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  #31  
Old 06-10-2004, 12:45 AM
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OTOH, MRI’s aren’t all that rare of a tool in the medical industry and provide the gold standard of image resolution. FWIW I had a MRI done on a knee because it hurt for years especially during ski season. The MRI revealed that one of the bones was misshapen. Doc said do lots of exercise, I was already skiing about 50 days per year, and I started more leg strength related exercise in addition to skiing. After about a month of heightened exercise, I haven’t had a problem since. So, why take a chance?

Best wishes Kerry!

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  #32  
Old 06-10-2004, 09:08 PM
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As a Physician with experience in spine disorders the neurologist is right.
Chiroractic manipulation in your situation is dangerous.
Have a discectomy. Fusion depends on whether there is instability.
Good luck!
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  #33  
Old 06-10-2004, 10:01 PM
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Saw the neurosurgeon today. While he didn't think my condition was as dire as the neurologist indicated, he said I need to do the surgery soon since my cord is 50% compressed and it puts me at risk for paralysis from a minor fall or accident. Since the spinal cord does not feel pain, and only my cord is compressed, not the nerve roots, this accounts for my lack of painful symptoms.
It is noticeable that while he gave me statistical information on the success rates of the operation, his statement of the danger of my condition untreated, was anecdotal. He told me of three patients with a similar condition (although unknown to them) who had minor accidents and suffered paralysis. Two recovered after the operation, the third had permanent paralysis. I think this proves that objective data on the risks is virtually unobtainable. But since I live a fairly active life, it seems that the risks are real.

I think the wise choice is to have the discectomy and fusion. This particular neurosurgeon uses allograft (bone from a donor, not the patients hip) and mechanically fastens the vertabrae together with a plate and four screws. This appeals to the mechanical side of me. I believe the result is a shorter recovery period since there is less concern about the vertabrae moving during the fusing process. The downside is that there are some risks associated with using someone else's bodily tissue.

I'll probably have it done within a few weeks. I'm on summer vacation so won't be able to use up any of my accumulated sick time. Perhaps I can get the surgeon to prescribe additional rest to complete the fusion process in October.
Again, thanks to everyone for your thoughts. Considering spinal surgery is not pleasant but I am beginning to gain a small level of comfort with the process.
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  #34  
Old 06-10-2004, 10:12 PM
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Have you looked up a Nucleoplasty doc in your area? You can find them by zipcode on the arthrocare website.
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  #35  
Old 06-10-2004, 10:55 PM
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I haven't looked them up but I did ask the surgeon about it. He thought it might be useful in relieving pain but did not think it would solve my problem. Perhaps he is just uninformed.

I noticed on the nucleoplasty website that it states that it is used to resolve nerve root irritation. There isn't any mention of use of the procedure to resolve cord compression problems.
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Last edited by kerry; 06-10-2004 at 11:04 PM.
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  #36  
Old 06-10-2004, 11:33 PM
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Kerry, I mean no disrespect here, but I think this is a wonderful opportunity for you to write down the philosopher's view of this whole process.

By all accounts, you have led an exemplary life. Your peers have recognized it. And also a very active life. You live a life that is the envy of the overwhelming majority of people who have ever lived. Thus, your analytical perspective is potentially professionally interesting.

What do you think?

Bot
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  #37  
Old 06-11-2004, 06:53 AM
MedMech
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Kerry, just ask lots of questions and take your time, I have spinal stenosis up the yin yang, and it can be managed with conservitive treatment, perhaps you should re-read cbdo's stamement he happens to be a very well known (in a good way) doctor.

And what B said.
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  #38  
Old 06-11-2004, 10:30 AM
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I re-read cbdo's post. Both the neurologist and neurosurgeon said the same thing. In most cases, surgery is not necessary and is only a last resort. They both said my case is not like that.
As I understand it, they are looking at my surgery as a preventive measure. The spinal cord is compressed so much that they think a relatively minor event could cause permanent cord damage. This is where the evidence becomes very dicey since neither of them referred to a group of patients who were found to be in my condition, refused the surgery, and then were tracked over time to see how many suffered permanent injury. The neurologist did tell me of one of his patients in my condition who continued an active life without surgery and was permanently paralyzed.

So my decision is totally unrelated to painful symptoms or statistical data and more on does it seem 'reasonable' that I am at substantially increased risk of paralysis. I guess it's similar to seeing a kinked oil supply line on an engine. The engine's running and seems to be getting enough oil, but would it be better to replace the oil line before catastrophic damage occurs. For the analogy to work the line would have to be operating in conditions where it is continually flexed at the point of the kink. Of course, I am relying on the authority of the doctors that I have a bad kink. The visual evidence of the compression on the MRI is quite striking to me but it's the only one I've ever seen.
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  #39  
Old 06-11-2004, 11:59 AM
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Kerry,
This was exactly the case for my second fusion. But I did have pain in the left arm also. my legs were getting weaker by the day, and I also stated to become incontinet.
All three of my fusions used bone from my hip. The orthopedic surgen my Nuerosurgen used the first time hacked my hip so bad I had to use a cane for a month and a half. The one he used the last two times was so good that after a day and a half I was walking without a cane.

Get this done asap, and be carefull in the mean time.

John
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  #40  
Old 06-11-2004, 07:30 PM
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Kerry, with all due respect I've been as soft as I can but your a man so I'm going to deliver it that way.

You've opened up and aired your problem with a few thousand people, of those I would bet several hundred have a very similar condition, its not rare.


Now if your willing to ask several thousand unqualified people why not ask a few extra doctors?
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  #41  
Old 06-12-2004, 12:16 AM
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I've talked to four doctors, three of whom have no financial interest in the surgery. If you add the doctor who read the MRI, it is five. All of them agreed on the wisdom of surgery because I am at an increased risk of serious impairment if the condition is left alone. The only disagreement seemed to be on the question of the need for immediate action with the differences being whether the surgery should be done within days or weeks.
The lay opinions on this board seem mixed on the issue. The medical opinions on this board advocated a conservative approach but did indicate that surgery is sometimes necessary. But nobody who had the surgery done has reported that they now think they should not have had it done (that I can recall). I have read reports on other sites of people unhappy with the results but I believe most of those people were having very serious painful symptoms prior to the surgery.
I agree that the condition is not rare and the surgery is quite common. From what I can gather from the literature, and from the doctors, my condition is not as common because I have no painful symptoms. Most of the literature refers to patients having serious problems with pain. I don't have that. But at the same time, I don't have any detected neurological deficits at the moment. I could wait until I begin to get deficits, but that the fact that a rear end collision or fall off the couch could result in irreversible paralysis according to the doctors, seems to turn things on their head with surgery becoming the conservative approach.

So, I guess the final reason why I am gaining a measure of confidence in the diagnosis and recommendation of surgery, is that no one who has looked at my MRI films has said my problem is not serious.

By the way, I don't think I'd call all the people on this board unqualified. I was looking for a different kind of qualification, the qualification that comes from being on the receiving end of the experience. Doctors come at the issue from a specific sociological perspective. They have a culture that influences their opinions in certain directions. I was looking for opinions that were not necessarily influenced by that culture. I was not disappointed. Many people came thru, including doctors.
There's a lot of intelligent discussion and debate that takes place on this board. The application of all our minds to mechanical troubleshooting is usually very successful. The application of that same group mind to other kinds of decisions that most of us face from time to time can be quite helpful. MedMech, you're a good example.

I'll consider writing about the experience but I suspect it's too boring a topic.
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Last edited by kerry; 06-12-2004 at 12:27 AM.
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  #42  
Old 06-12-2004, 08:47 AM
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Kerry, you're exactly where we occasionally wind up--in territory where the most useful science hasn't been done, and we can only infer from what we do know. I hate when that happens! As you've found, the risks of surgery are pretty well quantified, but the risk of "conservative" management in a case like yours is conjectural.

When you're at that level, the best bet I've ever found is to get several opinions from the most impeccable sources you can find, and you've pretty well done that. Best of luck, however it goes--

Craig
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  #43  
Old 06-14-2004, 12:27 PM
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I'm in Exactly the Same Situation

...as you are, Kerry. I have a pretty long story, so here goes:

1979: At age 14, fractured C4-C5 in diving accident (dumb kid, shallow end of pool, etc.) Paralyzed from the neck down for 2 months, hospitalized for 3; I was the fastest recovering quadraplegic to date at that hopsital, and didn't have to wear a halo brace at all. Made gradual recovery over course of a year or so. Now walk with a brace on my right foot, right side more affected than left, maybe 70% total recovery.

1980: Bone fusion of C3-C4 due to instability. Used donor bone for graft, wore a soft collar for can't remember how long, and had absolutely no problems whatsover afterwards--no pain, no real limit in range of motion (side to side or flexion/extension).

2002-03: Started having pain in left shoulder and neck, pins and needles, etc. Had MRI done in Oct. 2003 and it was a mess, with herniated discs at C4 and C5 and C6/C7 and major stenosis at a couple levels. Since this was my first MRI ever, I had no baseline for comparison, unfortunately. My PCP was clueless and referred me to a neurologist. I let it slide, since I had other health stuff (gallbladder) going on.

My mom is a radiology nurse and had some of the docs look at the films in early December. They freaked out and told me I'd best get to a neurosurgeon ASAP. Did so in February (two months later is ASAP for seeing a surgeon you know), and he recommended surgery. We scheduled it for a couple months out (he had hurt his arm skiing and was booked up til then). They sent me on my way with a soft collar (how comforting).

Got a second opinion a month later from a Phys Med and Rehab doc who knew my physical condition the best of all the docs who had seen the films. He saved reviewing the MRI films for the last part of the appt, wanting instead to focus on me, the patient. He tested my muscle strength, watched me walk, and talked to me about what I was experiencing. Then he looked at the films, and after much study concluded "There's nothing here that would make me want to operate." But then why would he want to--he's not a surgeon, right? It's like somebody else said, everything looks like a nail to the guy with the hammer.

So I'm in a bit of a quandry, too. I'm not in pain now, and not experiencing any weakness that I can detect, no incontinence, but I do know that something is going on with my neck. I used to be able to "crack" it if it went out and now I can't do that, but it also doesn't feel like I need to.

My concern is that the surgeon felt that the reason I was having the new trouble was due to the old fusion. The two fused vertabrae were acting like a big lever squeezing the discs below as my neck flexed and extended. It seemed like fusing at C5/C6 would just cause a cascade effect further down, and I'd be in the same spot I'm in now a few years later.

After I saw the PMR doc, I cancelled the surgery and am still wonderig if I did the right thing. There's no real way to know, and I am still keeping my options open. There is a doc in Pittsburgh (Hae Dong Jho) who claims to be able to do discectomies without needing to fuse. He's worked on a lot of the pro wrestlers. Anybody know anything about him?

I am still in limbo to a degree, and every time I feel a twinge in my neck or my arms fall asleep at night, I wonder if I did the right thing. But at least I did take back the power of making my own decisions rather than having them made for me. That will little solace, though, if something serious happens because I didn't act. But if I had done the surgery and something went wrong then, I guess I'd still be wondering if I made the right move.

Hang in there, Kerry. It's not easy, but hopefully knowing there are others out here going through the same thing will be of some comfort.

Kirk
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  #44  
Old 06-14-2004, 12:50 PM
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Kirk:
It does sound like we are in precisely the same quandry. I decided to get the surgery and called last week to schedule it. The scheduler was out of the office so I'm waiting for a return call today.
It is a dreadfully difficult decision to make. I think my neurologist was so insistent that I see a neurosurgeon immediately because he had a patient in my condition who fell and became a quad. I think this would have a big effect on future recommendations by the neurologist, but it is not a definitive scientific reason. The neurosurgeon says that I need surgery very soon, but again, he is a carpenter. An old friend who is a neorologist concurs that the surgery is the only solution, but he does not seem to think that the risks in the meantime are as significant, but he has not seen the MRI.
I did look at the MRI of a quad on the net over the weekend, and the degree to which the cord was being compressed was not a lot different than my own MRI.
My father had the operation when he was about 57 and he's eighty now. He was very happy with the results. His only symptoms were areas of numbness. His cause was not a herniated disc but a bone spur.

Almost all the information I have found on the net, analyzes the problem from the point of view of pain. For patients without pain, and few symptoms, like us, there doesn't seem to be a lot of advice available.
I think it's a no-brainer for neurologists and neurosurgeons because surgery is an everyday event for them. I believe they would do the surgery if they were in our shoes. It's been extremely rare for me so I am looking for more data and information than they are.

Even though I have made the decision for surgery, I am still reading a lot and thinking the issue thru.

By the way, there does seem to be widespread agreement that fusions do put additional stress on nearby discs. There are clinical trials going on right now for artificial discs. I did read one article about a patient with a single level fusion which caused an herniation at the disc above. They removed the fusion and installed two artificial discs. Patient was doing well when the article was written.

How does the fact that you were once paralyzed play into your decisionmaking process?

Given the difficulty we are having in making decisions, I think spinal neurosurgeons would be out of business were it not for pain, just like religions would be out of business were it not for death.

Kerry
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Last edited by kerry; 06-14-2004 at 02:12 PM.
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  #45  
Old 06-14-2004, 02:11 PM
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I agree with you, Kerry. If I were in pain this would be a far easier decision to make. My doc is also recommending it as a preventive measure, because I do walk with a limp and tend to fall. I did so back on New Year's Eve day (no, I had not been drinking) and did get a bit of a jolt. I've been super careful since then, but still have had the occasional fall. Does the fact that nothing happened mean anything? Maybe I just didn't fall the right/wrong way. And I overdid house work this weekend, and my neck is hurting today. Just sore muscles or did I make the disc worse? Who knows?

Having been paralyzed once is a huge factor driving my thinking, but it cuts both ways. The first thing I did back in 1980 after waking up from my first fusion was scream, "I can't move!" because I was still groggy from the anesthetic. The neurosurgeon had to come and tell me to wiggle my toes and when I found I could and he told me I was OK, I passed back out again. So I don't want to go under the knife and have something happen that messes with my cord, but then who is to say I could have the fusion and fall and become a quad again anyway? Nobody can guarantee that having the fusion will insure that still won't happen, so where does that leave me?

Being paralyzed simply cannot be described, my friends. Not being able to scratch an itchy nose, feed yourself, go to the bathroom yourself, brush your teeth, the list goes on and on. It's like being an infant. You are totally dependent on someone else to do absolutely everything for you. Until it happens, there is just no way to imagine it.

Fear is a tremendous driver in surgeries such as these, so I'm trying to see past the emotion, not react to it, and be measured in my approach to making this decision. It is not easy, but knowing that once it's done it can't be UNdone is making me be as thoughtful and methodical as possible. And it's still not easy. I wonder if the fact that the neurosurgeon didn't call me back to dissuade me from cancelling the surgery means anythinng. Only if and when I decide to have it done and it goes flawlessly will there be an end to this uncertainty. Quite a conundrum.

Kirk

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