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Multilevel ACDF Surgery Date But I Might Skip It?? & Questions

robinflrrobinfl Merritt Island FLPosts: 42
edited 10/12/2016 - 8:06 PM in Back Surgery and Neck Surgery
 Due to insurance red tape my surgery was cancelled twice. But now my pain is so much better I', considering skiping the surgery altogether. 
I have 4 Cervical herniated disks: C4, C5, C6, C7/T1. The C7/t1 is the worst. Two epidurals, neither worked. 

I'm 61 year old female.

Protocol since July:
  • Moved into a friend house so I have no housework
  • Bone Broth
  • Glucosamine chondroitin
  • 5000mg MSM
  • Golden Milk (Turmeric, Pepper almond milk)
  • Wear a posture devise that buzzes when I have incorrect posture (hangs on back of my neck)
  • Physical therapy
PAIN IMPROVEMENT: 
My pain has gone from a HORRIBLE 10 (could not stand it cried and stayed packed in ice) to a 0 with pain meds and about a 3 when meds wear off. So I believe I am healing.
I had numbness, tingling, weakness, in my right arm that is gone now.   

The reason I don't want Multilevel ACDF Surgery
  • Fusion failure of one or more levels in multilevel fusion surgery can occur in as high as 40 to 50 percent
  • I might still be in pain after surgery- even more
  • It may cause damage to disk above and below fusions
  • Greater possibility of second surgery
  • Dr said he might not be able to get to C7/t1 from front. 25% chance he has to close me up and try from my back.
  • I have severe osteoporosis. I assume surgery problems will be worse since my bones are bad.
  • The risk of adjacent segment disease is felt to be progressively higher with more and more levels stiffened by fusion. 
  • Scar tissue problems causing more problems.
  • ROM.  On the average they say you loose 10% per level. 
  • If I am wrong about any of these let me know!
I go for surgery consult tomorrow to schedule on Oct 28. I want to ask for a second MRI. My last one was in July. I want to see if there has been progress and hopefully see the rate I am making progress so I can figure out how long I need to rest. 

PROBLEM: I'm resting now but when I go home to hubby and two teens (all spoiled rotten) I will be back in change of all housework and it drives me nuts to see things messy. I am afraid I will rei-injure myself the first day home. I can stay where I am for years but hubby wants me home to cook and clean ASAP. 

When I asked the surgeon if it was possible to heal on their own he said if would have to be a major miracle because the damage was so severe. Well, I believe in miracles.

QUESTIONS
  1. Anyone here who had Multilevel ACDF Surgery that did well?? or not??
  2. How long would it take to heal with this protocol? weeks? months? years?
  3. Is it hard to get a 2nd MRI? Can I insist? or will I make the guy cutting me upset?
  4. Can I wear one of those bone stimulators things before surgery to get better faster? 
  5. Is there anything else I can do to speed healing.
  6. Will drinking bone broth 5 x a day be better than once a day?
Thanks so much.




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1

Comments

  • You are asking the wrong questions.  The only relevant question for ACDF is whether your central spinal canal is being compromised by your disc herniations -- i.e., how severe your herniations are -- and whether, as a result, you are at risk from paralysis from a minor fender bender or fall.  Everything else is completely meaningless. If your central spinal canal is not compromised, you can put off surgery as long as you want, and most surgeons will not operate anyway merely for pain.

    I can assure you that neither bone broth nor turmeric nor any other "natural" remedy will magically make your spinal canal bigger if that is your problem, but you haven't stated whether that it your problem or not.

    With a MRI as recent as July, it seems not like you need a new MRI, but rather you need someone to sit down and explain your MRI to you and what it means.

    And for me personally, if a surgeon was recommending a three-level fusion, I would go out and get at least one more opinion, if not several, as to whether that is the best approach or whether a more minimalistic approach might solve your problem. I got three opinions recommending a one-level fusion, one opinion recommending a two-level fusion and one opinion recommending a two-level fusion topped by an artificial disc replacement. I went with the one-level fusion because, at the end of the day, I trusted the surgeons who told me that my other levels were not bad enough to fuse.
    C6-C7 ACDF - January 20, 2016
    Shoulder surgery - August 2, 2016
    Interlaminar laminotomy, mesial facetectomy and foraminotomy bilateral at C5-C6 and unilateral left at C6-C7 and bilateral C6-C7 facet fusion - December 7, 2016

  • robinflrrobinfl Merritt Island FLPosts: 42
    edited 10/13/2016 - 6:52 PM
    Thank you L.A.! This is very helpful because this is all new to me and its very confusing. I need to know what the right questions are. 

    Yes I have stenosis (numbness and weakness in my right arm).  The protocol was to build bone as much as possible for the surgery because of osteoporoses. 
    I would LOVE someone to help me understand what MRI says. 

    MRI IMMPRESSION
    1. Large right paracentral extrusion and angular tear C7/T1 with effacement of the right side of the vertical theca sac and mild mass effect on the right side of the cervical spinal cord without central cord myelopathy. There is severe stenoses of the right performing zone. 

    2. Mild broad-based concentric disc ostephyte complex C6-7 with moderate left foraminal stenosis. 

    3. Mild left paracentral disc ostephyte complex C5-6 with severe left  foraminal stenosis. 

    Can you explain how removing disks or fusing disks increases my spinal canal thats where I am confused?? 

    I am getting a 2nd opinion.  I went in and talked to them about  artificial disc replacement but they said the X-rays showed to much stenosis. I'm going back with MRI CD. Awaiting call for 2nd appointment.

    Today I found out surgery is $200,000 only 80% covered by insurance. I don't have $40,000 laying around (who does?) Plus the surgeon wrote by hand on my form for surgery possibly unable to get to C7/T1. 

    Thank you. 
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  • That's an interesting MRI report.  I have never heard the term "right performing zone" and one of my best friends is a radiologist and I have spent a lot of time with him going over both my own imaging, as well as reviewing imaging of "normal" spines.

    Do you have tingling or numbness in your pinky?  That is where you would expect C7/t1 to radiate to.

    At least from your report, there is nothing that says that your central cord is being compromised, which is an absolute indication for surgery. My central cord was compromised at C6-C7 and five out of five surgeons said that level needed to be fused.

    Your MRI report doesn't even indicate any herniations at C5-C6 or at C6-C7.  Maybe they are there and you had a lousy radiologist, but they are not listed on the report.  I have herniations at practically every level of my cervical spine and each herniation is not only clearly noted on my MRI report, but exact measurements were given for the size of each and every herniation.  And even with all those herniations, 3 out of 5 surgeons only wanted to operate on the level where my central cord was being compromised.

    If I were you, as I said, I would be spending my time researching surgeons and trying to get to the best of the best for other opinions., even if I had to travel. It was a little easier for me because I live in a big city and I did a lot of research and saw five surgeons, including some who have national and international reputations, right nearby (and even then, I got differing opinions and had to decide in whom I had the most confidence). I absolutely believe it makes a difference which surgeon you use, both for judgment (which levels to do and which to leave) and for technical skill. I had no swallowing problems whatsoever after ACDF. I either got very lucky or it is a testimony to the skill of my surgeon. I believe it is the latter.

    Further, if C7/T1 is your real issue (which sounds like it might be), I would ask each and every surgeon how many surgeries they had done at that level. That is somewhat of an unusual level for a problem -- statistically, most problems are at C5-C5 or C6-C7.  If I were having surgery on C7-T1, I would want someone who had done a lot of surgeries at C7-T1, even if I had to travel to a major city to find that surgeon.

    Finally, I don't understand this $200,000 business unless you are talking about what they are going to bill the insurance company, not what the insurance company is actually going to pay. Unless you are using an out of network surgeon and an out of network facility, your 20% would be based on the contracted rate, not whatever crazy rate they are going to bill at. All I can tell you is that I had one of the best known spinal surgeons in the U.S., who does not accept insurance, and I paid him $10,000 cash and I paid the anesthesiologist in the neighborhood of $1,300 and the facility, which was in network, was allowed $25,000, of which I had to pay 10% based on my insurance policy. Now a three-level is going to be more expensive than a one level, but the point is my surgery with one of the best surgeons in the world was under $40,000, not $200,000.  Something is not adding up.

    I would do further research.
    C6-C7 ACDF - January 20, 2016
    Shoulder surgery - August 2, 2016
    Interlaminar laminotomy, mesial facetectomy and foraminotomy bilateral at C5-C6 and unilateral left at C6-C7 and bilateral C6-C7 facet fusion - December 7, 2016

  • robinflrrobinfl Merritt Island FLPosts: 42
    edited 10/14/2016 - 10:14 AM
    I only typed in the impressions (which I assumed was a summary). This like reading a foregone language for me I wasn't sure which was most important.  

    Correction "right pre-foraminal zone" does that make more sense?
    _______________________________
    Here are the FINDINGS:

    C5-C6 There is diffuse disc desiccation with moderate loss of disc height. There is a broad based  left paraccentral disc osteophyte complex measuring 2.4 mm in the greatest AP dimension with severe narrowing of the left neural foramen. Spinal canal and right neural foramen remain patent.

    C6-C7: There is a diffuse disc desiccation with moderate loss of disc height. There is a mild broad based concentric disc osteophyte complex with mild effacement of the ventral theca sac and moderate encroachment on the left neural foramen. The spinal cord canal diameter remains patent. 

    C7-T1: There is a diffuse disc desiccation with moderate loss of disc height. There is a large right  paracentral disc extrusion and annular tear measuring 4 mm in the greatest AP dimension with mild mass effect on the right side of the cervical spinal cord without myelopathy. There is a severe narrowing of the right performing zone. The left neutral foramen ins patent. 

    T1-T2: Mild posterior bulge.

    There is a straightening or the normal cervical lordosis. The spinal cord is normal in caliber and signal intensity. The cerebellar tonsils are in good position. The paravertebral soft tissues are within normal limits. 
    ______________________

    I have tinging and numbness that comes and goes in my shoulder, down right arm and into my fingers including my pinky. Occasional in my left hand and fingers ( I don't remember it bing in my left pinky. )

    From what the surgeon told me C7-T1 is very unusual and almost never done. Not sure how to find a surgeon specializing in this area except to visit several (which I plan on doing after reading your reply). 

    Thanks so much.








  • Your radiology report now makes a little more sense with the further details you have provided.

    Since your symptoms are mostly right-sided, but your report only mentions left-sided issues at C5-C6 and C6-C7, this may indicate that C7-T1 (where right-sided issues are noted) is your real culprit.

    With severe osteoporosis and a problem at C7-T1, which is statistically unusual, you are unfortunately what is known in medical parlance as a "complex case."

    As such, if I were you, I would be heading not only to the biggest city in my state, but also to the biggest cities in my region of the United States for opinions from nationally known spine surgeons. This is not setting a broken bone. Studies in all surgical areas absolutely show that the surgeons who get the best results are the ones who do the most surgery. Unfortunately, especially with an unusual level like C7-T1, you are not going to find that in the hinterlands.

    The more levels you do, the greater the risk of non-fusion.  I am not aware whether osteoporosis increases that risk even further, but that is something I certainly would be asking the surgeons.

    I would also be asking very hard questions about whether a three level fusion was necessary or whether a surgery should only be addressing C7-T1 (and be prepared that you might get different answers to that question, even from leading surgeons. A lot of this is judgment call).  Your report says severe foraminal stenosis at C5-C7 and only moderate foraminal stenosis at C6-C7.  I can just tell you from personal experience that even with severe foraminal stenosis at practically every level of my cervical spine, 3 of the nationally known surgeons I saw were adamant about not doing a multi-level fusion. Also keep in mind that your report says that you foraminal stenosis is on the left, but you are reporting mostly right-sided symptoms. So maybe the levels with the left-sided issues don't need to be fused. One thing that informed my decision-making was that not only 3 out of 5 surgeons were recommending against a three-level fusion, but my pain management doctor told me that you could always go in and do more levels later, but you couldn't undo what had been done.

    As to insurance issues, one other thing that I forgot to mention is that if you plan to stay in-network, by law, there is a maximum out of pocket that you can pay in one year.  Some policies have lower limits, but my law the maximum for an individual policy is $7,150 and $14,300 for a family plan. Your own policy may have lower limits - mine was only $4,000.  So if you stay in network, you are never going to pay more than those limits for anything. The hospital and doctor if in network can bill $2 million, but your maximum responsibility is never going to be more than $7,150 for an individual plan and $14,300 for a family plan.  And if you have already chipped away at those limits through other medical visits and procedures during the year, the surgery will cost even less.  Since I already had surgery in January and a lot of medical visits this year where I paid my co-pays, by the time I had a shoulder surgery this summer, I had exactly $350 left of my maximum $4,000 limit and since my shoulder surgery was done completely in network, it cost me $350.  You need to understand how insurance works.
    C6-C7 ACDF - January 20, 2016
    Shoulder surgery - August 2, 2016
    Interlaminar laminotomy, mesial facetectomy and foraminotomy bilateral at C5-C6 and unilateral left at C6-C7 and bilateral C6-C7 facet fusion - December 7, 2016

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  • MagistraMarlaMMagistraMarla San Antonio, TexasPosts: 217
    I have just a couple of things to add here, since my problems are in the lumbar area.  I also have osteoporosis.  Are you taking anything for it, such as Fosamax, etc?
    My primary doc wanted to prescribe Fosamax, but my surgeon wouldn't have it, saying that it might interfere with fusion.  The only thing that he would allow is Forteo, which is quite expensive, but he went to bat for me with my insurance.  I'm only paying $33/month for it.  It's a daily injection and is supposed to help the body with bone formation.
    I will also have a bone growth stimulator after my surgery, which my former surgeon refused to order.

    Good luck with your research.  I agree with L.A.Spiney.  After my fusion failed, I typed in "Best surgeon in Texas for lumbar spine revision surgery".  Three popped up, all in the Dallas area (largest city in Texas).  I chose the top one, who specializes in revision surgeries, scoliosis surgeries and major spinal trauma.  My physical therapist liked that he does scoliosis surgeries on kids, which indicated to him that the guy has to be good.  The surgeon and the hospital where he works are "in network" for my insurance, so I was lucky there.

  • I think it also goes without saying that you want a fellowship trained spine surgeon.  Any orthopedic surgeon or neurosurgeon can theoretically do spine surgery, but I personally wouldn't use someone who hadn't done a specific fellowship in spine.

    And I think it matters very much where they did their fellowship. You can easily research which are the best spine fellowship programs in the country and ideally you want a surgeon who had one of those fellowships. I think it matters who trained your surgeon.

    Especially with a complex problem like yours, someone who publishes and who is respected by his peers would also be important.
    C6-C7 ACDF - January 20, 2016
    Shoulder surgery - August 2, 2016
    Interlaminar laminotomy, mesial facetectomy and foraminotomy bilateral at C5-C6 and unilateral left at C6-C7 and bilateral C6-C7 facet fusion - December 7, 2016

  • robinflrrobinfl Merritt Island FLPosts: 42
    edited 10/15/2016 - 1:14 AM
    This has been so helpful. I will do my homework  I need to do more research on surgeons and how insurance works. 

    Does anyone know why  bone growth stimulator can't be used before surgery to strengthen bones?

    Not mentioning names because not sure if it is allowed. 

    The surgeon I have been consulting is a board certified neurosurgeon CEO and Medical Director at a Melbourne Spine Institute (2 locations on the East coast). He has done over 2,000 cervical decompressive discectomies and treated over 1,000 herniated or degenerated lumbar discs and over 300 laser spine surgeries.
    At my last appointment I met with the PA not the surgeon and asked if he could only do the C7/T1 the PA said might as well do them all because they eventually needed to be done (then the surgeon hand wrote on surgacal consent form "May not be able to do C7/T1 ").  It will interesting to hear 2nd and 3rd opinions. 

    I have two appointments this week in Orlando: The first the dr has 40 years experience the second only has 9 but the clinic is considered one of the best in SE US.

    The first Orthopedic Clinic (4 locations in central FL).  The doctor is an orthopedic surgeon specializing in minimally invasive surgery of the spine. An MD for 40 years. Education: University of Oklahoma | Norman, OK M.D. University of Oklahoma | Norman, OK B.S. – Engineering. Board certified by the American College of Spine Surgery.

    The second Orthopedic Clinic  (10 locations in central FL). They are the doctors for Orlando Magic team. The doctor specialities in orthopedic surgery of spine trained at Orlando Regional Medical Center Certificated by American Board of Orthopaedic Surgery. University of South Florida Health (2003).

    LA can you give me an idea how to find a  fellowship trained spine surgeon?

    I'll know a lot more next week with these apps and 2nd MRI. Thank you so much. 


  • I can answer some of your questions only from my personal experience. I am a 60 year old woman.  I had multi-level ACDF fusion on C6/C5 and C5/C4.  They replaced 2 disks with some sort of composite spacers (not bone) and screwed in a titanium plate .  I was driving within one week - no collar ever required.  Three months out, I still have a little bit of residual pain in my R. shoulder, upper thoracic spine, and over my adams apple.  Interestingly, I NEVER had pain at the incision on the front of my neck, and I think it itched maybe 3 times.  I consider it a big success and the pain is minor compared to my fibromyalgia.

    My issues were bulging discs and mild stenosis of the spinal canal, but bone spurs were the biggest problem. Purely old-age wear and tear issues. Spurs would not heal on their own, although there was a chance after many years of progression it would fuse itself and improve (or get worse - not predictable).  I had pain in my r. shoulder and shoulder blade.  I had major weakness (I called it spaghetti arm) all the way down into my fingers.  No numbness or tingling in my case.

    My range of motion has not noticeably degraded - the surgeon said I could expect a TOTAL of 11% reduction in the head nodding motion (that's for 2 fused joints).  If my ROM is reduced, I can't tell and don't care.

    My range of motion in my shoulder is sooooo much better, and the strength returned to my arm.  I no longer hold it tight to my side for comfort.  After 3 weeks of PT starting a month after the surgery, I returned to the gym and yoga -resuming upper body exercises, which I had been struggling with for a couple of years.

    Your family care and support issues aren't just logistical.  It seems to also be a matter of establishing boundaries.  I'm a caretaker for my 90 year old mother, and it has been a challenge for me to reevaluate my role as I'm aging, too.  We have reluctantly made the decision to hire help (housekeeper, yard care, etc.)  Once the priorities had been established, we realized it was affordable, especially compared to the alternatives (such as assisted living).  I highly recommend getting some type of help.

     I waffled  with several arguments: "Should I wait until I'm older and technology continues to improve?"; "Is it really bad enough to risk surgery?"; "Will I be less resilient in recovering from surgery as I get older?"; "Will I be back in surgery as the other joints get stressed out by the fusion?"  The tipping factors were that pre-operative PT failed, and  my function was so degraded, that it was interfering with my ability to exercise. Regular exercise is critical as part of the treatment for my other health problems, especially the fibromyalgia. Fortunately, my gamble paid off.

    My two negative experiences - I disliked the first surgeon I saw, who refused to provide a referral for a second opinion.  I was much happier with another surgeon, referred by my PCP.  I also experienced post-operative depression.  I would not hesitate on that account, now that I know it exists. I feel I would address it more openly, consult professionals sooner and cope with it more quickly and more effectively.

    If you have the pain under good control, you seem to have bought yourself some time for decision making.  Having to make the decision was stressing me out, and I felt better once I committed to the surgery.  But sometimes the best decision is to postpone the decision, while you gather data and figure out what your body it trying to tell you.


  • robinflrrobinfl Merritt Island FLPosts: 42
    edited 10/21/2016 - 7:56 AM
    Thank you, Thank You, Thank you LA for convincing me I needed more opinions!

    I received my 2nd and 3rd opinion in Orlando, well sort of.

    Fiasco: I had three MRIs
    1 Cervical in July (imaging place in Melbourne )
    2. Lumbar in August (imaging place in Melbourne )
    3. Cervical Oct 18 (Surgeon #1 office)
    Drove an hour to Melbourne last to pick up my July Cervical. They gave me the lumbar WRONG disk and I din't notice until I got to appointment then the MRI done Oct 18 by my current surgeon was so bad no one could read it. (HUGE RED FLAG on Surgeon #1)

    Yesterday, I drove an 1.5 hour Orlando for 2 appointments and have to go back with the July MRI but I did get some great news. Both agree that:

    BOTH SURGEON #2 and #3
    ~ Said the MRI by Surgeon #1 was one of worse they have ever seen HOWEVER
    ~ Both agree my 4mm herniation at C7-T1 MRI reports and my symptoms warrants surgery but both need to see MRI.
    ~ Both argee mutual-level is not a good idea.

    SURGEON #2
    ~ Stated he is well aware of my surgeon #1 and his only qualification for surgery is breathing.
    ~ Feels I need another nerve test because Surgeon #1 did my only never test and he doesn't trust it.
    ~ He also wants another MRI.
    ~ Has done several C7-T1 one last week.
    ~ 9 years surgical experience

    SURGEON #3:
    ~ Said my C2-C3, C3-C4 has a lot of arthritus and fusing C-5/C6/c7/T1 would be a disaster and probably require more fusing within a year than my ROM would be horrible.
    ~ Believes he can do an artifical disk replacement and no fusion and has done several at C7-T1
    ~ Did not ask for another MRI just wants to see the one from July. I will go back with it on Oct 25.
    ~ Did not request another MRI but want to see the July one ASAP.
    ~ 40 years surgical experience, teaches cervical procedures at ORMC

    I'm wondering if a second nerve test is necessary and what it will tell? Surgeon #3 did not require one. Surgeon #2 was emphatic he knew the best nerve test dr in the area and she should do it.

    The artificial replacement disk stats are ver impressive. Anyone here have any reviews?


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