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View Full Version : Decisions, decisions ... or just ready for a new path ;-)



txmarinemom
11-13-2007, 08:09 PM
Hi, all ... pull up a comfy chair if you've an urge to read this post; it has gotten LONG ;-).

I've read this board for years, but have just recently registered so I can post. I've finally decided the risk of surgery has got to be better than what I'm living/see coming down the road.

Quick background:

- Dx with AIS at age 10 ... right thoracic curve (apex at T9) ... Boston braced (worn unfaithfully), curve is stable. Since adulthood, it has consistently measured 50 on the Cobb ... compensatory C and L curves.

- Whiplashed in '97 (smashed by a full sized truck - going about 55 mph - from behind in a Sunbird - going, oh, ZERO mph) - and a year later started the adventure of a periodic bulging disc between C6-C7. This has started happening on a more frequent basis (and in ever-increasing STOOOPID scenarios ... like DRYING MY HAIR). Also experiencing increasing fatigue pain from the scoli in the structural curve area (mainly between the shoulder blades).

- My job (programming) has me in tears by the end of the day if forced to sit at a desk. I'm working mostly from home for a while - semi-reclined in bed.

- Side note ... I've read Wolpert's book (my probable surgeon asked I do so before making ANY decision)

I'm in Houston, and consulted with Dr. Hanson at Baylor last month: I see many weren't happy with his bedside manner, but I REALLY liked him. (He does answer email, BTW ... I've seen someone write they thought he did). I didn't find him in the least bit dismissive of my pain, my concerns, nor any of the issues others found.

Am I saying he's the right surgeon for everyone? Not at all. We all have personal preferences and perceptions, and I just found him a good fit for me.

I never had to deal with his PA. I'm curious why anyone would if they found him offensive. Sorry to be blunt, but you pay that much for a consult, YOU get to write the "Rules of Engagement".

Will I get a 2nd opinion before ANY surgery? Absolutely.

I'd looked at fusion/instrumentation 10 years ago, and wasn't willing to take the crap shoot (the surgeon I consulted back then wanted to do an A/P approach) over my pain level at that point.

I was also told (by previous surgeons) I'd never play softball again: Before you laugh, I'm 39, and have played highly competitive fastpitch (since age 6 ... and still do) and tourney slowpitch. We're not talking co-ed church/rec league here - LOL. He thinks I *could* be back on the ball field at 4 months post-op ... even after hearing HOW I played ball.

Hanson is proposing posterior only fusion/instrumentation from T5-L1.

Best "guess-timate" (and I am fully aware there ARE no guarantees ... other than the NOW pain is getting worse, and I'm getting older) is structural correction to 20, and near elimination of the compensatories. Odds are also 70% chance of significant pain relief (yes, yes ... I know it can relocate, remain unchanged ... or even worsen). You get to a point where those odds are too appealing to pass up - and everyone's threshold varies.

I've read with interest the threads on hospitalization time, pain meds, infection (specifically MRSA), menstruation after surgery and recovery. I'll elaborate:

Hospitalization:

Hanson estimates 5 days in Methodist for me post-op. I see several have written that's short. Is it safe to assume this varies based on approach(es) and levels fused?

Pain meds:

I worked with a Pain Mgmt Specialist (an anesthesiologist) for 4 years in an attempt to get the chronic pain under control. FJ injections, Botox in a seriously knotted left trap, 4 rhizotomies (3 cervical - the nerves kept regenerating, and 1 thoracic ... only achieved a partial burn and I'm sure it only pissed off the MB nerves), etc., etc. Began with Vicodin, moved on to Norco with a concern for acetomeniphen toxicity ... then to Fentanyl (Duragesic patches - which I sweated off playing ball, even under bio-occlusive tape) ... then Oxycontin (which just made me hyper - and I'm *already* ADHD!) ... and finally Methadone. After 4 months on the Methadone I said "screw it" ... weaned off (merely for safety reasons) and decided to just deal with it.

What I found during all this is I am extremely NOT receptive to typical pain meds in typical doses (I'm 5'2" and roughly 105 lbs. - but require far more than my size would dictate to achieve *any* relief whatsoever). I had an ankle reconstructed May 2006 (severed 2 ligaments, um ... playing ball - what else?), and thankfully, my ortho was willing to rx the appropriate levels.

This is a HUGE concern with what lies ahead - just how much worse will THIS be, and can it be controlled? (yes, I've emailed Hanson this query ... just curious if anyone else has this odd quirk)

MRSA:

I developed it after breast augmentation in 2001. No abcess developed, but it was a freaky 2 months trying to stalk an Infectious Disease doc who'd see me as an outpatient.

Aside from the scoli, I have a VP shunt (28 years old - never revised) for hydrocephalus. You think MRSA on metal is scary, imagine thinking MRSA is on silastic tubing. The ONLY way to rid the infection on plastic is to remove the shunt tubing. I now just arrange for a Vancomycin drip *anytime* I have surgery. If you've ever had MRSA (or VRE, for that matter) you are probably still a carrier (it colonizes in the nares).

Menstruation:

Is there anyone out there who's on the pill year round to prevent menstruation? I am (and, yes, my Ob-Gyn rx'd it ... not self-medicating) - and wonder if the situation is different.

Recovery:

I'm single, stubbornly self-sufficient, and my kids are no longer at home. My Mom would come stay, but best case, she'd drive me nuts ~hovering~ ... worst case, she's 73 - and not all that "physically balanced" (inner ear issues and osteoarthritis). I can just imagine one of us falling and the pair going down like dominoes.

I do have friends who want to come camp out round the clock, but I'm a horrible patient in that I tend to want privacy to lick my wounds. Hanson also suggested home health care for an hour or two a day - and a well set-up home prior to surgery (he preferred the friend camp out option, BTW). If I need to opt for the "friend camp out", won't I know I need that before I'm discharged from the hospital?

__________________________________

I guess that's all ... for now - LOL!

Thanks to you all for your stories, your experiences, and I look forward to your feedback.

Best regards,
Pam

crepehanger
11-13-2007, 10:12 PM
Wow! I was very impressed with your fast pitch abilities. I honestly don't know how you've managed to get that kind of performance out of your scoliotic back. As you know, there are a few athletes here on the forum that have recovered and went back to their sports in what I thought was a very short amount of time. I can see why MRSA is a huge concern- You are doing some great research, and obviously, you do have a lot of health concerns to get worked out. As far as recovery, I went to rehab for 8 days and it was the best thing i could have done for myself, as I am alone a lot. I will be interested to see what you decide to do for yourself, as it is a hard recovery and mentally tough when you're used to being in charge of your life. But that can be a plus, as you can channel your energy into recovery. Good luck with your decisions and please let us know how you do....

txmarinemom
11-14-2007, 12:28 AM
Wow, girl ... T3 to sacrum. High five on your recovery so far, and your recovery to come!

As far as sports, "my scoliotic back" has been scoliotic for the majority of my life. It hurts whether I'm diving into a base head first (or diving at balls/tags playing 2nd) - or sitting on the couch ... eating bon-bons ... watching Oprah. (none of which I actually do ... except the first 2 eating red dirt things ;-).

If it hurts regardless, why not drag your a$$ up if you can? (that's Pam line to Pam, BTW).

And I swear I'd still suck it up if Hanson had told me "you're done with ball.".

Oh, but work, gravity and tears. Tolerable? Not so much ...

rainbow2010
11-14-2007, 05:52 AM
Part of how fast you recover is mindset. After my second surgery, I was determined to get back to normal routine as fast as possible. (I started painting a house 3 weeks postop.) Playing softball probably has you in good shape and that helps also. As for help at home postop...the first week you will sleep a lot and will want some help with cleaning and food prep. You can freeze a couple weeks of your favorite foods ahead of time for when you don't have help. It is nice to have someone who can run to the store for you. Rule is about 6 weeks of no driving and you can't drive on pain meds (if stopped, its driving under the influence). Good luck!

Singer
11-14-2007, 07:27 AM
I think the biggest thing I learned from this surgery and recovery is that even though you can prepare, you cannot predict or control any aspect of it. It is what it is: long, challenging and full of surprises. My experience was totally different from what I expected -- I never dreamed I'd spend a year doing intensive PT just to get some strength back in a severely weakened leg. I pictured myself going back to my regular routine by now (almost 5 months post-op), but that's far from the case. Being patient while my body heals has been a huge challenge for me. It's been very humbling! I'm 52, by the way.

Good luck to you as you decide what to do.

Suzy
11-15-2007, 06:49 PM
Hi Pam,

So you have been a lurker on the forum for a few years huh?! LOL! Glad you joined us! You probably know some of us by now then.

I think you hit the nail on the head with your comment about Dr. Hanson being a good fit for you. You MUST really like your Dr. Not only do you trust him with a major surgery but you will continue to see him for a long time after. My Dr. said it's a bit of a marrage.

My Dr. estimated 5 days in the hosp. it was 8. No complications, they just want to make sure you get things moving and can do a few things.

I too am on the pill year round and did not start my period after surgery. I kept taking them when I was coherent enough to swallow.

As for your pain meds you won't need to worry about sweating off the fentanyl patch you are pretty much just laying around, P.T. doesn't start till later. "That is the Cadillac of all pain meds" Per my pharmacist. I am sure your Dr. will work to find what works best for you, mine sure did. This surgery is bigger then your ankle reconstruction by far. As long as your Rx was adjusted to help your pain during that surgery then they will just need to do the same for this one.

The toughest thing is going to be you giving up your stubborn self- sufficiency. You will need help. Good news is you won't need it forever. This is the time to let your friends help. You are pretty young and obviously in good shape. That is going to help you A LOT! You will need someone within earshot for at least the first few days, or borrow a baby monitor. You may or may not want food the first few days. Freezing meals will help you later and friends won't need to think about what you might want. You can have a list of what is in the freezer. I'm sure you have read about how to prepare.

I was 43 when I had my T10 to L4 surgery. I have worked out for the past 15 years. I was wandering the house trying to get a snack here and there the end of my first week home. (To the panicked questions from my family what do you need?!) I sat with them a bit here and there within a few days home, not that I had much of a coherent conversation with anyone! I just got board. I drove at 5 weeks post op and shuffled around the grocery store shortly thereafter. I figured out the correct dosage of pain meds so I could drive safely.

We are here for you, keep the questions coming. Best wishes, Suzy

txmarinemom
11-15-2007, 08:18 PM
Suzy ... I'm sure I'm just weepy lately, but THAT response hit close enough to home I'm (damnit!) leaking *again*.

I'll admit (here), the surgery itself isn't my largest concern. When you're single and capable and content it's a HUGE quake on the foundation of "I don't need help".

(Yes, my friends have 2x4's ready to use as battering rams on my front door/beat me after I heal - LOL)

I'd written earlier I'd not dealt with Hanson's PA - laff ... I have, and didn't know it until today (I don't ask "what's your status in this office?" (unless they piss me off).

I realized when I called today he's the one I've been joking with on the phone; we had a 30 minute convo. More evidence towards the personal draw we all must surely feel when you find the right surgeon to trust with YOUR body.

I'm scheduled to see Hanson again Dec 4th (the holidays have trashed quick appts for *anything*), and will try to do an MRI below the curve (he wants to check for degeneration below) the same day.

I read earlier where someone wrote about being on the fence over surgery - and asked for guidance (and got pain). I won't say I've asked for a "sign", but I will say the increasing pain lately has guided me here.

Regards,
Pam

dawney
11-15-2007, 11:29 PM
I was told I would probably be in the hospital for 5 days but it wound up being 2 weeks plus 5 days in rehab, I had some sort of blockage. It really is quite a blur. I too am very stubborn but when I got home I was willing to take all the help I could get. My best friend besides my pain meds was a personal dvd player. I watched many seasons of charmed nip/tuck and lost. I have a boyfriend whom I live with and He would make sure I had what I needed. Everyone has a different experience and during your recovery you must listen to what your body is telling you. I am fused from t-9 to the iliac.

txmarinemom
11-15-2007, 11:39 PM
JFC .. I keep seeing everyone post how they watched television and couldn't read after surgery. I haven't watched TV for years (sorry, but I find IQ points dropping every time I even try).

Does this mean I should keep Dante, Plato and Vonnegut (all of whom I LOVE) close to simultaneously interest/lull me?

Susie*Bee
11-16-2007, 07:51 AM
I'm a reader too, and I've read probably at least 30-40 books during recovery. I think it depends on what you like to do. Some of the pain meds may limit your ability to focus somewhat for a little while, depending on how much you're taking and your reaction. Reading was my main activity post-op, but I know I didn't have any thoughts about reading while I was in the hospital--for 11 days. I can't remember if I started reading right after I got home or if it was another week or so... You might want some light/fun reading, at least to begin with, that you don't have to think too deeply about.

It's really normal to be concerned/scared about this whole thing. The surgery does change your life. But so does scoli. I decided to go with the surgery when I realized my quality of life was going down, would continue to, and wasn't going to improve ever on its own. You have to weigh the options-- or write the pros and cons on a list and evaluate. Your youth is such an advantage. Read the book by Neuwirth if you get a chance. Most of the patients he talks about are young, if I remember correctly. They seemed to recover pretty quickly. When you are younger, your bones are more agile also, and they usually get a better correction. If surgery is definitely going to be needed at some time, it seems like it would be best to get it done with and be able to move on. You are young and active and fit, so you will bounce back much quicker than someone like me. I wish you the best as you tackle this decision!

geo
11-16-2007, 02:07 PM
Pam,

As far as a hospital stay, my surgery was on a Wednesday and I left the hospital on Sunday. It does, of course, all depend on any complications that may occur. They also want you to have a bowel movement and a shower (atleast where I was) before you leave. I requested, yes REQUESTED, two depositories and an enema so that I could accomplish this, but couldn't take a shower until the incision drain was removed, which didn't happen until Sunday.

There are things you can do in the hospital to help avoid certain complications. They tell you to squeeze your butt cheeks and get up and move to help avoid blood clots, and breathe into an inspirometer to help avoid pneumonia. And seeing as how you don't have much else to do, you will probably welcome the assignments :)

My concentration levels were not so great while on oxycodone; I didn't read or watch TV in the hospital, and only read books like "Lipstick Jungle" over the next couple weeks. My brain was pretty sluggish and I don't think I could have handled Vonnegut!

I would go for the friend camp-out option too. It's not appropriate to ask a home health care person to run to Taco Bell when you're craving something spicy! Ha ha. But seriously, if you establish some parameters from the beginning, such as "please don't ask every 2 minutes if I'm OK, I will let you know if I need something" or a time schedule that allows you some help but also allows you some privacy, it should work for the probably short time you will need that type of setup.

txmarinemom
11-16-2007, 07:34 PM
Laff ... so what I'm gathering here is I'll be doped up enough to welcome my new hobbies of "butt cheek clenches" and blowing into an inspirometer ...

AND I can buy ONE trashy vampire novel because I won't remember I've already read it 20 times - LOL.

If only in real life could I be that cheaply/easily amused ;-).

Regards,
Pam

Susie*Bee
11-17-2007, 07:11 AM
Pam-- after a lousy night's sleep, your post made me laugh, so that was good. :) I didn't have to do any "butt clenches"--but I suppose every hospital experience is unique! To prevent blood clots, I wore these soft boot things that automatically massage your legs to keep the blood moving. My home is about 2 hours from the hospital I was in, and they had me stop mid-way on the way home to get out and walk a little to prevent the possibility of clotting. I think they pretty much have everyone use an inspirometer after surgery, not just spinal fusion patients. I never took a shower in the hospital. About the 9th day we did get my hair washed. But that was accomplished by getting it wet a little, lathering, and then trying to rinse the shampoo out by pouring water over my head, with a towel around my shoulders to soak up the water... I couldn't bend forward any. But it was oh, so nice to have clean hair! :D I really think a lot of how long your hospital stay is has to do with how much you were fused and how you are getting along. Even though I couldn't do much at all, the staff all thought I was doing well. And my doctor said I was doing better than most with that much fusion--and I'm assuming age, etc., factored in.

Do you really read vampire novels??? :eek: I would definitely be ready to read more than one book! You won't be that out of it. And it doesn't have to be super light--just don't expect to read something really profound and absorb it all. I'm an elementary school librarian, so I like to keep current and read older kids' books--and those were great reading for me. Lots of them are really interesting reading... Inkheart and Inspell by Cornelia Funke are great. I can't wait for the 3rd book in the series. I also think kids can't get nearly as much out of them as adults can. :rolleyes: I would recommend them to any adult who enjoys fantasy with a twist. Post-op I re-read the Harry Potter series so it would all be fresh when the final one came out in July, etc., to name just a few.

Guess that's it for now. Have a great day!!!