Newbie to the site: ACDF 2012 & 2013

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Jazzy_girl
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/23/2018 3:22 PM (GMT -6)   
Hi All,
My name is Shelley and this is my very first post here. I had a fall on ice in 09 and it totally changed my life! I've had 5 surgeries and too many procedures to count and I went deaf in one ear! I had two ACDFs because after the first plate on c3/4 surgery I fell again. The plate became twisted and I ended up having a 3 level ACDF c4-7. Now its been about 4-5 yrs post op and I'm having some pretty bad issues with the discs again. The one above c3 os herniated and c4 is protuding forward into mu spinal cord. The disc below is bulging and so is T8/9. I feel like I need a new spine!

The pain is so awful and I try to get the best out of life that I can but some days thays next to impossible! I am also a registered nurse and have not been able to work since about 2012. I always thought I would love being off work and not work so many crazy hours but honestly I wish I could go back to work now.

I was told by the neurologist/anesthesiologist I see that it is common that people with spine surgery like mine, that 3-5 yrs post op they begin having issues. He said its because of the pressure the plate puts on the disc above and below. I never imagined it to be this serious tho!! I found this place because a friend of mine suggested it to me.

I'd like to possibly talk with some of you with similar issues. This looks like a great site to be a part of!!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 2/24/2018 8:20 AM (GMT -6)   
Good morning Shelley & welcome to the forum. You have had a lot of work done on your neck without a doubt. I am guessing that the discs above & below your fusions were somewhat compromised before the surgeries, but not bad enough to warrant surgery at the time. It can really put the patient in a catch 22 situation. Sometimes they ended up with another surgery or they don't. You were not given much of a time window by the neurologist. Generally, I see a lot of folks being told somewhere around the 10 year mark, they made need to do something else.

Oh, I think those of us that had to stop working would give anything to rewind that clock & go back to what we once were. I remember taking a week vacation & saying, oh if I could just take one more week. But, when you are dealing with chronic health issues daily & being home all the time puts a completely different spin on things, It is not like being home & jumping up & doing anything you want to do, lol. All we can do is stay as busy as we can within our limits.

I don't know, but if this were me personally, I would look for myself a consult only with a board certified, fellowship trained neurosurgeon. Boy, that is a mouthful. Sometimes having a new set of eyes take a good look at the overall situation can be beneficial. Any time surgery is a potential we always want the very best we can find. My son was referred to one a few years back & we was most impressed. There is a really good chance he is going to need surgery at some point & this will be the dr he uses. I have seen surgeries by some of the top neurosurgeons in my area & hands down this guy would be the one to use.

The forum is not as busy as it once was. I like to think that members got better & are living their lives on a better level than they were earlier. It seems like the folks needing spine surgery sort of comes in waves. We may get several needing neck surgery & then we get a few needing back surgery. Some of our long term members do check the forum & offer support to others.

Please keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Abilene
Veteran Member


Date Joined Apr 2014
Total Posts : 978
   Posted 2/24/2018 8:51 AM (GMT -6)   
Hello!

I've had some of what you are talking about but very different situations-no falls, just age probably. My own story is on this site with a title just like in my signature.

We've had many from the health field here. Are any of your issues related to workman's comp? I really hope not for you, that seems to make it all more difficult. I'm sure you would rather be working hard than having this pain.

Read the Chronic Pain 101 at the top of the list, scroll down to 9/14 to see information written by and for us. See if there is anything of interest to you there.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea-update-it's gone after a 25 lb weight loss; Total Knee Replacement 2012 and 2017.
Thankful for my husband of over 40 years

Jazzy_girl
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/24/2018 10:23 AM (GMT -6)   
Thank you both very much for the respones and support! I actually did find a really great surgeon and neurologist recently. The place I was going to was awful!!! The Dr told me that the pain was all in my head and basically made a joke out of what I was telling him. When I found the new team they have been so fully supportive!! I've gotten some injections with sedation at this place. The other place did two without sedation and it was horrible and painful. The new place does all their procedures under sedation as a choice of course. Now I barely remember anything.

I've gotten my nerves burned on the left and the right and that has helped alot!! It took the deep nerve pain away. But now with the new issues in so frustrated because I think this is going to be a life time struggle for me. I'm not sure what they can do about a protruding bone c4 into the spinal cord. Maybe just monitor. Idk. Anyway its nice to be here. I'll be sticking around for awhile.

Jazzy_girl
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/24/2018 10:32 AM (GMT -6)   
Oh I wanted to say that the disc above and below the plate were great!! I believe its the plate that puts alot of wear and tear on those discs at an accelerate rate. I had a sever c4-5 that was herniated pretty bad into my spinal cord. They said I looked paralyzed on the MRI so I'm very fortunate!! That plate failed and ended up getting twisted. So the surgeon did all the bulging discs a year later. C4-c7. C3 and t1 looked perfect at that time. Its just a domino effect when the spine is compromised at all sad

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 2/24/2018 11:42 PM (GMT -6)   
Hi Shelley Welcome to HealingWell Chronic Pain Forum! I can definitely empathize with you and everything your going through! It's just not the brackets and hardware that puts stress on the other discs above and below a fusion, its the fusion its self, as the vertebra are fused together and that flexion joint is gone and the discs above and below that fusion take more stress! My first ACDF was at C6/7 and much like yours at C4/5 Mine was severely pressing into my spinal cord and and disc fragments broke off and were lodged in the spinal canal, they couldn't understand why I wasn't a quadrieplegic! Anyway with that fusion at that time they didn't use any brackets or screws or donor cadaver bone for the graft. They took the graft bone from my pelvis and I had to wear a cervical collar for 4 or 5 months and had to be extremely careful and couldn't work for over 6 weeks afterwards. Anyway according to my surgeon I was extremely lucky as it was 25 years later that the disc above that fusion went bad and I had to have another ACDF at C5/6. That time they used cadaver donor bone and brackets and screws and it was a much faster recovery!

Herniated Thoracic discs ended my nursing career and put me on disability! So I understand what your going through. After those Anterior Disc Fusions I've also a posterior fusion with rods and pins at C3/4 and Foraminotomy at L2 through L5. The the herniated Thoracic disc they wouldn't touch so put me on disability and pain management.

The folks on this site really helped me get through some very difficult times, several back/neck surgeries and even a total right knee replacement!There are some really caring and compassionate folks on this forum! So Welcome aboard!

Anything we do to help you through this difficult time, just let us know!

I wish you well!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

Jazzy_girl
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/25/2018 4:53 AM (GMT -6)   
Hi White
Its nice to be here. I agree its not only the hardware that causes the other discs to be compromised. I'm know that that the fusion, wear and tear of the entire fusion and age are all factors in the compromised state of the other discs also. Its sad to lose a great career over this. I worked in the ICU and was a cardiac nurse. I also did some private duty and agency work on the side. I became a RN in 97 and fell in 09. I didn't get my disability until about 2016. I was fortunate enough that they back dated to 2012.
I was able to get a beautiful home on some land with the money and feel very fortunate that way. I started doing research on making my own pain cream. Which I've found works pretty well. I normally loved being a really active person but now I'm not able to do a real lot of anything because I am having problems with my hips. I have a tear in the labrum, which is the lining of hip joint. I've been putting off surgery because i cant afford more medical bills at this time.

I guess the hardest thing for me is being at home alot. I dont get out alot because doing just about anything makes the pain worse and its hard to enjoy anything when the pains bad. It pretty much controls my life and gets frustrating. I see that you have a pain pump. How os that working for you? Does that help? I'm on a fentanyl patch and it does help so I can do some DIY things. Sounds like we have some things in common. What do u do with your time?

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 2/25/2018 6:40 PM (GMT -6)   
Hi Shelley, I was on OxyContin 40mg every 8 hours for many years, but when I moved it was difficult if not impossible to continue with my pain current management, (in the state I currently live in it is near impossible to find doctors that would prescribe the pain meds I was on) so I was making a 300 mile trip ( one way) every month back to my original pain management doctor I Illinois. During the winter is was often extremely difficult to make that trip, especially if the weather was really bad. So after talking with my pain management doctor about other possible options, he referred me to the University of Indiana Pain Clinic in Indianapolis for a consult to get a implanted pain pump. I got it implanted in June of 2014, and it has worked very well for me! It only covers a limited area, mine is in the lower back and it gives me very good relief and control over my lower back and sciatica pain, (which is my most bothersome and debilitating pain) but does nothing for pain caused by my thoracic or cervical spine. Anyway I go up to Indy and get my pump refilled and reprogrammed every six months. So far this has been a real Godsend for me, and I am completely off all oral pain meds. I do take Baclofen 30mg every 8 hours to control muscle spasms and that also helps control my pain!

As for what I do with my time, well I learned the hard way, what one shouldn't do, It's very easy when your in pain and can't work, or go out and do the stuff you used to do, to isolate ones self! That's a big huge mistake! Admittedly allot of people (family and friends, and maybe even spouses)often cannot relate to your pain! At least wise, unless your constantly wincing or crying all the time or other wise, outwardly showing you pain! I can't begin to tell you the number of times I've heard this said: ( ""you look fine to me! or You don't look or act like you're in pain!"") Well what does pain look like? Anyway family and friends that don't understand often go by the way side, and one becomes even more isolated! My advice is keep your friends and family close, and force yourself to do stuff and participate in doing activities with family and friends even when your not really up to it! Try not to let your pain define you! It took me a long time to realize that! Allot of people on this forum, ( past and present) helped me get through some very trying times during this change in my life!. Just realizing I wasn't alone and as bad as things might be or seem for me, there is always someone who has it allot worse! And that puts things into perspective! Shelley I worked on an Oncology Unit and when I look back and remember what allot of my patients went through and how bad they had it,......well...... my situation is nothing compared to most of theirs!

Anyway the things I do, well I have a couple of raised garden plots, and I tend my garden, and I am getting back into doing some drawing and wood sculpture. Through my church I help make deserts and help serve at my local open Hands Pantry, serving supper once a month. And I have a dog that keeps me busy too! Ha. Allot of times I over do it, and yes I "" pay the piper!"" when I do! But although my life has changed and I still dearly miss doing Nursing, I persevere and continue living my life the best I can!

I've been on this forum for quite a while now, and allot of my posts explains things that I have found helpful in relieving my pain over the years. And I have found just helping others on this forums, helps me too! I do wish you all the best!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 2/26/2018 9:29 AM (GMT -6)   
Shelley, I too went the pain pump route back in 05. It made a big difference too. It is important to have a good dr that understands pumps & the meds used in them. I always say a pain pump is only as good as the dr maintaining it.

I became disabled in 04, for a number of medical issues, stemming from crohns disease & a few other conditions. It was a struggle because I was young & that was not how I ever thought my life would be. I do not like the word disabled, I just say I am limited, lol. I ended up getting some professional help. I was referred to a fantastic psychologist. She was such a tremendous help to me. Having such a dramatic change like that in a persons life can be debilitating on top of the health issues. It is a bitter pill to swallow.

Like WhiteBeard said, we all do things we realize we shouldn't have, lol. I think that is just human nature. I stay as busy as I can & work at not isolating myself as I once did. I am the chauffeur to my grandson, lol. A few days a week I take him to & from school & keep him until his dad gets off work. I also keep him during the summer or school holidays. He has been my best medicine ever. I tend to some flowers here at the house during the growing season. I pace myself with any activity. I remind myself daily there are others a whole lot worse off than I am. I read a lot in the various forums here at HW, it helps keep my perspective.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Jazzy_girl
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/26/2018 11:15 AM (GMT -6)   
Thanks both of you! I think I'm having a bit of cabin fever and wishing the warm weather was here. I also have a raised garden bed and another 4x16ft bed for veggies in the growing season. I love love love gardening!! You both are absolutely right! I have to get out more and join in. I have been isolating myself. Its so difficult to have fun or do much when I'm hurting tho. I do get out with my husband once in awhile but mostly in at home doing DIY stuff. I mix vape juice and make pain balm. I like to paint but I haven't been able to since my fall.
I guess I have to figure out what I really want out of life. Its just not what I was thinking. Thank you both!!
I know from nursing too that alot of other ppl have it so much worse than me!! I have to think about that stuff.
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