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    Old 09-26-2011, 04:26 PM   #1
    ariz4me
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    C3 - T1 Surgery Questions

    Hi,
    I am a 54 year old relatively healthy woman who has had 2 surgical opinions at prominent hospitals in Phila. One opinion came from a neuosurgeon who said my neck was so bad that he couldn't fix it all. The other was from an orthopedic cervical spine surgeon who is rated as one of the top 100 spine surgeons in the USA. He stated that I needed a laminectomy and fusion from the C3 - T1. I have weakness in my left arm that has led to muscle atrophy in my forearm. My right arm is beginning to show signs of weakening. My many MRIs indicated that I have 2 indentations pressing on my spinal cord, spinal stenosis as well as foraminal stenosis. I have also shown my reports to two neurologists. One indicated that I didn't need surgery right away while the most recent neurologist visited concurred with with my orthopedic spine surgeon. In fact, he emphasized that the surgery had to be done in the near future or I risked paralysis. This was the same opinion from the spinal surgeon. I have tried physical therapy, chiropractic work, massage, etc - all to no avail. Needless to say, I have scheduled the surgery for November 7th and I am terrified. The spinal doctor is extremely confident that all will be well. He told me that the operation will last approximately 3 hours and that he will use the bone taken from my vertebrae for the fusion. If he doesn't have enough, he said he would use cadaver bone. I will be in the hospital for 3 days following the surgery. All of this is going to be done from the back. I am so scared about having so many vertebrae done at one time. When I asked him if this was a common problem, he said no but that it was very common to him because patients with this type of problem come to him all the time. He is the chief of the Rothman Institute.
    My question is has anyone had this many vertebrae done at one time? I keep worrying about becoming paralyzed from the operation. I'm also afraid about the recovery period if all goes well. Can someone out there steady my nerves and offer their experiences?

    Thanks so much!
    Last edited by ariz4me; 09-25-2011 at 10:24 PM. Reason: misspelling

     
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    Old 09-26-2011, 05:32 PM   #2
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    Re: C3 - T1 Surgery Questions

    That's a very extensive surgery. I think Jennybyc on this board has something very like it. The biggest thing I would be concerned about with doing that many levels is not paralysis, but simple loss of range-of-motion.

    I would want to know if a different approach to the spinal stenosis - laminoplasty - might work. Or maybe two surgeries... some combination of ACDF's to fix the bad disks that I assume you have, plus foraminotomies to take care of the foraminal stenosis.

    If you don't mind too much taking the time, can you post the radiologist's report from your latest MRI?

     
    Old 09-26-2011, 06:37 PM   #3
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    Re: C3 - T1 Surgery Questions

    I am going for a new MRI tomorrow. I will post results when I receive the report. I do know that he said I have two indentations on the spinal cord as well as the stenosis in the forminal areas. The problem is that things have gotten worse in less than a year. I am anxious to see the extent of things once I have the new MRI. I'll keep you posted.

     
    Old 09-26-2011, 07:45 PM   #4
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    Re: C3 - T1 Surgery Questions

    Thanks and good luck. "Two indentations" is not NECESSARILY that big a deal. Lots of people have bi-level ACDF's done. I guess if one surgeon says he CAN'T fix everything and another wants to do a six-level laminectomy/fusion, there must be a lot more to it than that.

    You should be able to get the radiologist's report as soon as it's done. Hopefully, the radiologist will be very descriptive regarding what he sees.

    Last edited by WebDozer; 09-27-2011 at 06:42 AM.

     
    Old 09-27-2011, 09:27 AM   #5
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    Re: C3 - T1 Surgery Questions

    Hi Ariz4me....I'm Jenny and I'm fused from C3 to T1. My story is a little different but my symptoms were very much the same and I needed that much surgery as well. BTW, I had mine at age 55...now 60.

    I started with a "laminoplasty" where the bone over the back of my spine was re-built to give room for my cord. this is a brand new surgery and not done by too many docs. No fusion is involved but from what I understand, they are now doing some minor fusing with it. I went for it so I would retain my movement. As a result, I didn't need a laminectomy when they fused me.

    However, no one, including me, knew I had previous tears to the ligaments of my neck. And 3 months after the laminoplasty, they tore again and it caused major problems that required that I have the fusion done. Both of mine have been from the back. My recovery from surgery was not smooth but that had to do with other health problems and a new allergy to a drug they used. So I was in for 8 days.

    Recovery was slow for me but that was expected. My neurosurgeon told me that it would take a full 2 years to know how good I'd be. And at 2 years, I was fairly pain free, had almost all of the strength back in my arms and legs and my only real problem was a loss of movement in my neck.

    You will lose about 50% of the movement of your neck. I can't quite get my head over to my shoulders when turning side to side so driving can be a problem but it is easily fixed with an extra wide mirror. I can't put my chin on my chest nor can I look up very easily...have to lean backwards to look up. But every loss is one that can be dealt with fairly easily. I've seen 2 neurologists since and both have told me that if I hadn't told them of the surgery, they would not have known.

    I will be 5 years out from surgery this Christmas and I am quite used to my neck. It feels like a have a rod in my neck...and I do...2 of them and 2 screws in each vertebra. It is not painful at all. The pain comes from the neck muscles not moving and I have recently discovered that swimming relieves those pains. So I now swim frequently.

    Long fusions are not that bad. They use titanium rods that are slightly off the surface and have some flexibility. I stumbled in my garden and then down a hill and fell flat on my face(my face bounced off the ground) and the neck was fine. Amazing to me.

    I think fusions have gotten a bad rap as so many are done by docs who aren't that good at it. The key is a world class doc. I'm going to see my doc in 4 weeks to discuss fusing my low back and I'm thinking of a 360* fusion...where they do it front and back to hold the entire thing together well. It's not the fusion but how well it's done...and from the back with rods is the way to go in my eyes. I don't know of anyone here who has had it done that way who has had problems post-op. It's all the shorter fusions from the front that seen to have trouble.

    You must have a ton of questions and I'll be around if you have any.

    hugs..........Jenny

     
    Old 09-27-2011, 04:57 PM   #6
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    Re: C3 - T1 Surgery Questions

    Thank you Jenny. You are truly an inspiration to me. I am just so frightened by all of this but I knew my neck problems were extensive. My mother and my brother both have severe neck issues. However, they do not have the weakness or the atrophy that I have so for them, they can continue to deal with what they have without surgery.

    I am going to visit Jefferson's Rothman Institute on October 20th to be fitted with the neck brace and for all the pre op. testing. The doc told me that I will be in this collar for 6 weeks and then 2 more weeks in a soft collar. My doc is Todd Albert who I heard was one of the leading spinal docs in the country. I am so terrified of being under anesthesia for 3 hours and after that the pain! Of course I am reliving how this is all going to go in my mind and it's always the worst scenario.

    Can you tell me what to expect post op.? When were you able to feel as if you were somewhat of a human being again? Did you have to undergo physical therapy?

    Sorry for so many questions, but you are such a god send!

     
    Old 09-28-2011, 08:57 AM   #7
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    Re: C3 - T1 Surgery Questions

    I won't mince words...it hurts. When they go in from the back, they have to cut muscles and that means pain. But in the long run, you have fewer problems than with a fusion from the front of the neck where the plates and screws can interfere with swallowing and speaking. It's going to hurt but they have good pain meds. And that brace will help to keep you still and that helps too.

    You will freak out over the brace...wonder how on earth will I ever sleep in this thing...but you will. In fact, you'll get to like it and won't want to take it off. You don't hurt as much when in it. Once you take it off, you have to strengthen your own muscles again...why you go to a soft collar for a couple of weeks.

    I did do PT after surgery but that was for a different reason than for most. When I tore the ligament in my neck, I broke several bones and had paralysis so I had PT on and off for 2 1/2 years. Got back just about everything. Your doc may order PT so you can get some massage of the neck muscles to speed healing or to get your arm strength back.

    I was up walking 2 days after surgery and when I went home, was walking and could take care of myself despite having my left side not functioning. You should plan not to drive while in the brace as it is my understanding that it is illegal to do so with a hard brace. I did(hubby traveled and I had no option) and you can't turn your head to see traffic coming....so if you can avoid it, don't drive until you are out of the brace. And you usually aren't off pain meds until then either.

    One of the ironies of neck surgery is that you may have more pain once you start to heal. The cut nerves in your back will shout out...Hi....in pain when it heals and re-attaches. So be prepared for more pain when you heal.

    Have lots of easy things to eat at home and I suggest getting in something like Ensure to make sure you get nourishment. You may not feel like eating for a while. The neck is a tight place so you may have some trouble swallowing just from internal swelling so have smoothies or milkshakes available and other soft foods.

    I spent most of my time either in bed or in a recliner to support my head. Sleep is good...do so whenever you want. Helps you heal. I didn't need any kind of special pillow....just had to find the right way to hold my head and brace. Something to grab onto to help you get out of bed is a big help...your head/neck will feel like it weighs a thousand pounds.

    I know this sounds horrible but you are already in the early stages of paralysis and if it goes too far, you never come back. So think of feeling the pain as a sign that your nerves have survived and you aren't paralyzed. Pain is good with these problems. When the pain starts to go away then you are in trouble.....right? So pain returning is good.

    Once you've healed, you'll find you can move your head a lot more and with time, you'll get more and more movement. And the pain goes away. And you get your strength back. And then you finally realize you've dodged a bullet. Depending on where your cord is compressed, you could end up in a wheelchair on a respirator for life....or dead. This is life saving surgery.

    I'm here for you...keep thinking and asking....that is why I'm here.

    hugs.............Jenny

     
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    Old 09-28-2011, 06:38 PM   #8
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    Re: C3 - T1 Surgery Questions

    Thank you so much Jenny. I will definitely be in touch with you. I go on October 20th for my brace fitting and all the pre-op testing. I'm sure once I come home from that experience, I will have more questions. Until then I've just got to deal with the anxiety which makes the neck hurt even more so due to the tension! I'm in a wicked cycle right now and I can't take any Advil or my supplements to deal with it.
    Thanks again!!

     
    Old 10-16-2011, 07:29 PM   #9
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    Re: C3 - T1 Surgery Questions

    Hi,
    I am coming up on 3 weeks before surgery and I am extremely anxious. I go this week for the pre-op testing and brace fitting which is going to freak me out. I also developed a bladder infection and have been on antibiotics for about 3 days now. I went for my MRI and it showed that the degeneration is now into the T2. My surgery is supposed to go to the T1 so I have a call into the doctor about the current results.

    Needless to say, all of this is getting me more anxious. I keep trying to talk myself out of the surgery but I also know that I have to go through with it or suffer the consequences which is possible paralysis. The weakness is in the left arm and is progressing to the right.

    Any words of encouragement are asked at this point. What I am facing is so daunting to me. Thanks,

     
    Old 10-16-2011, 08:36 PM   #10
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    Re: C3 - T1 Surgery Questions

    You wouldn't be "normal" if you were NOT really frightened by the prospects of such a big surgery, but you're going to one of the best institutions in the country and will be in good hands.

    Sometimes you just get to the point where you've done all you can to prepare. You've done some research and have chosen an experienced, well-trained surgeon, etc. Now it's pretty much out of your hands...so you just need to trust in the people you have chosen to work on you...and have faith that things will turn out well.

    A positive attitude is very important when you are facing surgery such as yours, and will carry you far as you heal and recover.

    If you are really worried about the surgery, you might want to look into some of the CDs that are now available, some specifically to prepare the patient for surgery. If you are relaxed going into surgery, it is easier for the medical team...easier for the anesthesiologist to control things; the patient loses less blood, etc. I listened to tapes for a couple weeks before my last surgery and I breezed right through...maybe it was a coincidence...but, who knows?

    Last edited by teteri66; 10-16-2011 at 08:40 PM.

     
    Old 10-17-2011, 06:37 PM   #11
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    Re: C3 - T1 Surgery Questions

    Hi Jenny,

    It's Ann Marie again. I am three weeks out from surgery and a nervous wreck. I'm experiencing pelvic pain so off to the doctor's I go tomorrow for a pelvic exam by my GYN. My family doc did a urine culture and put me on Cipro in case I have an infection brewing. He called today to tell me the culture was negative and that I needed a thorough checkup with my GYN before surgery. My husband seems to think this pain and bladder pressure is all attributed to my nerves. Hopefully I'll get a clean bill of health tomorrow. I can't tell you have nervous I am. I am trying to keep calm but it's just so difficult - even though I have a good doctor and a good hospital (Rothman @ Jefferson). If you could continue to provide me with words of encouragement, I would greatly appreciate it. All my friends are saying I'll be fine but just the thought of surgery and the extensiveness of it is really weighing big time on my mind. Thanks for listening.

    Ann Marie

     
    Old 10-18-2011, 02:49 PM   #12
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    Re: C3 - T1 Surgery Questions

    Hang in there, Ann Marie. I was a total wreck before both of mine. Nerves can give you lots of pain and even bring down your immune system so you do get those little infections like a UTI.

    Treat yourself really well over the next 3 weeks. Eat well and don't worry about calories. Comfort foods and stuff like ice cream...indulge! Do whatever you need to, to make yourself feel good.

    I know you get your neck brace this week....Thursday? Make sure to fill me in on that! They are ugly and you can't imagine how you'll ever sleep in it but you will...and well. You'll come to depend on it.

    Now, I know they are doing this from the back so you will have a scar on you from just above the base of the skull down to about the shoulder blades....6-8 inches. If they didn't tell you, they will be shaving half way up the back of your head.....so get a good haircut prior to surgery. I went nice and short so I didn't look too weird...and that way it didn't get caught in my brace. If you have long hair, kiss it good-bye for a while. But I know most of us older women have pretty short hair...long hair is for the youngsters. So ask your hairdresser to give a good short cut keeping in mind they will be shaving the back.

    I know it is scary...I find out next week if I have to get my whole lumbar fused to match my neck. And I'm freaking out too. But I know that you and I will be well sedated and drugged for pain and spasms. Yeah, it hurts and those muscles want to work but they can't and I think makes more pain than anything else. And so you aren't surprised....you can't hold your head up after surgery....the brace holds it up. Those muscles won't work. Why you have the brace as well as to hold you straight while it heals.

    I was really nauseous after both neck surgeries....does surgery make you nauseous? They tried everything with me and finally gave me 3 different nausea drugs and sent me into a deep sedation. So I've worked with my primary doc on finding something that helps me and I now use Zofran...it's what they use with people on chemo. Strong stuff but it works! When you see your doc prior to surgery, talk to him about post-op nausea if that is a problem because it's really, really hard to throw up with a brace on your neck. I would have been so much more comfortable had I gotten that and will be demanding it this time.....Zofran.

    Other than that, it's all about time and healing. The biggest problem is if the bones don't fuse and I have no idea what you can do to assist the bones in growing except to say...treat yourself well before and after and eat well. Get a bottle of Vit. B Complex in for after surgery....nerves need Vit B(all of them) to heal well. But good nutrition really helps....and lots of liquids to flush the meds out of your system.

    And plan to sleep. Sleep all you can. Sleep is healing and good for you. Let's the body heal without having to worry about the rest of you. Sleep...lots.

    What is your surgery date? I should be around for the next 3 weeks....will take my doc longer than that to arrange surgery for my lumbar if I need it, so I'll be here. You'll be okay. This is not a quick fix and takes a long time to heal but once it does, it's not bad...you won't hurt and the strength will be back...that takes time too...took me 9 months to start really getting any strength back in my arms.

    Find something that makes you want your arms back and hold on to it. For me, it was wanting to be able to hold on to my grandchildren when I had them....and my daughter-in-law got pregnant while I was in the hospital so it was good timing. My doc told me today to stop holding the grandkids until the surgeon sees my back so once again, I have that goal. I have a new 3 month old grandson who is cute as a button and I love holding him...new thing to hold on to. Makes it easier to cope with.

    So ask any questions you want.

    hugs.........Jenny

     
    Old 10-24-2011, 05:54 PM   #13
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    Re: C3 - T1 Surgery Questions

    Hi Jenny,
    I went last Thursday for my pre-op. stuff as well as the neck brace. The fitting went okay but it was so scary to see how it fits. You are so right that I was wondering how I was going to sleep in it. I guess when you're tired enough, you'll sleep in anything. How are you doing? Did you hear if you need lumbar surgery? I want to thank you so much for responding to me. It is keeping me sane. Thanks so much for all the good advice as well as what to expect after surgery. How long did it take you before you were able to hold your head up without the brace? That just seems so scary to me. The person in the brace shop did not say anything about this other than they will put me in the brace when I wake up from the surgery. I'm supposed to have a 3 day hospital stay if all goes well. Please let me know how you're doing.

    Thanks again,
    Ann Marie

     
    Old 10-25-2011, 03:22 AM   #14
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    Re: C3 - T1 Surgery Questions

    Ann Marie,
    As always, Jennie give great advice. Be sure to check the sticky at the beginning of this forum for things to have at home for after ACDF surgery. A lot of that applies to any neck surgery. Having just gone through another shoulder surgery (SLAP repair on left, so now have matching shoulders) and having had 2 neck sugeries, having a list of things to do before surgery makes the time go faster and distracts you from the 'nervousness.' My shoulder doc insisted I use Dilaudid pain med for after surgery(I remember the post-op pain) so I did and even stool softener, foods, etc. did nothing to relieve the severe constipation! That was worse than the op pain! Everyone is different, but don't let anyone tell you that ALL narcotics bind you up and ALL narcotics will give you nausea. That is NOT true! For me, Vicodin works better - and once I stopped the Dilaudid and switched to Vicodin, ahhh the relief! So have stool softener (CVS generic works fine) and Phillips Milk of Magnesia caplets at home...(even those didn't relieve the constipation from the Dilaudid.) So don't hesitate to ask for a different narcotic and Zofran for nausea when you go home.
    Also find out who you will see on your first post-op visit. Don't know how your surgeon works, but it is not unusual to see the PA or APRN for first visit. Many patients expect to see their surgeon and are hugely disappointed when they arrive for appt. and don't.
    So check out the list and make your own. You'll do just fine!

     
    Old 10-25-2011, 08:48 AM   #15
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    Re: C3 - T1 Surgery Questions

    Hey Sk84lf...how are you! Another shoulder surgery...girl this has to stop!

    I've done both Dilaudid and morphine after surgery and I think the Dilaudid did better but you are right...it is really constipating. I ate prunes once I got home and that helped me, but in the pre-op appointment, they told me to take 2 Senocot pills the morning of surgery with a tiny amount of water...laxative. That helped too.

    I was kept pretty comfortable after surgery...don't know why but I was. But I was also told 3 days for both and ended up with 5 days for the first and 8 days for the second so 3 days is not written in stone.

    Ann Marie....since you are having yours from the back like mine was, they cut the muscles that hold up your head. It takes a minimum of 10 days for the muscles to heal enough to start to hold you up at all but for me, it was a good 3-4 weeks until I could do it myself. But I had to stay in the brace for 7 weeks and then 6 weeks in the soft collar. That is for allowing the bone to fuse okay. Takes a good 6 months for the fusion to take. Make sure they do x-rays at about 6 months to check for fusing.

    Sk84lf is right about the first visit back...I always saw the PA who took out my staples. In fact, I always see her each and every time even when I see the doc too. I'm lucky my doc has a female PA as I have found she is the clue to getting good care....get to know the PA. she has been a godsend.

    And the person who does the scheduling is a good person to get to know too...they can get you in when you might not otherwise get in. I've had to wait 11 weeks to be seen for my back because the office assistant is out on maternity leave. when you are in pain or having a problem, you have to get past them to get to the doc so greasing the wheels helps.

    You won't be able to post for a while after surgery but please do come back, even if it's just to type one word...like "OKAY"...and let us know how you are and that you make through surgery. I always worry about everyone....(yes, I'm a worry-wort).

    Keep asking questions...any and all are fine.

    Jenny

    Last edited by jennybyc; 10-25-2011 at 08:59 AM. Reason: additional info

     
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