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LynetteG
05-09-2010, 08:51 PM
Well I didn't have to have the myelogram done, I had called the hospital the day before to find out exactly what it involved, and when I found out, I told them I wasn't prepared to go through with it. I called my doctor and asked was there any other way to find out what was wrong with my leg, and he said the CT Scan would be fine although it wouldn't give quite as much accurate information. The myelogram would have meant me having an IV for fluids to help prevent the headache that some of you have mentioned on here before, and then apparently after the procedure I was told I would have to lay flat for 12 hours. So with having two boys to take care of, and having gone through enough with the surgery, I did not want to go through this.

Anyway this Friday just gone I met with both a neurologist and my doctor. The neurologist figured out along with my doctor that I had some kind of reaction to laying on the pads for the ten hour surgery (my doctor said this was the first time he had ever witnessed anyone suffer with this), and it affected my femoral nerve. Apparently when I woke up from surgery, Dr. Cronen noticed bruising and redness across my chest, and on both my thighs where the pads were. My chest is still a little tender to touch, my left thigh is fine, but my right thigh is where the pain has been. So the neurologist had recommended a medicine that could have taken away the pain in my leg and stopped my fatigue and nauseousness and replaced the percocets and oxycontin, but when I got home the pharmacist told me that the meds would cost $430 just for 30 days. So that would not work for me. The other thing the neurologist had suggested was a shot in my leg, which would remove the pain instantly I think, and last for a few months, by which time my leg should be fine at that point anyway. So - I think I will probably end up getting the shot - although today my leg seemed to be slightly better, so I may give it a few days and see if it starts improving on its own, otherwise, I'll just get the shot. In the meantime, I've decided to wean off the percocets and the one oxycontin that I'm taking, the percocets are causing me to feel exhausted, fatigued, and nauseous every day, and that's no way to live, so no matter what, I'm weaning off those rotten pills. I figure the way I'm going to wean off them, I should be off them by May 30th. I will wean off them very slowly, as I know there can be horrible withdrawals on these pills.

I am thrilled however all in all with my surgery. I can't say enough wonderful things about my doctor, Dr. Cronen, he is fantastic. While I was in the hospital he visited me every single day, and since leaving the hospital he has given me his private phone number so that I could text message him whenever I needed to ask him a question etc., and also his personal assistant Josh Gilliam did the same, and gave me his phone number to text him also. Dr. Cronen did a magnificent job with my correction, I just found out at my visit that my lower lumbar which was at an 85 degree curvature - is not at a 27 degree curvature, and my upper curvature was 55, and is now 19. Can you believe it? Every time I look in the mirror I can hardly believe it how different I look to before, and taller :)

These last few weeks have been pretty horrible for me, only because of the pain in my leg, and the affects of the meds on me, but I really feel like suddenly I'm turning a corner. Today felt like a turning point for me, and my family said I looked different today. They thought I looked brighter, my eyes looked clearer, and I didn't have that drugged up look about me.

After this kind of surgery, and being fused to the sacrum, sure has changed my life though. I'm learning each day how to do things, how to change the sheets on the beds (tucking the sheets in is really hard for me), doing laundry, walking is so different, learning to walk in a different way, instead of walking to a slant to the right, I walk very straight with great posture, and that takes some getting used to. I love it when people say how great my posture looks :)

I knew this was going to be hard, and is some ways it has been easier than I expected, and in some ways harder. The fatigue from the meds has been very very hard on me, especially taking care of my boys, and the fact their father has been pretty much non-existent since I came home from hospital. So when the boys say "Mommy we want to play outside." I think - oh gosh, here we go, out in the Florida humidity and heat, when I feel like I just want to curl up into bed and sleep. Still - each day is slowly but surely getting a little bit better.

I absolutely do not regret having this surgery, I'm thrilled with the results, I'm so happy that I chose Dr. Cronen, he is fantastic, the best doctor in the universe as far as I'm concerned :)

So that's my update, I hope everyone else is doing great, I've been thinking about Melissa and I'm about to check and see if there are any updates about her on here, and I'm thinking of Janet Sully who has her surgery coming up with my lovely doctor in June, and everyone else who has just had surgery or is about to have it - you are all in my thoughts and prayers, and think of this as being a very exciting time.

The best part is - now I don't have to think of having scoliosis anymore, I don't have to worry about my heart and lungs anymore, and I don't have to worry about should I or shouldn't I have surgery anymore - it's all part of the past, and the best is yet to come - my life is just beginning :)

rohrer01
05-09-2010, 09:39 PM
That was a wonderful update. I'm glad to hear you are doing so well. I hope you get the leg problem taken care of. I know how hard it is to wean off the meds you are on. Expect diarrhea, especially when it comes time to come off the oxycontin. I've had to do it several times and maybe I went off of them too fast, but I was miserable. So if it gets too bad, just slow up on the weaning process. Best wishes for your new life!
Rohrer01

LynetteG
05-09-2010, 09:59 PM
Thanks rohrer01 for your advice! I'm definitely nervous about the whole weaning process, but I'll just take each day as it comes :)

gmw
05-10-2010, 06:09 AM
Thanks for the update, Lynette. So good to hear you're glad you had your surgery in spite of all you have been through. Praying you're able to wean yourself off the meds without too much discomfort. I'm dreading the constipation and pain meds almost more than the surgery.

Nitram
05-10-2010, 07:40 AM
Hi Lynette, I am so glad your doing so well (except for the leg pain). Keep up the good work! It's funny how the meds affect everyone differently. I just stopped taking MS Contin last week but still take percoset as needed and it doesn't seem to bother me at all. Regardless I hope to be off that as well within the next week...we'll see I guess.

Anyway, take care and keep healing!

Rich

golfnut
05-10-2010, 09:35 AM
Lynette,
I'm so glad you feel that you've turned the corner and that you are pleased with your results. Although I'm new to the forum, I had read many of your posts for months and feel like I know you. While out of town this past weekend, I was thinking that I wish you would post something about how you are doing. I can't imagine all you're doing (changing the sheets) so soon!

Radiogirl
05-13-2010, 11:21 AM
Hi Lynette! It's been six weeks for me too. I have been off the percs and oxy for a little over a week, but am now on vicodin one pill every 5 or 6 hours. It's a third of the strength of percocet. PM me if you have any questions about weaning off the meds. I tried it too quick, and got the withdrawl symptoms....very unpleasant! I'm fine now, and will be off the vicodin probably by next week. Have you been driving yet? I'm going to start that this weekend :) Tjat makes total sense about your leg! Keep us posted. Hope it gets better on it's own soon!

jsully
05-13-2010, 12:43 PM
Thanks Lynette,
I am glad you are doing well!! Seems like everyone is coming around about 5-6 weeks or so. I am scared but looking forward to it. My pain has been pretty bad lately, don't know if this is beacause I am thinking more about it or not? I'm glad things are looking up:)!
Janet

LynetteG
05-14-2010, 02:29 PM
Laura - I weaned completely off the Oxycontin, had my last one two nights ago at 11pm. I was just taking one of those every night at 11pm. I replaced it with two percocets.

I have weaned down a few Percocets now, in fact, I'm down to one percocet every four hours from 7am through to 11pm, till yesterday I was still taking two percocets at 3pm and 11pm, today I dropped down to one, as these percocets are making me sick.

Did you or anyone else experience the following symptoms when weaning? I go from hot and dripping with sweat and then five minutes later freezing cold, and this goes on all day pretty much. Very very tired, slept while the kids were at school for almost three hours this morning, then when I got out of bed I felt very nauseous. I have not been walking or exercising like I know I should because my leg still hurts, although it is improving ever so slightly - but still I'm limping when I walk. I was told I could get a shot to eliminate the pain, but I'm really trying to get off everything by myself - and the fact that I've noticed a difference in my leg (improvement), I'm holding off on the shot.

Janet - I noticed a couple of weeks before my surgery that I started to hurt way more than usual, I think it's our body's way of showing us the real hurt that scoliosis causes us and the reason why we go for this surgery. The best part for me - even though the weaning of the pills and the leg pain have been not so much fun, it's been really great when I'm standing stationary now, I can stand and stand with no pain, whereas before, I couldn't stand stationary for more than ten minutes without horrible pain. So yes, there is a tough period to go through right after surgery, but it's easing up for me a little bit day by day, and hopefully can only get better from hereon out, and I love that I look so straight and well-postured now.

JenniferG
05-14-2010, 03:27 PM
Lynette, I'm so glad to read that your leg pain has begun to ease. I hope the speed it's improving compounds!

The symptoms you describe were similar to what I had when getting off the meds. I also had stomach cramps and depression. As soon as the symptoms went, the depression lifted. I think it was all to do with withdrawals.

debbei
05-14-2010, 05:50 PM
Did you or anyone else experience the following symptoms when weaning? I go from hot and dripping with sweat and then five minutes later freezing cold, and this goes on all day pretty much. Very very tired, slept while the kids were at school for almost three hours this morning, then when I got out of bed I felt very nauseous. I have not been walking or exercising like I know I should because my leg still hurts, although it is improving ever so slightly - but still I'm limping when I walk. I was told I could get a shot to eliminate the pain, but I'm really trying to get off everything by myself - and the fact that I've noticed a difference in my leg (improvement), I'm holding off on the shot.



those are withdrawl symptoms. cutting back more slowly will help eliminate the symptoms.

LynetteG
05-14-2010, 06:27 PM
I have another question - since I've cut back on my meds, I've noticed I seem a lot stiffer in my back, and can actually feel soreness along my incision for the first time since surgery. Is this normal and ok? Also has anyone ever experienced electric shock like stingy feelings that come and go really quickly in your back? I got it about an hour ago and it scared me, it made me literally jump, it was quick but very stingy like an electric shock. If anyone else has experienced this please tell me if this is normal also?

Back-out
05-14-2010, 06:44 PM
Amazed you're sleeping more as my primary withdrawal symptom has been terrible insomnia! (But thank God you're resting! Could it be you're just simply exhausted? Taking care of your kids and all must be unbelievab.ly hard).

OTOH it gives you an incentive to get out of bed. Remembering having a colonoscopy without anesthesia or even tranquillizer, so they'd allow me to drive myself (and directly to my second grade son's end of year play)

His comment? Overwhelming embarrassment that the father of one of his classmates (my doctor) had "looked up his mom's butt". :p

I have a request of you and all giving intriguing comments about medication use. Please tell us the dosage you take of whatever you mention. Oxycontin, Percocet and Lortab (just as "for instances") come in many different strengths. I, for one, am very interested in knowing how much you're taking, to understand.

To get "off oxycontin and on Percocet" is meaningless without knowing the strength of the active ingredient which for both is oxycodone! I guess those of you who haven't taken many pain-killers don't realize that the brand-name isn't self-explanatory about the dose.

It must be WONDERFUL to be able to stand up straight! Apart from (hopefully) pain relief, this is indeed my fantasy. That and - dare I dream? - standing and walking without the damned walker! :D

Radiogirl
05-14-2010, 08:46 PM
Lynette, You are going through the exact same withdrawls I did. Your nausea and hot/cold flashes are all part of the withdrawl. That with the added pain means you cut back on your meds too quickly. The percocets made me nauseas too...I threw up from it. Make sure you have food in your stomach when you take them. You might want to take 1 1/2 percocets instead of cutting back to 1? You should call your dr. Monday and see what they say. Mine gave me hydrocodone (vicodin) which is a third of the strenght of percocets..I put away the percs and oxy and switched to those. Now I'm weaning off those. I'm sorry you are going through this. I feel the withdrawl part is the part they really don't tell you about...we are so prepared for the surgery and the healing...but not the withdrawl...at least that was the way it was for me.

JenniferG
05-14-2010, 09:01 PM
LOL Backout!!

Lynette, the stiffness and soreness is because you are no longer taking the meds which control that. If it's bearable, it's probably not worth going back to the meds, because it will improve quite rapidly, but if it's making you miserable, it might be an idea to resume the medication you were taking, if only in a smaller dose, just for another couple of weeks. You are very early to be off medication so a little soreness is to be expected at this stage. Think of all the healing that's still going on in there!

LynetteG
05-14-2010, 09:12 PM
Thanks everyone for all your advice, that has helped me a lot. What about the electric shock stinging sensation? Anyone had that?

JenniferG
05-14-2010, 09:27 PM
Yes, I think I also had those, only a few, I'd actually forgotten them. They weren't painful exactly, more like an itchy sting. Hard to describe. I haven't had one for maybe 6-8 months. At the time I thought it was a nerve growing.

rohrer01
05-15-2010, 01:46 AM
I have another question - since I've cut back on my meds, I've noticed I seem a lot stiffer in my back, and can actually feel soreness along my incision for the first time since surgery. Is this normal and ok? Also has anyone ever experienced electric shock like stingy feelings that come and go really quickly in your back? I got it about an hour ago and it scared me, it made me literally jump, it was quick but very stingy like an electric shock. If anyone else has experienced this please tell me if this is normal also?

I get those in my legs and I haven't had surgery. I haven't had any in my left leg since my epidural shot. I still get them in my second toe on my right foot. My doctor said it was related to a nerve pathway. I'm assuming a pinched nerve. So, with this said, your symptoms are probably just coming off the pain meds and you are starting to feel what was done. My guess is that the nerves in that area that were cut (like the ones going to muscles and especially skin) are coming back to life. Just a guess though. I hope it resolves itself soon! Hang in there!
:)

debbei
05-15-2010, 07:02 AM
Thanks everyone for all your advice, that has helped me a lot. What about the electric shock stinging sensation? Anyone had that?

I'm at a year and a half now. Occasionally I'll get that sensation, but not often. I'd say that by time one year came around, it was hardly there. For me, after the (what I used to call bee stinging sensation) got a lot better, I had a period of TERRIBLE itchyness in the same location, so bad that I would have liked to rip the skin off scratching. The terrible itching is now gone too.

From what I understand, that was all nerves healing. It's enough to drive you bonkers.

doodie
05-15-2010, 08:52 AM
Hi Lynette
I'm happy to hear that your leg pain seems to be letting up a little. It is so important to keep walking and moving. :)

I concur with what others have said about your hot/cold/sweats etc being related to pain med withdrawals. Firstly, I think 6 weeks is pretty soon to be cutting them off but, if you feel that you need to... I was taking morphine (slow acting) and dilaudid (quick acting) and was told to reduce first the dilaudid, then the morphine. I began by spacing the dilaudids farther apart. Then after several days of that I cut them in half, then half again until I was off completely. Then I started with the morphine and did the same thing. It took me about 5 -6 weeks to get off the pain meds completely. Even at that slow rate I still had some issues (insomnia, but only for about 5 nights, and restless legs - that was bizarre) but I had taken them for a longer period after surgery than you.

The stiffness - perfectly normal. You're only 6 weeks out and if you're cutting back on pain meds, you're going to be more sore in your back and your incision site too. It takes quite awhile for your back muscles to relax and get used to their new homes. And depending on what was done during your surgery, your bones are still going to be sore too. It does go away - for now maybe you could try some warm baths and gentle stretching and range of motion stuff. (remember though, no bending and twisting)

The electrical shocks I also referred to as bee stings. I liked when it happened because I knew some of my nerves were healing back there. :p I can handle bee stings. It was the sometimes Bumble Bee stings that were not pleasant. I decided those must have been big nerves or deep nerves healing. Fortunately, it never lasted long. I'm a year and two months out from the first surgery and I don't get the stings very often - mostly when I've been really active it happens more.

I started getting itchy feeling skin around 2 months post-op and it was a weird feeling - when I went to scratch I couldn't feel my skin - like the itching was way under my skin. My husband would carefully scratch the places I couldn't reach or put lotion on and that helped a little. Mostly I just tried to ignore when it was bad and the feeling would go away by itself. I honestly could have clawed my skin off and I wouldn't have felt a thing. That itchy feeling really hasn't gone away since then - I just try to ignore it.

Overall I think you're on track and that you really need to be patient with yourself! Take naps when you can - eat good food, take your walks, play with the kids

Singer
05-15-2010, 10:08 AM
I had "electric shocks" that ran right up my 20-inch anterior scar that made me yell and jump. I started getting them at around 3 months post-op and they would happen when I tried to lie down, which of course at 3 months I was lying down a lot, so they were extremely upsetting. I started taking 5 mg. of Valium at nighttime for them and that helped a lot, although looking back, I believe the Valium contributed to a bit of post-op depression.

Anyway, the shocks were simply nerves waking up...but it was a crazy sensation. They finally stopped around 5 months post-op.

LynetteG
05-15-2010, 10:18 AM
That's exactly what I'm having - how you all described those bee stings, it really is unnerving, and scary when it suddenly happens. Literally makes me jump with fright, and hurts - OUCH!!!

Boy this is one heck of a journey right now, about to take the boys out for the day with some family to a swimming resort, and I feel pukey and hot and cold, just would love to spend the day in bed, as I really feel fluey type symptoms, but nothing I can do but try to get through this day somehow. :(

Talk to you all later,

Lynette.

TexEx
05-17-2010, 02:13 PM
Hi, I have been following up and am glad to see we are all doing so well. I did start to drive also last week. I have been on vicodine for the last several weeks. They had to take me off oxy in the first few weeks as I reacted too bad on it. I was falling asleep mid sentence. I was on valium with my vicodin, but quit that too because I did no like the way it made me feel. I take the vicadin about every 4-6 hours depending on my level of activity.

This is where I am curious to compare. We all seem to be in about the same place med wise, where are you on an activity level? Lynette, I know you are having to do so much with your boys, you are a great mom taking them on that pool outing and all.

I am doing great around the house, light house work, laundry with others carrying it, working at the computer, and helping clean up after dinner, etc. Anything I can do around the house so that I can rest my back for 10-15 minutes when it starts to ache is great. But when I go on a 4-5 hour outing my back gets so achey. Trying to start to do some errands or meetings and get to running my household. Also, still get pretty tired from the excursion too.

I am just curious as to how much everyone else is getting out and about. What I should expect to be able to do?

It is so good to have all this support.

Melissa
46 Yrs old
Surgery March31
T9-L5

LynetteG
05-17-2010, 08:41 PM
Hi Melissa,

It's hard for us to compare, because everyone is so different, and also - in my situation being a single mom of two boys, I have had no choice but to get on and do a lot of stuff. I basically get up at 5:30am every school morning, get the kids breakfast, put their clothes out, drive them to school. While they're at school I'll do laundry, or grocery shopping, or change their bed sheets, and usually I try to get a little nap in before I go to pick them up from school. I have been driving (even though I'm on a few meds still), places fairly close to home for the last three weeks. My walking is terrible because of my leg, I'm still limping, and even though the pain has subsided a little in my leg, walking is still a little difficult for me. I walk in the pool which feels good, and I do some hand weight exercises, and some exercises that PT gave me to do while I lay on my back to help strengthen my abs, and legs etc. I do homework with the kids, go outside with them when they want to play outside. So I'm doing quite a lot, but maybe others are doing the same as me at this stage, however, I know if I didn't have my little sweet boys, I would be resting a lot more than I am. :)

I am down to four Percocets a day now, and in eight days I will be completely off the narcotics. I can't wait, however, I'm suffering pretty bad withdrawal symptoms, the hot and cold sweats are horrible, the pain in my back is getting a little bit more noticeable, but then I get used to it, and then I drop back another pill. Each two days I've been reducing a pill and so far it seems to be working.

It's great to hear from you Melissa, sounds like you're doing a lot and doing very well which is fabulous :). I know Laura suffered like me with the Percocets, and I agree with what Laura said, we learn so much about our surgeries, but were totally unprepared for this horrible weaning off of these narcotics - YEUCH!!! To me, this has been the worst part of the journey. Maybe that's because I avoid pills for the most part in my life, even when I've had headaches in the past, I usually hold off on taking any kind of pill unless I absolutely need it, so I'm anti pills. However, I'm grateful that I had them to start with so that I didn't feel the pain I would have felt otherwise!

Back-out
05-17-2010, 11:16 PM
Lynette,

I gotta say what everyone has said already and if not said, thought.

You are AMAZING!

And weaning off the opiates too? At this stage?? I'm stupified!

I DO know what motivators children are, though. They turn ordinary mortals into extensions of the Almighty. As the saying goes, "God couldn't be everywhere, so he invented mothers."

Some may object to the notion of a deity (and personally I don't like the male pronoun! :p) but few could argue with the fact that we humans are raised above our normal capacity by inspiration and by love!

Like you.

:)

joyfull
05-18-2010, 12:02 AM
Lynette, I'm so glad you are turning the corner with your leg and are feeling the recovery moving along. My thoughts are with you and your sons. May each day feel a little better. Joy

JenniferG
05-18-2010, 01:42 AM
As others have said, it's great to hear your leg is improving. I am gobsmacked at the work you're doing, and the responsibility you've taken back, for your little boys. And dealing with withdrawals at the same time. You deserve a medal. I couldn't have done it.

LynetteG
05-18-2010, 06:28 AM
Wow - you all have made me feel fantastic! Thank you so much for that. You know, our kids take us for granted so much, so hearing from you guys that I'm doing so well, just made my day!!

My eldest son was cute yesterday. I had told both the boys that when they fight (which luckily is not often), it makes me sad and then my back hurts more, and when they are happy and play nice and show mommy love with hugs and kisses, I feel fantastic. So my eldest son comes up to me yesterday and says: "Mommy, I want your back to feel all better, can I give you some hugs?" Of course I responded with: "I love you son, now I feel a million times better." God bless our children :)

TexEx
05-18-2010, 07:20 AM
Lynette

I know it is hard to compare, you are remarkable in what you are having to accomplish! I admire you so for all that you are doing. You have two very lucky litttle boys!

Reading what everyone is going through with the withdrawls, I am so glad that I was not on the oxy and perc and went straight to the vicadin. I have been having nausia from that, but that sounds like nothing compared to having the withdrawl from the heavy stuff.

I wanted to put my inquiry out as a new thread, but could not figure out how to start one. I am somewhat techno challenged. I was just trying to get an idea of where the average patient is at this point.
Melissa

foofer
05-18-2010, 09:14 AM
Lynnette,

As everyone has said, You ARE amazing. I'm sure you are often dragging yourself around on sheer will, so I am praying that you be careful.

I was really worried when you had such terrible leg pain- I think lots of us were. So glad to hear you are inching your way back from that. Scary stuff.

When I read of your activities, my mind was saying, OK, Ok, Ok, maybe...and then when I got to "change their bed sheets" my mind screamed,"NOOOOoooooooooooooooooooooooooooo!!" I'm thinking this is one of those favorable moments to realize that A. No person has ever died from seasoned bed sheets. Or B. An excellent opportunity for a young boy to get in there and learn a new skill!

Remember to make friends with dust bunnies during this time.

All told, so proud and impressed here....
Hugs and hugs, carefully of course

foofer
05-18-2010, 09:22 AM
Lynette

I know it is hard to compare, you are remarkable in what you are having to accomplish! I admire you so for all that you are doing. You have two very lucky litttle boys!

Reading what everyone is going through with the withdrawls, I am so glad that I was not on the oxy and perc and went straight to the vicadin. I have been having nausia from that, but that sounds like nothing compared to having the withdrawl from the heavy stuff.

I wanted to put my inquiry out as a new thread, but could not figure out how to start one. I am somewhat techno challenged. I was just trying to get an idea of where the average patient is at this point.
Melissa

Hello Melissa,

So great to hear you are doing well also....really a relief. Sounds to me like you are right where you should be, but I have not had back surgery so I guess I am guessing! The times that I have had other surgeries seemed to be a get-up-and-move, lie-down-and-rest balancing act.

Took me awhile to figure out how to start a new thread and then when I did a second one- took me awhile to figure it out again. If you go up to the top and click on National Scoliosis Foundation Forums, then click on the forum you intend to start your thread. There will be a "New thread" button on the top left.....

Keep healing, ladies!!

LynetteG
05-19-2010, 06:13 PM
Thank you all again - my dear scoliosis family - you are all amazing people and I feel so utterly and totally blessed to know you all, and I thank whoever started this forum off (I think that's Linda Racine?), thanks Linda if that's you, we would be lost without this wonderful place! Love and hugs XXXX OOOO

Back-out
05-19-2010, 08:29 PM
:)
(We need a hug emoticon and also ones for waving and comforting).