Yet Another Immigrant

[ImpOssibleOne]

Hi, I introduced myself very briefly on someone else’s thread so I thought I do it properly .

I’m Adrienne, a refugee from The Other Site. I live in California with my husband and two sons, aged 18 & 20.

Had mild back pain and mild toe numbness while exercising for many years but never really paid attention because it would stop the minute I stopped moving. Two years ago the leg numbness (both legs) and back pain increased to the point I hauled myself into the doctor. My husband is an MD, so I had every test imaginable, MRI’s from stem to stern , CT scans. Then they tested for neuro diseases to circulatory diseases, viruses, etc. All negative.

So it was back to the back. Had a discography which showed a large tear at L5/S1. Everyone agrees that it accounts for the back pain but the leg numbness is another matter. Maybe, maybe not? (I should also add that I have an extra vertebrae below that disc which doesn’t move and that is likely why the disc blew. There is also a pars defect at that level, no slippage and mild facet arthritis. )

Two years later: I’ve been to four surgeons and have four opinions.

Surgeon #1 “Your scans look great. Hang out for another year and see if anything definitive emerges.”

Surgeon #2 Either fusion or ADR but I’d suggest ADR because the recovery time is quicker.

Surgeon #3 You look awfully mobile to me but if you insist on having surgery, have a fusion because you have facet arthritis. You actually don’t meet the inclusion criteria for ADR.


Surgeon #4 I’d recommend a fusion. The ADR is still new and we don’t have long-term outcomes. At L5/S1 you shouldn’t notice any lack of flexibility. Your other discs are healthy and should hold up for a long time. If they do go, the surgical technology will be much better by then.

So I’m deciding between
Hanging out, maybe trying a chiropractor.
Fusion
ADR

I’m currently leaning towards the fusion. But ask me again tomorrow.

[dshobbies]

Hi One and welcome,

So you're on the fence. There's a lot to be said for all your arguments except seeing a chiro. Maybe physical therapy is a better choice. I had a recent conversation with Mark about his cervical issues. He has chosen to postpone his 4 level surgery.

I pointed out that a comment I made with just about all my surgeries is that I wished I had done it 5 years earlier, basically suffering needlessly during that time. I also pointed out that as we age, it takes longer to heal, so the sooner the better.

He sited functionality. He's functioning fine and with an unknown outcome, why chance it.

Back surgery is huge, altering your spine forever. You can't go back and undo it. You choose your doctor carefully, decide on which surgery is best for you, then hope for the best. Putting it off when you're still able to live your life fairly normal makes sense.

So, if you're still functional and, with the help of meds if necessary,n living your life normally, you've probably got time. Post your concerns, read everything you can and if possible, find a doctor who's considered a 'heavy hitter', one who has a lot of experience in ADRs. If he says you're not a candidate for an ADR, then you're surgical decision is easy, minimizing your decision to timing.

I know I didn't clarify anything for you but I think you do have a little time to decide and do more research. by the way, have your tried Neurontin/Lyrica for your nerve pain?

Good luck, Dale

[Jim M2]

Hi ImpOssibleOne,

Nice to see you here. I guess the other forums are having their annual inquisitions.

Here would be my priorities, just my opinion.

1. Hang out - Good pain management, therapy, NO CHIROs, hang on and let nature take its course
2. Fusion

Of course I'm not feeling your pain, otherwise I might say

1. Fusion
2. Hang out - Good pain management, therapy, NO CHIROs, hang on and let nature take its course

Here's hoping the best for you.

[trkdoc714]

Hi Adrienne,

It's great to see so many have come over from the dark side.

From my and my wife's experience, I'd almost recommend a witch doctor dance around you with a dead chicken than send you to a chiropractor. According to several of our orthos, our conditions were worsened by the visits to the chiropractor(s).

My experience caused more pain and ultimately led to damaging the disc further as evidenced by both Xrays and MRI before and after treatment.

My wife's cervical rupture was worsened immediately after one treatment.

There has been a study done at the University of Illinois showing evidence of damage to adjacent discs when nothing is done to correct a degenerated disc.

Good luck,

Bob

[Maria]

Adrienne,
I have had two discectomies to date and spent longer on the fence than anyone here I think with regard to progressing on to a 3rd surgery which could have been 3 level global fusion as recommended back in 1998-2001 or 2 level ADR during trials in 2003 or ADR at L4 and Fusion at L5S1 back in 2006.

I have not been working since 2000 and have found fair relief with pain meds and ESIs as long as I don't sit for long at all. It's a limited life but not one of terrible pain as I was dealing with for a very long time.

When the flare ups and the uncontrolled pain hits I tend to want to have surgery done because I think it could help. I also know that my spine is becoming worsened with time as I wait, at least as far as in progressive osteoporosis which could limit surgery at all for me in the future.

This could be good, it could be bad. Who knows. Luck of draw I guess as far as my own body/results.

I am not one who has had any spine surgery recently (last one in '92) so I know great strides have been made and there are surgeons and there are masters~ and of course there are fortunate patients whose bodies respond very well to the best surgical technique/mastery.

Should you enter into any surgical endeavor, pick a master and I hope that surgical skill/technique and all else utilized will match with your bodily ability to respond as desired to alleviate pain.

Glad you are here~ I understand the *waffling*

[Justin]

Adrienne,

Great to see you here! Personally, I would pursue the fusion/adr route and avoid the chiro route, especially HVLA. You have tears in your discs, and all the chiro in the world isn't going to help (sorry to be so blunt). I was in a similar situation before my ADR: I was doing PT like a mad man, and a surgeon told me all the PT in the world wasn't going to help in my situation. It's really hard to move to the "surgical intervention" stage.

Good luck and let us help you in your decision(s)...

[Maria]

Adrienne,
I meant to say in my reply above that I never felt comfortable with the idea of seeing a chiropractor yet I worked with Osteopathic doctors for years and I allowed several I thought to be exceptional do low velocity manipulations and myofascial release (cranial sacral) on me to alleviate some pain.

While I still have the same problems more or less at same levels only 2 surgeries under my belt now (discectomies) the last time I went to an osteopathic doctor and was manipulated I noticed that it bothered my back more than it helped. So that was that.. didn't want to risk aggravating the levels anymore than they already were.

Some people swear by chiropractic treatment and I've always thought if the disc bulges were large or there was much internal disc disruption that this type of treatment could be too aggressive. I suppose it would depend on what the chiro was doing or how he or she was doing it but I've always steered clear of this as option for treatment.

[Justin]

Maria,

I agree. I have no problem with seeing an Osteopathic physician that specializes in Osteopathic Manipulative Medicine (OMM). They have many techniques they can use where a high-velocity motion would be contraindicated.

I've actually been treated by a physician that specializes in OMM, and it has helped incredibly. They are worth their weight in gold!

I apologize, I wasn't trying to be so "black and white" in my previous response. I've just heard some horror stories about chiros and HVLA (vertebral artery laceration, etc.).

Originally Posted by Maria

Adrienne,
I meant to say in my reply above that I never felt comfortable with the idea of seeing a chiropractor yet I worked with Osteopathic doctors for years and I allowed several I thought to be exceptional do low velocity manipulations and myofascial release (cranial sacral) on me to alleviate some pain.

While I still have the same problems more or less at same levels only 2 surgeries under my belt now (discectomies) the last time I went to an osteopathic doctor and was manipulated I noticed that it bothered my back more than it helped. So that was that.. didn't want to risk aggravating the levels anymore than they already were.

Some people swear by chiropractic treatment and I've always thought if the disc bulges were large or there was much internal disc disruption that this type of treatment could be too aggressive. I suppose it would depend on what the chiro was doing or how he or she was doing it but I've always steered clear of this as option for treatment.

[Kathy]

My family dr. is a DO and he did the adjustments on me early on. I did it for a couple of months, before I said enough and quit. It hurt me more than helped. I would hurt for days after each adjustment. As to why I did it so long, early on in this, I was the kind of person who believed a dr knew everything and did everything they said; regardless of how it made me feel.

I also had a chiropractor that did adjustments on me a couple of months after that. As to why I did it again, once again, I was to compliant to tell the dr that I didn't want to do adjustments. Once again, no relief.

Then, last year from March to June, I did chiropractic 3 times a week. I did it this time, because it was someone I knew and trusted. It would help with my neck; but never my lower back. I finally quit doing it.

Then, when I saw Dr Zigler, he told me the same thing that Justin said. That my disc was torn so badly, that nothing was going to 'fix' it, heal it or make it better without surgery. He also told me, that unlike I had been told prior, it would NEVER heal on it's own. I could either have surgery or live with it; but it won't get better. He didn't suggest living with it either.

I do believe that chiropractors can be a great tool. And that is saying something from someone who said they were 'quacks' a couple of years ago. I have read books about their type of 'medicine', so to speak, and really believe that it can help people.

My sister and her four children all see a chiropractor. My niece is 7 and completely disabled; she does not walk, crawl, talk, and just learned to sit up on her own. She has had medical problems since birth, seizures, heart murmur, severe GERD- that required surgery, feeding issues that required her to have a feeding tube for 5 years, and more. Because of all of her medical problems, the medication she had to be on for them and that she is not mobile, she suffered horrible constipation. The adjustments she receives have made her have regular bowels and not cry as much (she used to cry for 20 hours a day and night, now she only cries if she needs something). It has helped her a considerable amount. My sister had back pain from having to lift my niece, who is 35 pounds of dead weight; and from lifting her other 2 young children, 5 and 2 years. She also suffered migranes frequently. She now goes and no longer has the back pain and the migranes are less frequent. She will go when she has a migrane and get adjusted and it will either take it away or make it less severe. It has been real amazing for them. I would never have went to the last chiropractor, had my sister not so highly referred him. She like myself, had believed they were quacks out to make tons of money until she was referred to him by a good friend.

Ok, so there's my life story and my sister's... told you guys I was long winded.

[ans]

My best in this hard decision. I find the facet question very vexing e.g. that some who have "moderate" damage on their MRIs do well whereby others' facets are hurt by ADR (it seems to me). My best ~ Allan

[ImpOssibleOne]

Thanks, everyone, for your replies. I agree, if the disc is shot no amount of manipulation is going to mend it. So, the chiropractor is out...and so is hanging out for a another year.

If it was my neck, I'd definitely shell out for the ADR as there seems to be a clear benefit. But with the lumber, there is an argument for both surgeries so while a fusion might take a little longer to heal, I can always count my money while I mend.

Also, if I have the fusion, I can go to the hospital where my husband is on staff. The surgery is the surgery but the post op care will be great because people will be snooping around all the time.
The ADR would be at another hospital but I like the surgeon better (although I realize social skills have nothing to do with surgical ability.) I'm sure the aftercare would be fine there too.

Heads or tails?

[Maria]

edited..


.

[dshobbies]

Your decision on which surgery is best for you should not be based on anything but which surgery is best for you and the quality and experience of the doctor performing the surgery. Often the cost is also a huge factor.

I based my decision on my own personal fears instead of looking ahead to the rest of my life. Wrong!

While your comfort level should not be dismissed as frivolous, you have to live with your decision for the rest of your life. These two surgeries are not created equal and fusion is permanant, ADR is difficult to revise.

I don't want to lecture but this decision is more important than the flip of a coin. The benefit or regret are yours to keep for the rest of your life.

Please educate yourself on what to expect from both surgeries before making a final decision. I wish you the best, Dale

[ImpOssibleOne]

I based my decision on my own personal fears instead of looking ahead to the rest of my life. Wrong!

What do you mean?? What happened?


I don't want to lecture but this decision is more important than the flip of a coin.
Oh, I know. I have educated myself and have consulted 4 top notch surgeons. My trouble is that all the information and consultations have contradictory implication. Therefore making a decision based on fact is next to impossible.

[dshobbies]

One,

First me, then you. Even though the American doctor I chose for my surgery was not all that experienced in multi-level ADRs, I so feared going to Germany and the dreaded discogram, that I wouldn't listen to all the advice I received and decided my comfort level was the most important factor. The experience of my surgeon didn't matter. I didn't want to leave this country, period! I had already had a discogram and didn't think I needed another, especially unsedated. Thus my fears made this decision. Ultimately my insurance company made my decision and I went off to Germany, my fears unfounded. My only regret is that I was in so much pain post-op, I was unable to enjoy the sites.

Now you - a decision based on fact is possible. Fact, ADR is motion preserving. ADR complicates previous facet damage. Fact, fusion limits movement but may be you only choice given certain circumstances. Fusing two discs places stress on adjacent segments, possibly leading to further deterioration and is actually contra-indicated for most multi-levels, especially 3 or more.

Next, what are your expectations? Can they be achieved with ADR? Can they be achieved with fusion.

Of the doctors with whom you've consulted, do they all perform ADR? If they don't or aren't very experienced, they're not likely to recommend it. My very respected, highly qualified neuro surgeon never even told me about it. He certainly wouldn't recommend it. If the hospital in which they have privledges frowns upon ADRs, they're not likely to recommend it. What are the reasons your doctors are/not recommending ADR/fusion? If a doctor is well versed in the various remedies available to you, they will be able to give you very specific reasons for recommending as they do. Then, if you decide on ADR, which disc is best for you.

You need to become more informed so you can make the best decision for you and your circumstances. Ask a lot of questions. Now might be a good time to contact Mark.

You will very naturally have doubts regardless of your decision. Making it based on confusion is, in my opinion, not the best way to go.

Dale

[ImpOssibleOne]

Thanks for your thoughtful reply.
I tend be brief on the boards and that may come across as flip but I’ve done my homework, gleaning information from many sources. I’ve thought about all the considerations you’ve mentioned above. Over and over. My problem isn’t lack of deliberation, my problem is that the sources all conflict each other. For instance:

Surgeon #1, who saw only my records and films, said don’t do anything because your spine looks fine.

Surgeon #2 the first time I saw her, recommended a fusion. The next time, six months later, recommended ADR. This was based on the same studies and symptoms.

Surgeon #3 Said I wasn’t even a contender for ADR because I had facet hypertrophy He said fusion.
Went back to surgeon #2 who said that the hypertrophy was nothing, that she’s done it successfully on people whose facet joints are far worse. But she added that a fusion would also be a reasonable decision.

Surgeon #4, who is known to be anti-ADR and will cite a long list of reasons for being so, of course recommended fusion. His reasoning wasn’t unfounded. He cited the ADR as being relatively new, that there were no clear studies over a long period of time. He said that since it’s only one level, L5/S1, the lack of flexibility shouldn’t be much of an issue. He said, since I was relatively young, the ADR would be a big risk over the long haul and that if I did need a revision, the surgery is risky.
However, Surgeon #2 said that revision surgery isn’t a big deal at L5/S1 because the vein (I’m blocking on the name), has already split at that level.

The contradictions go on and on….

Three of these surgeons are the heads of their departments at top universities. The fourth is a Kaiser doc, who probably had the least agenda of any of them. I doubt a fifth surgical opinion would do me any good, there’s a point at which you just have to jump in a DO IT.

So, who, exactly, is Mark and what, exactly, does he do?? I’m new here.

Thanks again, I really appreciated your intelligent response.

[Terry Allen Blackburn]

Mark acts like a guide. This is a tough decision to make as, it would cost you money to go this route. If you feel comfortable and confident that you can handle your own affairs, then a broker may not be the best course of action. If you want someone to schedule everything for you and guide you through the process, with some hand holding, then a consultant is the way to go.

I did my own research, got many opinions and recommendations, tried many alternatives, and, at the end of the day, I was still faced with the clear knowledge that surgery was the only option left for me. I made my own arrangements and, have been comfortable with the decisions I made, where I went and, am satisfied with the outcome.

When the pain becomes suffering, a decision needs to be made as your quality of life is interfered with. This is the point that I had gotten to as, I knew I had lived a good life and so, I prayed to die. I walked with a cane for almost a year and was hunched over like a little old man. I was absolutely miserable. There is an old expression that I use to help me get out of being immobilized.

F.*ck
E.verything
A.nd
R.un

OR

F.ace
E.verything
A.nd
R.ecover

It's still a tough place to be in. There will be support here for you no matter what choices you make.

From A Fellow Spiney,

Terry Newton

[SandyW]

Hello Adrienne

Not trying to sound pushy, but you can use Mark for help in getting another consultation with the German doctors who probably have the most experience.

If you look at his website, I believe the cost of sending your records is $250. You don't have to use him for anything else. Mark can't answer you from this site I assume, it would be a conflict, but you can email him from Global Patient Network, Inc.

You don't give the name of the doctors and I don't remember where you're from, so not sure you are getting opinions from surgeons who have done a lot of ADR's??

Don't mean to offend, best wishes, Sandy

[dshobbies]

I know I can sound preachy and I'm glad you have done your homework. I suggested Mark because he can put your records on his website, including your films and consult via the internet with all the top doctors, as per your instructions. His fees are quite reasonable but just because I found him valuable doesn't mean you will.

You're on the fence about which surgical direction to take and he can help. He can do as much or as little as you desire. He's not pushy but it's beginning to sound like I am so I'll back off.

It's your back and your decision.

Good luck, Dale

[Maria]

I guess what he does is somewhere on here tho check out GPN Artificial Disc Replacement ADR

this is Marks website as well and has good information on it.

Terry ~ you gave a good laugh with the first FEAR. I'm more like FEADN (do nothing)!!!!

[Gil Denis]

Hi All
I am using Mark he has been wonderful, Set up a profile with all my information, answers emails, and calls with questions.
He knows all the technical terms and how to put in my dumb ass understanding.
I need some kind of intervention with my spine,did not know were to go,who to see or trust.
The first Doctor I saw looked at my MRI " oh you need a fusion"
no other test, pain meds,etc.
Then he was telling me how he could not afford to build a new house
Talk is cheap
Take care
Gil

[ImpOssibleOne]

Thank you, all, for your responses and don’t give a second thought to being pushy. Pull up a pulpit and preach away! I’m here to gather perspective and any and all are appreciated. Don’t worry, either, about exerting any undue influence. I don’t even take the Dr.’s advice at face value.

All this time I’ve been thinking that’s it’s too bad there aren’t professional logicians for hire, people to help you get the needed tests, sort the info, etc. I wish I would have known about Mark two years ago!!! But I think I’ve managed to garner a range of opinions from well-respected M.D’s in the SF Bay Area ..and beyond: Dr. Yue from Yale, Dr. Serena Hu from UCSF, Dr. Gorek from Kaiser N.Cal spine center, and Dr Caragee, head of orthopedic surgery at Stanford. Would that they had come to a consensus, however.

All I really know that I need to unload that disc, the sooner the better. Face Everything And Recover, how right you are, Terry.
I can’t imagine how hard it must be for, say, a cancer patient to make a decision between types therapies. In the grand scheme of medicine, this decision isn’t so major. I’ll live, no matter what.

Had to laugh, Maria, with your Face Everything And Do Nothing. A waffler after my own heart.

Thanks again; can’t tell you how much I appreciate your answers and opinions.
Adrienne