Since I have found out that my back is broken, I have decided that I am going to put off surgery as long as possible. Considering that I have done nothing but sports my whole life, this is pretty much the worst news ever. I have started weight watchers and I am trying to drop as much weight as I can in the healthiest way possible. I need to workout so I am trying to control the pain. I got my first cortisone injection Wednesday and i was pain free for 4 days. I didn't realize how bad I was hurting until the pain went away. I had so much more energy and was finally myself again. (my family even noticed the difference) but now, it's 4 days later and the pain is back.

I am miserable. I didn't realize how much pain I was expierencing until it went away. Is there anyone out there that has any suggestions? I have done the injections once.... Do you think that they will will have a different effect if I have them again? If they do not work, any suggestion for pain management?

Hi anniemack,

You mentioned that's what your doctor had recommended in the first place:
IME, it's unusual for a surgeon to suggest/recommend that; I'd go with it. (Actually, my surgeon said something similar, and I AM going with it! ) My Ortho surgeon said some natural healing/fusing will take place over time, and acknowledged more risks and statistics than some. Perhaps your doctor is hoping some natural healing/fusing may happen in your case too(?)

This sounds like it could be one of those cases/situations where the initial surgery (T14-L4) hardware may have weakened adjacent vertebrae above & below (below in this case). Did your surgeon happen to mention anything about this, or if overdoing the athletics (bowling & golf can pretty hard on lower back) may have been a contributing factor? I really don't know, but can't help but wonder/ask...

Moving along... Historically, I always found it easier to lose weight after I figured out what body/metabolism type I am/have. I'm carboholic, so protein/good fats and no/low carb diets work best for me (my wife is just the opposite). If you already know your type, cool ; if not, google: body type dieting. Those articles will help you figure that out and tailor the best diet for you.

Like you, I also have problems losing weight from the pain & inability to exercise actively. There's a diet in the back of The Intractable Pain Patient's Handbook for Survival (Pg 34) that's helped me a LOT; it's also a low carb diet, and helps with the pain as well.

For exercise, I'm still pretty limited, so we've taken up Tai Chi (DVD - some programs are tailored specifically for people with spine issues, pain, arthritis, what-have-you - we found one for folks confined to chairs), we walk when we can, and throw the ball for ol' slobberpuss...

Injections didn't work for me, so I'm not much help there. Other than that, there are a lot of things to try, but not being you, it's hard to figure out what might work for you. You mentioned pain being worse after exercising than during; if this (or some significant part of your pain) is from muscle spasms, myofascial triggerpoint therapy may help (it helps us a LOT).

Pain meds may be necessary to afford you a reasonable quality of life and functionality. There's a lot of information on this and other PM therapies in the Intractable Pain Handbook I mentioned/linked to above. I urge you to download, print & read the whole book (40 pgs). It's free and indispensible.

Doc

Boy, you have received a boat load of good advise. Some of it will be helpful. Some of it won't. If there was a silver bullet, we wouldn't be here I would just add that you need to be careful about the type of exercise that you do. Until you get this nailed down, I would confine it to power walking and resistance bands. You don't need to be jarring things. Back when I was able to, I did 30-45 minutes at 4mph and that was intense enough to raise the heart rate and work up a good sweat. I did this in the early morning and often repeated it in the early-mid afternoon. This got those endorphins pumping, improved my mood, energized me and actually reduced the pain levels somewhat. The resistance bands help with upper body strength but can be used elsewhere of course. Hang in there.

Annie--I have a similar story. When I was 15 years old, I was diagnosed with a S curve scoliosis and had one rod put in my back to hold my spinal fusion from my midback to L5-S1. That surgery was done in the 70s and the technology was limited (flat back syndrome). So after having 2 children at age 28, I had 2 surgeries to reconstruct my spine. The first one, the surgeons went in through my side, removed a rib, deflated my lung and took out my old rod. They cut wedges in my spine to make it flexible so they could do the 2nd surgery.

A week later they opened up my entire spine and fused from the base of my neck to L5/S1. They totally redid my spine with 5 rods and 33 clips and pins. I lived in a full body brace with part of it going down my leg for 6 months. A year later I was walking with a walker and in constant pain. I had two small children at the time. After recieving prayer, Jesus gave me mercy and health to have a good quality of life to be a mom! After prayer, I was so much better!! I kept feeling better for the next 17 years!!

Then 3 years ago something very strange happened. In the matter of a couple of weeks, I developed "drop foot" in my right leg. Everyday it got worse for 2 weeks--I could not lift up my right foot/toes well because of partial paralysis. The doctors don't really know what happened but suspect L5/S1 compromise with the nerves. Since then I have developed neuropathy in both legs and arms, fibromyalgia, much pain and still have the drop foot. Ugh.

The doctors showed me in the x-ray that I have developed arthritis in my neck and in my hips. They said that my hips are "fusing" together. The neck and hips are stressed because they are the only parts of my body that move. I am 70 lbs overweight. I recently lost 23 lbs. It is very hard to lose weight because I have difficulty walking more than 200 yards.

My advice to you is that if you are overweight do your best to lose the weight while you are young to avoid developing severe arthritis when you are older. If you can, keep your weight down. Also, keep active as much as you can. Strong muscles help hold the spine and posture and entire body. Being stronger and lighter also helps you avoid having problems with your knees and ankles (I have inflamed feet and ankles). Also, you can never have too much healing prayer. Prayer/Jesus is my only hope because the doctors say that I have too much instrumentation to have any more surgeries.

I thought it might help hearing an older person's similar story so that is why I posted. God bless you--praying for you.

Annie, I've had spinal surgeries, but not fusions. The surgeries made me worse than I was before and left me in horrendous pain. My only other option was pain management.

Annie, believe me when I tell you that the narcotics do NOT make you "dull-witted" or loopy. You're taking them for PAIN, and that's where the narcotics go! For some reason, they don't affect my mind AT ALL. I guess that's because there IS alot of pain, and that's what the meds are for.

I've been taking narcotic pain meds for probably 15 years now, and not ONCE have I felt a "buzz" or a "high" or any kind of mental dullness. If I had, I would have stopped taking them since I'm a recovering alcoholic/addict! But without the meds, my pain is a 9-10. WITH the meds, it's about a 6. So I CAN live with that!

Please think about it. There is NO reason to suffer Annie. Not when help is available. If nothing else works for you, please try them. You deserve some comfort. God bless and please take care. Hugs, Lee

Leesa is absolutely right. You do NOT get foggy or high on narcotics when you are in pain. the medication goes to the pain, so you stay clear headed. No medication I have ever taken has produced a "high" for me. Don't be afraid of them when you need them. ginnie

I too had T3- L3 spine fusion surgery for scoliosis in 1988. I am now 37 years old, a mother of a 5 year old active boy and a YOGA teacher. Yep you heard that right .. .a yoga teacher.

I have found that my 10 year study of body/mind medicine through yoga is the way to keep my body in shape as well as connect in a healthy way to my body rods and all.

*admin edit*

But here is the truth that you must accept about maintaining a healthy spine years after spine fusion. You CANNOT lift anything over 15 lbs. Just accept it .
There are certain activities that will not benefit your body in the long run. I have retired any idea of playing golf or tennis (too much twisting) and I am very careful to ease into any new activity. I realize I could pretty much do anything in my 20s but now it is about long term preservation of my unfused spine and support of my fusion. And yoga meets all my needs ... I have learned to modify my practice though and now have 'retired" a few advanced poses that I believe won't serve my body in the long run.

Best wishes to you,
Julie Wilkins

I'm 54. Had fusion l4,5,s1, 7 screws and plate. My wife has scoliosos and wore a brace. She has difficulties because shes older now. From both our experiences i can tell you keep moving, excercise, physical therapy, acupuncture, massages, and biofreeze. No ibprofen or anything like it. Will eat your stomach. Keep yourself up, happy, positive, even on bad days. You have to keep the muscles loose, stay away from tension as much as possible.

Hi, I am also desperate for some advice, I have a very similar story. My scoliosis was diagnosed when I was 7. I am currently 24. I wore a back brace during middle school (ugh that was miserable) and without any improvement I had to have spinal fusion surgery in 2004 when my top curve reached over 50 degrees. I had a backwards "S" and my bottom curve was smaller but almost "evened it out" as they said, so it was a pretty drastic curve as well. During the summer before I entered highschool I had the spinal fusion surgery along with my sister! She had more of a C curve but what are the odds that we both had to have it...in the same week! She does not feel as much pain now because she is fused all the way down unlike myself. My rods go from the bottom of my neck about 3/4ths down leaving the lumbar not fused (so I could play sports). So I played soccer and ran track throughout highschool just suffering from mild chronic pain..which I thought at the time was sooo intense, until I found out within the past year how bad it can really get. In highschool, I suppose that being active really helped, but I also was prescribed Tramadol (Ultram) for all of my highschool years and a lot of my college years...until I finally found a doctor that told me to get off of them and I would feel better. I was so naive at the age of 15 thinking that they would help me because terrible doctor told me so..he originally offered fentanyl patches!...to a 15 year old!! Thankfully I did not pursue that route but I was still falling asleep and drowsy all of the time in classes from the ultram. It fogged up my whole highschool years and I really regret that. So after I finally went off the the Ultram, I was feeling pretty good actually. Then, something changed. I started feeling more intense pain than I have ever felt. It feels like I can't even hold my own Head up on my neck. And it also feels like there are 20 elephants sitting on my shoulders at all times. This new feeling of the intense neck pain has gotten sooo bad that I have been miserable. I usually have such a positive attitude, even knowing that I will be dealing with this pain for my whole life, but once it gets to a point where there are no moments of relief EVER, it really takes a hold of you. My personality has changed and I've noticed I have become very short with the people I love due to how intense the pain is at all times. It feels like someone is strangling me in my sleep every night and I wake up with my neck feeling so weak and sore and literally every single muscle is so tight that it feels like they could rip at any second. I have tried everything that the doctors have ever offered. I have gotten different types of injections and none of them helped. I couldn't even sit through acupuncture due to how incredible tight ALL of my muscles are everywhere. I had also gotten a mylogram done and of course the 15% chance of getting a spinal headache happened (where your spinal fluid is still leaking from your spinal cord). So they had to do a blood patch where they take blood from your hands and patch the whole in your spine with a giaanttt needle!...and they ROYALLY messed that one up. The so called "doctor" is sitting there for 45 minutes pulling the needle in and out of my spine saying he cant seem to find the right spot due to my scoliosis, while the people getting the blood from my hands could not seem to get the blood into the containers so there as blood everywhere. It was the most traumatizing experience of my life and I thought I would not be walking out of there. Thank goodness eventually they finally did it and it got rid of the spinal headache..but all of tha to find out tht there was no nerve damage! I knew this at the beginning because I can feel that it is alllll muscle inflammation and spasms. They are constantly being pushed and pulled form the rotation of my spine. I believe that my neck and lower back (the parts that are not fused) are trying tocontinue to curve which is not fun at all and I am so scared of the thought to have to get another surgery...although I am sure that the new technology is a lot better than my Harrington Rods. I have tried basically every single possibility of non-narcotic pain treatments including some anti-depressants that claim they help pain and have had no success. (and at the age of 24 that is pretty sad) I have been taking Soma which helps temporarily, but I have gotten to the point of needing it too often. I dont want to have to take anything too often. It has gotten so bad that I cannot stop losing weight, along with my hair constantly falling out more than I have ever experienced. I AM SCARED. My weight went all the way down to 104 and I was able to bring it back up to 109 which is still a little over 10 pounds less than my normal weight has been. I am very worried about my hair loss and I was wondering if these symptoms are really from how terrible the pain has been for the past 6 months. I am sorry for writing such a long post, and I really appreciate it if anybody made it through my whole story. I am also in dire need of some help. I did not want to go back down the road of pills but it has gotten so unbearable lately that its hard for me to work, and just live. I recently got prescribed Tylenol 3 with codeine temporarily with the soma so that I can not be so miserable. It has helped to take the edge off but at such a young age, I would rather not take tons of pills everyday. I am desperate and I would appreciate any advice soooo much. I am searching for another physical therapist to try because at this point I am open to anything. I was informed about InferRed light therapy as well so if anyone knows anything about that I would greatly appreciate your input. Thanks so much again for reading, I will NOT let this keep bringing me down. A change needs to start now. Any advice is good advice at this point so please if you see this and can help, you are amazing. <3
Sincerely,
-Alisa

Hi Alisa,

And Welcome!

I read your whole story and can offer no advice about the things you ask, but I am pleased you still have such a positive attitude.

I had my first spinal injury in my teens and the excruciating pain I suffer from multiple issues started 25 years ago, so I understand what you are feeling. I also know Tramadol, and a cabinetful of other pain meds I need just to get from day to day.

What I can offer is an ear (well, eyes that don't work too well) that you can vent to so you do not have to be short or snappy with those around you. We are very good as a Community for protecting Real World relationships.

It is clear from your attitude you have not fallen into the Depression trap so many of those with Chronic Pain succumb to. Therefore, I will not bother suggesting Therapists or Counsellors. Just make sure you always maintain that attitude.

Wherever your Journey takes you I hope you choose to allow us to accompany you.

Dave.