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Wish I knew more multiple cervical degenerators like me

Nov 21, 2008 - 19 comments





cervical DDD


cervical surgery


cervical degeneration

So for several years now I have researched, radiographed and been an all around active patient.  However, I get very frustrated that when I put into different search engines "multiple cervical degenerative disc disease" or some variation of that, I get nothing on multiple levels of degeneration.  It seems to be somewhat rare to find people with four levels of degeneration and that's a good thing. Lord knows I wish I didn't have them.  But I do wish there was more information out there for those of us that do.  It can be very difficult to know when what you are feeling is normal for your condition when you don't know anyone else that has it.  I'm not certain if anyone reads my blogs but if they do and they have a similar case PLEASE let me know.  I am happy to share the wisdom, info and random facts that I have learned in dealing with my multiple level cervical DDD.  I hope someone can return the favor.  Or just let me know I'm not alone.  :)
Data can be hard to find on my particular condition and clinical trials usually look for no more than one level of degeneration.  I'd also love to know if someone has seen something I have missed.  A treatment opportunity that I have not explored.
But even if no one reads this or has this or cares (lol) I feel better having gotten it off my chest.

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Avatar universal
by Matelasse, Nov 21, 2008
I have many levels of DDD. I would look under 'spine' for the forums and answers. Many sites are out there.
I had a one level disectomy ( removal ) of a lumbar disc 10 years ago. It wasn't sufficient. I am now going to have a 4 level usion because I now have several discs which are bad. I have it Dec. 1st.
I also just have cervical disc surgery C-3-C 7 with fusions, titanium plate and 8 screws. I am doing very well! No pain as before and my numbness is all gone.
DDD sounds like it is a disease because they call it that but it is actually pretty common. It is a syndrome more than a disease.
Many treatments are available. They do go from worse to worser as we age. I am 57 and now I am just getitng around to facing the issues I have had from too much exercise, too many life's episodes and a fall from a horse. I am now getting my spine repaired so I am good to go another 20 years! I have alot to accomplish. I don't HAVE to have this surgery, It just depends what sort of qality of life you want. I am doing well post op- numbness in hands and fingers is gone!
Stay away from Chiropractors. They can make t worse.
Good luck to you.

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by MVanS, Nov 21, 2008
I am 30.  Diagnosed when I was 24.  My ortho has said he has never seen the level of degeneration that I have in anyone under 70.  I have a risk of paralyzing myself with one of my herniations and will need surgery eventually to prevent this.  I am hoping to put it off as long as possible.  I am glad to hear you had multi-level cervical fusion.  That is one I have been wondering about.  I have not found many who specifically have cervical multi-level degenerations or surgeries.  Will you tell me more about your neck and how it si doing?  How far post-op are you?
Thanks for taking the time to write!

Avatar universal
by Vicki635, Feb 01, 2009
I am a female, 52 and have been very active my entire life.  Have experienced minor to significant back and neck pain most of my adult life, but following an injury to my neck about 15 years ago, I have developed 3 - level cervical DDD, which has gotten significantly worse this past year. I have lived with verying levels of pain over the years, with periodic acute pain that knots my upper back and neck muscles up so tight that I get migranes.  Chiropractors used to do the trick, but now that detetioration is greater, their success is limited.  I have had some luck with pain management medecine. (eg: muschle relaxants and mild to moderate level pain / inflamation drugs have helped.  Injections to stimulate growth and strengthening of the tendons and ligaments have also  provided some improvement,, as well as the 'K' Laser treatments to encourage blood flow and healing to the damaged area.)      Most recently, rather than pursuing a three level fusuion...OMG!, I opted to try the prednisone pack which is inteneded to reduce swelling and inflatmation so that range of motion can improve   It's a week long  treatment that begins with a double dosage and gradally tapes off to the final single dose.  Other than frequent extreme hot flashes.this seems to be helping some, but i am going to ytu smpp
receive a cervical epidural injection on monday.  This is an injection between the spinous process and the sack around the spinal cord.  Much like the lumbar epidural used to reduce the paint of natural childbirth, this cerical epidural is intended to block nerve pain and reduce inflammation of the ddeteriorated area(s).  I have not been pain free for many years and over the past year or so, it has become unbearable to the point of preventing me from running to train for the half marathon's I have come to love  Execise has dwindled with my spirits and I believe this lack of exerise is expediting the determioraton, which continues the visicious cycle.  I want to start exe

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by MVanS, Feb 01, 2009
Wow, Vicki, sounds like you have been through a lot.  I've gone the steroid route before but find the benefits really don't outweigh the problems it causes for me.  It tends to make me very shirt tempered and in my job I just can't go getting frustrated all the time!  :)  I just found out the other day that I now have some permanent nerve damage in my left arm.  Some areflexia- lack of reflexes- that isn't improving when the acute episodes ease off.  I may be getting close rot the need for surgery but I am still really hopeful that I can at least put it off until I have kids in a few years.  My ortho has said pregnancy should be fine but I have read otherwise.  Do you have kids?  Did you have any issues with family and your CDDD?

Avatar universal
by luckysob, Feb 25, 2009
This is the first time I have ever posted anything.  Don't know if it will work or not.  July 2006 I had 9 hour surgery for CSM for stenosis c2-c7 and kyphosis and deformity and DDD C2 - T1 all cervical levels.  It was anterior/posterior reconstruction and decompresion with instrumentation C2 - T2.  After surgery I was 1 and 1/2 inches taller.  I'm male and was 71 at the time.  Before surgery could barely walk or hold head up or sit and little feeling in hands and arms and feet.  I was facing being a quaddraplegic at any time.  I'm doing fantastic now. Most feeling returned and I walk 2 -3 miles daily and live a great life - even though head is rather rigid.  I think I had the best surgeon there is for that kind of surgery.   Jerry

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by MVanS, Feb 25, 2009
Wow Jerry!!!  I am so impressed!  Is your neck stiff daily now?  I have lost 1 inch in height.  it would be so great to have it back!
I too face the risk of becoming paralyzed were I to fall or get in a car accident.  How long did you wait from diagnosis to surgery?  Did you try any conservative methods?
Thanks so much for posting!

Avatar universal
by luckysob, Feb 25, 2009
In answer to questions from MVanS:    There's little flexibility in my neck because I'm totally fused..  I can't lift my head to look up nor can I lower it much to look down.  I can only turn head to the left about 2 inches and a little bit more to the right. It's basically sorta locked in place.  I'm just happy it's still attached to my body.  I have a degenerative arthritic spine and the first indication of trouble was in 1961 when I was 26.  I had a lower back laminectomy and fusion and the neurosurgeon sort of flippingly said "Let me know when you want me to fix your neck".  So the problem got continuously worse over 45 years.  In 1993 I had another lower back lam and fusion and the surgeon said it would be too dangerous to attempt surgery on my neck.  Thru the years I tried every conservative treatment w/o much relief and the Doctors said I couldn't be helped - no one would operate.  Finally in 2006 I went over the cliff as one Dr. described it and I was in the "final stages" before the cord shut down.  From the time of that awful evaluation to surgery was only a few weeks.  I was very surprised that a Dr. would agree to attempt such drastic surgery - all C levels front and back.  Every day I thank God because of the success of the surgery.  Oh I have pain every day but I'm used to it and can live with it.  I resort to taking Vicodin only once or twice a month.  The only reason I'm posting is to offer advice and hope to others with severe spinal problems.

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by MVanS, Feb 26, 2009
Wow!  I have had trouble since I was almost 25.  Now, at 30, the degeneration is starting to speed up.  So I can really relate to your story and appreciate you sharing it with me.  I also have an arthritic spine, worsening arthritis in my low back and the severe CDDD.  So far I have had no surgeries.  
The final stages?  Did they mean you were going to become paralyzed?  Why was it considered so dangerous before?  
I am so glad to hear how well you are doing.  Compared to the pain the herniated neck can cause, a little stiffness and limited mobility sound like small prices to pay.

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by skypilot336, Nov 28, 2009
I had a two level anterior cervical fusion in 2006. Returned to neurosurgeon for increased pain, numbness and twitching in arm in 2009. Underwent a posterior lamenectomy and fusion from C3-T1 in June 2009. Returned to work for a period of one month before pain was intolerable. Currently have immense bilateral pain that is much more significant than anything prior to either surgery. Physical therapy does not seem to be helping. My job is physical, i repair (and move) LCD and plasma monitors of 65" screens. Currently can not perform ANY activity for more than twenty minutes without onset of extreme pain in both neck and shoulders, even just supporting my head brings this on. Used three months of short term disability from work after surgery so back out now with only three months left to resolve. Have appointment Dec 12th with pain management doctor. MRI shows spinal canal open, "successful surgery.

Avatar universal
by floridabound, Feb 01, 2010
Hi, I am scheduled to have a laminectomy and fusion for C3-T1, in about a month.  I have myelopathy, numbness and tingling in hands and arms, weakness in wrists.  However, I don't have a whole lot of pain and I have good range of motion. I'm 59, work full time, and have a few other medical problems.  I'm looking on line for others who have had such extensive fusions and hoping to see good outcomes. I know I have to do this, but am seriously worried about doing so many levels.  It seems like I will not be able to ever turn my head or tip it up or down again! I realize that to those of you suffering with years of pain, that may seem a small price to pay. However, I am still in shock from this diagnosis, because my symptoms are so mild. I have seen 2 ortho/spine specialists, unconnected to each other, and both said virtually the same thing. My neck is stenotic, I have 3 bulging discs, spondelitis, foraminal narrowing, etc.  This also seems very rare; I can't find much literature, or many posters in these forums.  Does anyone have any advice for me, or, if you have had this done, can you tell me how it went afterward? I'd especially like to know if you have pain afterward forever, and if your fused neck is immobile forever?  This is all pretty scary, needless to say. Good to know if others have gone through it and done well, or not.

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by MVanS, Feb 01, 2010
Hi floridabound!
I know how you feel!  I have had all of those problems since I was 25 and I am 31 now.  I am so scared to have the surgery.  If you are risking permanent damage to yoru nerves (I break plates all the time so I have switched to plastic!) then you probably wanna preserve whatever you can, even if it means stiffness.  Though, I won't presume to think for ya!  :)  I choose to hold off on surgery knowing that every day and with every new herniation I have a little bit more permanent damage.  My reasons are that I am hoping medicine will catch up with me, I still have not had kids so I want to wait until I do and they are a bit older (wanna be able to look down at my baby's face), I don't want to have to go thru another surgery perhaps in my 40's because another level has weakened due to the surgery I had in my 30's and because I can't quite face it yet.
It is ultimately your choice.  What are yoru alternatives?  Have they given you any?  What is your risk for further damage and herniations that can lead to loss of bladder function?  How close are you to that?
I don't know if any of this was helpful but you have my best wishes and feel free to ask me any questions.  I have made myself a walking encyclopedia on CDD, vertebral hemangiomas and perineural cysts (cuz I have 'em!)  :)

Avatar universal
by loopy477, Feb 01, 2010
hi there l have DDD in my c5 c6 c7 l have a pevious fracture of c1 c2 which has been fixed with screws rods and bone graft  also l have narrowing of the spine curvture of the spine pinced nerves   l know how you feel as l had afall while in hospital ended up having spinal compression in two areas of my spine lm ony 28yrs old and in a wheel chair in result to this went bk to the neurogon he said the is something wrong with my legs l also have numbess in my hand legs 7mths  l have burning in my neck area  round my shoulder blades he nw says it could be coming frm my lower spine  since my fall having physio aint helped all would nt advice to have surgery has none of this was nt shown before the surgery. l hopeing it will get better any advice you can give me

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by MVanS, Feb 02, 2010
Oh loopy477, I am so sorry you are going through all of this!  I know how you feel if that helps at all.  It is so dang impossible to feel like we shoudl be out sprinting around but can't move.  I have the shoulder blade problems as well and a small herniation immobilizes me for days.  I HATE that you are in a wheelchair!  Is PT gonna help you get out of that?  Please let me know how you are doing!

Avatar universal
by loopy477, Feb 02, 2010
been going to rehab everyweek l just bout stand with a frame and equipment but even then its painful they dont know if l walk again they dont know whats going to happen yet trying my hardest got to have another mri scan again on my whole spine my circulation is poor in  my feet are cold even though trainers they felt them today l am look forward to trying my hardest as l have three young kids to look after always  never say never

Avatar universal
by gomdal, Jan 04, 2012
Wow - this is a huge help to me!  9 years ago I had lumbar fusion done at L4-5-S1 and it was a life changer, possibly saver. I had had to quit my job and school and was on major pain killers with no relief from multimodal PT, steroid injections, traction, etc. It was really impacting my life and the surgery gave life back. Sounds dramatic, but it was for me.

I am now 40 and awaiting surgery to fuse C2-3-4-5 due to DDD. Again PT, traction, injections failed. Am told my spinal system is degrading at a fast rate and is already like that of an 85+ year old.  I can't wait for this surgery, as again, I had to quit a job and give up many things I love. I am ready to get them back and live again!

I have had a hard time learning anything more about the recovery from the neck surgery, although I will get some answers from my doc tomorrow. I would like to know if there is any projection of the "next" location to go -- is it totally individualized? Is there any pattern in terms of time in between or in area (lumbar to cervical to thoracic, etc)?

Avatar universal
by Drussell, Apr 29, 2012
I would like to know more and how I can get more treatment.

Avatar universal
by wedge0510, Sep 19, 2012
I had 5 level disc fusion march 21, 2011 they put in a 12 inch long titanium cage 22 screws and 2 crossbars. I have limited feeling in my right arm and leg. I have a lot of pain in my lower back now. the ddd in my cervical spine, I think was slowed but not stopped. I still get severe twitching spasms and pain across my shoulders. The ddd is in 7 of my discs, 5 they worked on.

Avatar universal
by Lisa_jane_, Oct 04, 2012
Hi this is a first for me so helloooo in 2008 November I had cervical disc surgery on c5 and c6 they popped in a pek cage and fused the bones together after suffering with pins and needles in my left hand and a crushing sensation in my arm. A few months ago I had similar pains and thought noooo not again I went to see my doctor they told me to relax more a few weeks went by I returned to my doctor with severe pain in my arm terrible headaches pins and needles once again she arranged for me to have yet another MRI. Within weeks I had to visit the same neurosurgeon who operated on me previously he explained that this time I need yet another cage and fusion at disc. c3 and c4 the MRI also showed a bulging disc at t1 I'm wondering if this is the cause of sever back pain on my right side ? Or could it be the impinged nerve ? I'm also taking pain relief whilst waiting for surgery which is making me feel as though I'm living on planet zog . P.s I think the neurosurgeon has put me on his urgent list after visiting a&e It can't come soon enough. I'll keep u posted xxxx

Avatar universal
by Omagoodness, Mar 02, 2013
A Texas Howdy to you. I had anterior cervical fusion of C5-C7 in Dec. of 2008 using cadavor bone as the grafts.  After the surgery pain and the recovery wearing a hard coller for 3 months, I had no pain for over three years.  Well, in  2011 I started having slight issues again and by the summer of 2012 I was having scans, MRI's and xrays.  I was diagnosed with bulging and torn discs two levels above and one level below my last fusion and to really add to it, the graft at C5-C6 was cracked in half and shifting.  It has been several months of injections, PT and pain meds. AGAIN.  I go back into the hospital on April 12, 2013 to have a posterial (back of neck) cervical fusion of C3-T1.  This is scary and I would just love to hear from anyone who has had this many fusions going in from the back of the neck.  Is the surgical pain worse going in from the back?  Longer recovery?  My husband was deployed when I had the first one but the surgeon called him in Afghanistan after the surgery was done.  My husband slept in a chair at the base hospital in Bagram air base in Afghanistan next to the phone.  This time he will be state side and by MY side Praise the Lord.  What should I expect from this type of fusion?  Thanks for listening.  

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