Briarrose update

[Susie*Bee]

Yay! Just got word that her surgery is over and all went well, via email from her sister-in-law. Here is the main info: She was in surgery for 7 hours. The surgeon said he was able to completely straighten her spine. She does not need to go to ICU-- because there was very little blood loss and she's doing so well. They might possibly have her sitting up by tonight-- and on her feet by tomorrow night. So, all in all, great news about Shell. :D

[Geish]

Susie*Bee...Thanks so much for posting! I'm so glad to hear that all went well and she is "straight" now. Please keep the updates coming as you get them.
Alicia

[debbei]

from her! Sounds like it went the best possible way that it could.

[Chihuahua Mama]

That's very cool...all those prayers and good thoughts landed exactly where they should have!

[loves to skate]

That is wonderful news about Shell. Let the healing begin, praise God.
Sally

[connier815]

Wow! That is great news! I'm so happy for Shell. Thanks for posting Susie*Bee.

Connie

[trishthedish]

If you need surgery at all, then Shell's sounds like the one you want! Thanks for the update, Susie*Bee. What great news!!

[briarrose]

This is Shell's husband. I'm sitting in the room with Shell reading all your kind replies and encouragement out loud to her. She is very appreciative of them all! Here is the latest news: Dr. Fras insisted that Shell stand and attempt several steps last night about four hours post-op. She was able, (with a little help) to take about 10 steps! Today was a busy day for her: She walked three times-the last time was to the end of the hallway outside the room! She spent two thirty minute sessions sitting upright in a chair. The doctor says that her recovery is proceeding far and away better than expected. The best news is that he estimates the current curve at about 5-7 degrees and the rib hump is greatly reduced! She is still on morphine and despite being completely exhausted has been unable to sleep for more than ten minutes at a time since she woke up from surgery. The pain is manageable with just the morphine which she isn't taking nearly as often as I think she should be, she's quite a trooper! More updates as they come.

[Susie*Bee]

I am SOOOOOO impressed! Thanks for the great update! Tell her I'm so very proud of her and know how hard she's working!!! She's a super inspiration! :D Big hugs, Susie

[debbei]

keep up the good work! 5 to 7 degrees is fabulous. I hope you continue your fastrack recovery. :)

[JoAnn5]

Wow!!! I'm proud of her too!! She is great!

Another example of why this surgery should be done while you are younger, in my opinion. Please tell her to keep up the good work and her spirits... she will be home buzzing around again in no time.

(((hugs)))) to you both! JoAnn

[Singer]

Wow -- that's just excellent. Thanks for the update and hope she can get some sleep soon! Can they give her Dilaudid instead of morphine? It's an easier drug to tolerate....

[Wishing]

Congratulations Shell on a very successful surgery and correction. That is just terrific. Good luck on the recovery process and in getting enough sleep. You are an inspiration.

[briarrose]

So it's 5:15 Thursday (is it thursday already??) and Shell is sleeping soundly beside me. She has been taken off of PCA morphine and put on oral percocet. Thus the sleeping. :) Dr Fras decided to have her fitted for a brace but he's not wound up about her having to wear it all the time. All of the RN's here at Lankenau have been amazing but there have been a few bad eggs among the techs which is to be expected I suppose. She and I have the process of getting her in and out of bed and into the restroom down to an art. She can stand and even walk without needing much support! Getting up and down out of a sitting or laying position is still very painful but it is getting noticably easier every time. All in all I'd call this an amazing recovery thus far and Dr. Fras agrees. He says she may be able to go home as soon as two days from now if she wants to and if things keep going this well. Thanks for all the encouraging comments!

[briarrose]

So it's Sunday and Shell is still in the hospital. Yesterday she collapsed to the floor while waiting for X-rays in the radiology waiting room. (I was waiting in her room when the code blue was called for the radiology department and I went to investigate. It was all very scary.) It was discovered that her hemoglobin level was very low, around 7.7. Also, she had been taken off of her IV before her appetite was fully back meaning that she wasn't getting many nutrients. Anyway, she was moved to a cardio level room to be more closely monitored. That dizziness has not gone away so the surgeon is recommending that she stay at least through tonight into Monday. She just got a 1 unit blood transfusion and we're waiting for the test to see if that helped things.
As far as pain, she wasn't getting any help from percocet or morphine or any comination of the two. She gave up and quit taking any pain meds and there ended up being no significant difference in pain on or off the meds, they were both so intense they made her come close to passing out whenever she tried to move. The surgeon got the point and decided to try tylenol & codine, we're waiting to see what happens with that.
Anyway, we were wondering if anyone here had any resources or insight into how to begin making physical activity a helpful part of the healing process. We don't want to hinder the recovery by too mch or too little activity and it's all very confusing, (more so because of the pain). If anyone has any experience or insight it would be helpful, I'm sure.

[Singer]

Oh my! That is extremely scary. She should not be enduring that much pain. Once I was off the IV meds, I received regular shots of Dilaudid (a cousin of morphine but better) before I had to move or go to get x-rayed and it was extremely effective. I personally feel that the answer for Shell is not to get off all pain meds this soon, but to insist that the surgeon keep trying with different combinations. What helped me also was to take long-acting Oxycontin (I think 20 mgs.) and then take Percocet on top of that.

Hopefully the transfusion will help with her hemoglobin levels.

As far as activity goes -- certainly while you're in the hospital just getting up and down to go to the bathroom or sitting in a chair or walking down the hall is plenty. Be sure to get very specific instructions from the surgeon before discharge becaise they tend to have widely varying opinions about when to start PT and what exactly their patients' activity levels should be.

Good luck and tell Shell to hang in there.

[Chihuahua Mama]

She collapsed to the floor while waiting for X-rays in the radiology waiting room.
As far as pain, she wasn't getting any help from percocet or morphine or any comination of the two. She gave up and quit taking any pain meds and there ended up being no significant difference in pain on or off the meds, they were both so intense they made her come close to passing out whenever she tried to move. The surgeon got the point and decided to try tylenol & codine, we're waiting to see what happens with that.
Anyway, we were wondering if anyone here had any resources or insight into how to begin making physical activity a helpful part of the healing process. We don't want to hinder the recovery by too mch or too little activity and it's all very confusing, (more so because of the pain). If anyone has any experience or insight it would be helpful, I'm sure.

OMG. This is my scary hell in two weeks.

Shells Husband...I would say at this point you need to be SHOUTING to her doctors and nurses about her pain meds....forget the physical activity or healing, this girl needs help with PAIN and NUTRITION. I'm no expert, but I think that simple Tylenol and Codeine in pill form would be tantamount to pissing in the ocean for releiving her pain.

"Physical Activity and Healing and Hindering???" When you see your loved one crashing to the floor to take X-Rays? It's time to step in. I'm no expert, but your wife depends on you. Do something to help her and don't believe Hospital Staff!

OMG, I am going to beat my children over the head to make sure this doesn't happen to me.

[txmarinemom]

Don't worry right now about hindering her recovery with lack of activity. Recovery can wait until she's not *collapsing*. Getting out of the hospital in ___ days is so ridiculous anyway. She needs to be WELL first.

Why did they not know her levels were so maladjusted??

Get the IV back IN, get her transfused, get her levels up, and get her pain under control.

Get ahold of her Dr. and DEMAND a plan. When she's that weak and x-ray comes for her, say NO. She needs you to be her voice right now.

Be LOUD.

[connier815]

I'm so sorry that Shell is going through all this. Please let her know that I'm thinking of her and praying for her. I agree with above posts. You're her advocate. She's lucky to have you there to do what she can't right now.

Connie

[Susie*Bee]

I sent you a PM last night, but I'm not sure if you saw it. Did things settle down any over night? I'm so sorry Shell has been having so much pain and hope that has been taken care of by now. She (and you) continue to be in my thoughts and prayers.

[debbei]

The poor dear, I hope she can get some relief. She is in my thoughts & prayers.

[briarrose]

Susie B-I did get your PM and it was very much appreciated by both of us as is your kind encouragement on this thread. For some reason I can't send PM's on this blasted laptop right now.

Dilaudid is the only medication that seems to have any effect, they've tried every other combination known to man, she is resistant to them all. A pain specialist is meeting with Michelle tomorrow morning to discuss heavier medication; Dr. Fras does not like prescribing take-home meds stronger than Percocet, he likes to leave that up to pain specialists.

The fall might have triggered the lower back pain which is what is mainly plaguing her now. Very frustrating. She did end up getting x-rays the next day and they show no damage to her newly installed hardware or her spine, thank God.

I agree with everyone who said that I'm in the position to tell the nurses and doctors and pct's and all the others what my wife needs and doesn't need. She's timid to begin with and depends on me to articulate and proliferate the knowledge and importance of her needs. It's a sobering responsibility and one that keeps me on my toes. If I ever drop the ball on that, Shell tells me that Pam will give me a kick in the pants. :)

Her hemo is up to 9.7. Acceptable, but not stunning. She's still feeling rather weak. Pam, I think I confused timelines before. They knew about her low hemo before, it was at 7.7 the day before she was carted off to radiology, but her vitals were otherwise very good and neither her nor I saw a collapse coming before hand or we would never have agreed to the increased activity of that trip.

The one thing I don't understand is why, whenever there is a shift-change, we have to go back to basics and explain Shell's plight to a new set of ears every 8 hours or so, it's like no one talks to each other about Shell's status outside our room. It also makes me wonder why, in 7 days, we've only had a repeat nurse once. That's where my patience is tested, but fortunately we have had very nice and sympathetic RN's throughout our entire stay and I've had no trouble explaining things to them thus far, successfully.

As for increased activity, I agree that it isn't the issue at the moment. It will be absolutely crucial soon, however, hopefully sooner rather than later, and I appreciate the feedback I have gotten as to what to expect when it become more and more important. I try to deal with the current situation and look ahead at the same time so as not to get slammed with something down the road.

Thanks again for the support!

[Susie*Bee]

So glad to get the update and hear things are a bit more stable than they were. Sorry about lack of communication between shifts-- how frustrating for you to have to go through it all over and over. Hopefully the pain med thing will get figured out when she meets with the pain specialist tomorrow. Hang in there-- you're doing a good job in a very challenging situation. Give her my best and remind her I'm praying--for both of you.

[briarrose]

Hi everyone,

Thanks so much for all of the prayers and encouraging words. This hospital stay has not been easy since my fall on Saturday. I STILL haven't seen a pain specialist and it's been well over 36 hours. I ask all the time too. My white blood cell count was up, so now I have to have all these tests done to make sure there is no infection in my incision. Turned out I had a UTI, so hopefully that was all that was wrong. I had an MRI today to check for infection and I'm having a chest x-ray tomorrow.

I kind of freaked out last night when I asked for some pain medicine. They had given me injected dilaudid 3 times and it actually worked, so I was expecting a 4th. The nurse came in and said the doctor wanted me on oral meds. I starting crying like crazy. My pain was at 9-10 and I was going to have to wait another 45 minutes until it kicked in. Also, the nurse was instructed to give me one fourth of a 2 mg dilaudid pill. She felt awful and ended up giving me half of one instead and a morphine injection 20 minutes later. I just don't get why I haven't seen a pain specialist and am therefore stuck here until I do.

Sorry to sound frustrated and annoyed, but I was not expecting this horrible pain that refuses to be treated. If I hadn't fallen, I would most likely be home by now.

I just wanted to update everyone a little bit and vent some too.

Take care

Shell

[geo]

Geeeeeez! I haven't been on here in awhile, so I'm just reading about your ordeal, and I am so sorry you are going through all this. It was definitely time for a transfusion if your hemo levels were that low, atleast they got that right....

I hope that they have found a way to help manage your pain since your last post - the kind of pain that comes from this surgery is nothing you should have to endure for half an hour, much less days. God, I am sooo sorry to hear about all this, my heart just goes out to you.

Hopefully treating the UTI will help with your lower back pain. I remember wondering why so much of my pain was in my lower back, since the surgery had been focused in my thoracic spine, but it was explained to me that it was because the compensatory curve down there was straightening out too, and the muscles were being strained.

Just know that there's lots of us thinking about you!

[briarrose]

Shell is home and sleeping comfortably. She was discharged at 11:00am today and the drive home was fine.

Her pain is under control. Those bastards from pain management never showed up over the course of 2 1/2 days despite frequent bugging so Dr. Fras finally just wrote her up a prescription for some really strong form of percocet, her pain level is maintaining 6-7 while moving 4-5 when laying down.

There were some hellish days in there, but things are better, now. Please continue to pray or think of her, whichever your preference.

I'm making her eat more than she would normally, she hasn't had much of an appetite so far, which is understandable, but she has to get those nutrients to heal.

I'm sure she'll want to keep you all informed in her own way through these next weeks and months, I just thought I'd update you on that. Thanks for all your support and encouragement for the two of us thus far.

Shell's husband signing off.

[Suzy]

Next time someone asks what you might need (or if you get a chance to run to the store.) have them get Shell some ensure drinks. I had NO appetite AT ALL due to the pain meds and that helped me get the nutrients I needed.

I am so glad she if finally having her pain controlled. That is tough till it gets figured out. She is in my thoughts and we can't wait to hear about her recovery. It HAS to go smoother from now on! Best wishes, Suzy

[debbei]

I'm glad that she's home and in better control of the pain. I will be praying and thinking of you BOTH.

Take care of yourselves,

[loves to skate]

I'm glad Shell is home and feeling a little better. What an ordeal to have to go through. It is a tough enough surgery without having to deal with the incompetence of the Pain Management team. You both will definitely be in my prayers. Sally

[JoAnn5]

Make sure you 'feed' her some sort of laxative too.... I swear the constipation can be as bad as anything else in this horrendous ordeal. One good one to try is Miralax, which is a powder you mix in a drink... no taste at all and you can take one every day for as long as you need to... and i suggest that as long as she is on pain meds, she needs it!!

Still praying for y'all!
JoAnn

[myachingback]

[QUOTE=Suzy]Next time someone asks what you might need (or if you get a chance to run to the store.) have them get Shell some ensure drinks. I had NO appetite AT ALL due to the pain meds and that helped me get the nutrients I needed.

Glad she is hangin in there and improving! Suzy mentioned ensure, you may also consider Adkins diet drink, it has a lot less sugar and is really truely actually tasty when cold! I can't have sugar and for me this is great. Also might want to add some Benefiber to it which will help keep things running smother.
Have not had time to keep up with y'all lately, seems all I have time to do is eat, excersize, and groan!
I Send My Best Wishes For A Speedy Recovery,
Chris

[loves to skate]

I just googled Miralax and copied this caution. Most important fact about MiraLax
Unless your doctor directs otherwise, do not use MiraLax for more than 2 weeks. Sustained, frequent, or excessive use can upset the body's chemical balance, and can lead to dependence on laxatives. My Dr. recommended a stool softener instead of a laxative such as senecot or colase. Senecot caused me much abdominal pain so I switched to colase which worked without the pain. Do whatever your Dr. tells you to do or what works for you. Sally

[JoAnn5]

I'm sure the companies have to print cautions just to cover themselves. My doctor prescribed Glycolax for me before the OTC version called Miralax became available. Doc said that it was so gentle that i could use it every day from now on if i needed to. Of course i don't need it any longer since i rarely take pain meds now, but i keep some on hand in case of occasional problems. My 88 yr old mom was also prescribed it after her broken hip surgery. Just use it sensibly i think. :)

[briarrose]

Hi everyone!

Thanks for the suggestions about drinks and fiber/laxatives. I was given Boost in the hospital (I guess word got out that I wasn't eating) and I try to drink one of those a day. I've been taking Benefiber for a couple of weeks thanks to the suggestion of myachingback awhile ago and it helped me tremendously before the surgery. I've doubled up on that and I'm taking Miralax once a day to keep things as regular as possible. I also have some senekot here and may take one of those a day as well.

Eating is still a big problem. My husband gets really frustrated with me because I barely eat anything. Last night, I actually ate a decent sized meal, but then threw up later. It was discouraging for both of us. It's also really frustrating because I've lost about 10 to 15 pounds in my legs/arms/chest/butt (I'm happy about this) but gained it all in my stomach. I'm afraid to measure how large my waist is, but it's really upsetting. It has to be at least 4 to 5 inches larger than what it was and I've never had a stomach, always an hour glass figure and now I'm the opposite. Will this go away? This sounds awful, but I'd almost rather have a crooked spine than an unnaturally large stomach. I guess I'm bloated, but I don't really feel that way. I'll probably have my husband by me some Gas-X today. Maybe that will help. Has anyone else had this stomach problem from a posterior surgery? Did it eventually go away?

Thanks

Shell

[Susie*Bee]

Shell-- you poor thing! What a struggle you're having with food! Don't worry right now about the swollen abdomen. I think lots of people are swollen after this surgery... I was. And that's why they tell you to take lose fitting clothes to wear home from the hospital. There has been major trauma to your insides, and that long time of being on your stomach during the surgery. I feel fairly confident you'll regain your lovely hourglass figure after awhile. Sorry you are losing so much weight though. Just keep at it, taking baby steps. And it's actually better for you, especially right now, to be a grazer... eating small little meals, several times, rather than trying for the traditional sized meal. That may help you keep it all down better too. Hugs, Susie

[Sherie]

Shell

Glad to hear you're doing better. Sheena had a very swollen abdomen in the hospital, she looked to be 5 months pregnant but it all went away probably within 2-3 weeks. She lost about 10 lbs too and has gained all that back and looks great now. Her appetite returned to normal at about 2 months. Don't worry, it will all straighten out with a little time.

Take care

[Geish]

Hi Shell,
I found that when I got home I had a hard time eating too. I would get maybe 1-2 boost/ensure drinks down me a day, about a half a drink at a time. I would also eat maybe a half a yogurt or maybe a snack sized chunk of cheese through out the day...that was it for the day! I wasn't eating much at all. I just couldn't eat more than a few bites at a time and I was done. Even when friends brought over beautiful meals for my girls and me I just couldn't eat. My appetite finally returned in full force at around 4-5 months post op. Prior to that I found I could eat maybe half of what I would normally eat pre surgery at a sitting, but that wasn't until close to a month or so post op. It will get better, it just takes time. I lost close to 15 pounds and my face looked a bit cadaverous if you ask me. I eventually gained most of it back, most of that in the last month and a half. Now I look like me again. I am also going to guess you are bloated and don't even realize it. I have no doubt once your internal system gets somewhat back to normal your waist will go back down, probably smaller than before since you lost so much weight.Keep your chin up and stay strong!
Alicia

[myachingback]

You may want to try yogurt, it will put "good" bacteria back in your system. If you don't like it try the Fiber 1 yogurt, my wife says it is less yogurty tasting! Something else you may try is acidolophus sp? capsuls. It does the same thing but is in a capsul. If you have trouble swallowing a cap; with liguid in your mouth look down then swallow! The cap floats and that makes it work in your favor. Wow I'm waxing intelligent here, you'd hardly know I was partially lobotomized!
Only kiddin, Great you are doin good!!!
I'm pushed for time,
Chris

[Singer]

Hi Shell,

As others have said, the swollen stomach and the lack of appetite are completely normal and resolve in time. I looked pregnant for at least 2 months afterwards. Try not to push the eating thing. What helped me was eating soft, bland things like cheese, yogurt, pudding....I also craved peanut butter and jelly sandwhiches. Your body has taken a beating and just can't handle digesting full meals yet, but as long as you get calories and some protein, you're fine. Also, just to warn you, Senakot gives lots of people upset stomachs -- it did me.

[briarrose]

Thanks for the encouraging posts that my stomach will eventually go back to normal. I can't wait! Thanks to everyone for ensuring me that the swollen abdomen and lack of appetite are normal. I'll probably be on here a lot worrying about all sorts of things.

I threw up again today and it was a few hours after eating. I guess it could be from the pain medicine. I also tried to cut back on the pain medicine, but I quickly learned that I still need this same amount for now.

Thanks again!

[Chihuahua Mama]

I hope you round a corner very soon where you feel like you can hold food down and sleep well, and nobody's telling you what to DO! It will come.

I'm wondering what your pain levels are now and what type pain meds your taking and how often. Also, can't you ask the doctor for something that PREVENTS upset stomach or vomitting? I remember a drug that could be taken in a suppository form, a few years ago, but don't recall the name.

Ask your doctor - call the office and tell them - don't just "accept" what's happening when you know it's not right.

Take care, and I'm thinking of you.

[JoAnn5]

another (yet another....lol) thing that you might try is Activia... It helps regulate things with a good bacteria for the digestive tract. Something smooth and soothing like that always helps my heartburn. Could be your pain meds are tearing up your tummy, so just try to soothe it and make sure you don't take them on an empty stomach. The swelling will go away eventually, i think we all had it too. Between that and not being able to wear a bra... because of the clasp irritating the incision.... i was NOT a pretty sight for 2-3 months... but i couldn't have cared less...lol

[briarrose]

I will definitely look into Activa JoAnn. I have actually been wearing front close sports bras since I left the hospital on Wednesday. They have about 6 clasps in the front and it doesn't irritate my incision. It's not the greatest thing, but I knew I would have to wear something.

Thanks for the thoughts Susan. I know your surgery is going to go well. My big thing to tell everyone now is to have some sort of pain management plan set up. I had never been on narcotics and never had a surgery so there was no way of knowing what would work for me. My pain is manageable, probably at around a 6 when I'm walking around and 4 laying down. I'm currently taking 2 percocet every 5-6 hours that has 10 mg of oxycodone in each pill (the one they were giving me in the hospital only had 5. I'm still baffled by this). My surgeon only gave me 60 pills so I'll be out on Tuesday but I do have vicodin here but I don't even want to go down the road of trying it when I know the higher percocet works. I'm reluctant to call me doctor because of the hard time he gave me in the hospital about pain meds. When I was discharged, he said he couldn't order this percocet over the phone; the prescription could only be picked up at his office. I'm not going back until the 16th. I'm going to have my husband call the office this weekend and see if something can be figured out. I feel like my doctor doesn't want me on anything. It's really frustrtating. I'll have to ask about anti-nausea meds too. Thanks

Shell

[loves to skate]

Hi Shell,
My Dr. would only mail me a prescription for the oxycodone (percocet,vicoden - all different names for the same thing), so you need to get a call into his office right away even though it is Saturday so you can have that prescription in hand by Tuesday. I know that is part of Massachusetts state law that a prescription for a controlled substance cannot be called into a pharmacy. Also, pharmacies don't keep controlled substances in stock, so it takes another day to get the prescription filled. If you have vicoden at home, you can always take 2 of those to be equavalent to 10 mg. percocet if it isn't possible to get a prescription in time. In the hospital you were probably getting a longer acting oxycontin (12 hours) in addition to the short acting 5 mg.percocet (3 hours). Can your primary care Dr. help you out in a pinch? Unfortunately a lot of Dr's don't like to write prescriptions for controlled substances since a lot of people abuse them. I hurts those of us who don't abuse them and really need them. I had to take oxycondone for 2 1/2 months post-op and had no appetite until I was finally off of them. Good luck! Sally

[sccrm08]

Shell,

I think you need to call your Dr. or you may end up needing to go to the ER on Tuesday for pain meds. I tried to just stop taking all the pain meds I beleave it was Percocet, and Valum and My pulse went up to about 120. When I called my Dr. he told me he did not want me off the pain meds yet and he wrote another RX which we needed to go in and pick up but he kept me on them full strength for 3 months and slowly cut back for 4 weeks, until I was off. He never made me feel like I should not take them, I was in a bigger hurry to come off than he was as I have family members who abuse perscription drugs and they make me very nervous to take. My Dr. felt the pain should me minimal after the surgery if they can keep it under control with the meds.

Best Of Luck

[Singer]

Shell, by law, your doctor can call in a three-day supply of pain meds, but a script for any amount over that must be mailed or picked up in person. I was on Oxycontin for over 7 months -- believe me, I needed it -- and renewing my prescription was a lot easier when I "hired" a pain management specialist to oversee the whole pain-meds process. Ask your surgeon or your primary care doc for a referral to one in your area.

I was on long-acting Oxy and short-acting Percocet, and I withdrew from the Percocet first. Then after a couple more months on the long-acting Oxy, I withdrew from that. By the time I went off the Oxy I was physically dependent and had a few uncomfortable days, but it was definitely manageable.

I had never taken narcotics before and have a lot of respect for them now. I could NOT have functioned without them.

[myachingback]

I take a Rx (suppository) drug named Phenergan when I have to. It is for navsea and vomiting, and you don't have to worry about vomiting it up. Be sure to ask Dr. and pharmacist (2 opinions!) about drug interactions before you take any? Couldn't remember Activia the other day but wife swears by it.
Our best to you,
Chris

[txmarinemom]

I take a Rx (suppository) drug named Phenergan when I have to. It is for navsea and vomiting, and you don't have to worry about vomiting it up. ...

Thanks for mentioning this, Chris. Shell, an added bonus is Phenergan makes you sleeeeeeeeeeepy. I bet you could use some good rest about now ... :(

Geish's way of dealing with keeping stuff down is really good too ... just teeny snacks (a few bites) here and there. Be sure to keep a food (and especially liquid) diary so you know exactly what you're able to hold down each day. It's tough to know what your net intake actually is when you don't really know how much you took in that "stuck".

My mom had a SEVERE stomach virus last year, and I was actually keeping track of "1 grape", "2 oz. ginger ale", "1/2 Pedialyte popsicle" (BTW, these are not bad tasting at all, and can help boost your electrolytes and overall fluid intake) so I'd kind of be able to gauge when she needed to go to the hospital due to dehydration risk.

Hang in there, sweetheart. Hopefully all this will be a distant memory before you know it!

Regards,
Pam

[briarrose]

Thanks for to everyone for the pain medicine suggestions. I'm on Vicodin now and it's working well except all I want to do is sleep. How much did you sleep after the surgery? I feel like I sleep 12 to 14 hours a day!

I now able to keep food down too and my appetite has increased a little. Thanks for the popsicle suggestion, Pam. That was a great idea and I love popsicles!

I guess I'm doing pretty well. My only real problem now is the constipation from the meds. I'm hoping Vicodin will be a little better than Percocet. I'm going for x-rays in a few hours and I'm excited about seeing them. I'll try to post them sometime this week.

Shell

[txmarinemom]

... all I want to do is sleep. How much did you sleep after the surgery? I feel like I sleep 12 to 14 hours a day!

I think I took a solid 2 day nap when I came home, Shell. Listen to your body right now, and if it says "Hey, you ... SLEEP!", it means it.

Seriously, everything else will wait. I know you're anxious to start on recovery, but you've been through a LOT. Your body needs food, fluids and lots of quality rest right now.

It may not feel like you're doing much, but recovery starts with a LOT of "doing nothing". :)

Regards,
Pam

[Geish]

It's kind of weird but I don't think I napped at all or slept more than 8 hours at night after surgery until about week 4-5 post op. I think as I increased my activity my need for sleep increased. I wasn't cleared to do more than short walks for about a month. I wasn't allowed to get on the treadmill and as it was the middle of winter here I wasn't going out on the icy roads or even my icy driveway. Now 6 months post op I still nap! Even something as simple as going to the grocery store takes a lot out of me as I usually have to go by myself and buying groceries is a lot of work! Stay strong Shell!
Alicia

[txmarinemom]

Now 6 months post op I still nap!

Guilty. Me too - LOL!

[Theresa]

Shell,

Don't worry about sleeping too much! Just remember that when you are awake try to move around the house some. I would walk a big circle through the dining room, hall, living room, kitchen. Don't worry if you have to lay down and take another nap after walking around the rooms a few times. Anything that you do right down helps to keep you from getting to stiff. Just remember that your body right now is working overtime trying to heal itself and to adjust to their new positions. So even if you aren't doing anything physically on the outside, the inside is working 24/7!!! I take Colace everyday to help with the issues of constipation due to the meds. Just keep telling yourself to take it easy, move when you can, and rest whenever you feel that you need to!

[briarrose]

It's good to know that sleeping a lot is normal. I feel like such a bum though. I'm used to keeping busy (cleaning, cooking, working, studying) but now I'm home all the time not contributing much. I should enjoy this freedom while it lasts :) .

Today has been a good day. I'm up and walking around a lot and have more energy than I've had since the surgery. I'm having one issue with my arm and it seems to be related to an IV. My arm hurts really bad from the elbow up to my fingers whenever I move it, touch or try to grab onto something. Has anyone else had this problem? I guessing it has something to do with a nerve that was hit. I'll see my doctor on Monday so I'll ask him about it.

Shell

[briarrose]

Just wanted to let everyone know that I passed out again today. I was home by myself and was taking a shower (I won't be doing this by myself for awhile) and started to feel really nauseous. I quickly finished my shower and sat down feeling horrible. The next thing I knew I was waking up on the floor of my bathroom in a very twisted position. It took me a long time to get up but I managed. I called my husband and he came home from work early to spend the day with me. I called my surgeon and he said to go to the ER if my pain was too bad. Thankfully, it was only really bad for about 2 hours so I didn't go to the ER. I don't understand why this happened again. The next time I feel like that again, I'm going to lay down on the floor so I don't fall!

Shell

[txmarinemom]

Shell, I'm going to yell at you for a second ...

WHAT THE *HELL* ARE YOU THINKING SHOWERING BY YOURSELF?!!?

Yes, I did it early - maybe at 2 weeks - but I had no other option (like waiting for my non-existent husband to get home from work - you CAN and SHOULD) and had not even come CLOSE to a history of passing out.

There's something going on with the consciousness loss (over-exertion, not enough food, blood loss, electrolyte imbalance, meds ... SOMETHING.). Demand your doctor figure it out. IMMEDIATELY.

This is NOT what you should be experiencing.

In the meantime, stop pushing yourself. You're obviously not ready to return to normal activity if you're waking up on the floor.

Regards,
Pam

[Theresa]

Shell,

I didn't shower by myself for a while after I came home. It was too exhausting!!! When I did shower, I did it sitting down. By time I was done it was straight back in the bed for a 2 hour nap!! I would have someone else blow dry my hair. You must remember, even the simply things are a hugh job for you right now!!! If I did one thing for the day (ex: shower or fix and eat my own lunch) that was all I did!!!! This is a very looooooooonnnnnnggggggg and sllllllllllooooooooowwwwwwww recovery!!!!!!!! Please try to remember this and attempt to do only one thing a day for right now. I turned my air conditioner down and stayed in bed. Every couple of hours get up and move a round and fix a snack. Just crackers with peanut butter on them will help. Please take it easy and rest!!!!!!!

[Susie*Bee]

They said it well, Shell. This is a time to let your mind know that your body has to take it really s-l-o-w, little baby steps, as you recover. I, too, had to rest after taking a shower, even when using a shower seat. It totally exhausted me. And I didn't try anything much when no one was home with me for awhile... just like Theresa said. Hold back a little and be content with the ability to putter around and do little things. Soon you'll be stronger and more able to do some things that are a little bit more challenging-- but even then, don't try them when you're by yourself. (Like, when I first started walking outside, I walked with my husband, next I only did it when my husband was home, but he didn't need to walk with me... then I advanced a little to the point where I'd walk when he wasn't home, but his work is 1/4 mile away, and I would let him know when I started my walk, and when I got back inside-- and how long I planned to walk... just in case he didn't hear from me. It was a long time till I dropped all of that and walked without telling anyone. Actually, sometimes I still leave a note.)

Yes, it does sound like you need to discuss this with your doctor. It might be that you are getting up too quickly-- and sometimes a good hot shower or bath can zap you, so don't make it too hot. Please be careful-- and let us know how it's going. Hugs, Susie

PS--that's a good plan you made, -- to lie down if you feel faint. Hopefully it won't be needed...

[txmarinemom]

Yeah, I'll never forget that first shower I took at 2 weeks post-op ... I'm not sure I've ever been SO tired. I did wash my hair (I couldn't stand it like it was on more minute!), but by the time I was done, I really WAS done ... and didn't even have the energy to dry it.

The next week, I was feeling a lot more energetic (I'd been training for the 5K, and think I was up to walking 1.5 miles). My neighbors were still watching my dog, and I decided to treat them to dinner at a nearby restaurant in appreciation. I needed a shower AND hair drying - and I mistakenly thought "no problem!".

By the time I got done drying my hair, I was in a clammy sweat and white as a sheet. It COMPLETELY zapped me. I'd planned to even curl my hair, and that quickly lost importance.

Who would have thought with all the walking I was doing that a simple shower and hair drying would have that effect? I certainly didn't, but I couldn't have been more wrong. Oh ... and I forgot to mention, I also showered sitting down. I never bought a bath seat ... my tub was deep and wide enough I was able to use my heavy duty kitchen utility step stool, and sit on the top step. Pretty redneck, but it worked very well!

Shell, I hope you know I was only yelling at you because the thought of you falling by yourself like that scared the sh** outta me. The thought of you hurting yourself after all you've been through, and having to start again from square one is something I'm sure no one here - including you - wants to see happen.

I know you want to hurry up and be well, but you can't push yourself so hard you cause yourself to LOSE progress. Please talk to your surgeon and work with him to find out why you're passing out: It may be something simple, but it's certainly a sign something is NOT right.

Do you realize how lucky you were you *didn't* really hurt yourself? Not only could you have damaged your fusion, you could have cracked your head open, broken a limb, cut yourself badly ... and had to lie there until your husband got home if you were unconscious - or simply too hurt to make it to the phone.

Promise no more solo showers - or anything that risky - for a while until you identify and remedy this?

Regards,
Pam

[briarrose]

I went to see my surgeon yesterday and we both think I passed out from the combination of Vicodin and trying to do too much. Now I'm back on Percocet and I don't have that dizzy hazy feeling anymore. My surgeon said that he's never had any of his patients pass out. I always have strange health problems and I almost feel like a burden to him at this point. He said my incision looks great and is healing really well. He measured my curve at 15 degrees. He originally thought it was smaller but 15 is still great! My shoulders are still uneven but I'm going to try to work on that in a month or so. I had that side shift to the right before which is now gone, but now I'm kind of shifted to the left. I hope this goes away.

Pam - No need to feel bad about yelling at me. I needed to hear it. I'm impatient and extremely indepedent. Passing out was a wake up call that I need to take it easy and stop rushing my recovery. I am very fortunate as I could have ended up really hurt.

Theresa - Thanks for your concern and for sharing your experience. I've really cut back on the amount I do a day. I was taking showers standing up but since I passed out, I decided to use the shower seat my grandmother let me borrow.

Susie - My mom had mentioned that hot showers aren't good if you aren't feeling well. The water was hot, but I didn't feel like squatting to change the temperature. That definitely could have contributed to my passing out. I'm trying to take it easy and learn patience. It's hard!

Thanks again ladies!

Shell

[Susie*Bee]

Thanks for posting, Shell! I was about to PM you, as I was feeling concerned. It sounds like all is going well now-- so glad he changed you back to the percocet. (And I KNOW you are too!) ;)

Don't worry too much about the shoulder discrepancy right now, but do work at it a little when you feel up to it. It takes awhile for all those muscles to re-learn where they should be aligned, as they've had years of doing their thing based on your former curve. My physical therapist had me look in the mirror and try to get the "feel" for what was correct. At first it felt like I was over-correcting, even when I wasn't. That's why the mirror is good-- it tells no lies. :rolleyes: After awhile it started feeling right. Keep in mind that I didn't even start with that therapist until I was about 6 months post-op. I'm sure it would have helped to notice that sooner, but it didn't happen-- and no one pointed out that I was a little off. (It wasn't much, just a little...)

Your new measurement is terrific! You must feel so great about it all-- and all the progress you've made in such a short time. Keep up the hard work! :) Hugs, Susie

[ca-native]

My shoulders are still uneven but I'm going to try to work on that in a month or so. I had that side shift to the right before which is now gone, but now I'm kind of shifted to the left. I hope this goes away.

Shell

Hi Shell,

My daughter's shoulder did exactly the same thing after surgery - pre-op her right shoulder was higher then post-op the left shoulder went higher. She is now three months post-op and the left shoulder is now more even with the right shoulder - the doctor said it could take up to nine months for the shoulders to even out as the back muscles adjust to the spine's new position.

I had to smile a little when I read your sentence about the shoulder. I contacted Pam (txmarinemom) in a panic right after my daughter's surgery about the same thing and she reassured me that it was ok - and as usual, she was right!

Best wishes during your recovery,

[titaniumed]

Hi Shell

Everybody has covered just about everything. You need to stop falling down. You dont want any surprises at the Drs office here in the future.

If you are taking opiates, watch your bowell movements. You should go every day. If you miss a day, on day 2 it becomes a bigger problem. I had morphine constipation and had to drop a bomb (x-lax). believe me, that was excruciating! Eat cereals with grains, and fruits to keep things going. Refrigerated canned pears works good also, and soothes the throat.

You will need protein, get some roast beef for sandwiches and some whey protein powder(vanilla)to help build your muscles. Protein smoothies you can wing, 2 scoops of protein powder, 1/2 cup low fat milk, 1 banana,20 blueberries,10 strawberries,10 rasberries,15 almonds,1 yougurt, 1/2 apple, blend for 3 minutes,tastes real good and is real good for you. Lotsa sugars.

Buy your berries frozen, its easier.

Your body is working overtime right now. It needs energy and sleep and a lot of it!

Get some good vitamins also. Keep a daily diary of what you do and what you take and bowell and sleep times.

Good luck
Ed

[Peachy]

Hi Shell,

I'm so glad your recovery is moving along so much better now! I've been away for a while, but now have been catching up on your progress. Hope everything just goes great for you from now on!

Ed,

Thanks for posting your recipe for Protein Smoothies. Sounds yummy! I copied the recipe to keep in my kitchen so it'll be handy after my surgery later this year.

Peachy

[Suzy]

Shell,
I have to tell you this patience IS one of the toughest parts of this recovery. I am SO not the lay around the house type. I was so impatient and wanted to do so much I drove myself crazy. I also wanted to start P.T. sooner then My DR. wanted me to. I had to force myself to take it easy. Sound like any one you know?? HMMM, Shell? The days will pass soon enough and you will be able to grocery shop, clean, cook and do laundry again, wondering while you are at it "what was the big hurry to get back to this?" LOL. Stay off the floor, it might need to be mopped! All my best.


Ed,
WHAT the heck do you mix all that in? Cement mixer? That is a HUGE recipe! LOL! I do protein shakes all the time and couldn't possibly fit all that in my blender..... It does sound good though.

[titaniumed]

My blender noise is probably about 100 db. A jet engine at the airport is about 100 decibels of sound. When company is over and I fire it up, ALL comunication stops! I get a kick out of it.

When I throw a large frozen strawberry in, I might as well have tossed stones in there!

You might pick up a unit like this one

http://www.youtube.com/watch?v=xsTCUUkKsr4

Ed

[ladare]

Ed,

That youtube click is hysterical...thanks for the laugh!

[briarrose]

It's good to know that being semi-crooked after surgery is normal. Thanks for the reassurance everyone.

I'm feeling better for the most part, but I feel like I'm recovering more slowly than I should be. I am making progress, it's just not very noticeable at this point.

Now I'm having insurance company problems which has got me so worked up. We thought everything was covered 100% but now it looks like we're going to owe well over $10,000 which we can not afford at all. I don't know what to do. I need to get my head and thoughts together so I can work on fighting this. For some reason, the surgical monitoring isn't covered ($5000) and my brace isn't either ($850) even though I have a letter saying it was pre-approved. I have a letter stating the surgery was pre-approved as well so I don't get why we have to pay. I'm also gathering that the hospital I was at was out of network even though I researched it beforehand and it was in-network then. I'm so frustrated and overwhelmed. Does anyone know where I should start with all of this?

Thanks,

Shell

[Singer]

Shell, be sure to question all of your bills with polite but persistent phone calls before you pay anything. In my case, the hospital mistakenly billed me for several procedures without submitting the bill to insurance first, because there wasn't always the greatest communication between departments. If the bill comes from your insurance company and still seems high, you can appeal it. I spent a lot of time on the phone in the months following surgery.

Also, about recovery -- it takes most adults AT LEAST 3 months to start feeling human again. People who bounce back into life more quickly than that are the exception, not the rule. You should be doing a lot of laying around and taking short walks at this point and that's it.

[Susie*Bee]

Sorry about the insurance problems. Shell. Singer, is right-- you will have to be polite but persistent in finding out what's going on... and don't hesitate to be aggressive -- you have a letter proving that your brace had been approved. Now is not the time to play the nice guy and back down-- which you well realize, because of the amount of money at stake, in both situations. A few months after my surgery we got billed from the hospital for the full amount of my 10 day stay-- something like $180,000.00-- an amount we could NEVER have come up with. Believe me when I say my heart dropped down into my stomach (well, sort of) and the world seemed to stop for a few seconds... Our insurance said we had NOT been pre-certified, the hospital had said the surgery was canceled, etc., etc., but we had all the paperwork to show we did and it hadn't (obviously!) been canceled. So all was well eventually. So take a deep breath and prepare yourself for an unexpected challenge.

Chris also said it well about giving yourself time to recover. I know you are young, but it still will take awhile. PM people like vndy, nzgirl, rosie1108, etc., who had surgeries back in December. They'll tell you it took them awhile too. If you push yourself too hard, you probably won't progress any quicker (and could possibly make it worse?) than if you take it at the pace your body is indicating it needs. Listen to your body rather than your mind. I know it's hard, when you want to be doing more things... Hugs, Susie

[Suzy]

Hi Shell,

I think you could push the surgical monitoring being covered if the insurance company knows the surgeon ordered it. Mine didn't even know what the monitoring was for untill I contacted them and told them it was mandatory for this type of surgery. It wasn't a luxury item! I hate to tell you this but I spent months getting my stuff covered. You will have a new career doing this. I JUST received notice of payment to the DR. who did my disco gram in Jan 2006! Can you believe that? As for your progress being not very noticeable you might try jotting down the things you are able to do every couple of days. As you look back you will see the progress you have made. It is really tough to remember the small accomplishments but they do all add up.


Ed, That cracked me up! So will I see one of those at your house when I come over for a margarita?

[briarrose]

Thanks Chris, Susie, and Suzy! I guess most people have insurance issues after surgery. It seems like insurance companies try to get away with whatever they can. I'm really worried about the out-of-network thing. The website lists the hospital as a provider so I assumed it was in-network. My surgeon was in-network and he only does surgery at one hospital, so shouldn't that be in-network too? If the hospital is out-network, I'm pretty much done for. I need to stop worrying and just fight the fight starting Monday. I have all of my info/papers in order and I'm prepared to call Monday morning. This doesn't sound like it's going to be easy, but if it means saving thousands of dollars, it'll be worth the fight.

Thanks again for your encouragement. It's nice to know others have gone through similar situations.

Shell

[briarrose]

I just figured out the insurance problem. The hospital I went to was in-network. Everything I had done at the hospital (MRI, x-rays, CAT scan, etc.) are all listed as different places (for example- Radiology of the Mainline) that is not in-network. Do you think this can be easily remedied since everything was done at the hospital? I received a copy of the bill from the hospital ($280,000!) and my insurance company rejected it asking for an itemized bill which then showed all of the different names. Would calling the hospital and asking them to resubmit everything using the hospitals name instead of the other names solve the problem? I have a little bit more hope now.

Shell

[debbei]

Shell,

If your hospital is in-network, I think you have a good argument for having those services covered as in-network. It's not like you could ask while you were laying there on a catscan table--oh excuse me, Mr. Radiologist, do you take my insurance? This stuff is ridiculous. I had some similar problems when my hubby had surgery about 5 years ago, and the charges ended up being covered after all.

Good luck, and let us know what happens. Like someone else said, do not, NOT ever just pay these bills. You have to argue your point with these insurance companies & providers.

[titaniumed]

There is always the insurance commisioner. There is one for every state.
Look them up online.

[Diane BCSW]

Hello BriarRose and husband

Wow, what a husband! You are wonderful for being by your wife's side. I've been out of the forum for a little while and never posted much when I was in, so I had not "met" you BriarRose. Looked at your Xray. Oh My Goodness! I think mine was around 35 but I also had kyphosis and it was 67 degrees - I was staring at that floor! In my considerable, but probably non-helpful experience, keep the physical activity to a minimum, depending of course on what your doctor has to say. I am much older than you, so I feel you will bounce back a lot quicker, but after this last revision surgery of mine, my doctor did not allow me to do anything for the first 3 months, but that was because I've had such a history of non-fusing and rod breakage. After the original surgery, I was at the P.T. very soon, but that particular P.T. was a scoliosis specialist and knew exactly what she was doing. She did all of Dr. Shelokov's (Plano, TX) post-surgery P.T. After my second surgery (revision) Dr. S put me in a "skilled nursing unit" (fancy for nursing home) and I had to keep my body no more raised than 30 degrees. I was there for 7 long weeks. Again, listen to your doctor and do what he or she says and no more. Isn't it just the best thing in the world to be without the rib hump. I hated that thing.

Good luck. You'll make it just fine especially having such a devoted husband.

[briarrose]

Debbei - I'm glad everything worked out with your husbands surgery. I hope the same thing happens for me! I'll be sure not to pay any bills. I'm used to insurance companies being really slow, but for some reason, this stuff was pushed through quickly.

titaniumed - I've never heard of an insurance commissioner, but I'll look it up. Thanks!

Diane - I do have a great husband! He's so patient and helpful. Thanks for sharing your story. I can't believe you had to stay at the skilled nursing unit for 7 weeks! I think I would have gone crazy! I wanted to post my post-op x-rays, but my surgeon has them. I'll get more x-rays done in about 3 weeks so I'll post them then. It is great not having a rib hump. I look in the mirror now and think, "That can't be my back!"

Shell

[Susie*Bee]

Shell-- I just saw your newly added post-op x-ray in your signature! I am soooooo impressed with the change and how wonderfully straight you are lookin'! ;) You must be ecstatic!

I didn't want to hi-jack someone else's post to point out your new x-ray, so dug up this old one of yours. I think that seeing your before and after x-rays will give lots of others a big smile too-- and plenty of inspiration for those who haven't had their surgeries yet. Hope you are feeling better and better all the time! Hugs, Susie

[briarrose]

Susie, thanks for posting and checking out my x-rays! I should have started a thread to show my post-op x-ray. I'm not sure why I didn't. It is amazing to look at the difference. I'm really happy with how straight I am now. It's a good thing to look at when I'm having a down day.

Shell

[Sharshe]

You're x-rays look wonderful, good correction. Haven't really kept up with everyones posts. but I'll try to read back some and get myself better informed and back ontrack here. Good luck to you on your recovery.