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Singer
01-28-2008, 06:26 PM
I don't know if it's because I got a nearly 100-percent correction in my 50s or what, but no amounts of Aleve, Tylenol or Advil does one damn thing for my discomfort. I hate to keep harping on this and I will be meeting with my pain management guy later this week (who prescribes abdominal exercises, thank you but that's not cutting it). I'm going a little crazy and wonder if any of you have found success with any kind of medication that is NOT narcotic but maybe stronger than over-the-counter stuff. If I took enough Tylenol to be comfortable my liver would explode !!!!! :eek:

I am not in agony but I AM having trouble functioning the way I was when I was on Oxycontin, which I do NOT want to get dependent on again.

Thanks!!

txmarinemom
01-28-2008, 06:43 PM
Chris ...

I've meant to ask you this before ... and please, please, take this in the spirit intended (not armchairing, not accusatory, just curious based on what I've read) ...

Isn't correction of almost 100% (or even *close*) almost unheard of?

Most surgeons refuse to take someone someone in their early 20's, MY age (and let me state NEITHER of us are old!! ;-) to that level of correction because of stress on the body and potential for decompensation.

Hanson estimates (even with my physical state/extreme flexibility) correction down to 20 (from 53). BTW, my rotation at the apex is about +2 ... perhaps this factors in.

Regards, girlfriend ... and I'm sorry you're in pain :(.

Pam

Singer
01-28-2008, 07:05 PM
As big as my curve was, it turns out I was extremely flexible, especially for my age, which is why Boachie was able to get such a HUGE correction. I suppose I'm not being technically accurate when I say 100 percent, but when you figure anything less than 10 degrees isn't even scoliosis anymore.....that's what it seems like (and feels like) to me.

Boachie did say my tissues (muscles, tendons, nerves) took a tremendous beating during my two surgeries (hence the weak leg). I wonder if I would be in less pain if he'd only gotten my curve down to say, 30 or 40 degrees (which is what he was predicting before he got in there and started cranking). I wonder if there's a correlation. No way of knowing, I guess.

I will say though: my body LOOKS absolutely mahvelous.

laurieg6
01-28-2008, 07:07 PM
Have you tried some gentle swimming or water walking? I'm not sure if you're interested in acupuncture treatments but they've been known to help some kinds of pain. Also, massage might help - my son and I have had craniosacral and hellerwork massages and, especially the hellerwork, it feels amazing on an injured/recovering back.

I hope it feels better soon.

trulyaries
01-28-2008, 07:42 PM
It's by no means a miracle drug, but I'm on Oxyprozin (generic for Daypro) - an NSAID. Ever since they took Vioxx away I have had difficulty finding something to lessen my pain. In the last few years I seem to have developed an aversion to a lot of heavy-duty pain killers, so they were off the list. I was on Voltaren for quite awhile but suspected it was raising my blood pressure and that's when I switched to Oxyprozin. I was right. BP is down and I don't have any side effects. I'm not completely free of pain but it helps and in fact I had to stop taking it today in preparation for the surgery. I'm not looking forward to the next two weeks without it. Just one suggestion.

txmarinemom
01-28-2008, 07:54 PM
I feel your pain (pun intended?), trulyaries ...

Tylenol does NOTHING for my pain, and that's all I'm allowed to take for now. At *least* ibuprofen is an anti-inflammatory and helps minimize disc protrusion pain for me.

Arggggh.

Theresa
01-28-2008, 08:43 PM
Chris,

I'm kind of in the same boat as you! Except I still take the narcotics. After the first surgery in 2004 I was down to 1 maybe 2 Vicodin a day. After the second and third surgeries the pain level has increased. My pain management doctor has said I have all three types of pain. Nerve pain, mechanical pain, and structure pain. I just had my 8 month check up following my last surgery this past May. I am finally standing erect and not falling forward anymore. But now I am going in to have an EMG done on my upper extremities to see why my hands are going numb. It's not carpal tunnel. That nerve is only mildly impinged. I will also be getting x-rays of my neck done to make sure everything is okay there. My pain management dr has said that I will problably always have pain. Our poor bodies were twisted for so long that no matter how straight they get our bones to look, I'm afraid there has probably been to much tissue damage done. I keep telling my husband that as he ages and starts to fall forward and walk bent over like I was, I'll be walking straight as a board and probably flying higher than a kite!

trulyaries
01-28-2008, 08:47 PM
Pam - Tylenol does nothing for me either. This no-drugs-pre-surgery business sucks. :mad:

txmarinemom
01-28-2008, 09:40 PM
I couldn't have said it better feliciafeliciafelicia ...

Singer
01-29-2008, 05:41 AM
Thank you, ladies.

The overriding feeling I have that I wish I DIDN'T have (aside from pain) is that I am afraid of my spine....fearful of injuring it. I think I may be losing perspective on things and may take a break from the Forum for a while, as it has been feeding my fears and worries lately.

trulyaries
01-29-2008, 09:20 AM
Oh, Chris - Don't be sad - big hugs coming your way! :)

Susie*Bee
01-29-2008, 10:02 AM
I'm so sorry you are feeling so discouraged! :( I'm about a month ahead of you and it keeps getting better--just slowly. My pain is ok, but maybe my arthritis medicine (voltaren) is helping block some. I don't know. I just get a little achey when I overdo... but haven't had to take any pain med for awhile, or anything else except for occasional headaches.

Try to remember how far you've come and that this takes longer than we imagined, even if we were informed of it. I knew it would be 1-2 years, but still thought I'd be doing more by now. But I try to feel content with the progress I've made thus far, although sometimes it is frustrating/a little disappointing. As far as being afraid of injuring your spine, I THINK that's normal-- hence the thread I started yesterday about how come rods break... It is scary, especially when we read about people going on 4th and 5th surgeries, etc. I just figure we can encourage them and also know that's a possibility that might happen. I'd rather be prepared in that way than have it happen out of the blue and be bewildered by it all. Regardless, the Lord is good and we'll be able to manage "whatever" ... We'll get through this--and you are a strong person to have gone through the surgery and you ARE on the road to recovery! I'm sending hugs too.

CStadler
01-29-2008, 11:08 AM
Chris,

I'm kind of in the same boat as you! Except I still take the narcotics. After the first surgery in 2004 I was down to 1 maybe 2 Vicodin a day. After the second and third surgeries the pain level has increased. My pain management doctor has said I have all three types of pain. Nerve pain, mechanical pain, and structure pain. I just had my 8 month check up following my last surgery this past May. I am finally standing erect and not falling forward anymore. But now I am going in to have an EMG done on my upper extremities to see why my hands are going numb. It's not carpal tunnel. That nerve is only mildly impinged. I will also be getting x-rays of my neck done to make sure everything is okay there. My pain management dr has said that I will problably always have pain. Our poor bodies were twisted for so long that no matter how straight they get our bones to look, I'm afraid there has probably been to much tissue damage done. I keep telling my husband that as he ages and starts to fall forward and walk bent over like I was, I'll be walking straight as a board and probably flying higher than a kite!

Hey Theresa, could you empty your inbox, I tried to send a mess but it said your box was full. Thanks

rainbow2010
01-29-2008, 11:22 AM
I exercise in a therapy pool. They keep the water at 90 degrees. It is a great way to exercise and get pain relief at the same time. If you do water walking, walk in chest high water and remember that 10 minutes walking in the pool is the same as 30 minutes walking on land. You can also try a heating pad for pain relief. I take tramadol when my pain is real bad.

JoAnn5
01-29-2008, 11:56 AM
Could it be that the exercises to strengthen your abdominal muscles are irritating your spine /nerves/ hardware?

When i was visiting in England, i consulted my friend's physiotherapist just to get a sort of second opinion. She could not believe the exercises my post-op therapy included. She said most of them were 'generic' sort of exercises intended to keep the lower back supple... NOT something that someone who had fusion to S1 and instrumentation should be doing. I just don't think that many physical therapists have the experience needed to help scoliosis surgery patients.

It has also been my experience that most doctors are suspicious of continuing chronic pain. It's understandable to a degree considering the widespread abuse of pain medicine.... but very disheartening to those of us who have the pain and not many recourses.

suzyjay
01-29-2008, 12:45 PM
Thank you, ladies.

The overriding feeling I have that I wish I DIDN'T have (aside from pain) is that I am afraid of my spine....fearful of injuring it. I think I may be losing perspective on things and may take a break from the Forum for a while, as it has been feeding my fears and worries lately.
Chris

At 7 months post op I had pain and at times bad but I was afraid to go back on the prescription pain meds too. Now I am almost 1 yr. post op and for the last couple of months the pain has reduced a great deal, and I have a staph infection and crooked hardware that will soon be removed. Its normal to worry about hurting you back. You have been through a lot physically and mentally so continue to stay strong you are doing fine.
Sue

Karen Ocker
01-29-2008, 06:46 PM
Chris:

The pain doc is the right source.
Neurontin(gabapentin) was given to me and helped nerve pain like nothing else;
certain antidepressants have great pain relieving abilities, especially easing one off narcotics. The TENS machine, when properly used(the manual is a great help) is very effective.
Also, what works for one does not always work for another.

Linda W
01-29-2008, 07:14 PM
Hi Chris,

Sorry to hear that your nagging pain is getting you down. Like you, I take copious amounts of Tylenol. I'm also afraid for my liver so I only smell the wine cork at dinner. I got a bit braver on New Year's Eve and had a half of a glass of champagne. Before surgery, I took Arthrotec for arthritis pain in my back and many other body parts. It was tough on my stomach but an effective pain reliever. Dr. Rand has asked that I stay off it for another 3 months. I miss it. It might be worth asking your pain doc if there is a non-steroidal pain medication that is used for arthritis pain that you could try.

At my 6 month check up, I got the ok to start PT. It is a pool and land program. Yesterday was my first session. I cannot tell you how good it felt to be submerged in the warm water. I could feel the lobster claw/bear claw lessening its grip on the mid section of my back. The therapist also suggested I try some acupuncture for the spasms and nerve pain. So I did that today. I also have the heating pad on when I go to bed -- the automatic timer shuts it off after a few hours hopefully while I am asleep.
When I compare my current pain level to where I was a year ago, there is no question that it is both different and less than what I had become used to for many years.

My pre-surgical expectation of being totally pain free after surgery was perhaps a bit too optimistic. One of the house docs at the rehab hospital had a candid chat with me before my final discharge. He said, "Get a grip, Linda. You will never be totally painfree with 3 pounds of stainless steel in your back. You will experience far less pain than you ever had before but you will probably always have a bit of a back ache." I was still pretty highly medicated at that time and probably just smiled and said "Thank you" without absorbing what he was really saying. My worst days now are 100% better than my best days before surgery. My correction is about 50% and it works well for me as I am pretty well balanced and standing straight. I did come out with some weakness in my right arm which is getting better over time, and I am hopeful that it will be completely resolved.

I can totally understand if you decide to take a break from the Forum. Please know, however, that many of us would miss you and your honest, candid posts and your sense of humor. Where else could you find such a sympatico group of friends who are here for you duirng the good, the bad and the ugly? If you take a break, don't stay away too long.

Linda

Singer
01-29-2008, 07:45 PM
Thank you so much for the encouragement.

I see my pain management doc on Thursday and will have a heart-to-heart with him and take some of your ideas with me.

This has just been such a scary surgery and recovery. I wasn't prepared for how challenging it was going to be! I don't want to scare anyone facing this soon; it's just the way it's been for me.

lelc2002@yahoo
01-29-2008, 07:54 PM
Joann5 & others---I totally agree with you Joann about the P.T. I have been the only scoliosis surgery case in the out bound rehab center I go to(as I continue to use their facility) & I can tell you they did not seem to know what to do with me in the beginning on exercises though they worked it out. I continue to do the same routine now & can only hope it's doing me good. I am now wondering what exercises others are doing who have the lower fusion??
thks-Lynne :)

RiRi
01-30-2008, 09:45 AM
Hi Chris

I feel that I can relate to you because my surgeries were June 26,27 and July 3, 2008. I had 3 surgeries because during my 2nd surgery I bled too much. I am still in pain and I am limited to what I can do. I don't want to get hooked on the pain meds but it does help alot. My dr took me off oxycontin and oxycodone and gave me ultram. He said it is stronger than a tylenol and not a narcotic. I've been taking this since the beginning of January, it eases the pain a little, b ut I am glad it is not a narcotic. Now I wonder if my pain will ever go away. Also my legs are very weak and my hamstrings are extremely tight. The dr said this is all due to to the muscles and nerves being manipulated with during the surgeries. The dr feels that I should give it a year and then see how I feel.

I guess we all have to hang in there and hope for the better

Thanks for listening
Maria

Susie*Bee
01-30-2008, 10:08 AM
I don't know if it would be of any help with your cases, but my doctor prescribed PT for me at 6 months post-op, but for legs and arms only-- nothing that would be stress/strain on my back. I realize some P.therapists may not know what is ok or not, totally, but that's not to say they can't help. There were a couple of things I said "let's wait till I check with my scoli nurse"-- one was ok and one was ABSOLUTELY NOT!!!! :eek: That's how she put it. (It was a "bridging" exercise...) And she said the golden rule is, if it hurts, don't do it. I am amazed at the difference in both my arms and legs from before I started, but especially so with my legs-- including stretching the hamstrings. Even though my PT guy wasn't totally right in all things, he was so good and helpful, and very cautious. He started me off very slowly and conservatively, but built me up within those 6-7 weeks quite a bit. I miss going there! He's hoping I can come back when I've been cleared to do more with my back. In the meantime, I'm keeping up with my home regimen...

Karen Ocker
01-30-2008, 01:54 PM
I take copious amounts of Tylenol. Linda W

My pain doc said the maximum safe dose of Acetaminophen(Tylenol) is 4 gm a day(4,000mgm). This would mean 2 Tylenol Arthritis 3 times a day. Also watch any other medications with acetaminophen hidden in their composition.
Problems with the liver came from taking it with alcohol-since it's metabolized by the liver or taking excessive amounts.

Linda W
01-30-2008, 08:57 PM
Karen,

Thank you for your note. My personal limit is 4,000 mgm per day of Tylenol. I have been at 4,000 for a long time, and I'm careful to insure that I am not taking anything else with hidden Tylenol in it. I'm actively working to bring my current use down to 3,000 - 2,000 mgm. Believe me, when I say I only smell the wine cork!

Thank you also for your consistent, helpful and thorough responses on this Forum. I'm certain that all of us appreciate and benefit from your experience and wealth of knowledge. Thank you!

Linda W.

Theresa
02-01-2008, 09:25 PM
CarolS,

I didn't realize that I had saved that many messages in my box! Thanks for letting me know. It is now empty.

itsjustme
02-02-2008, 11:52 AM
have you tried using a TENS unit??? I've got the IF3 wave and that does wonders. Use that with an herbal heat pack you pop in the microwave and voila! :) I try to stay off meds as much as I can. I don't want to give the govt a reason not to keep me around. lol :D

Writer
03-12-2008, 01:14 AM
It breaks my heart to read so many reports of you people having to take pills for pain. Nobody seems to have picked up on Susie's post about being helped by physical therapy. To me that is the first thing I'd try.

In fact I did (for scoliosis, though not post-op), and it worked. I have no more pain. In my case some simple physiotherapy exercises did the trick. I know people including a post-op whose cases are more complex but who also reduced or eliminated their pain with proper exercises.

I suspect the hardest part may be finding a PT who can accurately diagnose the source of the pain and design the right regimen for you.

CStadler
03-12-2008, 09:13 AM
Writer,
I wouldn't be to quick to label everyone with one brush stroke. Granted there are those out there who do not exercise and therefore make their conditions worse but I for one did yoga daily, exercised 5 times a week, worked in a very active enviroment, had tried Chiropractors, Massage, Physio Therapy, reflexology, and even a cortisone shot once. My surgeon told me I had done everything possible to keep my back as healthy as I could but with degeneration it was inevitable that I would need surgery one day.

Writer
03-13-2008, 01:30 AM
I'm afraid the point has been missed. Most of us have tried regimens that did little or no good. I suggest that if the right exercises are prescribed and performed, then physical exercises will often alleviate a great deal of pain and the need for drugs. An example:

http://www.ministryhealth.org/display/router.aspx?DocID=27612