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the_baroness
05-21-2017, 07:14 PM
Hello all you lovely people. I have been a long time away from the forum because I am almost four years post op and had been feeling great. 2 days ago I woke up with some mild pain in the sacrum on the left side. I took some Advil and didn't think anything of it. The next morning after I got out of the shower, I had my left foot propped up to dry off my toes when, POP! I heard a loud cracking noise and I felt something go sproing. It kind of hurt, but not too badly, that is until I squatted down to pick something up off the floor (which is my customary way of doing it since I'm fused t10 to sacrum.) Squatting down was excruciating. That being said, walking, standing, sitting, and lying down feel ok, just a dull ache. And I can only walk really slow. My doctor is Dr. Errico in NYC, who I love. He's out of town, but his nurse practitioner Oksoon had me do an X-ray and said there is a crack in one of the rods. I'm supposed to leave for vacation in a few days but I have an appt to see Dr. E before I go. Seems weird to go on vacation knowing that cracked rod is in there. But I'm getting around ok and my husband and friends will be with me to help me out. And I ordered a fold up grabber to carry in my purse. I'm assuming I'm going to have to have a second surgery to get this fixed. Oksoon told me some people just live with the pain when a rod breaks and opt not to do anything. I don't really see that as an option. The whole reason I decided to get my spine fixed in the first place was to avoid a lifetime of pain. I guess now I'm doubling down on that decision. I feel sad that I'm putting my friends and family through this again. One of my family members is being very unsupportive which is making me feel worse. She thinks I should just turn to holistic healing and pain management. She had scoliosis too and that's how she has dealt with hers. I'm so angry and frustrated right now. I don't care that I have to have another surgery. I can deal with that. I just hate the feeling that I'm somehow letting everyone down. A lot of my friends and family tried to talk me out of doing it in the first place. Now I think they're all thinking "I told you so." Forum Friends, you all have gotten me through more dark times then you know, because I'm a bit of a lurker rather than a poster. I look forward to your words of wisdom once again.

LindaRacine
05-21-2017, 10:07 PM
Hello all you lovely people. I have been a long time away from the forum because I am almost four years post op and had been feeling great. 2 days ago I woke up with some mild pain in the sacrum on the left side. I took some Advil and didn't think anything of it. The next morning after I got out of the shower, I had my left foot propped up to dry off my toes when, POP! I heard a loud cracking noise and I felt something go sproing. It kind of hurt, but not too badly, that is until I squatted down to pick something up off the floor (which is my customary way of doing it since I'm fused t10 to sacrum.) Squatting down was excruciating. That being said, walking, standing, sitting, and lying down feel ok, just a dull ache. And I can only walk really slow. My doctor is Dr. Errico in NYC, who I love. He's out of town, but his nurse practitioner Oksoon had me do an X-ray and said there is a crack in one of the rods. I'm supposed to leave for vacation in a few days but I have an appt to see Dr. E before I go. Seems weird to go on vacation knowing that cracked rod is in there. But I'm getting around ok and my husband and friends will be with me to help me out. And I ordered a fold up grabber to carry in my purse. I'm assuming I'm going to have to have a second surgery to get this fixed. Oksoon told me some people just live with the pain when a rod breaks and opt not to do anything. I don't really see that as an option. The whole reason I decided to get my spine fixed in the first place was to avoid a lifetime of pain. I guess now I'm doubling down on that decision. I feel sad that I'm putting my friends and family through this again. One of my family members is being very unsupportive which is making me feel worse. She thinks I should just turn to holistic healing and pain management. She had scoliosis too and that's how she has dealt with hers. I'm so angry and frustrated right now. I don't care that I have to have another surgery. I can deal with that. I just hate the feeling that I'm somehow letting everyone down. A lot of my friends and family tried to talk me out of doing it in the first place. Now I think they're all thinking "I told you so." Forum Friends, you all have gotten me through more dark times then you know, because I'm a bit of a lurker rather than a poster. I look forward to your words of wisdom once again.
Hi...

If you have an area that didn't fuse, which is likely, the surgery to fix it is usually described as being very easy. Don't let it get to you. It's just a tiny detour.

--Linda

titaniumed
05-22-2017, 10:21 PM
Hi Baroness

I am sorry this happened. Rod breaking and fusing is one of the things we all worry about. Dr Lenke has reported finding them 8-1/2 years post. (smug face)

Gayle had her thread a while back "Pop heard around the world" you might look for it. She had her revision surgery along with Jenee and both are doing fine now....

We all have to be prepared for things that might happen during or after scoliosis surgery. For those that come through good, consider yourselves lucky....I am the luckiest person here, and my neck is hammered....if I don't have it fused, it might self fuse and then I would have to post as the Tin Man. (With that gay metallic smile) Ha ha

I hope you can accept that this happened and move forward....Its kind of hard listening to all the others and their advice when we have to do all the pain and suffering....go ahead and vent if you have to.

Be sure to let us know what Dr Errico thinks...

Deep breaths...

Ed

the_baroness
05-24-2017, 02:05 PM
Accepting, moving forward, tiny detour - got it! Thank you. Thanks for having my "back." (A little scoliosis humor.) My latest paranoia is that I'm going to get to Dr. E tomorrow, and he'll say, "What crack, your hardware looks fine." (It was his nurse practitioner who identified the cracked rod on the x-ray.) Or, "No, that's not serious enough to warrant doing anything about it, you'll just have to live with it." I feel fine when I'm at rest, but I can't bend down to pick anything up, and I simply can't live like that forever. I'm only 46. I plan on living at least another 40-50 years! I need to be independent. So, worries are running through my head. NYU has this online "My Chart" thing, and they posted the results of my x-ray to the chart, done by I guess the x-ray technician, and it says no hardware is broken in the analysis section. Why would it say that? Maybe Oksoon is wrong. Not that I want there to be a cracked rod, but I just need to know this pain is not in my head. And it's not so much the pain, it's that it feels like the left side of my body came "unhinged" or "unhooked." I'm walking a little funny. I can only take short steps. I feel like my left leg is dragging a little. I hope Dr. E doesn't just tell me to deal with it. I'm not dying to have another surgery, but I want this fixed. I loved my new back. I feel like I broke a brand new toy :( I'm not scared of another surgery. Especially if it's not as bad as the first one. I'm going to be better prepared to get off the painkillers sooner. And I'm going to do it according to a schedule so I don't go through withdrawal and get sick again. And once I'm off the painkillers I will try to work from home some, so I won't worry so much about losing my job. Hey, one bright side to another surgery is that now I'm more experienced!

LindaRacine
05-25-2017, 12:45 PM
Accepting, moving forward, tiny detour - got it! Thank you. Thanks for having my "back." (A little scoliosis humor.) My latest paranoia is that I'm going to get to Dr. E tomorrow, and he'll say, "What crack, your hardware looks fine." (It was his nurse practitioner who identified the cracked rod on the x-ray.) Or, "No, that's not serious enough to warrant doing anything about it, you'll just have to live with it." I feel fine when I'm at rest, but I can't bend down to pick anything up, and I simply can't live like that forever. I'm only 46. I plan on living at least another 40-50 years! I need to be independent. So, worries are running through my head. NYU has this online "My Chart" thing, and they posted the results of my x-ray to the chart, done by I guess the x-ray technician, and it says no hardware is broken in the analysis section. Why would it say that? Maybe Oksoon is wrong. Not that I want there to be a cracked rod, but I just need to know this pain is not in my head. And it's not so much the pain, it's that it feels like the left side of my body came "unhinged" or "unhooked." I'm walking a little funny. I can only take short steps. I feel like my left leg is dragging a little. I hope Dr. E doesn't just tell me to deal with it. I'm not dying to have another surgery, but I want this fixed. I loved my new back. I feel like I broke a brand new toy :( I'm not scared of another surgery. Especially if it's not as bad as the first one. I'm going to be better prepared to get off the painkillers sooner. And I'm going to do it according to a schedule so I don't go through withdrawal and get sick again. And once I'm off the painkillers I will try to work from home some, so I won't worry so much about losing my job. Hey, one bright side to another surgery is that now I'm more experienced!
Hi...

Interesting that the radiologist states that there are no breaks and the NP states that there is. Some breaks are not very obvious, and they can be really difficult to spot. One of the studies in which I was involved had a very high rod breakage rate, so I got really good at spotting fractures. If you're not looking for it, it's easy to miss. It may be that the NP was able to spot it because she was looking for it, after hearing you talk about the pop. The radiologist may not have had that same info.

The good news is that, either way, you'll have the info in a matter of hours.

Regards,
Linda

susancook
05-28-2017, 02:49 AM
Sorry that some of your friends and famity are not supportive. Having major spinal surgery is totally a craps shoot. If we have a problem after surgery, we say "If I had Dr. Xxx then I would not have had a problem". There is no way of knowing both what life would be like in both scenerios, having surgery and not having surgery or having one surgeon or another. Maybe if you didn't have surgery you would be in a wheelchair addicted to dilaudid or if you had chosen a different surgeon, you might not have survived the surgery.

Friends and family that are not supportive are toxic. You don't need to be around such people. You have not dis appointed anyone.

Susan

the_baroness
06-04-2017, 02:13 PM
I tried to post an update last week while I was on vacation but I guess my phone ate it before it could get posted. Whoops. So I saw Dr. Errico the day I left, and he confirmed there is a crack in the rod on the left side. I'm going to try to attach a photo of the xray. It's between the 3rd and 4th screws up from the bottom. He said he couldn't tell me what our next step should be until we have more information, so he ordered a cat scan, which I'm doing tomorrow morning. Then I go back to see him this Thursday. He says we should be able to tell from the cat scan if the break was due to non-fusion or "bridged bone," or if it just broke on it's own due to wear and tear. One of his fellows (there's always fellows - I do not like those guys as a general rule) told me that the cat scan will show a dark area if the bone isn't fused right. And Dr. Errico said that if it's a non-fusion, we will need to go in and fix it because it will cause the rod on the other side to break also. But if the fusion is good, well then that's where he wasn't entirely clear. He implied that for some people after a rod breaks the pain will subside after a week or two, and if that happens, he implied we might just do nothing. So, I gamely pretended for the last week that it was in fact getting better, because, while I'm both a hypochondriac, and a hypochonriac-chondriac (fear of being labeled a hypochondriac!) I don't want to have another surgery, because I have a lot of fun things planned this summer, and I'm also worried that my employer will start to lose patience with me if I take another medical leave of absence, and also, as I mentioned, I feel really terrible about putting my friends and family through this again. But, I believe in the healing power of positive thinking, so for 3-4 days while I was trudging around Spain (which was fantastic, by the way, and fulfillment of a life long dream) I pretended like it was getting better and *believed* it was getting better and told my husband and friends that it was was feeling better. And honestly, walking and standing and sitting and lying down are really virtually pain free. It's bending and squatting which are the killers, and the morning I spent packing up my suitcase for our move from Madrid to Barcelona basically did me in and totally killed my positive-thinking-as-healing plan, because after that I could barely walk. But then I rested for a few hours on the train, and it felt better again. But then I had a "falling off the curb" incident while trying to hail a taxi and I hurt myself again. But then, according to pattern, I rested, and I felt better. But then... there was a fly swatting incident where I must have completely forgotten I was injured in my rush to kill a disgusting fly, and then I hurt again. Anyhow, so it goes. Back home now and trying to load laundry in and out of my side load machine, and trying to load and unload the dish washer, it's not doing so well. I've pulled out all my old tools again (thank God I saved them), the grabbers, the long handled hook, the long handled shoe horn, and this really clever I must say tool I invented that I can tape my razor to so I can shave my legs. Anyhow, on pins and needles now waiting for the verdict from Dr. Errico on Thursday, surgery or no. And actually my vote is surgery because unfortunately I need to be able to do housework going forward. And also I feel like I worked so hard after the original surgery to get where I am, and I want that back again. I was so happy to be able to do yoga again and I was running a little, and I don't want to have to give that up. So I want to get this damn thing fixed so I can have my life back. And I hate the waiting to hear if and when, because I need to make plans. I'm supposed to go to a conference in mid-July, and I need to cancel it soon if I'm going to cancel it. Erg, I hate the waiting. I want to know my fate!

the_baroness
06-04-2017, 02:15 PM
Whoops, of course I forgot to include the photos. Try again.19401941

titaniumed
06-04-2017, 11:24 PM
He sure did get you nice and straight.......I see the break.

Amazing that you survived traveling through Spain in pain on the train.

I guess you cant assume anything until Dr E looks over the CT's. (smug face)

Hang in there, let us know.

Deep Breaths.

Ed

Pooka1
06-04-2017, 11:42 PM
Amazing that you survived traveling through Spain in pain on the train.

LOL! Dr. "Ed" Suess

the_baroness
06-05-2017, 06:08 PM
traveling through Spain in pain on the train.



Yeah, good one! :)

Waited two and a half hours this morning for my CAT scan, but now that that's done, more waiting.

It's funny, planes and trains in Spain caused no pain, but the NYC subway this morning was brutal. Stupid MTA.

titaniumed
06-06-2017, 11:43 PM
Yeah, good one! :)


Ha ha!.....My weak attempt, but you guys have forgotten how clever Seuss was.

I guess that was a result of reading his books as a child....They were everywhere 50 years ago.

One of my favorites was or is "Today you are you! That is truer than true! There is no one alive that is you-er than you." (smiley face) I remember running around at age 7 saying "nobody is you-er than me!"

I miss the city, (That's New York).....I lived 4 miles away from Manhattan years ago, but I don't miss the subways....

I did a lot of traveling in major pain before my surgeries. I would have to stand in the back of the plane on the long flights. Sometimes I just cant believe that I made it through all that.

Our efforts as adult scoli patients are sometimes an act of desperation. After years of battling major pain, fighting my own decision, I knew in Sept 2007, I was ready.

But my decision was one of those "nobody is you-er than me" things (Seuss logic,) it was solely my decision. A very personal sort of thing, how could I listen to those that were against surgery...

After all, they weren't me.....


Ed

the_baroness
06-30-2017, 05:03 PM
Once again, Ed, you said exactly the right thing that I needed to read right at this exact moment, thank you. Revision surgery scheduled Aug. 15!

titaniumed
06-30-2017, 10:55 PM
Oh thanks...

Any idea what procedure he will do?

My surgeon would take his finger and draw the incision lines on me so I would knew what to expect. This really is a good idea for surgeons to do as it eliminates any misconstrued meanings with medical terminology. If a patient is unsure, just ask. This helps if they intend on going in from the side or the front. XLIF, ALIF

Many here have had revisions and state that its not too bad.....Dr Errico is also a genius caliber surgeon so that should help ease your pre-surgical stress some. I would have thoroughly enjoyed tagging along with you for your appointment so I could ask questions.

Ed

the_baroness
07-24-2017, 08:25 PM
I asked him how he was going to fix it and he says he's probably going to put a new rod next to the broken one and then add some screws and then cement the whole thing with a bone graft. But he reserves the right to change his mind once he gets in there. Ed I wish you could come with me next time, you would remember all the things I forget to ask! 3 weeks to go now. Starting to get nervous but looking forward to having it fixed as the pain is starting to get worse. Job very supportive, hopefully able to work from home post op. Wish I could write more but I prefer to lay down now all the time instead of sitting at my desk. Hard to type on this stupid phone!

the_baroness
08-24-2017, 11:42 AM
Well, here I'm home from the hospital almost a week now. The hospital was predictably awful, but there were a lot of really nice nurses that did their best to make up for it. This is NYU Hospital for Joint Diseases. Nurses Faye, John, and Rasheeda in particular were awesome. The aids too were awesome, but unfortunately I can only remember Irma's name. Oh wait, as I write this, I'm remembering there was a gentleman named Phil who worked nights who was also a saint. And a clerk named I think Sharmin (sp?) Seriously, these people are unsung heroes. The work 12 hour shifts, on their feet constantly, and still, every moment of their day is focused on caring for us and figuring out how to make us comfortable. Some of the most compassionate people on the planet. Their kindness more than makes up for some of the negative things I experienced. I know it's the drugs talking that heightens the intensity and emotion of it, but there was a nurse manager whose name I will not mention who was not easy to work with. As I think back on it, I realize she was just doing her job, but I felt she was patronizing and wasn't communicating well and did not treat me like an adult. I want to focus on the positive rather than dredge up unpleasant memories, but I have to get this off my chest: Dr. E has a fellow who lied to me and caused me extreme unnecessary stress. I met her the day of my surgery, and at first I was glad to see a female fellow. I've met many of Dr. E's fellows over the last 4 years, and all of them have been male. In fact, on the day of my surgery I met 2 female fellows. The first one seemed perfectly nice. The second one had a gleaming smile, but looks were definitely deceiving. In our first meeting she told me 2 lies: she said the surgery would only be 2 hours (it was not, and several other people involved gave us different estimates, but none were quite so overly optimistic.) She also said, and I quote, "You should be able to go home tomorrow." She said this to me as I was getting ready to go into the OR. I knew right away that was a lie, as Dr. E, and another one of Dr. E's fellows, had both told me I would be in the hospital 3-4 days. So why would she say that? And why would she expect me to believe that? You don't go home the next day from spine surgery, even if it's just a revision. While I was recovering in the hospital, she came to see me each morning at an ungodly hour. Dr. E came to see me as well, and his visit is really just a hazy memory of his silhouette backlit by morning sunlight, which is a crazy memory, believe me! I have the man built up to godlike proportions anyhow, and I can't remember a word of what he said except for him repeating, "You are not fragile. You are not fragile. You are not fragile!" And he called it out again as he receded out the door like an apparition. I'm being overly dramatic. But you know how it is when you're on heavy painkillers and everything seems a fog. Anyhow. So this female fellow came to see me every day, and the issue of my drains was a frequent topic. During my last surgery, I had three drains coming out of me, which were annoying and slightly painful, but they finished up draining by my 3rd or 4th morning in the hospital, and they were removed and I was sent home. This time I had 2 drains, and I was told right away I couldn't be released if they were still draining, and at some point early on, that story changed to, "you will be sent home with the drains if the are still draining." I can't describe to you how much stress this caused me. At that point I was still feeling a lot of pain, and I didn't think I'd be able to make it back into the hospital to have the drains removed. Let alone I wasn't sure how I was going to empty them. I had made a vow to myself that I was going to "go along to get along" during this hospital stay in order to make it more pleasant for both myself and my caretakers. But I was adamantly against going home with the drains. I had to put up a fuss. So much so that I became the topic in a nurses meeting, but they listened to me, and kept me another day so the drains could keep doing their thing. However, a nighttime aide who was a sub from another floor, kept closing them up improperly when she drained them, not creating a suction, which prevented them from draining for about 8 hours, which put me behind schedule in the drainage department. Anyhow, so this female fellow in question kept repeatedly telling me I was going to have to go home with the drains. She was really eager for some reason that I go home ASAP. She told me that my husband would be emptying the drains for me (which at the time seemed to me a horrible idea, but I came around it, and that part did work out fine.) But then she told me that my husband would need to be the person to REMOVE the drains! She said he would need to "clip a few sutures" holding the drains in, and then pull out the tubes. Mind you, one of the drains had literally 12 inches of tubing embedded deep in my body. Even the nurses agreed with me that asking a non-medical-professional to remove the drains was something they'd never heard of, and could lead to infection. Why on earth would this woman say that? It caused me so much anxiety. Granted, I was on drugs, and wasn't in my right head. But I became hysterical, which I had told myself I wouldn't do, and now I'm rather ashamed. It's to the credit of the amazing nurses that they were able to calm me down. But I blame this horrible smiling lying fellow for blithely pushing ideas that were so incredibly overly optimistic that they were basically lies. Anyhow. Eventually they did send me home, with the drains, and my wonderful loving husband was able to empty them for me. I went home on Friday, and those kind wonderful nurses had scheduled me an appointment with the plastic surgeon responsible for my incision and drains for the following Monday morning. And boy, when he pulled that 12 inches of tubing out of my back, I felt it! There's no way a layperson could have done that. Personally, I think this female fellow is dangerous, and shouldn't have patient contact. I'm still so upset about it. I should put it out of my head, but dealing with her was fairly traumatic.

So, anyhow. Now my big job is weaning off the painkillers. I'm due to start working from home in about 4 days, but I'm wondering if I'm going to need an extra day or two. At first I thought my only hurdle for getting off the oxy would be the withdrawal. I have a bad track record in that department, so I'm trying to take it slow. But I'm now at the day where my plan is to be at only 15 mg total for the day, and I'm suddenly realizing that there's actually some pain going on underneath all that drug induced numbness! Uh oh. The incision all along has been rather painful, especially at the top, and as the drugs leave my body I'm feeling it more. And the drain sites are especially sensitive. But I'm also feeling this incredibly strong pressure in my back, like an elephant's sitting on me. And I'm especially feeling sharp strong pain in my left shoulder. After my walk yesterday I spent the entire day laying in bed because I was sick to my stomach (I think from my body adjusting to lower doses of painkiller.) So I'm wondering if the shoulder pain is related to spending way too much time yesterday flat on my back. So today I'm going to try to spend more time sitting up. The walking is going fine. I'm very weak and I get tired easily, but it's a great relief to feel that the "broken rod feeling" is now gone. The shoulder pain seems weird since my revision is way down in the lumbar area.

Anyhow, so, I'm starting to go a little crazy here at home, and I think non-stop about my painkiller decrease schedule. I'm like ultra-focused on it. Writing this has been very therapeutic. I'm sure if I read it later I will cringe, but for now, thanks for letting me vent.

titaniumed
08-26-2017, 09:18 PM
Funny how we talk about drains, drugs, and the spider web of hoses only to be caught like an insect. (smiley face) I couldn't even roll without pulling on something.

Sounds like you are determined to wean at 11 days....It never an easy thing, reducing meds and balancing pains.....

The nutrition part of all of this should be up at the top of the list as we do need our nutrition while healing. I felt so much better with my whey protein smoothies...sip and go, re-blend.

Try to take it easy......we like to think we control our recoveries only to realize that our recoveries control us...

Patience...

Ed

JuliaAnn
08-28-2017, 04:02 PM
I'm thinking of you and praying for you. Titanium-Ed is right, give yourself lots of time to recover. We like to think we're indestructible but we're not. And I'm not sure Drs are always right when they way we're not fragile. I think after surgery, there IS a time when the bone repair is fragile. It takes time to knit strong.

I remember going off oxy less than two months post op. I did it cold-turkey and the withdrawal was hell for two weeks. The surgeon had prescribed hydrocodone to help but I ended up allergic to it and didn't want to bother him over the long Thanksgiving break. So, oh my goodness, I do NOT recommend that! A good surgeon will have a good pain medication exit.

Ed is right, lots of protein. Also calcium. And potassium for leg cramps. I ate tons of bananas to help with the arm and leg pain from withdrawal. Massage helped, along with yogurt. Bones and muscles need the protein and calcium boost after surgery to repair tissue even without any med withdrawal. It was critical to get all that extra stuff.

Can your surgeon prescribe a lower tier pain medication? I think that is extremely beneficial to slowly come off stronger meds.

the_baroness
09-03-2017, 12:31 PM
Thanks so much for the support! And for all the reminders about nutrition and taking care of myself. I don't know what I would do without my team. Thanks for keeping me sane :)

golfnut
09-03-2017, 10:13 PM
Best of luck with your recovery.

Confusedmom
09-17-2017, 11:17 PM
Baroness,

How are you doing? Recovery coming along? How's the weaning? Shoulder pain? Other pain?

Hope everything is going well. Give us an update. :)

Evelyn

the_baroness
09-19-2017, 08:02 PM
Hi friends, sorry for the delay with the update. I hate sitting up at my desk, so I have finally dragged the laptop to the bed. I went back to work at the office yesterday. I'm putting on a brave face, but I must say it's rather uncomfortable. My muscles are so tight and sore that it's hard to breath. But my desk at work is much more comfortable than my desk at home, and mentally it feels so great to be out and about again, and interacting with co-workers and working on meaningful things. I have three cats which I love, but I am glad to have other people besides them to talk to again! I'm totally off the painkillers, and my stomach and digestive system have mostly returned to normal. I haven't had an oxy "jones" for almost a week now. So I feel like I'm well out of it. The incision and holes from the drains are all pretty well healed up now. Just waiting for 1 more steri strip to fall off! Now I guess I'm just in the long agonizing period where I wait for the pain to stop. Stupid tylenols have no effect. The only thing that removes the pain is laying flat in bed. (Which is actually the same as last time around.) The good news is laying flat in bed gives me total relief. It's weird that the pain is in the same spot as last time too, in my bottom ribs, parallel to where my fusion ends. No pain at all where the broken rod was, or anywhere else in the fused area. Just the stupid ribs like always. Once I'm allowed to do PT and stretch, I will probably be able to get the pain to stop. I'm thinking I might start doing some light stretching starting now. What do you all think? Hope everybody is well, and thanks for all the well-wishes.

the_baroness
09-19-2017, 08:06 PM
I'm thinking of you and praying for you. Titanium-Ed is right, give yourself lots of time to recover. We like to think we're indestructible but we're not. And I'm not sure Drs are always right when they way we're not fragile. I think after surgery, there IS a time when the bone repair is fragile. It takes time to knit strong.

I remember going off oxy less than two months post op. I did it cold-turkey and the withdrawal was hell for two weeks. The surgeon had prescribed hydrocodone to help but I ended up allergic to it and didn't want to bother him over the long Thanksgiving break. So, oh my goodness, I do NOT recommend that! A good surgeon will have a good pain medication exit.

Ed is right, lots of protein. Also calcium. And potassium for leg cramps. I ate tons of bananas to help with the arm and leg pain from withdrawal. Massage helped, along with yogurt. Bones and muscles need the protein and calcium boost after surgery to repair tissue even without any med withdrawal. It was critical to get all that extra stuff.

Can your surgeon prescribe a lower tier pain medication? I think that is extremely beneficial to slowly come off stronger meds.

Thank you, JuliaAnn! Much appreciated. Withdrawal is a horrible experience that I wouldn't wish on my worst enemy. I'm glad to be through it. And I am really taking everyone's nutrition advice to heart. Normally I try to diet a lot and not eat carbs, but right now I'm allowing myself to eat anything that seems nutritious. I sure didn't manage to lose any weight after this surgery like the last one, but I feel like to need the calories for healing.

the_baroness
09-19-2017, 08:07 PM
Baroness,

How are you doing? Recovery coming along? How's the weaning? Shoulder pain? Other pain?

Hope everything is going well. Give us an update. :)

Evelyn

Evelyn, I realized I didn't answer your questions directly. Shoulder pain seems to have been from laying in bed too long, and faded with some good walks. And, fully weaned! And the ribs. Thank you so much for asking and thinking of me! You all are very kind. :)

LindaRacine
09-19-2017, 11:25 PM
Hi friends, sorry for the delay with the update. I hate sitting up at my desk, so I have finally dragged the laptop to the bed. I went back to work at the office yesterday. I'm putting on a brave face, but I must say it's rather uncomfortable. My muscles are so tight and sore that it's hard to breath. But my desk at work is much more comfortable than my desk at home, and mentally it feels so great to be out and about again, and interacting with co-workers and working on meaningful things. I have three cats which I love, but I am glad to have other people besides them to talk to again! I'm totally off the painkillers, and my stomach and digestive system have mostly returned to normal. I haven't had an oxy "jones" for almost a week now. So I feel like I'm well out of it. The incision and holes from the drains are all pretty well healed up now. Just waiting for 1 more steri strip to fall off! Now I guess I'm just in the long agonizing period where I wait for the pain to stop. Stupid tylenols have no effect. The only thing that removes the pain is laying flat in bed. (Which is actually the same as last time around.) The good news is laying flat in bed gives me total relief. It's weird that the pain is in the same spot as last time too, in my bottom ribs, parallel to where my fusion ends. No pain at all where the broken rod was, or anywhere else in the fused area. Just the stupid ribs like always. Once I'm allowed to do PT and stretch, I will probably be able to get the pain to stop. I'm thinking I might start doing some light stretching starting now. What do you all think? Hope everybody is well, and thanks for all the well-wishes.
I would definitely not do any stretches until you're cleared to do them by the surgeon.

--Linda

titaniumed
09-20-2017, 12:44 PM
I'm putting on a brave face, but I must say it's rather uncomfortable.

Its good to get out of the nest and flap the wings.....for our sanity.

We use the brave face but there will be times when things can be trying and we just have to forget the brave face..... A few weeks out, its hard to explain to strangers that we just got hit by a surgical train, and there isn't anything that they can do. I had this happen in public and just wanted to be left alone. Helen Keller said "Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold." We think we are safe staying at home, but the see-saw recovery pains will come and go regardless of where we are....

5 weeks for stretches is way too early for doing too much.....I believe I was released at 8 months, and then started stretching on a really slow schedule....foot on stool, hanging arms to reach shoelaces kind of takes a priority with full fusion....shoes come first, Iron man comes later. Much later....

Accept that your body has to heal at its own pace. These challenges take an incredible amount of patience, and the rewards will come in time.

It helps to look and think about people like Hellen Keller, and others with disabilities and think about their parallel issues and how they overcome. Its inspiring to see how they cope and maintain their optimistic attitudes.

I have attached a link of 45 popular quotes by Hellen Keller. Read and think.....re-read when things get tough.
http://www.quotesigma.com/45-famous-quotes-helen-keller/

Hang in there

Ed

the_baroness
09-26-2017, 07:53 PM
Ok no stretches. Got it. In my defense all I was doing was holding my arms over my head for ten seconds. But I will yield to wiser, more experienced heads :) I just was thinking that some stretching will help ease some of the pain in my ribs.

Truly the thing that has been so plaguing me is it's hard to take a deep breath. I feel like something is sitting on my diaphragm or squeezing me. It's very unpleasant. Is this normal? I thought I remembered reading on the forum that someone else had this and overcame it eventually by singing a lot to strength her muscles. I have my first post op doc visit on thurs. I intend to ask him about this breathing problem as my very first question.

I'm in the weeds here. I know this too shall pass but I feel every day like I've been hit by a truck.

titaniumed
09-26-2017, 09:14 PM
I feel every day like I've been hit by a truck.

Baroness, if you are having problems breathing, I would go to emergency and tell them about your surgeries. They will shoot x-rays.

If I had to guess, sounds like it could be fluid.....its happened to a few members here, (weeks after scoliosis surgery) but then self diagnosis is fruitless and I'm not a medical doctor. X-Rays will show quite a bit.
https://en.wikipedia.org/wiki/Pleural_effusion

You are going to be fine, you will get through this...

Ed

cathydrew
09-30-2017, 10:15 PM
I thought I remembered reading on the forum that someone else had this and overcame it eventually by singing a lot to strength her muscles.

That was me..... singing loud and strong definitely helped with my breathing, but be aware of any sharp pain.

Best of luck hope you are recovering well, I have a broken rod almost exactly in the same place... but I'm having NO pain in that spot, my pain is on the other side and more near my pelvic anchor... which may be unrelated. Ugh.... Doc said fusion looks ok but not great on right side, but good on the left (the other side) of the disc at the break.

When was your surgery and how are you feeling now?

Cathy