Re: SURVIVING MORE SURGERY

[Guest guest]

Donna, I'm not Cam, and Cam surely has a way of helping us accept the reality of what we are going through with a huge dose of it isn't the end of the world but another step in dealing with our complex spines.

I don't have a cervical fusion, but am fused from T4 to the sacrum. Needless to say, there's a huge difference in my fusion and yours. Since my revision surgery I've had pain at the top of my original HR fusion and have read a lot of posts here about others having first time pain in the cervical area and I try to hold my head up, anything I can think of, to avoid wear and tear there because I think a lot of it is unavoidable due to our new alignment but I doubt that simply holding my head up will ward off something seriously mechanically out of alignment.

I hope that on top of having to be braced 24/7 for 4 months that you're not in pain. I'd expect that with the degree of corrective surgery you had done that your surgeon would certainly prescribe what you need for adequate pain relief. I'm looking forward to 4 months from now for a totally different reason - Spring! Although winter is beautiful, I always set my sights on spring. So, for that reason, I'll be thinking of you and timewise when you're freed of that brace we'll be on the cusp of springtime.

Hopefully Cam will get online soon - I'm like you in that she always knows the right thing to say and it is always with lots of thought, meaning and experience.

G

[ ] SURVIVING MORE SURGERY

Just wanted to post an update regarding c-spine surgery.I have to sayI thought after going through revision surgery this would be a pieceof cake but boy was I wrong,I mentioned this to my surgeon at mypost-op visit and he said in some ways this one turned out to be morecomplex!Apparently once they got in there things were worse than theythought and they had to do a corpectomy they cut away part of allthree vertabrae (c4-c7)took ot the discs and put this long,huge,cagein as well as a plate and of course more screws-I'm starting to feellike a toolbox and you should see my x-rays now.He also said they hadto jack my spine so far apart it's pretty fragile until fused.Soo I'mstuck in this Aspen Collar for 4 months 24 hours a day and I have tosay out of all the appliances I've worn over the years(MilwaukeeBrace,Boston brace,body cast)this is the worst!!!!!So I'm now fusedc4-c-7 then T2 to the sacrum which at least means I don't have manydiscs left to break down.It's been pretty rough,especially since Ijust had my revision done barely a year ago but hopefully there's alight at the end of the tunnel.I wish everyone here good strongcervical spines and Cam I sure could use one of your famous pep talkscause I'm feeling pretty bummed..............Donna

[Guest guest]

Hi Donna,

I'm sorry you are dealing with so much all in the same year, Hang in there, it's sure to get better soon! You are in my thoughts and prayers..

Take care, Ken.

From: Donna <nursedonnadlct@...>Subject: [ ] SURVIVING MORE SURGERY Date: Sunday, November 30, 2008, 6:50 PM

Just wanted to post an update regarding c-spine surgery.I have to sayI thought after going through revision surgery this would be a pieceof cake but boy was I wrong,I mentioned this to my surgeon at mypost-op visit and he said in some ways this one turned out to be morecomplex!Apparently once they got in there things were worse than theythought and they had to do a corpectomy they cut away part of allthree vertabrae (c4-c7)took ot the discs and put this long,huge,cagein as well as a plate and of course more screws-I'm starting to feellike a toolbox and you should see my x-rays now.He also said they hadto jack my spine so far apart it's pretty fragile until fused.Soo I'mstuck in this Aspen Collar for 4 months 24 hours a day and I have tosay out of all the appliances I've worn over the years(MilwaukeeBrace,Boston brace,body cast)this is the worst!!!!!So I'm now fusedc4-c-7 then T2 to the sacrum which

at least means I don't have manydiscs left to break down.It's been pretty rough,especially since Ijust had my revision done barely a year ago but hopefully there's alight at the end of the tunnel.I wish everyone here good strongcervical spines and Cam I sure could use one of your famous pep talkscause I'm feeling pretty bummed...... ........Donna

[Guest guest]

Dear Donna,

Wow, it's amazing all you have gone through in a year, lets hope you are DONE, and you get amazing results from this last surgery. You even managed to get me reading and learning more, corpectomy was a new term for me, see even and old dog in this spinal stuff sure has more to learn. I'm so glad you are and were in good hands, and this spinal stenosis while worse than they thought, has been taken care of, and the techniques used were top of the line. I know now it's hard to be grateful, more surgery is always a huge bummer, but in this case it was really needed to keep your mobility and lessen your pain, and with time away from it I'm sure you'll find it worth it, now it just sucks. I can imagine that collar brace is just awful, bracing in any form is not fun, and that, worse. I'm sure you'll get your whiplash questions, but you'll have soooooo much better story! I bet there will be doors opened, and kindness coming your way!

As to feeling this is unfair, and it bumming you out, it is unfair, and a bummer, but alas you just have to get through it. While I've not had neck surgery, I did have two full on revisions, my second being worse than my first, in a 11 month time frame. My second meant more osteotomies, a replacement of all my revision hardware, and it wasn't just limited to my lumbar region but my thorasic too, with and extension of my fusions upward to T1 from T5. When we found that I needed a second, so shortly after my first, Sure I was pissed, and despondant for a moment, but then there was work to do to get ready. I had to keep my eye on the prize, and the prize was getting better, so I handed the surgery to my doc, and got my family ready and my body ready to do my work of healing. Was it fair, nope, was it easy, nope, but because I stuck it out and worked hard, and so did my doc, I came through it. People have asked me how I got through it, I just say I had to, and you can will yourself through, what else can you do. At about three months after my last revision I had to go do osteoporosis treatments at a local cancer center( screws couldn't be placed in some areas due to my bone quality), they basically treated me as if I had bone cancer( I didn't) to jump start my bone quality, and hopefully keep it from getting worse. At the time it was one more thing to do, and I sure was pissed that I had to go through yet another thing while I was still healing and in that awful TLSO brace. The treatments were awful for me, since I got so sick from them, and what should have been a one hour infusion turned into six hours with all the pre and post meds to keep me from awful headaches and throwing up. But here is the good part, it turned out to be the best thing that could have happened to me, medically it helped, but emotionally it saved me from depression and sadness. I got the priviledge to sit with cancer patients, month after month, and how they look at life and what they were going through, made what I was going through far less daunting, and made me really appreciate and thankful for just what doctors were able to do for me. Here they were fighting for their lives, going through just awful treatments, and yet they were the happiest people, and truly lived more than anyone I've ever met. So what I was going through was put into perspective, Sure it was tough, but I was blessed that there was so much doc's had done for me, and I was getting better. For many of them they just didn't have the option of getting better yet they had a joy in life that I had kinda lost during my three surgeries in the past two years. It gave me the jump start to start looking at my whole surgical battle differently, and not to be down but glad there was something being done for me. I got up each day with a different outlook. I think I might have drown in all I went through, but they gave me the gift of optimism despite hardship, and helped me more than they will ever know.

So my only advice is, even when it's tough, the tough keep on keepin on, you have too, you want and need to be better. Is it easy, no, wish it was, but you have it in you to dig in and make it through this. You have us when the moments are tough, and your family, and lean when you need to. You are amazing, and you are helping so many others by sharing!

Colorado Springs

[ ] SURVIVING MORE SURGERY

Just wanted to post an update regarding c-spine surgery.I have to sayI thought after going through revision surgery this would be a pieceof cake but boy was I wrong,I mentioned this to my surgeon at mypost-op visit and he said in some ways this one turned out to be morecomplex!Apparently once they got in there things were worse than theythought and they had to do a corpectomy they cut away part of allthree vertabrae (c4-c7)took ot the discs and put this long,huge,cagein as well as a plate and of course more screws-I'm starting to feellike a toolbox and you should see my x-rays now.He also said they hadto jack my spine so far apart it's pretty fragile until fused.Soo I'mstuck in this Aspen Collar for 4 months 24 hours a day and I have tosay out of all the appliances I've worn over the years(MilwaukeeBrace,Boston brace,body cast)this is the worst!!!!!So I'm now fusedc4-c-7 then T2 to the sacrum which at least means I don't have manydiscs left to break down.It's been pretty rough,especially since Ijust had my revision done barely a year ago but hopefully there's alight at the end of the tunnel.I wish everyone here good strongcervical spines and Cam I sure could use one of your famous pep talkscause I'm feeling pretty bummed..............Donna

[Guest guest]

Thanks ,I live in Florida so it's pretty much like Spring right

now.Pain-more than I expected,before surgery had little neck pain

mostly between the scapula and shoulder and arm,since surgery my neck

bothers me a lot more and have problems with my fingertips going numb

but am assured this too shall pass.Anyone having these problems should

be monitored and if surgery is needed sooner is better than later due

to possibility of nerve damage as the nerves in that area control so

many parts of your body.Thank you so much,Donna

>

> Donna, I'm not Cam, and Cam surely has a way of helping us accept

the reality of what we are going through with a huge dose of it isn't

the end of the world but another step in dealing with our complex spines.

>

> I don't have a cervical fusion, but am fused from T4 to the sacrum.

Needless to say, there's a huge difference in my fusion and yours.

Since my revision surgery I've had pain at the top of my original HR

fusion and have read a lot of posts here about others having first

time pain in the cervical area and I try to hold my head up, anything

I can think of, to avoid wear and tear there because I think a lot of

it is unavoidable due to our new alignment but I doubt that simply

holding my head up will ward off something seriously mechanically out

of alignment.

>

> I hope that on top of having to be braced 24/7 for 4 months that

you're not in pain. I'd expect that with the degree of corrective

surgery you had done that your surgeon would certainly prescribe what

you need for adequate pain relief. I'm looking forward to 4 months

from now for a totally different reason - Spring! Although winter is

beautiful, I always set my sights on spring. So, for that reason,

I'll be thinking of you and timewise when you're freed of that brace

we'll be on the cusp of springtime.

>

> Hopefully Cam will get online soon - I'm like you in that she always

knows the right thing to say and it is always with lots of thought,

meaning and experience.

>

> G

>

> [ ] SURVIVING MORE SURGERY

>

>

> Just wanted to post an update regarding c-spine surgery.I have to say

> I thought after going through revision surgery this would be a piece

> of cake but boy was I wrong,I mentioned this to my surgeon at my

> post-op visit and he said in some ways this one turned out to be more

> complex!Apparently once they got in there things were worse than they

> thought and they had to do a corpectomy they cut away part of all

> three vertabrae (c4-c7)took ot the discs and put this long,huge,cage

> in as well as a plate and of course more screws-I'm starting to feel

> like a toolbox and you should see my x-rays now.He also said they had

> to jack my spine so far apart it's pretty fragile until fused.Soo I'm

> stuck in this Aspen Collar for 4 months 24 hours a day and I have to

> say out of all the appliances I've worn over the years(Milwaukee

> Brace,Boston brace,body cast)this is the worst!!!!!So I'm now fused

> c4-c-7 then T2 to the sacrum which at least means I don't have many

> discs left to break down.It's been pretty rough,especially since I

> just had my revision done barely a year ago but hopefully there's a

> light at the end of the tunnel.I wish everyone here good strong

> cervical spines and Cam I sure could use one of your famous pep talks

> cause I'm feeling pretty bummed..............Donna

>

[Guest guest]

Donna,

I am so sorry I didn't get an answer to you up last night. I was

squeezed for time and I hoped to provide a more thoughtful post than

my time would allow.

I honestly don't have much experience with what you are going through

right now, except the part about finding yourself in the never ending

maw of scoliosis and the havoc it has wrecked on my body, my plans

and my life. In a word, it sucks.

I know that so far you haven't been able to reap many of the benfits

of having revision for your flatback and if it was me, I would

probably be somewhat down in the dumps too. It is likely to be some

time until you will really know how all this surgery will all play

out....and fear of the unknown is probably always lurking in the back

of your mind. No doubt you are beginning to feel that your family and

friends, sweet though they may be, are a bit weary of your situation

and none of us like that feeling of being " needy " . Part of

our " Scoliosis Overcompentsation Syndrome " , I suppose. (If you

haven't read about that it is in our files section, and I highly

recommend it.)

Have I bummed you out yet? I don't mean to...I am just trying to go

the long way around of saying that whatever you are feeling seems to

me, a non-medical person, to be completely normal, and part of the

process of getting well. I also would say that I would be very

mindful that the mental part of healing can be as important as the

physical, and if you feel that you need the support and help of

having a trained therapist to talk to who can help you with this, now

is the time to pull out all the stops.

I often look back on the period in my life when my first marriage was

falling apart and I began to see a therapist who was wonderful in

walking me back through my life to see what was " there " .

At the time, just prior to that session with her, I would have told

you, (and I did tell her), that my earlier scoliosis surgery was no

big deal. Yet, as I described it to her, I clearly remember her eyes

getting bigger and bigger and her probing questions about how I

remember feeling at the time. Well...lets just say that the water

works began and I finally looked at what I had undergone and how I

had handled it by completely minimizing it. Not very healthy for the

long term. On the other hand, the therapist pointed out that what I

had done had been mentally protective at the time, but that I really

needed to acknowledge how awful a lot of that time in my life really

was.

Not surprising, the hot tears rolled down my cheeks in the weeks

leading up to my revision, after I had made the decision to go

ahead...but before the surgery. I did feel like I could let the anger

and unfairness of it all out. I am a little better letting myself

feel the emotional side of things that happen to me now. If I was in

your situation, I can only guess how I would have felt, but I think I

would have gone back for some time with my therapist to get help with

getting through this.

Does any of this apply to you? I don't really know. I am not a

medical person. I do, however, want acknowledge that you ARE going

through a BIG thing in your life...and I really wish you weren't.

So now for the pep talk! I can easily see that you are a strong

woman, you have endured much, and I know you WILL get through this.

Perhaps you can try to look at this as you having to have this all

done basically as one big revision, separated by more months than

most...but not completely unusual either. Please accept that you have

a right to still be healing for a very long time. Don't be to hard on

yourself or set impossible goals. Your recovery will be as unique as

you are and your body is going to take time to adjust to what is A

LOT of fusion. You never really got to recover yourself from the

first revision, so I am guessing that your timeline to total wellness

might be longer than most. And you MUST treat yourself very

delicately until your neck is healed.

DrRand was talking about the increased numbers of these " high risk "

cervical surgeries (such as yours) being necessary as a result of

these long fusions when I saw him last. Those were his words: " high

risk surgery " , and they rang very loudly in my ears. He also said

that the body is just not designed to absorb all the new shocks in

our other joints above and below long fusions. Try to be mindful of

this. We are not 15 anymore, and our healing timeline is long. I feel

sure that eventually you will get to a place where you have good

function and no pain, (or a lot less pain that is well managed), but

it will take time. If you need support to get " there " please get it

here with us, but also set it up in your daily life however you can.

You deserve it. Really, you do.

Patience and gentle hugs,

Cam

[Guest guest]

You guys are the best and what you said about " family and feeling

needy " ring so true as well as minimizing the original sciliosis

surgery, i know now that I did that as well.Thanks for the pep

talk,you always make me feel better..........Donna

, " cammaltby " <cammaltby@...> wrote:

>

> Donna,

>

> I am so sorry I didn't get an answer to you up last night. I was

> squeezed for time and I hoped to provide a more thoughtful post than

> my time would allow.

>

> I honestly don't have much experience with what you are going through

> right now, except the part about finding yourself in the never ending

> maw of scoliosis and the havoc it has wrecked on my body, my plans

> and my life. In a word, it sucks.

>

> I know that so far you haven't been able to reap many of the benfits

> of having revision for your flatback and if it was me, I would

> probably be somewhat down in the dumps too. It is likely to be some

> time until you will really know how all this surgery will all play

> out....and fear of the unknown is probably always lurking in the back

> of your mind. No doubt you are beginning to feel that your family and

> friends, sweet though they may be, are a bit weary of your situation

> and none of us like that feeling of being " needy " . Part of

> our " Scoliosis Overcompentsation Syndrome " , I suppose. (If you

> haven't read about that it is in our files section, and I highly

> recommend it.)

>

> Have I bummed you out yet? I don't mean to...I am just trying to go

> the long way around of saying that whatever you are feeling seems to

> me, a non-medical person, to be completely normal, and part of the

> process of getting well. I also would say that I would be very

> mindful that the mental part of healing can be as important as the

> physical, and if you feel that you need the support and help of

> having a trained therapist to talk to who can help you with this, now

> is the time to pull out all the stops.

>

> I often look back on the period in my life when my first marriage was

> falling apart and I began to see a therapist who was wonderful in

> walking me back through my life to see what was " there " .

>

> At the time, just prior to that session with her, I would have told

> you, (and I did tell her), that my earlier scoliosis surgery was no

> big deal. Yet, as I described it to her, I clearly remember her eyes

> getting bigger and bigger and her probing questions about how I

> remember feeling at the time. Well...lets just say that the water

> works began and I finally looked at what I had undergone and how I

> had handled it by completely minimizing it. Not very healthy for the

> long term. On the other hand, the therapist pointed out that what I

> had done had been mentally protective at the time, but that I really

> needed to acknowledge how awful a lot of that time in my life really

> was.

>

> Not surprising, the hot tears rolled down my cheeks in the weeks

> leading up to my revision, after I had made the decision to go

> ahead...but before the surgery. I did feel like I could let the anger

> and unfairness of it all out. I am a little better letting myself

> feel the emotional side of things that happen to me now. If I was in

> your situation, I can only guess how I would have felt, but I think I

> would have gone back for some time with my therapist to get help with

> getting through this.

>

> Does any of this apply to you? I don't really know. I am not a

> medical person. I do, however, want acknowledge that you ARE going

> through a BIG thing in your life...and I really wish you weren't.

>

> So now for the pep talk! I can easily see that you are a strong

> woman, you have endured much, and I know you WILL get through this.

> Perhaps you can try to look at this as you having to have this all

> done basically as one big revision, separated by more months than

> most...but not completely unusual either. Please accept that you have

> a right to still be healing for a very long time. Don't be to hard on

> yourself or set impossible goals. Your recovery will be as unique as

> you are and your body is going to take time to adjust to what is A

> LOT of fusion. You never really got to recover yourself from the

> first revision, so I am guessing that your timeline to total wellness

> might be longer than most. And you MUST treat yourself very

> delicately until your neck is healed.

>

> DrRand was talking about the increased numbers of these " high risk "

> cervical surgeries (such as yours) being necessary as a result of

> these long fusions when I saw him last. Those were his words: " high

> risk surgery " , and they rang very loudly in my ears. He also said

> that the body is just not designed to absorb all the new shocks in

> our other joints above and below long fusions. Try to be mindful of

> this. We are not 15 anymore, and our healing timeline is long. I feel

> sure that eventually you will get to a place where you have good

> function and no pain, (or a lot less pain that is well managed), but

> it will take time. If you need support to get " there " please get it

> here with us, but also set it up in your daily life however you can.

> You deserve it. Really, you do.

>

> Patience and gentle hugs,

> Cam

>