*It's all in my head* DEFINITELY (but feel free to remind me, please!)

[discombobulated]

Hey all,

Well, since I'd mentioned it already, I nearly posted this in my "indestructible" thread, but I thought some who aren't following might hopefully have some ideas, too :o

The predicament is.....no matter how even my shoulders continue to look; no matter how even my newly-aligned pelvis stubbornly sits; no matter how much reduced my rib hump is reduced, how almost-evenly my left & right ribcage-sides seem to be, or how less concave & squished up my left ribcage is......there is the thought, almost constantly, that am I sure I'm as straight/de-rotated as I was right after surgery?????

My surgeon was (is) magnificent, felt my bones were quite strong, thinks he got good fixture, & all those great things that I certainly am not taking for granted. But he also in my first consult with him (pre-op) gave me, I think, an approx. 15% chance that over time my spine would return to its old ways. Now that I'm through the surgery & past worries about post-op pain & infection, I guess this is just the thing my brain has latched on to.

I'm in infinitely less pain - good sign. I feel like I'm sitting straighter in my wheelchair - good sign. I've been told twice now by people who don't know I've had surgery that I look like I've grown (in fact, I think I've gained no height, but figure it's the straighter-look they've noticed) - good sign. Lung capacity is massively increased & my left lower ribcage even actually moves in & out when I breathe now - GREAT SIGN. So WHY THE HODGE-PODGE CAN I NOT GET THAT THOUGHT OUT OF MY STUPID NOGGIN???

Admittedly, in the last couple of days, I feel like less of the right side of my back is sitting against my seating back, & the space between my left back & seating has grown slightly (none of my lumbar used to touch seating back, pre-op & the left still doesn't). And although it feels real, I strongly suspect my paranoia is just talking my logical brain into thinking like this. And my logical brain knows this is DANG FRUSTRATING!

I've been taking all my bone-strengthening meds like clockwork, I'm being so careful when moving, with sleeping positions, with not reaching to far, bending too much (from the hips), & all that jazz. That's All Good.

I know the paranoia is overwhelmingly most likely unfounded. I know it's "just" because this is the fusion that failed miserably last time & slowly gave me years of pain, reduced lung capacity, & other medical complications. So even if things are slowly slipping back, I know I should at least be enjoying this virtually-pain-free, easy-breathing time...but it's always at the back of my stupid head. And on random days, even those like today when I've had good news coming in, lots of things to distract me, & awaiting news on my furry new arrival.....today is an OBSESSIVE day. Which, yes, I know is stupid.


OK....so...my point is, I'd miscalculated & don't have my first check-up for another 4wks & 1day. 4w 1d left of THIS.

Please...can someone tell me...something...anything really, lol. That they relate - & that it turned out well (or even that it didn't). Any tips on how to objectively gauge rotation/curvature besides the useless old eyeballs??

And uhh...please don't say try anti-anxiety meds. A) I'm already on valium to keep "cervicogenic headaches with migraine features" at bay; & B) I want a way to re-assure myself, not to make myself feel like a zombie! [which valium does to me, anyway.]

I'm so sorry to rant & be all negative....I usually would not even publicly (& rarely privately) put such thoughts into words....but I don't know what to do...and I know you awesome people will hopefully be gentle with me (or else, Please...Just Whack Me Over The Head NOW. HARD. HARD ENOUGH TO LAST FOR 4 WEEKS.)

*sigh*...I'm sorry to whinge. But please...any ideas? :o


Take care, all.

[Susie*Bee]

Dis-- I can't help with much here, but I am praying for you. It all takes time to tell what will happen with our surgeries--and that is soooo hard for us. :eek: Also, (and I hope you don't mind this part) none of us is promised another day, so live today to its fullest, regardless of the whole scoli scenario. Try to find the joy that is around you and focus on it, rather than on how you are doing. You are doing all that you can do right now, to promote healthy healing. So anything beyond that is out of your hands. Chances are good (excellent?) that you will heal well and be abundantly better than you were. If not, then you will be able to cope with what comes your way, because you are a strong person with a keen mind and love of life. You will do fine, so trust in that thought and keep hoping for the best. And if you have faith in God, hold on to that above all, for He will take care of you. Hugs, Susie

[Pooka1]

I think my daughter experienced some form of anxiety like you might be having over the success of the surgery.

In the hospital, every time she was turned, I spent several minutes assuring her or moving her so that back was straight or her shoulders and hips and knees were always perfectly aligned.

At home, this continued with the addition of often asking me about her shoulder heights in the first several weeks. I must say the lopsidedness in her shoulders prior to surgery did not disappear immediately but rather switched sides. This greatly concerned her while it lasted but eventually her shoulders settled even.

I think she linked the success of the surgery to the adherence to being perfectly straight every single minute. I further think she did not trust her mind to accurately tell her what her body was doing. The latter point is correct... her brain had to gradually adapt and learn that she was straight when she was straight. I think her brain was telling her she was crooked when she was straight for quite a while.

Inaccurate information about the body being passed from the brain to the mind is not limited to fusion patients, BTW. It's part of why learning certain sports is so challenging. Maybe just realizing that you can't trust your brain yet will calm your fears that you are not healing properly or getting straighter.

What I kept telling my daughter is that she was following protocol and had to trust in the surgeon. That's all she can do.

I think you are still early in your recovery and have no reason to think you will not get a great result. Maybe try to focus on that.

Good luck.

[debbei]

Disc--

I have always been a worrier at heart, and I think I'm starting to have some of the same fears. It's only started in me the last week since I've been 100% off pain meds. I try to convince myself that the issue is, now I can feel little aches, pains and twinges that I couldn't before on the meds. That makes sense, right?

I'm praying that we're both stable. I know you're right--it's probably in BOTH our heads. :)

[scoliboymom]

It was my son that had the surgery but it's me that is constantly worrying, thinking his scar looks like its curving, his rib hump looks bigger, asking if he has any pain etc even one and a half years later. So you are not alone.
I do still like coming to this site and helping others along their scoliosis path but I also know that reading all the negative sometimes is too much for me and if I would stop coming here I wouldn't think about what might happen to Patrick but probably never will. Like Susie said try to live each day to it's fullest and enjoy your health now.
Ramona

[discombobulated]

Hi, everyone..

I'm fast running out of capability to stay awake & probably not too coherent by now, sorry. But...I really just wanted to say a big Thank You, to each of you, for the support, encouragement, & sharing your experiences. I feel quite terrible about having posted something so nutty & negative, & I swear it's not something I would ever usually do....really appreciate your taking the time/effort to respond, & even with kind words. You're all a special bunch here.

I am trying to hang on to the positives (yes, 85% chance that this thing will hold!), but always just have the thoughts of "what if", & "is it really....??" lurking in the brain. Feel a bit better today (probably because I've slept through a lot of it LOL). Always been somewhat obsessive / worrier but been caught up with lot of other stressy (non-surgery) stuff of late, guess something just had to give yesterday...sorry :o :o

But...thank-you again. And best, best wishes to you all for your recoveries & the recoveries of your kids. Must sleep now, lol. Take care, all.

[Pooka1]

Your post wasn't nutty and negative.

My daughter went through similar feelings so apparently they are not uncommon.

If you can't post stuff like that here, where can you post it?

No apologies required.

Best wishes.

[Jenlw]

After all that you have been through there is nothing wrong with having these thoughts!! But like Susie*Bee said, try to live each day to the fullest and enjoy being almost pain free! It's a great feeling. Have faith in yourself too that you will take good care of you and you will get through this like you have so many times before!! We are all here for you!

[Karen Ocker]

After my surgery, which gave me a massive correction, I felt as crooked as ever. It's like an amputation-one still feels as if the limb is still there.
The brain has to get used to the new height/ straightness. this feeling goes away in time. Enjoy the new you in the mirror.

Be careful of Valium; one dose of Valium lasts 3 days before being totally excreted. It accumulates in the body fat overtime with each daily dose causing a terrible depression. On the other hand tapering must be done under medical supervision to avoid seizures. Same with Xanax(alprazolam).

If you spine is straighter the "cervicogenic headaches" might get much better. Maybe your doc could suggest something less"depressing".

The feeling definitely goes away in time. Try not to go nuts with every jab or nerve wake-up(shock-type feeling); these are all normal and take many months to go away.

[laurieg6]

I can totally relate to your anxiety. I have it for my son. I sometimes still question if we chose the right surgeon who chose the right levels to fuse... Luckily my son is not an anxious type at all but that means he also doesn't worry about himself or his posture which still drives me crazy. I think you've put into words what a lot of people feel after this kind of major surgery.

[WNCmom]

I think you've put into words what a lot of people feel after this kind of major surgery.

Ditto from me, Disc, and thanks for doing it, because we all learn from each other. You've been through a LOT. We look forward to the results of your next follow-up with the surgeon so you can have some reassurance. In the meantime, remember we're all here with you.

Mary Ellen

[JenniferG]

Your worries are perfectly natural.

After having one fusion fail, (and there was a reason for that, which is not such a problem this time round - Dr. Askin said he did anchor into solid bone) and the disappointment and the resultant pain you've been through, it would be a surprise if you were anything but worried. These experiences are hard to negate and I think it's perfectly natural that you have these concerns.

But that doesn't mean anything IS going wrong. We're all hanging in there with you, waiting for this check up and will be keen to know the results!

Has your kitty been born yet?

[discombobulated]

Hey all,

Thanks again for such the support, though I'm sorry (yet kinda reassured :o ) that many of you have been through something similar.

Am exhausted, but feeling a lot better today. Took a big (mental) risk this morning & tried on some old clothes that had become too tight to wear pre-op due to curve + rib hump. Happily, most fit quite well, not at all tight (& not just because I lost a little weight). Of course, being me, it doesn't reassure me 100% that they wouldn't have fit even better immediately post-op...but it was positive that they fit much better than my perception of how the spine is would have let them fit (yeah...I know that doesn't make much sense, sorry! hope you can decipher).

I really am trying to just live each day as it comes & appreciate it. Especially in the last few of years, I've been in enough bad ways to really appreciate that I'm still kicking. Recovery is slow, but I'm here to go through it....and there's a good chance I won't be revisiting spinal fusion surgery again for a very long time, if at all. See, I'm trying to keep the positive things in mind, too. And my logical brain knows it's all true. :o

Karen, much thanks for the info about the diaz. I am pretty familiar with its possible probs & want to taper off ASAP (& had done so), but am still unfortunately needing it to keep the CGHs at bay to get sleep + a current flare up of nerve pains down my right leg (what it was originally prescribed for - due to swelling against spinal cord where 2 x vertebral osteotomies were done). My max dose is very high in frequency & dose (up to 5mg every 4hrs), esp. considering my size (about 30kg, struggling to regain to a 16.0 BMI *sigh*)....but this was done because my body doesn't absorb a lot of the dosages & I metabolise it very quickly. Also, I definitely do NOT take this dosage any more! It was what I was being given in hosp. to control the constant, intense nerve pains that were preventing me from sleping. I take anything from 1/4 x 5mg pill during the day, 1 full pill before bed, & generally 1/2 pill in the wee hours. Low dose during the day to keep nerve pains reasonable & neck a little looser, then higher dosages at night (but still not 1 pill every 4hrs) to deal with the increase in nerve pains that cme with lying down, + the lying down for long is what triggers the CGHs badly. I have an appointment with my GP for unrelated stuff soon, probably sometime next week - but was already planning to review the meds with him. But, thanks again for the info & warning.

Ok...must go sleep so i can (hopefully) be awake to watch Inauguration live (about 3am here - argh!!)...also falling asleep anyway, lol. Thanks again for all your thoughts and support. Really do appreciate it. Just hope I'm still somewhat coherent!

Take care, all. Best wishes.


PS. - no, no news yet on the kittens!! I'm a-dying here! lol :rolleyes:

[Karen Ocker]

My doc gave me neurontin for those pains and I slept great.

[discombobulated]

ok, well, I lost this post twice so far but luckily remembered some recent lessons about copying a post before submitting :rolleyes:. Fingers crosed for this time, because i'm exhausted, lol. Goodnight all.

----

Much thanks for the tip, Karen. I've heard it mentioned a lot around here, but had forgotten about it. The manufacturer's brochure (online) thingy seems to imply it would only help with the nerve pain, but is not a muscle relaxant - do you know if this is right? I feel as though the sharp nerve pains have settled a fair bit again, but still having to take the diaz to keep upper back / neck muscles relaxed enough to mostly avoid the cervicogenic headaches (most esp. the ones with "migraine features"!).

Anyhow, I have an appt with my GP next week, so will talk about meds with him. Thanks for something I can ask about :)

Cheers.

[PNUTTRO]

dis--

If you think you are having difficulty getting used to a new body, let me tell you how CRAZY I was.

I recently had a revision surgery. I put it off for many years because of family concerns and I lived with intense pain for over 5 years. I muscled through most of it because I refused narcotics. (There are reasons for that too.)

After my surgery, and after the initial recovery from it, I started to realize that I had very little pain. It made me crazy. I couldn't believe that I didn't have it. I cried over it. It felt empty. I mourned the loss of my PAIN. It took a couple months to really get my head straight.

The point is--your radical change of body will take some getting used to. You don't have to act like you feel any differently than you do. Maybe no one will get it, but I think I do.

Best wishes.
p

[discombobulated]

P...I can understand - and I don't at all think that classifies as crazy ;) you are right, it's just such a big adjustment for body and mind.

Although I eventually caved to using codeine, I refused raising dosages or using any stronger narcotics (for personal reasons, also). I can only admire your resolve in making it through those 5 yrs, and I'm so glad you're now in little pain & now able to enjoy it.

Thank You, so much, for sharing....

Take care.

[scolimich]

Hi Karen and Disco--

I was reading this thread...and I'm curious what kind of "nerve" pain you are having or have had....I don't know if my constant pain is nerve pain or not.

Could you describe it to me?? I really hope my doctor can help me get to the bottom of my pain. I just had my rods removed 2 months ago and I'm still have terrible pinching/gnawing pain in my right shoulder blade area...it's actually worse than before the surgery.

Please help!

Scolimich

[discombobulated]

Hey - great to see you back....but so sorry about your pain!

I have a couple of different types of nerve pains that I'm experiencing at the moment...a little hard to describe, but I hope this makes sense [hopefully others can give you their experiences, too]....

1. Down my right leg (originally both, but left has mostly settled) - long bouts of almost constant sharp, shooting pains, sometimes accompanied by the feeling that someone has shoved a skewer through my leg (perpendicular), just above the knee, lasting maybe a minute. The leg ones are esp. affected by position - lying on my right side sets them off something massive, left side's pretty good, & sitting up is somewhere in between. Also, shifting position often sets off a bout. I can feel the muscle/s that the misfiring nerves terminate in (the muscle/s jerk around).

2. In my back, mostly in/around the areas I can feel the newly installed connectors/bolts/whatever the heck that bilateral sticking-out-piece is + the muscle on each side that runs up each side of the spine. Very focussed, rather than shooting around, rather intense (sharp, sometimes burning), but generally short lasting. I also get the sensation of a sharp knife edge being held against (but not slicing into) that right muscle, maybe a length of 3"? They can last maybe 5+ minutes, but are usually reasonably ignorable for me. The back nerve pains can be kinda random (e.g., middle of the night), or most of the time very much tied to moving around a lot - e.g., an outing, esp. if it involves getting in & out of the car several times, or pushing my w/chair some [I'm still building up strength/endurance because I'm limited in how/where I can go - e.g., not on rocky ground].


----

We are both pretty early out of surgery still, I guess. I've just been put on Lyrica since the Valium is losing its effectiveness for me (though I can't switch until next week). Have you asked your surgeon about the pain? I sure hope you can get something to settle it. If ordinary painkillers (paracetamol, codeine, etc.) don't do much or anything for the pain, it's definitely possible it could be nerve pains, since these drugs won't work well.

Keep us posted hey...hopefully others will have some useful suggestions for you, too.

Take care.

[debbei]

Hi Karen and Disco--

I was reading this thread...and I'm curious what kind of "nerve" pain you are having or have had....I don't know if my constant pain is nerve pain or not.

Could you describe it to me?? I really hope my doctor can help me get to the bottom of my pain. I just had my rods removed 2 months ago and I'm still have terrible pinching/gnawing pain in my right shoulder blade area...it's actually worse than before the surgery.

Please help!

Scolimich


Hi There,

I'm 3.5 months out and I also get sporadic pinching/gnawing pain in my left shoulder blade area. I would say the gnawing pain has gotten much better over the last few months, but the pinching is still there, off and on. I'm not sure if that's nerve pain or not. When this happens, it helps if I get my husband or daughter to rub along the inside of the shoulder blade, and the pain kind of rubs away. It feels REALLY good when they do that.

I know that prior to surgery I had nerve pain down one thigh, and I would have to describe it as pinching, burning, itching and hurting all at once, and it was underneath the skin, but not the muscle hurting. It was the wierdest pain I ever had and I had a terrible time describing it to doctors. At first the GP looked at me like I had 3 heads when I described it.

[scolimich]

Hi Debbei and others,

Thanks for your responses.

Debbei: Did you have that pinching/burning pain in your shoulder blade ever before or is it just since your surgery??

Scolimich

[debbei]

Hi Debbei and others,

Thanks for your responses.

Debbei: Did you have that pinching/burning pain in your shoulder blade ever before or is it just since your surgery??

Scolimich

Scolimich,

I've only had that shoulder blade pinching/burning SINCE my surgery, not before.

[macky]

Yep, I still get that pinching,gnawing pain between my shoulder blades and its driving me nuts.

Macky