September 9th surgery

[mabeckoff]

I am getting depressed again just thinking of more surgery. This pain is so intense and I cannot use my right hand to do anything.

[JenniferG]

I feel for you Melissa. You've had a terrible time since your first surgery. But I can think of no way you can avoid these extra surgeries. I guess you have no choice but to keep getting these complications fixed until there's nothing more hindering recovery. That day can't come quick enough, I'm sure. It WILL come. Probably hard to believe right now, but it WILL.

[mabeckoff]

This is from Dr Bederman

When I get depressed,I have to remember this when I read about everyone doing all activities that I cannot consider at this time . Since he feels that I am
doing good, I have to remember that as well


You had surgery to correct the scoliosis but in addition to spinal imbalance and a big curve, you had pinched nerves in the low back and spinal degeneration.
Since you had your thoracic and lumbar spine fused to the sacrum and had a persistent curve above, that led to narrowing in your neck. Then you had the
cervical surgery to decompress the spinal cord and had a cord injury. Then you developed progressive scoliosis between the fusions, recurrent narrowing above
the cervical fusion, a broken rod from nonunion and a CSF leak. Those additional problems are not the standard scoliosis problems seen in children or even most adults. We have addressed these issues.
I would say that you should be considered more of a “spinal revision with scoliosis” patient than a pure “scoliosis” patient.
I don’t think you can compare yourself with others on the forum when they say they are out hiking, bike riding, or doing these other activities 6 weeks after
surgery.

Your whole body has undergone tremendous changes over the past couple of years and is still healing. As you become more active your muscles have not yet reconditioned. It’s like training for a marathon when all you’ve done is walked 2 blocks. This will cause the majority of your neck and back pain. Your arms and
legs will give you some periodic pain as the nerve sensitivity settles down and the right shoulder and fibromyalgia make it worse.
This whole thing will take a lot of time.
You can be comforted by the fact that your nerves are free and locked in so that there shouldn’t be tremendous irritation and that your spine is straight.
However, your muscles, even after they rehab, will probably never be normal since your back and neck no longer move normally.
Overall, I think you are doing great and I don’t expect you to bounce back from what you have been through – you need to be patient and understand that
aches and pains will be normal for a while.

[JenniferG]

It's nice that Dr. Bederman's taken the time to explain that to you (and us!) But it's a good reminder that your case will require much longer. Just keep on battling Melissa, "your" day will eventually arrive. I'm so glad you have Dr. B on your case.

[mabeckoff]

It's nice that Dr. Bederman's taken the time to explain that to you (and us!) But it's a good reminder that your case will require much longer. Just keep on battling Melissa, "your" day will eventually arrive. I'm so glad you have Dr. B on your case.

I am so glad that I have Dr Bederman on my side this time. He is really a God send to me

[loves to skate]

I am getting depressed again just thinking of more surgery. This pain is so intense and I cannot use my right hand to do anything.

Melissa,
I am so sorry you are in such pain and have to face surgery on your shoulder. Is the shoulder that needs to be fixed on the same side as your right hand that isn't working right now?
You know it took me almost one year before I could get back to the activities that I love and I will never be pain free. You will get there in due time. Not everyone heals quickly and some of us have more complicated spines before we ever have our surgeries. God is trying to teach you patience. It is the hardest lesson I think we will ever learn. Just remember that you have found a top notch Doctor who is with you all the way.
God Bless you and try to enjoy the holidays.
Sally

[rohrer01]

Well, I really over did it yesterday. Way too much walking and I am paying for it today. We went out to see Christmas lights and just kept walking.


Also, the last several week or so I have been waking up with a severe headache and neck pain. Some days the pain is so bad that I cannot lift my head up. My
surgeon does not feel that it is related to my surgery.Any ideas?

Thanks

Melissa

I know my neck pain leads into migraines. It usually gets worse as the day wears on, but occasionally I wake up with a killer headache. I know that a major cause of morning headaches is sleep disturbances like apnea, or lack of oxygen from snoring, etc. I'm wondering if you have developed apnea or something, especially if you have to take a lot of pain meds to fall asleep. Just a thought. I hope you get it figured out.

Sorry about the rest of the stuff like your pain and your upcoming shoulder surgery. I know someone who had both shoulders done. Yes, it's an outpatient surgery, and yes the recovery is difficult. BUT, compared to what you are going through with your back issues and nerve pain, it might not seem all that bad in comparison. It's like if you just stubbed your toe real hard and broke it, are you going to notice if it has a small sliver? Probably not until the pain of the break subsides. Maybe a poor analogy, but I'm hoping this will go easy for you.

Your doctor is right. You had so many problems other than scoli, it's not fair at all to even compare yourself to others. I've read on here many, many people that have just had the scoli surgery alone and it taking a couple of YEARS, not weeks, to really get moving again. Look at all you have had done.

My case is absolutely nothing compared to yours and I had an anesthesiologist tell me that I have so much pathology that I will never be off oral pain meds (we were discussing narcotics!), whether I have the surgery or not. I have mild degenerative disc disease and mild arthritis along with the scoli. Of course, I'm determined to prove him wrong. The point is, if a doc said that to me, then you have a right to your pain. But you have been relieved of pinched nerves. Unfortunately nerve regeneration hurts until it is healed.

You have my heartfelt empathy. I, as well as many others, I'm sure, will try to keep encouraging you to keep up your hard fight. You will get through this. It will just take longer than the regular scoli. It sounds like you have a very good doctor that did the very best he could with the mess that your spine was in. He put you back together, now you have to heal. Humpty Dumpty COULD be put back together again! (not implying anything about your physique, of course!). Take Care!

[titaniumed]

Melissa

Maybe it would be a good idea to get your shoulder repaired soon. You know I waited 8 months, and that was probably too long. The shoulder surgery was very easy compared to scoli surgery, you can do this. Right after my shoulder surgery, my shoulder Doc wanted me in PT right away as he didn’t want it to freeze up. The PT sessions were not painful at all, and for the first 2-3 weeks the therapist would rotate the arm to establish range of motion. It wasn’t a painful thing at all and actually by the time I started on the arm bike, that really helped with the muscles in my upper back. I started with 1# weights at about 5 weeks. They use hot and cold compresses, they feel great.

On a 1-10 pain scale, my shoulder surgery was a 1. My humeral head was shattered, and my supra spinatus was ripped off. (one of the 4 rotator cuff muscles) My humeral head (ball at top of arm) had to be re-shaped so that bone was cut on. BTW that was done by Dr Uppal. Got to give him credit.

In my scoli recovery, I couldn’t even post for 3 months and sat in a hot bath 5 times per day dealing with pain. What your going through is normal for what you have had done. Your healing, and healing takes a long time, you know that. You are only 6 weeks out on the last surgery, and soon you should feel a little better.

I couldn’t raise my arm at all and had to lift it onto my mouse to run my computer. Are you doing this right now? In other words, the fingers work but the arm doesn’t?
Ed

[jrnyc]

Melissa, i am so sorry you have yet another surgery you will have to deal with...
i hope yours will be as simple as TiEd says his was, but even if that is true, just having to deal
with another time under the knife should be enough to make you scream, if you even have the energy or
will to scream!
please try not to feel too sad...my personal suggestion is to take some time to feel crappy about facing
another surgery, feel really sorry about it and for yourself, as you have a perfect right to, and then
dust yourself off, pick yourself off the floor again, and try to gather your strength to face it...
i know, easier said than done, but i know you can do it...
and thank goodness for Dr Bederman! he sounds like a wonderful man and great doctor!
if you stop for a minute and compare him and that letter to what you had to deal with
before you got to CA...the difference is huge...and i hope that in itself gives you a feeling of hopefulness...
of course your body is suffering...it has been thru so much, like an assault...a continual assault!
please please do not compare yourself to anyone but yourself....
all that matters is whether or not you can do more today than yesterday, and even that isn't real,
because recovery from most things is usually one step forward, 2 back, 2 forward, 1 back, etc, until
things improve to many steps forward and few back...
but then again, you know all that....

i hope the holidays can bring you a feeling of hope in that you have a doctor who will not
abandon you, as so many surgeons unfortunately seem to do!
i will keep you... and Dr Bederman... in my prayers...
i hope this next surgery goes smoothly and the recovery from it goes well...
and i really hope 2012 is the year things start to get better and keep moving in a postive direction...

jess

[mabeckoff]

Melissa,
I am so sorry you are in such pain and have to face surgery on your shoulder. Is the shoulder that needs to be fixed on the same side as your right hand that isn't working right now?
You know it took me almost one year before I could get back to the activities that I love and I will never be pain free. You will get there in due time. Not everyone heals quickly and some of us have more complicated spines before we ever have our surgeries. God is trying to teach you patience. It is the hardest lesson I think we will ever learn. Just remember that you have found a top notch Doctor who is with you all the way.
God Bless you and try to enjoy the holidays.
Sally

Thanks Sally . Yes it is the same side my right side. It explains why my right hand does not work. I know that it will take me a long time to get better but I just
want to get started in that direction

[mabeckoff]

[QUOTE=rohrer01;131594]I know my neck pain leads into migraines. It usually gets worse as the day wears on, but occasionally I wake up with a killer headache. I know that a major cause of morning headaches is sleep disturbances like apnea, or lack of oxygen from snoring, etc. I'm wondering if you have developed apnea or something, especially if you have to take a lot of pain meds to fall asleep. Just a thought. I hope you get it figured out.

I used to have migraines but these feel different. It is like I don't have the strength to lift my head up and when I try ,it is so painfull

[mabeckoff]

Ed,
That is correct . I cannot lift my right arm but my fingers work. I want to have the surgery as soon as possible , I guess, but first I have to get an appt with
the surgeon who is going to do the surgery. He is the head of the orthopedic department and is very busy. The other thing that I have to consider is that we
are , most likely,going to be moving into our house the middle of Feb. I don't know if I should wait to have the surgery until I have unpacked some of the items
that I will need. But first, I have to see the surgeon . I was told that my arm would be in a sling for at least 6 weeks. So you did not have to have your arm in a sling? I thought that was standard for this surgery.

I am tired of always being 6 weeks out of surgery. I am doing OT at my house for another 3 weeks .

Now, I have another situation. My pain is getting better and my energy level is getting worse. I am going back to napping 2-3 times a day

Melissa

[JenniferG]

It takes energy to heal so perhaps the healing that's going on now, is draining you so that you need to sleep. I see nothing wrong with you giving in to it and napping as many times a day as you need. I napped every single day for weeks after my surgery. It can only do you good Melissa. It should stand you in good stead for the next surgery as well. Sleep is good!

[mabeckoff]

It takes energy to heal so perhaps the healing that's going on now, is draining you so that you need to sleep. I see nothing wrong with you giving in to it and napping as many times a day as you need. I napped every single day for weeks after my surgery. It can only do you good Melissa. It should stand you in good stead for the next surgery as well. Sleep is good!

So you are saying that you feel sleep needs increase or decrease at different times?

[mabeckoff]

[QUOTE=jrnyc;131601][COLOR="#0000CD"]Melissa, i am so sorry you have yet another surgery you will have to deal with...
i hope yours will be as simple as TiEd says his was, but even if that is true, just having to deal
with another time under the knife should be enough to make you scream, if you even have the energy or
will to scream!

Thanks Jess, I just am tired of having surgery and then finding out that I need more surgery. I am glad that there is surgery that can make the pain go away
and give me back my mobility.

please try not to feel too sad...my personal suggestion is to take some time to feel crappy about facing
another surgery, feel really sorry about it and for yourself, as you have a perfect right to, and then
dust yourself off, pick yourself off the floor again, and try to gather your strength to face it...
i know, easier said than done, but i know you can do it...

Thanks for thinking so highly of me. I know that I can do it but I just don't know if I want to but I really know that I have to have this surgery because I cannot take this pain or lack of mobility


and thank goodness for Dr Bederman! he sounds like a wonderful man and great doctor!
if you stop for a minute and compare him and that letter to what you had to deal with
before you got to CA...the difference is huge...and i hope that in itself gives you a feeling of hopefulness...


Yes, I told Dr Bederman that I feel that God sent him to me. I do not even know if he is a believer but I told him anyway.If I did not have Dr Bederman on my
side I just would give up and spend my days in bed. When I think about my 15 hour July surgery and what my NC surgeon would have done, it is night and day

of course your body is suffering...it has been thru so much, like an assault...a continual assault!
please please do not compare yourself to anyone but yourself....
all that matters is whether or not you can do more today than yesterday, and even that isn't real,
because recovery from most things is usually one step forward, 2 back, 2 forward, 1 back, etc, until
things improve to many steps forward and few back...
but then again, you know all that....

Now when I get discouraged I have to remember what his letters says about me

i hope the holidays can bring you a feeling of hope in that you have a doctor who will not
abandon you, as so many surgeons unfortunately seem to do!
i will keep you... and Dr Bederman... in my prayers...
i hope this next surgery goes smoothly and the recovery from it goes well...
and i really hope 2012 is the year things start to get better and keep moving in a postive direction...

The holidays are very difficult since 2002 when my Mom died and 2006 when my Dad passed away. This year is more difficult as I am in a new state living in a
tiny rental full of boxes. I am not able to decorate or cook or bake holiday treats. Going forward, I have to think about my health and Dr Bederman . I have to work on being the best that I can be in 2012