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Help in Considering ACDF for C3-C7 (5 levels)?

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Unread 05-31-2008, 01:50 PM   #1
carolyncaswell
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Question Help in Considering ACDF for C3-C7 (5 levels)?

Hi,
I'm new to message boards and would greatly appreciate feedback from anyone who has had or knows of someone who has had ACDF surgery in five levels (C3-C7) using cadaver bone pieces. Two spinal surgeons recommended it after seeing my MRIs and Myelogram. Apparently, I have stenosis (little spinal fluid) and risk paralysis if I fall or get in an accident and I have spondylosis. I am in my early 60s and have always been told that I look like I'm in my 40s. One surgeon even said you can never tell what's going on in your insides from looking at you. I have moderate pain in my left arm, neck, and back, especially when I ride in the car; the pain started after foot surgery when I had to walk at an odd angle and after catching a falling ladder. The pain is better now and I can live with it, but my husband says that I should have the surgery. It seems that the surgery will limit considerably my mobility and might stress other vertabrae, along with the other risks of causing other chronic pain. The surgeon said that he does about 100 single-level ACDF operations a year and about 4-5 five-level ones like I need. He also said that he saw no other option. Has anyone had five levels done and if so what was recovery like and how are you now?
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Unread 06-02-2008, 04:10 PM   #2
Shirl
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Talking Hi carolyncaswell

Hi and welcome carolyncaswell ~

You will not find very many with this many cervical levels done but I am one of them. I I have had a total of 3 cervical surgeries done. Two were anterior with hardware plate and screws and the last was posterior with hardware (rods and screws). I am fused from C3-C7. I still have problems at C1-2 which I am seeing my Neurosurgeon and a headache specialist for.

If you want to talk more please let me know. I know just how you must be feeling right about now.

I am also fused from L3-S1.

Shirl
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Unread 06-09-2008, 10:23 PM   #3
dclair
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Originally Posted by Shirl View Post
Hi and welcome carolyncaswell ~

You will not find very many with this many cervical levels done but I am one of them. I I have had a total of 3 cervical surgeries done. Two were anterior with hardware plate and screws and the last was posterior with hardware (rods and screws). I am fused from C3-C7. I still have problems at C1-2 which I am seeing my Neurosurgeon and a headache specialist for.

If you want to talk more please let me know. I know just how you must be feeling right about now.

I am also fused from L3-S1.

Shirl
Hi Shirl:

I would love to email privately to you when you have the time. I have a 3 level acdf with new concerns. Please email me when you have the time.
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Unread 06-13-2008, 08:15 AM   #4
Bobbi
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dclair, for Shirl to be able to contact you via e-mail, you'll need to make sure that it's an option you've set in your member CP (Control Panel). I just took a quick look, and maybe I missed it, but didn't see that that option is set.
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Unread 06-13-2008, 03:05 PM   #5
aussiemom
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Quote:
Originally Posted by carolyncaswell View Post
Hi,
I'm new to message boards and would greatly appreciate feedback from anyone who has had or knows of someone who has had ACDF surgery in five levels (C3-C7) using cadaver bone pieces. Two spinal surgeons recommended it after seeing my MRIs and Myelogram. Apparently, I have stenosis (little spinal fluid) and risk paralysis if I fall or get in an accident and I have spondylosis. I am in my early 60s and have always been told that I look like I'm in my 40s. One surgeon even said you can never tell what's going on in your insides from looking at you. I have moderate pain in my left arm, neck, and back, especially when I ride in the car; the pain started after foot surgery when I had to walk at an odd angle and after catching a falling ladder. The pain is better now and I can live with it, but my husband says that I should have the surgery. It seems that the surgery will limit considerably my mobility and might stress other vertabrae, along with the other risks of causing other chronic pain. The surgeon said that he does about 100 single-level ACDF operations a year and about 4-5 five-level ones like I need. He also said that he saw no other option. Has anyone had five levels done and if so what was recovery like and how are you now?
Hi
I may be a little late with this reply. I had C3,4,5,6 fused 2 years ago. With a small piece of cadavar bone. I won't lie to you, the surgery was not fun. I wore a J collar for about 3 weeks at all times. Could not drive for 6 weeks. Had some problems swallowing for about a week, lost 8 #s in hospital. I have pretty good mobility in my neck now, most people can't believe its fused. I only have trouble looking down at my toes. The MRI of my neck looks like a bicycle chain!

I have arthritis in my shoulders, and the lami I had before fusion was a disaster. About a year after the fusion I developed pain in the scapular area. The docs say, because the cervical area is stabalized, I have developed scoloisis, and kyphosis. When everything flares, I am one hurting puppy. I also have thorasic DDD, and lumbar issues.

Would I do it again? Yes. You've heard the saying "if it aint broke, don't fix it? It was broke, I wanted it fixed.[/size]
Barb
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Unread 07-15-2008, 02:30 PM   #6
Herman
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Hi. I'm new too. After C3-C7 ACDF on 5/30 I am ready to talk about it. What I have noticed after being on so many boards reading for the past six weeks is everyone is different so it makes it very hard to compare. My advice is do your research, go in with your eyes wide open to the recovery and the complications. I am a very healthy, active 50 year old female and to put it mildly this surgery has knocked me on my ... I am finally feeling somewhat human and getting stonger each day. The good news is that all of my symptoms, pain and headaches in my neck and left side are almost gone. However, be aware of the other complications in swallowing and talking. Research dyphasia and dysphonia complications post-op. There are big risks, albiet not life-threatening nor permanent, but it has been a challenge to say the least. I've been told I'm an extreme case with complications resulting in two weeks of hospitalization and still off of work due these, but I know in the long run the surgery will be worth it. I was to the point of not being myself, in pain everyday and had to make the decision to go through it. Good news - now walking 2 - 3 miles per day and beginning to be social again - doctors orders!! Can't wait to scream, yell and be obnixous again. Best of luck with your decision. Sounds like you have a great support with your husband. I did too - that makes a big difference too.
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Unread 08-05-2008, 10:39 AM   #7
dandrus
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Quote:
Originally Posted by Shirl View Post
Hi and welcome carolyncaswell ~

You will not find very many with this many cervical levels done but I am one of them. I I have had a total of 3 cervical surgeries done. Two were anterior with hardware plate and screws and the last was posterior with hardware (rods and screws). I am fused from C3-C7. I still have problems at C1-2 which I am seeing my Neurosurgeon and a headache specialist for.

If you want to talk more please let me know. I know just how you must be feeling right about now.

I am also fused from L3-S1.

Shirl
Hello, new member/ longtime visitor,
I had cervical fusion (c4/6) in '04 by Dr. Ian Sabin in the UK. Complete success, in my mind UNTIL my neurosurgion here in NC, Dr. Bullard, suggests that my hardware appears loose/instable and 1 level above AND below are at the stage of needing stablized, as well. Bullard did my Transacral lumbar fusion in '07, so I feel comfortable with his skills and judgement, but I just had a SIXTH surgery on my shoulder LAST WEEK and am just overwhelmed with this news!! I just need to vent and get any comments. Also, to find out how YOU are doing after this post 2 years ago...Thanks again
dan
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Unread 08-05-2008, 11:28 AM   #8
dandrus
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Default A helping spouse by your side??

I am VERY glad to read about both of you having the support of your spouses. Imagine how hard it is on them! I have read many times that chronic pain, etc. is a common cause for marital problems. I CAN well imagine it would be and would test a person's patience, as well as a partner's love (or at least, compassion).
Well, NOW imagine being inside the body and mind of a man who is now having to undergo his 16th surgery (neck, back, open heart, shoulder(6)), six months after his divorce, which was due in most part, from chronic pain, multiple (&varied) surgeries, pain meds,!
An attorney's mind set is something of a "factual", black/white thought proccess. "If there isn't blood, how does it hurt?", "Everyone's back looks bad on an MRI!", "Maybe you are addicted to surgeries???"!
Yeah, that was my WIFE...
...the worst part about it is, MY GUILT!!! And my 5 & 7 year olds!
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Unread 08-05-2008, 05:17 PM   #9
Jetty
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Book Multiple spinal fusion considerations

Hi, there,

I just finished reading about several people who have had multiple spinal fusions and am in that category. There are quite a few who have had it done--and I wonder the reason that it occurs in some of them. I am "hyperelastic"--having something called Ehlers-Danlos Syndrome---have "snapping hip syndrome" and as a little girl my dad , teasingly, said he was going to sell me to the circus (could put legs up behind head, a leg up to rib cages, sublux my elbow joints, etc.)When I was young, little was known of the syndrome, which in certain "types" can involve internal organs, thankfully not me. Now, many physicians will counsel a difficult cast NOT to have children if a female and that I can see--- as the birth, while usually easier than the normal female is easy-- what one goes through later due to the stretch of ligaments, muscles and tendons, can cause problems later on. As of now I have had 14 spine surgeries (12 spinal fusions, 2 laminectomies) and am facing another one Sept. 3, which will re-fuse L4-5 and also fuse both sacroiliac joints in one procedure.

One thing that I will say, early on: one has to come to the conclusion on one's own. In other words: YOU have to make the decision and no one else. It is you who has to decide that if it doesn't help you that much, you have lost nothing but time, possibly. If the doctor can honestly say to you that he will not make you worse but MAY make you better, that is about the best once can expect from a surgeon and that may be what is enough for you to hear to go ahead and have it done.

My "Big Kahuna" surgery was in 2000 where 5 former fusions were removed (drilled out) as they were in bad shape, and those final 5 levels had laminectomies, plus two levels above all that, in the thoracic area (L10-11 and L11-12) were given laminectomies, Then, the surgeon put in 14 cadaver bone blocks, 14 pedicle screws and 2 long titanium rods and fastened well. The procedure was 10 mins under 12 hours and my 2 incisions (one in front and around to back) measured close to 23". It was done 600 mi from home and in 11 days I flew home. I don't remember much other than pain for about 2 weeks. At 6 mos I felt slightly better than I did prior to surgery and it took about 18 mos to say that I truly was better off. I lost one thing that was hard to handle and that was the ability to bend at the waist--which means a person better have good knees! But, I learned how to get around it!

I''m writing this to explain again that is up to you how much it is disturbing your life. If it is really changing your lifestyle, then maybe you had better go ahead. If you think you can alter your lifestyle to accomodate what you're going through , then that is your answer. It is a very personal thing. Your spouse has a part in it as well. Mine was with me in my decisions, which helps tremendously.

I've now gone 8 years since what I thought would be my last spine surgery. I'm facing it again (the ones above were all singles, except for the last one). This surgery will take 3-4 hours and I 'm assured I will feel much better so I am taking that risk. It is up to you all to decide what your risk factor is--and go for it. Some truisms: you are not alone. Only you can make it work and follow your physicians orders. You must take it on as an adventure--and you MUST keep your sense of humor--or you're "toast!" Best of luck!
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Unread 08-05-2008, 06:42 PM   #10
Jetty
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Default Carolyn, I have good news for you!

Hi, Carolyn,

First of all, I am new, and If I've done something incorrect, please let me know. I don't' wish to offend anyone. (I hit "Reply" and in the box was someone else's note to you and I didn't know how to find another.)

I'm sorry for your problems and can totally comisserate with you. I will try to tell you quickly (leave out some things) to tell you I had my first cervical fusion in 1976 I was 42. The level was C4-5 and like the lumbar area, one that is apt to cause a problem. I have EDS (Im hyperelastic) and the Univ. Dr. decided to treat me conservatively--altho there were others who felt more than one level should be done. I had to wear a brace 24/7 (metal) --wore a leaf bag over it to wash my hair in a shower. Quite an experience--for 4 mos! It was removed and within 6 mos. I was aware I wasn't much better and at the 9 mos mark I was miserable. At the 1 yr mark the same U. surgeon did the one above it. Same story. The after the 2nd one, 9 mos later I was back to see him and scheduled at the 1 yr mark for the next. UNFORTUNATELY the ,man didn't count right and 9 mos later I was back, wondering what was wrong. He was sending me to his friend in MOntreal with all my records when we noticed he MISSED that disc space, so cancelled the trip and went back, and he redid it. (I wanted to go somwhere else, but some thought I should go to him as he used a lock-type curved bone to fuse. It was not nice to go, but I did. Alas, after about 9 mos I was aware I was not better AGAIN and NOW we went to a Toronto surgeon who told me I had a "non-union" and it needed to be redone! So I 'girded my loins; and did it AGAIN! i was STILL having problems in the next year and went back to my home town where I met a Canadian born ortho. and an excellent neurosurgeon who "stuck their necks out" and did a controversial surgery----attaching my last one (C-7 ) to T-1 --the 1st thoracic vertebrae and put me in a halo brace--not the nicest thing, but i was determined to get better. At the 4 mo mark they put me in a Rheum. Arthritis prototype brace (called it my "ironing board" for 8 mos and after I was in p. therapy close to 1 year. NOW the story gets really GOOD. Once the therapist gave me tools to get thru the day, help me to relax, when to stretch, and when to do strengthening PT (he only believed in isotonic PT----things done with tubes or Therabands.) I am PLEASED to tell you I went TWENTY YEARS with not ONE ache in my neck or arms. ( Used do have arms turn white as blood supply and nerves pinched under armpit.) I was ecstatic! Now , I have had many lumbar problems but MY CERVICAL PROBLEMS WERE GONE. I am now 74 and need a lumbar one redone and my sacrolilac joints fused. I'm up to 14 surgeries--but it has only been in the past year that my neck bothers me on occasion. What I do is use a Thermophore heating pad (made in Battle Creek, MI) which takes moisture from the air---and it works! I lay down for 20 mins 3 times a day if a problem and he next day I"m fine. I also use a new cervical pillow made with Tempurpedic -like material but the size of a reg. pillow that has a "nest" where the head is cradled and I"m so pleased I can't tell you how much. I've had it 2 mos and it has cut down my discomfort by about 80%. I 've been told that 2 of my fusions have thinned---and there may come a day where they'll need to be done---but it will not bother me, I"m sure. Plastic braces are used now (thank heaven) or just collars. I know it won't be a difficult thing like my last surgery and recovery--so I really feel I am a true "success story." I want you to know that one can't ensure a total success,but there is the possibility of a total success that I had. I thought I'd let you know so that you know it can happen. NOW, it is up to you to try for that goal. If you wish to know anything, remember who I am, okay? I don't know how much more I can tell you, but I'm willing to write you again. Good luck!
Cheers!
Jetty
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