make an informed decision about it, they start doing ADR. Actually I can tell you... it's dozens.

Mark

[Maria]

Not even on my dog.. that sounds like my OSS and what he wouldn't offer me until he started doing ADRs. Then it was offered (and already had been by others).

I can't comment on anything except to suggest getting a few more opinions. Unless you're in an emergent situation you have time and since you're as young as you are I would definately take the time to get a few more opinions even if you have to travel a bit. Find surgeons that have been doing ADR for some years now as well as fusion and get the their opinion.

When I was checking out 2nd surgical opinions (and 3rd,4th,5th and 6th) I would call the surgeon's office and ask to speak to the personal secretary or assistant and inquire if the surgeon does perform ADR and for how long/how many before scheduling an appt. I found out quite a bit of information this way and even had several surgeons call me back and speak w/me personally.

When it all got down to it all surgeons agreed on what they'd do tho by this time I was feeling better so didn't have any further surgery (I've had a very long history of back probs and 2 previous surgeries).

I think Mark is the best resource layperson there is out there because of his experience and I would definately take whatever he has to say into serious consideration and if you're so inclined contact him personally. He has been a great help to many of us here!

Good luck. Proceed w/caution and do your homework for real on this. Whatever Mark has told you please check further into. You'll probably get more information from him than any surgical consults you've had to date.

[dshobbies]

OP,

I realize you've gotten 3 opinions, 1 from a doctor who does not believe in ADRs which IMHO should be dismissed entirely, and another who only wanted to do yet another discectomy which is also not a great option. So the only opinion that's somewhat good is your ADR/fusion hybrid, done 8 weeks apart.

For me, this would not be acceptable. Both surgeries are difficult and I would not want to recoup from one only to go under the knife again. However, perhaps your doctor will consider Mark's recommendation. You might want to give him a call GPN Artificial Disc Replacement ADR . He has a lot to offer spinal patients.

I also saw you live in Canada with a confusing health care system which we've heard does not always consider the patient's best interest.

But here's the thing - you know there's always a thing - fusing L4/5, especially at your age, is quite likely going to lead to futher degeneration at
L3/4. This is not a definite but a strong possibility.

I know you're anxious to get this going and put these surgeries behind you but you've pretty much got only one chance to get this right. I wouldn't be jumping into this surgery until further exploring the possibility of an ADR at
L4/5 too. You still might have problems with L3/4 down the line but the line will be much longer.

Let me also tell you I've got absolutely no medical expertise and I'm speaking only as a patient and forum reader. You must do what you feel is best for only you will live with the benefits/consequences.

Dale

[longroadahead]

I am by no means a doctor but a ADR at L5/S1 and a fusion at L4/5 doesn't make sense to me. From what I have read the L5/S1 has the least amount of movement and the safest to fuse so you would want to fuse that and have the L4/5 ADR.

Understand you have complicating factors that rule that out but the 2 surgeries so close together would not be an option for me. I would try to find a one surgery solution.

Is the L4/5 so bad that you couldn't have dynamic stablization and have the surgery all at once?

[Maria]

I had thought the same as others are stating here re fusing L4 and ADR at L5S1 which supposedly has less motion/movement so usually if hybrid is suggested it seems to be the other way around but don't know what your facets look like or other surrouding structures at those levels however you're pretty young so would imagine things should look much better on you than many of us that have been offered ADR at L4 and L5 S1 or hybrid surgery w/ADR at L4 and fusion at L5S1.

Now that being said I'm not a doctor either but have had spine problems since I was 28 and am 57 now. Have had 2 discectomies (L4 and L5S1). Have had doctors recommend 3 level fusion at L3,L4, and L5 S1.

Have had 2 level ADR recommended then when didn't to that and a few years passed my facets were a factor to not recommend ADR at L5S1 as well as no FDA approval for 2 level ADRs here in US yet.

Anyway about 6 opinions later and pretty much everyone was agreeing I didn't do anything more however Mark was of great help to me and I can't recommend at least talking to him enough. Check out the website Dale has posted.

Not trying to push you into anything however really want a young person like you to make as good a decision as you're able with surgeons that really know the newer technology and with the experience so that they can offer you what they think will really work for you vs. the only thing they might know how to do well.

And again.. not trying to nag you. Just wish things had been different when I was in my 20's and even 30's and there had been as much exchange of information available as well as access to it.

[jsewell]

I know nothing about ADR's. I am almost a totally fused spine except the upper 3 cervical levels and the lower 3 lumbar.
What i am writing about is the length of time between surgeries. I had a major reconstrucion of my thoracic spine on Sept 24th. T2 thru L2. Then at my first follup visit it was discovered that i had vertebral fractures on 2 thoracic vertebra and i had surgery on those on Nov. 4th. Then my first post op on that one, my neck was in trouble and on Jan 7th i had major reconstruction including breaking my neck (osteotomy's) in the cervical/upper thoracic area. C4thru T5? I am 53 and recovered fine from all of this , so at 23 i think it might not be the most pleasant experience, but you can do it. If it comes to that.

[on pause]

Hi everyone, thanks for all for replies.
This is a lot to take in! I'm feeling really confused and sort of having a panic attack right now! Sorry if my reply isn't entirely coherent, but I'm having a hard time sorting out my though process. I do feel rushed in all this as I need to get on with my life!

I've been living with all this for 10 years and have had to missed so much schooling, both high school and especially university. Once I'm out of school (though for medical reasons and not by choice) for 6 months I won't qualify for my parent's insurance any more and will have to then pay for all my physio and medications. I will also have to start paying back my student loan, and since I'm not working this will be impossible! This is why the surgeries need to happen soon so I can get back to school and try and finish my undergrad (which will have taken 7 years to get if I'm lucky).

I thought I had finally found my doctor after years of searching, and now I'm starting to question that. I have to have seen 20+ docs in the past 6 years, from neurologists, neurosurgeons, pain specialists, and orthopedic surgeons. I am even a part of something called Best Doctors, where they try to match patients with doctors that meet their criteria. I feel a little under the gun time wise, and it takes a long time to even meet with a doctor, my surgeon has a wait of 2 years normally! It seems most of the best are not accepting new patients, I've tried. Then even if I feel comfortable with the doctor (a rarity in my experience), then I'd have to wait longer still for a surgery date, and many of those are a year at least later. I can't live the way I have been living for much longer. Schooling aside, the constant pain, the sleeplessness and the lack of any real life are driving me mad! I can't take my dog for a walk, I can't hold my baby nephew, I have no life and haven't for a long time.

I'm new to the whole idea of ADR and fusions, and thought I had done a lot of research, but am starting to doubt what I thought I knew too! The reason for the two surgeries was that my doctor wanted to see if just the fusion made me feel better enough to get on with my life for the time being, and to postpone the ADR for later. If it didn't greatly improve things, then the second surgery would go ahead.

I'm not 100% sure why my doctor doesn't want to do the ADR at L4/L5. I had a CT scan done and he said it would be risky with the way it looked on the scan. He said there would be too great a chance of tearing a major artery. He was very hesitant to do a fusion at all, and he explained the risks that it may affect the L3/L4, but that all my other discs looked very healthy. Apparently nothing was blocking my L5/S1 though, and he could go ahead with an ADR at that level. He advised against fusing it all due to my age.

I'm not so great with the acronyms...what is STALIF, TILF and PILF?

I know for the fusion there will be some sort of cage involved. Are there some that are better than others? I meet with my doctor again for all the pre-op stuff, what should I be asking him to make this the best informed decision?

I will think of more replies to all you have given me, I just need my head to stop reeling.

Thanks

[mmglobal]

I'm getting ready to go for my discogram and possible thoracic discectomy... don't have much time.

All the "LIF's" above are lumbar interbody fusions. STALIF is Stand Alone, which is done from the front and does not require posterior screws and rods (hence stand alone). Many surgeons will still add postior hardware saying 'to be safe'. The ones that don't say you don't need a belt AND suspenders.

PLIF is posterior. TLIF is transforaminal or kind of a modified posterior approach. Both are from the back and include screws and rods.

Many don't understand that your surgeon not doing ADR at L4-5 is his choosing that level for fusion... it is his feeling that there is a contraindication for ADR at that level. MY guess (remember that I am not a doctor) is that he is not comfortable with the approach. Unless you have something really weird going on, that would be HIS comfort with the approach and a very experienced ADR surgeon would not even pause.

It sucks that you have the external pressures of timing and insurance. I'll be home next week... call me (number on my website linked below) or private message your phone number and I'll call you when I can. The long travel days (hopefully tomorrow) give me time to catch up on phone calls. Of course... no charge.

Mark

[Burr]

(He failed to mention the lasting effects of a full fusion with regards to my age.) If you could explain this sentence, I would like to know what is known about the lasting effects would be. I was never told what lasting effects might be /thanks for any info.

[mmglobal]

many people have successful fusions, but years later, they experience the domino effect. When 2 or more vertebral bodies are fused into one, with no mobility that was provided by the discs that have been removed; you run the risk of adjacent segment disease. The adjacent discs are overloaded because of the mechanics of the fused spine and a few years later, the next level needs surgery, then the next...

Note that having a fusion does not guarantee that you'll experience adjacent segment disease and having ADR or other motion preservation surgeries does not guarantee that you won't. If you believe in motion preservation you believe that you SUBSTANTIALLY reduce the risk.

[Maria]

I made my worst spinal decision based on feeling pressured re timing. My own personal experience w/getting surgical opinions over the years and I got a number of them was that a surgeon who could perform whatever was necessary w/whatever technology was confident in offering it. That is unless my own clinical findings were a contraindication which would only be known with the necessary diagnostic testing done within a certain time frame relative to planned surgery (not years before as probs can change w/short amt. of time/longer time).

The surgeons that were limited in what they offered offered what they know and or as Mark stated felt comfortable with and I sort of found that out because of the number of consults I had and who was doing what and how much they were doing of whatever surgery.

I realize you're reeling from all the input. I was too when I was getting mine. We all missed something with our spinal journey like school, work, time from life and so forth however when you make a good decision re surgery you'll thank yourself. I didn't with my 2nd spine surgery and I paid dearly for that decision for many years afterwards. I was rushed by work scheduling, insurance timing and so forth and really didn't take the time to even get a 2nd opinion on that surgery. Living w/sour grapes, regret, more pain and probs post a spine surgery can really be bad.

Actually you're still in a good place right now.. you've got options it's sounds like and you've not yet had surgery so when you're done reeling from the input, concern, fears and worry just realize you're that much more ahead of the game as you do really have time to check things out a bit further.

So many people here made excellent decisions about choosing a spine surgeon and have had outstanding results. I'm not one of them and it has impacted my life in a way that for the longest time I wished I could turn back the clock.

I'm older now and much time has passed and I feel better but believe me I do understand what you're saying and where you're coming from because I was there too in my 20's and 30's.

[mmglobal]

The idea of having surgery on the disc that's known to be bad first, then only in doing surgery on the second level if it's needed a makes a lot of sense. I misunderstood the plan and had thought that is the second surgery was simply being planned months later regardless of the outcome of the first surgery. Much better!

[Maria]

I may have misunderstood as well. Thought one surgery planned for 5/18 was fusion and second surgery to be ADR 8 weeks later at L5S1.

Maybe you meant ADR at L5S1 and surgery later at L4 if necessary?

Or maybe I just got it confused completely.. if so, my apologies!

[on pause]

Originally Posted by Maria

I may have misunderstood as well. Thought one surgery planned for 5/18 was fusion and second surgery to be ADR 8 weeks later at L5S1.

Maybe you meant ADR at L5S1 and surgery later at L4 if necessary?

Or maybe I just got it confused completely.. if so, my apologies!

No, you understood it correctly. The L4/L5 is a newer injury (sort of) causing me a great deal of pain down the right side of my back and leg. All my other injuries were on the left side before, the worst caused by L5/S1 nearly 3 years ago. The pain I feel down the left leg is from a lot of nerve damage, and given the extent of damage and amount of time I've had it with zero change indicates to every doctor I've spoken to that it is permanent damage. The idea was to "fix" L4/L5 first, as L5/S1 may be a lost cause anyways?

[on pause]

I first want to say a huge THANK YOU to everyone who has replied to my posts. You have given me a lot to think about, and though it was all incredibly overwhelming to take in, it is what I think I needed.

As of right now, I haven't canceled my surgery appointment, but I have a pretty good feeling I will in the coming weeks. I now have a lot of doubts about the procedures that were going to happen, and I refuse to go into surgery with any doubts. Years ago I had a discetomy with someone I thought was an excellent surgeon. I now question his abilities as I reherniated one of those discs 3 weeks later, and many of my later problems, mainly the nerve damage were made all the worse by the amount of scar tissue I had after that surgery. I now know I need to be 100% certain of what I am getting into.

I guess now my question is where do I begin?

I feel so in the dark about how to proceed with regards to finding a good doctor who will do what I need. I know many people on here have had wonderful success overseas, mainly in Germany. My father is from Austria originally, so communication with anyone in Germany would not be a problem for us. I would love to find someone here in Ontario willing to do the operation, one to make it easy with insurance, but also to recover at home vs. in a hotel room.

I will make a new thread as well, but if anyone could PM me or reply about their experiences with ADR surgery both in Ontario, Canada or overseas as well. Some things specifically I'm wondering are:
-Has anyone found a good doctor in Ontario that will do ADR on L4/L5?
-Does any doctor in Ontario do ADR on both L4/L5 AND L5/S1?
-How long does it take to get in to have surgery with Dr. Bertagnoli?
-How much does it cost?
-Does OHIP cover any of it?
-How long do you have to stay in Germany to recover?

One good thing about if it were overseas travel, my mom is a flight attendant, so the flights there and back would be cheap, and we would also receive a discount on hotels as well. So I would only need to know the actual cost of the surgery, not the travel arrangements as well.

I'm sure I will think of more questions for you all. Please bear with me and thanks again so much for all your support and concern! Without you I have have made a terrible decision!!!

Christina

PS. Mark, I will PM you with my contact info and I greatly appreciate you taking the time to help me out.

[Maria]

Hi Christina,
I think doubts are healthy and so is questioning something as big as what you're contemplating re your spine. Sorry to have created more of a stir in your head though.. hope in the long run you find the questions you're pondering more helpful and ultimately to your benefit.

I had several consults w/Dr.Bertagnoli tho via correspondence and utilized globalpatientnetwork (Mark's help) tho back in '03 and '05. I was looking at possibly 2 to 3 level ADR and I don't think prices are the same currently so I'd rather someone more recent reply to you on this.

I will say this you are fortunate with the flight attendant Mom re travel discounts/hotels and then with your Dad being able to speak the language if you're going to Germany. Sounds like wonderful advantages!

I really am sorry to create any more distress for you though hopefully whatever questions and further consults you pursue will help you with your decision. Even with 100% faith in your decision it's not going to guarantee an outcome however you'll feel better knowing you really did your research and checked things out no matter the outcome.

Re canceling your surgery~ if you're at all uncomfortable doing this just say you want to postpone it for whatever reason which is essentially cancelling it however maybe it's got a "softer" sound to it. At least that's what I did while gathering further opinions. Good luck!! Keep us posted!

[on pause]

I just want to say thanks again for pointing me in the right direction! I honestly don't know how my life may have turned out if I hadn't found this forum.

I have canceled both surgeries planned for this summer. I have an appointment with a doctor near Toronto for May 13th. I called and spoke with his secretary, and he has apparently done 2 level ADRs before, and has done over 130 ADR surgeries. I am hopeful he is up to my standards and can give me the surgery I need. It would be really convenient as he is only 20mins from my home!

I have also been given referrals to two doctors in Quebec, based on the information given to me by a member here. They are both apparently excellent doctors and have done many ADR surgeries before. Not sure yet when those appointments will be however.

I've discussed this issue in great detail with my parents, and they are willing to pay to go to Germany to see Dr. B if necessary. They would rather see me have the surgery I need with someone who has results to back it up than someone under-experienced here. At this point I will not accept anything less than a 2 level ADR. Luckily for us now, the Canadian dollar is very high and the Euro is low (comparatively speaking), so this summer would be a good time to go if that is what had to happen.

I do have a few questions though that don't pertain to now but for my future. I'm only 23 and do eventually plan to have a family. I was told a long time ago by a doctor that low back pain and and injuries made it more difficult to get pregnant later on. Is this true?
I was also wondering if having the ADR surgery (or a fusion for that matter) would create any possible pregnancy complications down the road, whether it be from scar tissue, the device itself, or if someone with terrible low back pain can handle carrying a child?

I have no intentions of doing anything soon, but I would like to know what I may face if and when I decide to start a family.

Thanks

Christina

[Maria]

Hi Christina,
I'm glad to hear you're checking into some other consultations/opinions re ADR if you're a candidate. I think for your age that's a better option to investigate. It's not to say that any spine surgery comes with guarantees re outcome however at least best to get a few more opinions and try to make the best decision possible given information you obtain.

I've seen some women that had ADR come back on this forum and others reporting uncomplicated pregnancy and delivery so I think providing the outcome of the surgery is good there shouldn't be anything to prevent pregnancy/delivey and ability to care for your baby/child (this is a big part of having kids w/bad back).

I've also seen women who have had fusions report getting pregnant and doing Ok so it's really depending on the outcome of the surgery it seems.

I'm one of those persons that didn't have kids because of my back. I injured my low back in my late 20's at work. I went thru all kinds of back pain until my early 30's until I felt I finally had to have back surgery (used to work in Neurosurgery). First discectomy had a pretty good outcome but it lead to the dominoe affect and not too long later had surgery on disc level above which failed miserably. Back then there weren't good options available here in the states re spine surgery and I hadn't really heard anything about artificial discs in Europe (the early 90's). I was counting on that 2nd surgery to work because I too wanted to have children however after the failed surgery the pain was so unmanagable and pain meds weren't really given back then that I decided to not have a family. I couldn't have taken care of anyone back then and would venture to say even now it would be difficult.

Then again there are women with really bad back issues that do have families. If one does I would advocate having a strong support system around you that can help with taking care of your baby/child when you cannot.

All that being said hopefully things will work out well for you once you decide with whom you want to have surgery/what type.

Wishing you the best with upcoming opinions.

[dshobbies]

Quite honestly, ADRs are relatively new to the world and performed mostly on post-baby women. (Men don't count in this scenerio). However, of those woman who we know about, post ADR pregnancies posed no special problems. Carrying an infant/toddler on their hips, along with the bending of picking up and putting down, not to mention floor time - also appeared to go smoothly. Even single level fusion seemed to pose no additional problems.

I would think pain would hamper everything - pregnancy, delivery and toting, not to mention the quick temper that goes along with increased pain.

I'm glad you're rethinking your surgical plan and as far as future pregnancies, should be fine, as long as your surgical outcome is positive, based on limited history available.

I do wish you every luck and I'm glad M&P are willing to pay for the best if need be.

Dale