Eric's Pre-Operation JournalI have been living with pain and occasional numbness in my neck and right arm and hand (especially the middle three fingers) for several years. I cannot recall when the pain first started, but I have had several accidents/incidents in the last 10 years that could have caused, or worsened, the condition. Until about two years ago, I lived a pretty active life doing things like martial arts, cliff diving, swing dancing, and sports like basketball and football. I am also a computer programmer by day, and not so occasionally, by night.
Throughout the years, I have treated the pain through a combination of acupressure, acupuncture, massage, cupping, stretching, and chiropractic care, but since it rarely flares up to a level that prevents me from working, I have not pursued it beyond that. As I mentioned, I am a computer programmer with very long hours and poor posture and I have always assumed that this type of pain just kind've went with the territory. I have also gone through multiple periods in which I was not insured and simply could not afford medical attention.
A few weeks ago I had another flare up (these things happen maybe once a year for the past 3 years) and could not move my neck due to excruciating pain. I had an MRI performed and the doctor (an orthopedic surgeon in Singapore where I live) discovered that I had a herniated (or slipped) disk between the C5 and C6 vertebrae.
The MRI read like this...
"The following sequences were performed: Sagital FSE T1/FRFSE T2/GRE T2 and Axial FRFSE T2/GRE T2.There is a severe disc bulge at the level of C5/6 causing diffuse narrowing of the spinal cord and compression of the cervical cord. There is also associated narrowing of the neural foramina.Neural foramina narrowing is also seen at levels C4/5, C5/6 and C6/7.
There is normal alignment of the cervical spine. The craniocervical junction is normal in appearance. The signal from the marrow, cortical outline, and end plates of the vertebral bodies is normal. There is high signal in the cervical cord at level C5/6
There is severe cervical spondylosis [degeneration of the spinal cord due to wear and tear] with a large disc bulge at the level of C5/6, causing compression of the cervical cord resulting in cord edema. Multiple levels of neural foramina stenosis is also present."
In other words, the herniation seems to be quite bad. One view within the slides provided by the MRI clearly shows the herniation compressing the spinal cord by about 70-80%. The doctor who reviewed the MRI with me also mentioned that the injury is many years old because he can see bone growing around the bulge.
A second doctor (a neurosurgeon at Cleveland Clinic where my sister-in-law works) who I consulted for a second opinion noted that he believed there was also damage to the spinal cord apparent in the MRI results. This was evident in the "whitening" of the cord around the affected area.
These opinions were confirmed by 3 other surgeons (2 ortho and 1 neuro) who I spoke to during the next three weeks after the first diagnosis and again, by several people I met on the web (search for slipped disk on google.com) who had been through similar problems.
All the doctors recommend surgery without delay and warned that given the state of my spinal cord, a simple accident could easily paralyze me.
I now know, having read through literature online (spineonline.com, spineuniverse.com, spinesolver.com and neurosurgery.org) and discussing my condition with lots of specialists, that the surgery they are talking about doing is called an Anterior Cervical Diskectomy & Fusion (ACDF). It was described to me, without the jargon, as an operation in which the surgeon extracts the herniated disk, saws off some of the vertebrae around where the disk used to be, and then fuses the two vertebrae together using bone (iliac crest bone) from my hip (or a cadaver) and potentially a titanium plate to secure it all down. They will go in through my throat to perform this using a small incision along an existing wrinkle.
They also explained that there is a great deal of risk involved in the procedure including death, paralysis, infection, damage to vocal chords, blood clots in legs and lungs, and a host of other really nasty things. Apparently, there is a 1% chance of death or paralysis and a 5% chance for lesser complications such as permanent vocal chord damage or post-oprerative infection. None of the doctors I interviewed had ever had any serious complications.
These would be good odds if the stakes were not so high.
Of course, they also say that there is a great deal of risk involved in NOT doing the procedure as well. For example, they believe that were I to suffer a whiplash, I could become paralyzed below the neck. Even the non-traditional doctors I spoke to agreed that in my case, it appeared that the risk of not doing the surgery, especially given my lifestyle, was higher than that of doing the operation.
That said, even without mentioning the risk of major catastrophe, the disc had already started causing nerve damage in my spinal cord. They detected this through several means. For one, the MRI results detected spondylosis that was explained to me as wear and tear damage to the spinal cord. I think of it like how climbing rope frays over time because it is constantly stretched tight against rocks. Over time, the rope just frays with the constant wear and tear. The same is true of the spinal cord. Anyway, I have the worst kind called Myloperty.
Several doctors also performed a set of reflex tests where they banged on my joints with the little rubber hammer. I guess you have to be there, but the reflexes seemed to respond in a highly exaggerated way. A little tap on the knee caused my leg to kick out wildly. I think it was described as "spasmatic". Interestingly, the same was true for all my limbs, not just my right arm (thus, although I did not yet have pain symptoms in the other limbs, it was on the way).
Apparently, the doctors said that this was due to "high tone" and was a clear symptom of cord compression and degeneration. I think it seems to be something like all nerves and muscles are constantly tight (stretched).
In other words, even if I were lucky enough to avoid a whiplash-type accident, sooner or later, the constant wear and tear on the spinal cord would be great enough that I would eventually lose control of my limbs. While my strength seemed quite good, one doctor, who had me walk across the room and perform coordination tasks noted that I had definitely lost some dexterity in the right hand. So the degeneration was already apparent and would only get worse.
By the way, the doctors also said that the degeneration would probably not be gradual. Instead, it would decrease in steps and unpredictably. Thus, my next step downwards could mean significant loss of fine dexterity in my hand as well as perceptible loss of strength. And of course, no one could predict when that might happen. It could be one day, one month, or one year.
So at this point I had to make a lot of really tough choices and pretty much decided to spend the next month investigating my options.
While health must come first at times like this, it is important to note that I am a founder of a small company that can survive having me out for awhile, but not too long.
To confound things even further, my wife is in her first trimester and so the timing of my operation needs to fit well with what she needs from me in terms of ongoing support.
In general, I had many, many questions about what the operation meant, what were the real risks, what post-operation life would be like, and whether there was absolutely any other way to handle this with an equal or better chance at long-term success and life happiness.
I came up with the following list of questions and received the answers below:
Q: I live in Singapore. Is it worth it to fly to the United States to have this operation done? How do physicians compare around the world. If I do it in Singapore, it costs about US$4,000.00. In the US, I understand that it will be about US$35,000- US$80,000 as I am not insured. Is it worth it? The cost differential is almost whole year's paycheck. That said, life is life.
A: Having done significant research in this matter, I determined that the quality of care in Singapore was close enough to that of the US that it did not make sense to fly to the US to perform the operation.
Its kinda like this...while the best doctors in Singapore may not be as good as the best doctors in the U.S. (because of the number of operations performed), they are certainly better than the vast majority of doctors in the U.S (a pool from which I would most certainly have been choosing from anyway if I were to have surgery in the U.S.)
So it is not just that I don't have enough money.
Second, the technology and qualifications in Singapore seem to be top rate worldwide. Singapore is a very cutting edge place actually.
On the downside, the doctors here have much less experience on average. Most surgeons do about 20-30 of these type of surgeries per year as opposed to US surgeons who can do 20 a month. Of course to be fair, all the surgeons I spoke to said that this type of surgery is considered one of the easier ones for them to do (2 hour cut and dry so to speak). Thus, while the doctors may not have had lots of experience with my type of surgery, they were in general, pretty capable in more difficult ones and did do, on average, the same number of spinal surgeries as their peers in the US.
Also, from a life-logistics perspective it would be pretty disruptive to travel back and forth and require care while in the US.
Q: How do I compare surgeons? What measures can I use to evaluate the skill, experience, and thoroughness of a surgeon? How do I choose between a neurosurgeon and an orthopedic surgeon...what are the strengths and weaknesses of either?
A: As far as I could tell, the number of surgeries performed and the success rate seemed to be the most common predictors suggested to me. However, in the end, all the doctors had about the same number of surgeries and years of practice (I am really only choosing from the top 5 list in Singapore as it is, so this makes sense in my case). So actually, I did not get all that much info and I was not keen to go looking through hospital records or anything trying to get statistics for each doctor.
Instead, I found that relying on the fuzzy impression that "other" doctors had about the potential surgeons was more useful. Asking doctors to talk about what they thought of each other was useful. And asking totally third party peers was useful as well. Also, I just tried to use my "intuition" when interviewing them, just like Iwould if I were interviewing a new potential employee.
On the issue of ortho versus neuro, the general sentiment seems that it really does not mater. I should be looking for a "spine surgeon" and they come in both flavours. Spine surgeons do spine surgery. Whether they had formal training in neuro or ortho does not really matter once they choose spine surgery as their specialty.
Some doctors have mentioned that you can have two doctors in the operation at once, but I think they seem to feel that it is overkill.
Q: Is there any other way to treat this condition? How much benefit would traction or physical therapy be given my extreme case? What is minimally invasive spine surgery? I read about it online, but I really can't figure out what it is and whether or not this is what my doctor is recommending.
A: I think I have pretty much addressed this above. In my case, it appears that surgery is really the only option. In terms of minimally invasive spine surgery, my condition is too extreme to use this method.
Q: As one might imagine, as the founder of a small company, my life has been very stressful for some time. I would say that my health has deteriorated in the last two years significantly as I have poured myself into my work. I seem to be the target of every flu virus that comes around the office, I have had hives and boils which have been treated semi-successfully with anti-hystemines and anti-biotics respectively, but which are a continuing problem, and I have gained 15 pounds over 3 years. With that said, is it safe for me to submit myself to surgery? Will my body be able to cope? Will I get some sort've spinal infection that could kill or paralyze me? Other than eating better, taking a month off to relax and get rest, drinking lots of water, and taking vitamins, is there any other way I can prepare? Is there some other supplements I should be taking against infection? Should I be taking any blood tests to look for things that could be a problem during surgery? What about exercises. Is there some special sort've exercise or stretch that I should be doing in order to strengthen certain crucial muscles or something?
A: On this point I got wildly different responses from doctors in the US versus doctors in Singapore. The doctors in the US were far more concerned about pre-operation preparation. The doctors in Singapore said basically that it really did not matter what I did before the surgery (so long as I did not have diabetes or a heart condition)but that I should give myself more recovery time. The doctors in the US, while agreeing with the recovery time, believed that pre-surgery preparation would be very important.
I got several recommendations including 1) take normal vitamins, 2) get good rest, 3) take Neurobion for nerves, 4) detoxify the body with the right diet, and 5) take 30-50MG of Manganese daily for cartilage. As I said, the Singaporean doctors scoffed at this, but I will be doing it anyway.
As for exercises, nobody had any suggestions. My intention is to lightly work out for the month before the operation just to get my cardiovascular in better shape. Whether it will help or not, at least it will make me mentally more confident.
I also did a regimen of blood tests to check for things like Diabetes or blood infections as a just-in-case measure. My results came out all normal, though I was on the high end of average for my cholesterol!
I mentioned "mentally more confident" above. I have to say that this whole experience has been exceptionally disturbing. I am 32. Not really an old guy. But facing this is probably like facing life after a heart attack. One begins to feel demoralized, as if my life will have to change significantly and I just won't be able to do all the fun stuff I used to. I feel a bit like a broken or out of date machine. I have also been a bit preoccupied with morbidity such as how should I prepare in case I die and what if I am paralyzed, or worse yet, what if I had to be kept alive by machines or something would I want my friends and family to "pull the plug"?
I guess this is a natural way of coming to terms with the risk....but....like I said, it has been disturbing. At minimum, I think that it is fair to say that it is a wake up call. Clearly I have been pretty hard on my body in the past and it only makes sense that I should be a bit more moderate in the future. Certainly also, it just makes sense to have a living will now that I have a company, a house, a wife, and a child on the way. I have found some good websites (http://www.delafe.com/form/frmlwill.htm) that will help you put together a living will and have found some lawyers to do one up fairly cheaply, but fairly completely. It is not a particularly hard document to draw up apparently.
Interestingly also, my pain has been getting worse since I started investigating. I assume it is just psychological as it would be too coincidental.
Q: I have heard that some people donate blood to themselves. How long before the surgery should I do that if I can in Singapore?
A: According to most doctors, this procedure is quite normal and can be done a few weeks before the surgery. However, they said that this type of surgery rarely requires much blood so it is not all that common to do this. I guess the real issue is that you do not get contaminated blood like HIV or something. I suspect I will do it since I can't see the harm in it.
Q: I have also heard that I could use donor bones so that they would not have to take a slice out of my hip. What are the risks involved with that? Speaking of hip bones, how long does it take most people to recover from that? Will I ever run and jump again? What is the percentage of people who live with an equal amount of pain in their total body after the operation as they did before?
A: On this, the field seems to be mixed. Some doctors don't think it really matters whether you use natural or cadaver bone. Others think it matters a lot. Most doctors feel that natural bone heals faster, but those who support the use of cadaver bones feel that natural bone isnot necessarily "better". Regardless, cadaver bone proponents say that with a titanium plate to support the fused bone, it should not matter so much.
There is also mixed reports about how painful the hip surgery can be over time. Generally though it seems that most hip surgeries go well and the patient has no real long-term problems. At worst, you get soreness when the weather changes, but you can pretty much do everything you want to do. My sense from reports is that it should take about 6-12 months to get over the operation. 10% of the people however, could have long-term pain as a result.
In the end, here is what I suppose based upon the feedback I have received....
Natural bone tends to heal and fuse better. It should take about 1-2 months if all goes well before I can walk around and do what I want with only annoying amounts of pain. Since I do not want to repeat this operation again, I will risk the hip pain in order to do a better job with the neck.
Q: Am I really at risk if I do not operate? Is it greater than the risk I face if I do operate. The doctor here described my situation as a walking time-bomb. Is that fair?
A: The answer seems to be unequivocably, yes.
Q: What are the true risks of the operation. I have surfed several discussion forums online where people talk about their back surgeries. These forums are littered with complaints from people who have had very unsuccessful operations. People have spoken about defects in the titanium screws, bone spurs caused by the surgery, doctors not cleaning everything out (including ferromagnetic artifacts), and a motley of other issues. Now granted, most people who had successful operations are not hanging around spine-problem websites, but how common are these post-operation side effects? Is there any way I can reduce the chance that something like this will happen to me?
A: It appears that .09% of the patients die or are completely paralyzed. An additional 1-5% have their voice box damaged causing either a loss of voice, a weakening of voice, or a change to the timber (it sounds scratchy) or have permanent difficulty swallowing. Also, within that 5% you have people who get normal post-operative infections but who can survive that. It is also important that while I can still live an active life, having 1 less disk puts pressure on the rest. Thus, this could happen again someday to another disk if I stress my neck too much.
Q: What happens after the operation? Have I given myself enough time to recover before I go back to work? Do I need to assume that the most likely scenario is that I live with an equal amount of pain (but just not in the same places) for the rest of my life, but at least I am not at a significantly greater risk of becoming paralyzed should I get in a car crash or fall down some stairs? Will I still have to be just as careful and change my life to be more sedentary? How great is the pain in the hip? Will jogging, hiking, dancing be out of the
A: On the positive side, the sense I get is that if the surgery goes well, there is a really good chance that I can have a perfectly normal, happy, and pain free life. It should take about 2 days before I can get up and walk around and about 2 months before I am back full time. The surgery itself is about 2 hours.
Below are some letters I received from people online.....
"Hi. Don't do surgery until you are nauseatingly familiar with the options and you start dropping things from your affected hands. I mean it... surgery is almost always accompanied with fusion because most of the ortho surgeons are right up there with the guys from the 17th century with the blood letting and leaches. If you can get your Primary to write a referal to Stan Schiffer in California you may want to try what he does: an endoscopic partial discectomy. Much less intrusive, NO FUSION if you tell him so. If you want, call him, he'll call you back. http://www.drschiffer.com There are other Drs out there doing this, it just hasn't caught on and the DRs make MUCH MORE MONEY doing the fusions. I am mostly functioning well going to a pain management Dr (a specially trained anesthesiologist) and taking K-Mart naproxin/aspirin/ibuprofen/pepcid during the day and stronger stuff at night. God Bless and take care don't give up.... at least we now know what is wrong. I nearly went nuts until I got my first MRI ONE AND A HALF YEARS after my neck went chronic. P.S. Make sure you try like heck to stand up straight, head up, chin tucked in, shoulders back... like in the USMC! And don't take any crap from anyone!! PPS: Sometimes they use Coral as a meduim for the fusion. The anterior approach is often called an "Open" because they will be opening you up to get a direct view of the entire affected area."Another person I contacted said,
"Selena -- I am happy to reply as best I can, given my own experience. Your questions are all good ones -- some, unfortunately, cannot be answered definitively. But I'll give you my thoughts.First, your condition sounds more serious than mine. Although my disc was C5-6 also, it did not manifest itself in numbness or neck pain, just left arm pain. But then I did not have compression of the spinal cord, just nerve impingement with bone spurs. So it sounds like your situation is more serious. A spinal cord compression (easy to occur since the area of the cord, spine, and nerves is quite small normally) is more complicated. I hasten to add that I'm not a doctor and have never had any medical training, but it sounds like the advice you got about having surgery is consistent with what I found out doing my own research, given that the pressure on the spinal cord needs to be relieved or it could risk much greater damage.
The ACDF procedure is what I had done. They entered through the front of the neck, removed the ruptured disc, cleared out the bone spurs, and replaced the disc with a piece of bone taken from my hip. Cadavar bone is also sometimes used to avoid the need for another incision in the patient in the hip area. It also reduces recovery time considerably. However, my surgeon refused to do this because he believes a patient heals best and has a better chance of fusion using his own bones. I accepted his judgment.
I was out of work for at least a month, but I'm glad now I had it done this way. My hip is fine, the incision is invisible, and I can do whatever activity I could do before with no problem. I am still restricted somewhat (no cliff diving or strenuous wrestling, for example) because the fusion in my cervical spine has somewhat reduced my neck mobility. Because of this, there is greater pressure placed on the adjoining discs when I turn my head. Consequently, there is a higher risk that one of the other adjacent discs may rupture in the future if I'm not too careful. Personally, I can live with that.
Sometimes a titanium plate is used to help the fusion along. It also reduces recovery time. My surgeon said he only uses a plate in the case of a smoker (I don't) because nicotine use impedes the fusion process, or when there is a rupture of multiple discs (I had just one). Consequently, he didn't plate me -- which I'm glad for, because it eliminated my risk of "loose screws," so to speak. (Some people believe I have enough of them already!....)
As for risk, yes it is there. A patient could die, though it is usually rare. Doing an anterior entry through the neck also risks vocal chord damage, as you note, and some people emerge from surgery hoarse, but after a while get their usual voice back. I didn't have much of this problem. But it's part of the risk/benefit calculation a patient needs to consider, along with the possibility of infection or other complications.Regarding your other questions, I don't know how the surgeons are in Singapore, but yes, it is an expensive procedure here. I had insurance coverage, but am still making modest payments more than a year after the surgery. As for a neuro vs. ortho surgeon, most people told me to use a neurosurgeon, but I chose an ortho who had done a spine fellowship and who I felt I could put my trust in. With spinal cord compression, however, you may want to give serious consideration to a good neurosurgeon. It is a difficult decision, but try to get multiple opinions. As for minimally invasive surgery, some doctors offers new techniques, incuding posterior neck entry, but in my case it wasn't appropriate and wouldn't have solved the problem completely.
I was told I didn't need to take vitamin supplements or do special exercises. I was also told blood loss during surgery was extremely minimal and therefore I didn't need to donate my own blood (an increasingly popular precaution).
And no one can really predict odds of success or failure -- it depends on a lot of things. In the end, if you decide to have surgery, you need to be able to put your trust in someone. Once you do, your life is literally in their hands. It was a tough choice for me. My surgery was successful, so I'm glad I did it and did it the way my doctor recommended. But yes, I've read and heard of many who weren't so lucky.
Please remember that I'm not a doctor, just a patient, so take everything I've said with that in mind. I wish I could help more, but ultimately, the choice is yours and it's between you and your physician. Whatever you choose, I wish you good luck. Let me know what you decide to do. Also, don't hesitate to let me know if I can provide additional clarification on anything I mentioned about my own case"
So anyway, it has been some weeks now that I have been doing my research and I have pretty much settled on the doctor and the date of the operation.
I will go with one of the 4 doctors I saw in Singapore who is a friend of my cousin-in-law who did the original MRI, and a well-respected surgeon who my sister-in-law in Cleveland also knows.
I will have the operation on December 20th. It is not as much pre-operation time as I had hoped for, but it will make work much easier to deal with since the end of December is very much a downtime due to the Christian and Muslim holidays.
Will keep you posted.
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