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Newbie and very scared

azzie21aazzie21 Posts: 30
edited 06/11/2012 - 7:25 AM in Neck Pain: Cervical
Hi,

I had a ACDF on C4-C5 in March 2005. My diagnosis was severe spinal cord compression and my symptoms were pretty bad. Not only was I numb from the hands up to my elbows, but I was terribly off balance and falling down all the time. After this surgery I regained the feeling in my hands and arms, my balance was much better and I thought that was that.

Unfortunately, my balance started to once again deteriorate last year - I didn't go to my Dr. at the time, as my husband of 44 years was dying of cancer. He passed away May 7, 2008.

It took me awhile, but I finally made an appt. for my spinal problems in Oct. I was referred to the neurologist who referred me to the neurosurgeon.

I'm very concerned as the neurosurgeon says that a posterior laminectomy from C3-C7 fusion with my own bone and cadaver bone needs to be done. She also told me that I would have "significant loss of range of motion moving my head from side to side and also up and down".

I am going to have a phone appt. with her Tuesday at 9:a.m. (PST) as I have many questions. When I was at her office I was so shocked, that I simply didn't comprehend everything she told me.

The MRI basically explains that my cervical spine has worsened since 2005. The MRI says "C3-C4 disc is suspected to have developed at least moderately severe degenerative disc height loss since 3-28-05".

The MRI goes on listing C5-C7 - mainly stenosis has increased, development of a posterior disc-osteophyte complex.(Whatever that is - I "Googled it, but didn't find any real answers).

I would like to know if anyone has had their neck fused and have you had this many disc's fused? What is your range of motion???????? That is my biggest concern - will I never be able to move my head side to side? How will I be able to drive?

I would appreciate any and all replies to help me understand a bit more as to why my doctor thinks I have to be fused, and if so, is the range of motion permanent?

Sorry if I made a mess of this post. My mind simply cannot wrap around this right now.

Thanks,
Azzie21
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1

Comments

  • Welcome to S~H :H

    You are not alone.Though I have not had surgery on my spine(yet)I can understand some of your fears and we are here to support you.Others will have better answers for you as far as the surgery and ROM issues,and can tell you their experiences~but I saw this here and felt your fear and wanted to say welcome.

    I'm very sorry for your loss.I wish that I could reach out and hug you.I lost my mother July 8th,08,and can understand why you put off your own issues during a time like that,as my mom died from cancer and I put off Drs appts as well.Totally different scenarios,but simalarities as well.

    I do know that many people have had surgery here on S~H and all have different examples with issues and success stories.

    PS~Your post was very good and informative.
  • Thank you so much Robin for replying. I do hope that I get some responses from people who have had this surgery - I just need to find out how they are doing and if the range of motion ever gets better.

    I'm very sorry for your loss. My mom is still here and she will be 91 years YOUNG December 5th! We lost my dad 15 years ago to prostate cancer :( Losing a parent is terribly difficult.

    Yes, I did put off everything during Harley's (hubby) illness. He fought esophageal cancer for 18 months - and 8 of those months he was successful :) So during that time we took advantage of every second and we traveled, remodeled our home, and lots of other things. I'm very grateful that we had that very special time together before he became very ill.

    Needless to say, it's very difficult for me handling my own physical problems without Harley by my side; but I will manage! I have wonderful friends and relatives and a beautiful and loving son, daughter-in-law, and a 4 1/2 year old grandson. They all keep me busy :)

    Gentle hugs,
    Azzie
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  • I only had a single level fusion, and very glad I did. Statistically, about 25% of patients with an ACDF need to have a second (or more) fusions above and below the original space within 10 years. Maybe they'll work the kinks out of the ADR by they time I may need another fusion.

    A friend of mine has had his entire cervical spine fused (C1-C7) as well as 5 levels in his lumbar spine. He gets around just fine...can still drive, ride horse, camping, work, etc. He obviously has lost some ROM, but it's not like he's a stick man. I'm sure you will find many people on this board who have had multiple level fusions and will be able to help ease your mind.

    Good Luck!!
  • Just wanted to let you know that my rom is not bad at all and I am fused C4-C7. I have 2 plates, 2 rods and 12 screws. I do notice that my chin does not go down very far but as for looking side to side I really do no notice anything. My surgey will be 2 years old this February and it was a revision done posterior which was a big ouch. Lot of nerves and muscle they have to cut through.

    Sharon
  • Ime sorry for your loss of your lifemate. please, dont be afraid to lean on us when you need to, dont be shy on posting K? Ive never had any real surgery done(dang insurance) but I am looking up to a brave person!
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

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  • i am so sorry to hear of your loss of harley after 44 yrs. of marriage. i will say a special prayer for him. and on top of your loss you are looking at a surgery, i wish i could make things better for u, but i know that young grandson can bring a smile to your heart. after my surgery, my ns told my that my rom would be poor and he was right. the good news is after about 4 or 5 months, he released me to drive, which gave me back some independence back. i started off realy slow with my wife going along and just going to the nearby grocery store. i would plan ahead how i would park in the lot so it was easy for me to leave without trying to turn my whole body around. i would also only turn right coming out of the parking lots even if i wanted to go left to go home. i would then make a left hand turn into another parking lot and come out of that parking lot and turn right again to go home. when my wife is not with me now i do this same procedure, because its hard forme to turn my body left then right then left again to turn left out of a parking lot. asyou know with traffic sometimes u have to repeat this many times, that is why i only turn right out of a parking lot. i hope this makes sence to u? i use my mirrors all the time also. it isnt easy but its something i have adjusted to along with other things. i hope this can help answer your question and not scare u about the surgery u are to have. if u have more questions, just pm me. good luck and i will pray for u.
  • Hi Sharon,

    Thanks for sharing your story with me. It helped me a great deal, especially the range of motion you still have.

    I had a phone appt. today with the neurosurgeon and she told me that I would only have about 30% range of motion after the surgery! I would have to bend mostly from the waist and use my knees a lot more. Not a good option, as I have already had a total knee replacement on my left knee (2004) and I'm looking at a TKR on my right knee sometime next year.

    She wouldn't say anything regarding a wheelchair (I asked her that if I didn't have the surgery, could that mean that a wheelchair could be in my future). She just said that each person is different - so no real answers there. I did ask her to refer me to another neurosurgeon for a second opinion (and she was fine with that). So the Sacramento Kaiser has a neurosurgeon and she will contact them to set up an appt. with me.

    I guess I feel somewhat better - at least I know that the surgery is not "critical" at this time. Unlike my first cervical spine surgery in 2005, where I had no options - I was TOLD I had to have that surgery or risk being a paraplegic. My prior neurosurgeon was wonderful and I wish so much that he had not retired! I know he would have been more upfront with me on how he felt if this surgery is totally necessary or not. Anyway, I'm glad that I'm getting a second opinion.

    Thank you again for your reply.

    Hugs,
    Azzie
  • Hi Rivertime,

    Thanks so much for your reply. I'm amazed that your friend who had his whole cervical spine fused is able to get around so well! Especially to be able to ride horses! (I've had horses, plus I still ride some - so I was very happy to read that). Also, the camping - that takes a good amount of upper body strength. I imagine your friend is in very good shape.

    I am not in great shape, but not horrible either. I do have fibromyalgia, have had 1 total knee replacement (left knee - 2004) and will probably have to have the right knee replaced next year. My mom's side of the family had arthritis - my grandfather had rheumatoid arthritis - the rest of us have osteoarthritis; painful but not necessarily crippling.

    When I had the fusion in 2005 of C4-C5, I did very well with that. And it was an anterior fusion. This fusion (if I have it done) will be posterior, so much more involved regarding cutting muscles, etc. I was already told by the neuro that it was a very painful surgery. GREAT!

    I am getting a second opinion; I have to have more input before I subject my body to this surgery. My neuro said it is NOT CRITICAL at this time to have the surgery, but she is recommending the surgery to prevent further deterioration to the cervical spine. She also told me that if my symptoms worsen, then it's time to seriously think about having the surgery (my balance is already bad, but I'm not falling like I did in 2005). I have lots of pain in my neck, shoulders and arms, but then again, we don't know if it's all from my spine issues. It could also be from fibromyalgia. Aghhhhhhhhhhhh!

    And yes, reading the replies to my post, I am pleased to read that many people still have quite a bit of ROM.

    Thank you again for taking the time to reply. I really, really needed to read that about your friend. Good for him!

    Hugs,
    Azzie
  • Thank you Sharon for sharing that with me. I had a phone appt. this morning with the neurosurgeon and she told me that my range of motion would be limited to about 30% moving my head from side to side. I asked her if it would get better with time and with PT but she said it would be permanent! With all the hardware, etc. that would be in my neck, it would be impossible to regain ROM. :(

    I am going to get a second opinion regarding this surgery. My neuro was 100% for me getting the 2nd opinion, so that was not a problem. She said that she can do a fusion of C3-C4 and C5-C6, but that I probably would be back in for surgery again at a later time.

    I was told that if my symptoms stayed the same (if I don't start falling down, start getting numb in my fingers, hands, etc.) that I could go for awhile without the surgery. But I know how critical it was for me in 2005 to have the first surgery. My neurologist at the time (he is now retired, darn it!) told me I had to have the surgery or I would end up being a paraplegic. I had severe myelopathy and he stressed how dangerous it was for me to even walk around! He did surgery within the week after he saw me.

    Reading some of the responses, some people (like you) have had very good results with your ROM. Others have not had such luck. I don't want another surgery, but I don't want it to get to the point where it was last time either. I'm looking forward to getting a second opinion - that should help me decide what to do.

    In the meantime, I take my pain pills, and use moist heat on my neck and shoulders. I do walk about 1 mile every day in the hills above where I live (I live in Northern CA). I walk with my dog Sasha, and I use a walking stick on these walks.

    Gentle hugs,
    Azzie
  • Hi Ranchhand,

    Thank you for your kind reply. It's been 6 months since Harley passed away, and the holiday's only make it more difficult. But I have a wonderful and loving family and amazing friends. If I do have the surgery, I know that will be the hardest thing that I will have to go through - not having Harley by my side while recuperating.

    You said that you have never had surgery - is that because you do not have insurance???????? Or that your insurance won't cover you for certain types of procedures? If either one is the case, I will certainly keep you in my prayers that medical assistance will somehow reach you soon.

    Gentle hugs,
    Azzie
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