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If I Knew Then What I Know Now


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Old 09-08-2006, 06:24 AM   #1
cpmillerva
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ACDF: If I Knew Then What I Know Now

Hi. I am a new member to this group. I am a 59 (almost 60) year old with a diagnosis of cervical disk disease. The most effected area is C6-C7. My orthopedist has advised me that essentially I have two options: take anti-inflammatory meds for as long as I can and tolerate the pain or have ACDF surgery. I found this group while doing online research about the procedure, and Iím hoping that some of you who have faced the same decision can advise me.

I was first diagnosed with degenerative disk disease (DDD) about 3 years ago. I believe this all started when I suffered whiplash in car accident about 1996. When the problems first became troublesome in 2003, it was mostly neck pain. At that time the doctor took a MRI and prescribed naprosyn and physical therapy. I went to PT about 3 months and was able to take the meds about 4 months and became mostly asymptomatic. Between 2003 and early 2006, I had occasional stiffness in the neck but nothing serious. Then around March of this year, the stiffness in the neck returned and was pretty much constant. I could hear popping or cracking sounds and sometimes my neck would just lock up. If I had to look over my right shoulder, I often had to turn my body (not fun when youíre driving in Northern Virginia traffic). And I also noticed that my right arm would feel numb and my hand would be tingling. I mentioned this to my Primary Care physician, and he took a cervical spine series of x-rays and referred me back to the orthopedist.

I saw the orthopedist about 2 weeks ago and when he compared the recent x-rays to the 2003 MRI, he said there had been significant deterioration in the C6-C7 area and there was also evidence of bone spurs. He gave me another prescription for naprosyn and scheduled me for another MRI (on Monday, the 11th). Iím also going back to physical therapy. But he also said that in his opinion neither the meds nor the PT would give me much relief from the pain and numbness. Only surgery could do that.

After reading many of the postings here, I have to truthfully say Iím more confused than ever about whether I should have the surgery. First, I was surprised that many of the members here who have had ACDF seem quite young. Of course, many of you have suffered injuries that led to your problems as opposed to it just being age related. And yet many of you have had lengthy recoveries and post-operative experiences that have not been pleasant. My orthopedist made the procedure seem like not a big deal Ė 2 weeks of ďtaking it easy,Ē with complete recovery in 4-6 weeks. But many of you have had several months of recovery time and are still in pain or unable to resume activities you were doing before the procedure. I should tell you that I get up at 3:45am every weekday and am in the gym by 5:30am. I do 45-50 minutes of cardiology exercise (elliptical) every day and add weight work twice a week. How long might it be before I could get back to that level of activity?

I know that everyone is unique and every procedure is different, but my question to the group is: If you really knew before the surgery what the recovery would be like, would you still have made the decision to have the surgery? Are you experiencing significantly less pain post-op than you had before? Did you decide to have the surgery after trying meds and PT and other possible remedies (e.g., acupuncture)? Did you get a second opinion before deciding to have the surgery?

Sorry to have taken so much space, but Iím really struggling with this issue, and Iím trying to make the most informed decision possible. Thanks in advance for any responses.

Curt in Virginia

Last edited by cpmillerva; 09-08-2006 at 02:12 PM.

 
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Old 09-08-2006, 07:09 AM   #2
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Re: If I Knew Then What I Know Now

Hi Curt,

I'm sorry you are having trouble and having to make this decision.
At age 32 I was in a rollover accident - didn't have any neck pain, but the seatbelt left a large bruise across my neck & chest so they did neck xrays just to check me out. At that time, they told me I had significant DDD, especially for someone my age and asked if I had neck trouble. I told them I really didn't and they said "You will!"

I'm 44 now and up until last year the only symptom I had was the crunching/grinding sounds with turning my neck. Then I started having arm pain (like a blood pressure cuff pumped up waaay too high on my arm.) MRI showed the herniated disk, spinal stenosis and bone spurs, so I was referred to pain management/anesthesiology group for epidural steroid injections.

It was explained to me (by more than just this doc) that many people can have these abnormalities on xray and not have symptoms - it depends on how the nerve exiting the spine is doing. Many times the nerve is irritated and swells, making the condition worse - so symptoms show up. If they can calm the nerve(s) down and reduce any swelling, then the symptoms may go away. You are right, it won't change the abnormalities - but it might change the pain and symptoms.

After I started my epidural steroid injections (ESI's) I talked to 2 other people that had been able to avoid surgery (one neck, one lumbar) because of the relief they rec'd from the ESI's. (One did PT too) so I knew there was hope. It works for some people - I prayed I'd be one of them.

I would be very leary of a doc who suggested surgical intervention without trying the conservative options first. Maybe a second (or even third) opinion would help you with your decisions. I would look into ESI (from someone who specializes in them - anesthesia groups, pain mgmt groups, or sometimes sports medicine groups, etc - and also seek the opinion from a neurosurgeon.

My exercise routine was walking. The ESI doc told me to stop my walking until things settle down. All the pounding at the disc wasn't helping me. He also told me to ALWAYS wear athletic shoes - and to make sure they are good quality so to provide good shock absorption because my spine needed it. Make sure you share your exercise routine with your doctors. It's good to have strong neck muslces with this condition - but any repetitive movements or impact to the discs might contribute to nerve inflammation /flare or add to the build up of spurring, etc.

Anyway, the ESI's did not work for me so he referred me to a neurologist. The neuro did additional testing (A CT/Myelogram - test involves dye injected into spinal fluid to obtain better pics) - only with those results, AND the fact that I'd already tried conservative treatment, did he end up recommending surgery.

My father had near disasterous complications from a fusion. (Screw broke and with it part of the vertebra - stabbing into his spinal cord for a over a week before they believed him about his sudden horrific change in pain. ) --- So I was well aware (and terrified) of the complications that can occur with this type of surgery. I wanted to make sure I had exhausted all conservative measures so that if something did go wrong, I wouldn't be able to look back with any regrets that I should have tried something else first.

I didn't have neck pain before surgery (only pain down my arm) but I do have neck pain (probably mostly muscular) post op. (I'm 2 months). The other thing that has been very difficult with my recovery is that I have lived on anti-inflammatories (NSAIDS) for years because of arthritis in other areas - and now I have been told to avoid them for a whole year because they can interfere with the bone graft fusing. I ache all over. Would I do it again? Yes- I could not live with that amount of pain in my arm, hand and fingers. When I woke up after surgery the arm pain was gone!

Sorry, I didn't mean to write a tome... just wanted to share my journey and to suggest you take your time with your decisions and get multiple opinions. It might not be a big surgery to the surgeon, but it is to the patient.

Good luck with your decisions. Please keep us posted.
Lilacs

Last edited by Lilacs&Lillies; 09-08-2006 at 08:43 PM.

 
Old 09-08-2006, 01:27 PM   #3
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Re: If I Knew Then What I Know Now

Curt,

I am 54 years old and had the surgery when I was almost 52.

I had a very similar history to you, in that I was rear ended at a stop light a number of years before.

One thing you should consider is that the web, and particularly a Health site, will have more people with problems looking for answers, than success stories. People who have successful surgeries, go on with their lives, and really don't have a need to come back here. This is a help site, and support for those going through the problems associated with c-spine and surgery and recovery.

This is a very difficult decision to make, in that we all hope for less invasive alternatives. The jist of it is, if you have a mechanical problem, like DDD, spurs, and all the other stuff, it's really hard to find relief without the surgery. In my case, I had bone rubbing on bone, and PT, injections and the like just didn't help.

What you will find is, there is a turning point where the pain get's so bad, and your quality of life declines so much, that it becomes an easy decision.

I have had a very successful surgery, and got my life back. I feel as good as I did 20 years ago when this all started for me. I am able to do most anything I want, and many things I could no longer due with the pain.

I had a normal recovery. I was not able to do much excercise other than walking for the first few months after the surgery. You will only be able to do light weight training after that amount of time. You won't want to do any for about the first month. Your docs will help guide you on this. The fusion takes a while, so they don't want you lifting much.

I would think after about a month the eliptical would be all right. Your body will tell you when you will be ready for it.

I work out every other day and started an excercise routine at about six months into recovery.

Dennis

Last edited by dennisgb; 09-08-2006 at 01:44 PM.

 
Old 09-08-2006, 02:10 PM   #4
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Re: ACDF: If I Knew Then What I Know Now

Dennis - thanks so much for the response. You're right that folks without complications or issues don't tend to subscribe to these blogs. I'm very happy that you had a successful operation and that you've been able to resume normal activities. I guess after the MRI next week and the PT, I'll have a better idea what I should do.

Last edited by cpmillerva; 09-08-2006 at 02:22 PM.

 
Old 09-08-2006, 02:15 PM   #5
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Re: ACDF: If I Knew Then What I Know Now

Lilacs - thanks for the response. You've confirmed what I was thinking that 2 or more opinions are crucial when making a decision like this. I'll let you know how the MRI and PT goes and what the doctor says on the 19th.

Last edited by cpmillerva; 09-08-2006 at 02:21 PM.

 
Old 09-08-2006, 05:33 PM   #6
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Re: ACDF: If I Knew Then What I Know Now

Dennis makes a very valid point. You are more likely to hear about the horror stories than the good outcomes. Statistically speaking the surgery is 90% successful (I read that in a few places).

I had mine done a few years back c4-c7 with no brace, a plate and several screws. If I had to do it again I'd do it in a heartbeat because my problems at that time were instantly gone. It was incredible to wake up from surgery and feel no pain, no numbness.

I was in an "accident" over 20 years ago where someone had caused me to have what they call a level 3 whiplash. Basically it's the worst form of whiplash you can have without actually tearing all the muscles. I didn't have really any problems with my neck once that healed, just occasional aches.

Three or so months before my surgery I started having horrific pain. Nothing compared to that pain, no even childbirth. The thing was my pain was in my shoulder, my neck never hurt so my doctor thought I tore my rotator cuff again. He did an MRI and things looked fine but the pain was getting worse with each day. I also had numbness in several fingers. I had emergency surgery for what was believed to be a rotator cuff tear only to find out that wasn't my problem.

I was put in a sling which made the pain increase ten fold and the doctor couldn't figure out where my pain was coming from. It was through trial and error that it was decided my neck should be checked. Sure enough I had some small, medium and large herniations. I had my ACDF about two months later.

Fortunately for me I only suffered for a short period of time. I do think the longer you wait to have it done, especially if there is numbness, the greater risk you run of permanent nerve damage.

The first two weeks were the hardest but I would say probably by the end of 6 or 8 weeks it was like it never really happened. I had some soreness and stiffness but physical therapy really helped to work those issues out.

As far as being able to go back to the gym, that's something you'll need to discuss with your doctor. I would imagine if you do any type of lifting then it would be a minimum of 6 weeks, if not longer, depending on how many levels they do. You do not want to do any lifting of any sort that could cause the surgery to fail. When you are able to lift again it will only be very light weights. Things like riding the bike, any non jarring activity you may be able to do sooner than you would the lifting. Again, you'll need to talk to your doctor about that.

I honestly wouldn't be worried about the surgery. Everyone I know personally who had it was very happy with it. The only folks I have ever "met" who had problems are those here on the board.

Good luck
Barbie

 
Old 09-08-2006, 06:47 PM   #7
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Re: If I Knew Then What I Know Now

I agree that most of us who come here post surgery are the ones with the lingering problems--the people who had succesful outcomes will rarely visit these boards because they don't have any problems anymore.

My advice, get several opionions from several surgeons--have them each analyze your MRIs and see how bad they think the compression is. If you don't have any bone spurs, consider yourself lucky.

I am 39 and had two level (c5-7) ACDF in March--discs were really flat and had large bone spurs hitting the cord at both levels--the NS said it was too far gone for it ever heal itself, so the only option was live with the pain or do the surgery. 6 months later I am in twice amount of pain, twice the amount of numbness, and now have pain and numbness in my right shoulder/hand--I only had symptoms on the left side before surgery--my NS told me last week he can't do anything more for me and has no idea why I still have pain and numnbess or why it has spread to the other side--he thought it may just be permanent because the fusion looks "perfect"

My advice, given your age (no offense), is that if you feel you are going to need the surgery down the road, you may as well do it now--the younger you are the better chance of the surgery/fusion being succesful. On the other hand, if your compression is not that bad as determined by the MRIs, then, if I were you, I would not do the surgery, but seek epidurals, selective nerve root injections, PT and some kind of pain medicine program and see if you can get to a "live with it" state. The surgery is no guarantee and who knows if that 90% success rate claim is true or not--there is plenty of bs hype in the medical field.

I see an absolutely awesome pain doc, he is a not a Neurologist, but has an MD speicalizing in anasthesiology and pain medicine. I think most neurologists are flakes and can't help too much--see a real pain doc and see what he can, nothing to lose. At least the pain docs are not in a rush to send you off to their Neurosurgeons partners or friends.

 
Old 09-08-2006, 07:14 PM   #8
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Re: If I Knew Then What I Know Now

Your story is interesting. I am 47. I have had 2 different ACDF surgeries at C4-6, and another at C6-7. I am not a weak person, used to be active and strong and am really stubborn and strong willed.

Of course there are lots of people who have the type of experience that your surgeon talks about. I had a wonderful outcome after surgery #1, and had a good 8 months of feeling absolutely terrific. I think outcome depends on how serious a persons problems are, the extent of the damage, the length of time the damage occurs over, etc, and your body's own natural tendency to heal, also how many levels and work they do in your neck.

I had underlying problems with congenital stenosis and DDD at a young age. Compounded with a couple disc bulges and movement in my spine, I grew lots of bone spur ridges and compressed the nerve roots and cord. My surgeron told me I am his most difficult case out of his practice - an honor i wish i didn't have.

I am still in recovery from number 2 which was in May, may need number 3 sooner than predicted and have come to understand that I am facing a lifestyle and work change. However, there isn't a day that I regret my decisions, I am miles beter than where I used to be pre-surgery (taking 8-12 vicadin/percosettes, 2400 mg Neurontin and getting injections) and barely able to function. Now I am down to 4-5 Vicadin a day and ibuprofens, some days only need a couple. Intersperesed with some pretty good days.

I hope you have read this far. The surgery itself isn't bad, the recovery is not bad, the collar is awful, but tolerable. Even with all my problems, I call myself a success. I am enjoying life more than I was pre-surgery and I would do it all over again if I were to go back in time.

Get a good surgeon, two opinions, and try conservative stuff first, it does work for some people. Keep asking questions! take care

 
Old 09-08-2006, 10:21 PM   #9
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Re: If I Knew Then What I Know Now

Curt-

first off, what part of NOVA?? I grew up in Vienna, I live outside of Nashville, TN these days...

I would DEFINITELY recommend getting 2nd, 3rd, 4th opinions before going under the knife. I would also look into epidurals, TRACTION, possibly chiro, massage therapy before undergoing any surgery.

In addition, I would consider NON FUSION surgical approaches...

3 weeks ago today I had a two level anterior cervical ENDOSCOPIC discectomy WITHOUT FUSION at C5-6 and C6-7. I had pretty bad herniations at both places that were causing pain in my shoulderblade area whenever I'd turn my head left or right. In addition I was having severe pain in my right arm whenever I'd sit, stand or drive too long.

After trying all of the above suggestions- albeit without success- and after several months of research I chose the non-fusion route over the conventional fusion. It's still early, but I feel like the pain from turning the head left or right is GONE. the arm pain is definitely less, but that could be b/c I haven't been allowed to drive yet.

In any event, everybody's situation is different, I would however strongly suggest that you leave FUSION as your absolute LAST option. Good luck.

 
Old 09-09-2006, 05:59 AM   #10
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Re: If I Knew Then What I Know Now

Someone on the Board once told me that "you will know when YOU are ready for surgery". I guess basically that if PAIN is the impetus for change you then opt for the surgery.

I still have problems after my surgery BUT I have a significantly better life because of my surgery. I treadmill 5-6 miles six days a week, DON"T do weights because I fear it might be too much and I get symptoms when I do them anyway. So you have to mediate your recovery because only you have the internal register for pain that others can't read.

I feel my decisions worked for me but returned to the Board this past month when having some significant pain return at the next level and sought help. It is ashame to stigmatize the people on the Board... people who have recovered have recovered for sure and their being absent is a reflection of this. Let us not forget that Board encompasses people who are walking your walk first hand.

So good luck...I know surgery was my only option in the end but once injured you cannot expect to be the same again. Perhaps more learned at the very least.

I think I felt my best when my teenage daughter told me she had entered me on the net for the most inspiring mom award and as she turned and said " I told them too that besides my mother's fortitude she looks way better at 47 than most moms at 30.'

So....try your best and mostly keep informed and if you find exercise like I did is the most cathartic release through all this then by all means make it part of your recovery.

Good Luck... Nero

Last edited by nero; 09-09-2006 at 06:02 AM.

 
Old 09-09-2006, 12:59 PM   #11
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Re: ACDF: If I Knew Then What I Know Now

For what it is worth my doctor had advised me that as long as there was no bone spurring I could do Epidural Steroid Injections (ESI) and if I got significant relief I could put off surgery indefinetly. However, just this past year the MRI showed significant spurring and since ESI's can't help spurring, he reccomended A C5-C7 ACDF. I had that done in May and I have had some symptom improvement, but I think it's too soon to tell if it's truly been a success yet. Although only 40, I think my neck problems may be related to a fall accident I had in the early 90's.

Karin
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Rt thumb fusion '13. R&L thumb arthroplasty '12 ; RT TKR & Bilat CTS' 11. Fusions: L5-S1('87), L4-S1('93), C5-C7('06), L3-S1('10), C4-C5('13). C5-C7 foraminotomy '08

 
Old 09-11-2006, 11:50 AM   #12
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Re: ACDF: If I Knew Then What I Know Now

Quote:
Originally Posted by Kissa
Dennis makes a very valid point. You are more likely to hear about the horror stories than the good outcomes. Statistically speaking the surgery is 90% successful (I read that in a few places).
This will probably start a controversy (It did the last time), but the statistics are out on the web. Consider that fusion is the only thing measured in most statistics. They do not look at other problems that might be associated with surgery.

The success rate with BMP (bone growth hormone), in the study that I was a part of for approval of BMP use, the fusion success level was 100% two years out. This was on over 300 patients.

The success rate with your own bone and plating, without BMP is 98%

The success rate with donor bone and plating without BMP is something like 93%

You may find higher or lower numbers, depending on how and what was tracked in the patients. The lowest fusion rate that I found in my searches was 90% in a mixed patient survey.

This is a very high success ratio surgery. The numbers improve each year, as experience and improved techniques occur.

Dennis

Last edited by dennisgb; 09-11-2006 at 11:52 AM.

 
Old 09-11-2006, 01:32 PM   #13
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Re: If I Knew Then What I Know Now

Karin,
I'm just curious as to why your doctor said that if you have bone spurs the ESI's won't work. I was just diagnosed with a bone spur which is just about cutting off the canal and I'm in the process of going through with the ESIs. They recommended 3 shots, one every two weeks. I've had one so far which did not help and am scheduled for the next one this wednesday. I was told this could reduce the swelling and hopefully provide some relief.

 
Old 09-13-2006, 11:39 AM   #14
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Re: If I Knew Then What I Know Now

I first found out I had herniated discs in my neck in 1999 when I had severe pain radiating down my back and arm and numbness in my arm/hand. I went to physical therapy which started helping right away. I struggled with this for a whole summer until it finally "healed." This past fall I started having just arm pain and they did another MRI and found I now had bone spurs as as result of the disc healing and it was encroaching in the spinal column slightly. Not too bad right now. The neuro recommended physical therapy again. He said someday I may need surgery if the disc gets into the spinal column too much. But for now, I am taking the conservative route. I am also big into exercising and hate the thought of not being able to do what I love. I had to give up running back in 1999 due to the pounding the pavement and my neck. I also had to change my weight lifting routine somewhat. Whatever you do, DO NOT lift any weight over your head or rest any weight or bar on your shoulders. That is not good for your neck at all. I do not do any overhead extensions or squats with a bar on my neck/back. I do squats against the wall using an exerball. You can still do what you love but just be careful.

I am just praying that I won't have to have surgery one day because I have heard so many horror stories. I also agree that you will know when it is a necessity. My doctor had also told me that if the disc problem was causing nerve damage bad enough that it wouldn't repair itself, then you don't have a choice, you have to have surgery.

Good luck.

 
Old 09-15-2006, 11:42 AM   #15
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Re: If I Knew Then What I Know Now

((The jist of it is, if you have a mechanical problem, like DDD, spurs, and all the other stuff, it's really hard to find relief without the surgery. In my case, I had bone rubbing on bone, and PT, injections and the like just didn't help.) )

Dennis makes many good points like this point above that I've copied. Bottom line is we each have to make our own "painful" decision. Painful in more ways than one.

 
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