Living with Spinal Fusion due to Scoliosis
 

Annie -

I personally haven't had spinal fusion surgery yet but I have several aunts and cousins who have had their spines fused for scoliosis. The cousins had surgery while in high school (early to mid 80s). I believe my aunt said she found yoga and Pilates to be the best at helping her cope with the pain and problems. One-on-one instruction or a small group may be better at least at first so the instructor is aware of your situation and can help modify the positions to help you the best. My aunt also sees a naturopathic physician who offers suggestions regarding supplements that might be beneficial to someone dealing with chronic pain.

I have back problems, too, but not severe enough yet for surgery. For me, I find acupuncture and massage to be the most helpful. All I can suggest given my own experience and watching my aunts/cousins is you need to keep active as possible but listen to your own body. If something doesn't work for you, try something else. Maybe cut back on the extent of the activities but still keep active. I work out every day but can't do the activities I could do years ago before my neck/shoulders were injured in a car accident.

Good luck!

Hi Anniemack, :welcome_sign:

We believe you; believe me. :p

Have you been referred to Pain Management (PM)? PM can offer many options beginning with those that are least invasive (e.g. physical therapy) progressing to those that are more invasive (procedures involving surgery).

Inversion therapy is an "alternative therapy". There are others, but few are currently accepted by the medical establishment (or covered by insurance). This doesn't mean they shouldn't be tried, but I'd still look into them carefully and talk them over with your doctor so you don't try something that may exacerbate your condition. Myofascial Trigger Point Therapy and Acupuncture are other alternative therapies that may be worth investigating (with the same caveat).

Doc

Hello anniemack
 

Welcome to Neuro Talk,
We are glad you found this site, as you can already tell you will get lots of information and compassion. In this instance I agree with Doc. Smith to get an evaluation with a pain specialist. He can get you into the right kind of non invasive therapy with out making your current condition worse. You don't want to engage in those activities that hurt. Listen to your body. I am so sorry you have this condition. I reversed the curve of my cervial spine and was fused C3-7 so I do know a little about what a curvature of the spine feels like. I now am limited to what I can do, which is OK by me, as the pain isssue from neck is stable. Please do seek an opinion, with regard to your pain, and what kind of therapies may be suggested to you. In the meantime welcome again, and feel free to explore all the sites that are on the forum. You can join in any conversation you want to. Hope you meet some new friends too. ginnie

Scoliosis
 

So sorry to hear you have problems so young. My scoliosis did not start until I was in my late 50's (Adult Degenerative). Have had three fusions. Best advise I can give you is try to find a good surgeon to reevaluate you. Possible there is more that needs to be done. Not something to look forward to but maybe the best alternative.

HI,
It could be arthritis from the surgery and a pain specialist (not a psychotherapist) could help you. I researched the very best doctor of spine surgery in our area before going to my present doc. He's good.

I would suggest you get another MRI from a competent Doc. He could tell you, maybe, what the problem is now.

I have had C -spine surgery and having some more in April, and L-back surgery twice (the first didn't graft).

They sent me to a pain center first and it was a therapist talking to a group of patients. Not for me. Then they sent me to my Anesthesiologist pain specialist and she can do WONDERS. I thought I would be in a wheel chair, but she does her job and part of my problem was arthritis as well as the fusions.

Praying that you get some good information for yourself. Take your time before going into surgery to be sure that your diagnosis is correct.

Malinda

Update
 

Wow, thank you everyone for your insight. i appreciate it very much! Makes me feel like i am not alone in this process. i have an update on my condition and i wanted to see what everyone thought. i need advice here. The pain has just been getting worse and i am getting to the point that i am just miserable.

So, i finally gave in and went to the docs, my family doc. he referred me to a different ortho surgeon (that works in the same office as my first surgeon). I went to see him and they did a good exam on me, asking me to bend and tell them where the numbness is, pain points and locate sharp pain. After reviewing x-rays he wanted to send me for a CT mylegram to get a better look.

I had a CT- mylegram done about 2 weeks ago (giant needle in my back so not cool) I went today to have the text read by my doc. i have 2 broken vertebrate. L5 and S1. I am already fused from T14-L4 and he now wants to fuse the L5 and S1 to fix the breaks then fuse that to my pelvis. Also he wants to remove my current hardware.

I am a very active person. i golf, bowl, fish, bike... everything. i love to be on the go. Doc says that if i have this fusion i will not be able to bowl or golf anymore. Not because he is going to restrict me but because i physically wont be able to do it anymore because i am going to lose alot of motion. Anyone out there had this done? If so, how much was your motion decreased?

He also suggested cortisone injections to see if it will help manage the pain. Has anyone had any success with that? i have never had it done. But doc wants to take this route because he said that the surgery will be painful, way worse than my first.

Lastly, he said that lots of people live with this everyday. and that i should hold out as long as possible before i have this procedure done. But from my perspective, i am already in a ton of pain all the time. everyday all day is like a 7. if i do any type of lifting (like simple housework, laundry and dishes) i am unable to stand without my pain being like an 8 or 9. He said that it would improve my quality of life by like 30%. He said if that was enough for me then he would do it. i am just afraid of how restricted i will be. i want this to be a fix not create more problems....

any input yall have i would really appreciate!


Photo 12 is what my back currently looks like, you can see one side of the break on L5

Photo 13 is a sample of what i would like after this surgery, if i elect to have it.

Hi Annie
 

I am so sorry you have to endure this kind of thing. I am glad you got the test and all. I wonder why he didn't do an MRI? I did look at the pictures, and clearly see the bend, and where the break is. I also understand what he intends to do with fusing to your pelvis. Is he the only doctor you have seen with this new current problem? Have you seen a neurologist?
I do know that some mobility would be lost, simply because of the solid rod, going to the pelvis, twisting side to side etc, bending over, would be compromised. I am fused C3-7 and it did stop me from being able to drive at night. Twisting back over my shoulder is not so good. I do know that removing old hardware and putting all this new in will be hard on you. Please dicuss pain medications completely before you decide to do this proceedure. You have a right to be kept comfortable and not in intolerable pain. If you have a pain specialist, this would be the time to dicuss this. I was on pain meds before my second fusion. At the time of the surgery, they did not consider that I had been on medications for years, and I did not receive enough in my opinion after my surgery. There was no dicussion between my pain specialist, and the neruo surgeon who did my surgery. My son had to intervene to get them to discuss the issue. Those things need to be talked about before you go in OK? I am not sure you really have an option, as this verterbre really does look damaged. My neck did the same kind of bending as you are presenting. I did not have a break, but one folded over another etc.
Please let me know how you get along. I do care, and I really will keep you in my prayers. I wish there was something I could do for you. ginnie

Inversian therapy
 

Hi annie, I just did a little research on this. I am not a doctor by any means, but I wouldn't do this therapy after seeing the condition of 5. You have a definate vertrebre trying to go over the other one. I can also see why laying flat would be a painful thing. See a PM doc. until you decide on your course of action. I am so sorry you are young having to go through this. You don't have to worry about seeming to complain, you have every right to vent and question this. We are behind you on your decision and will support you through what ever you have to do. Be good to yourself. ginnie

Ginnie,

Thank you so much for your post and more importantly the prayers! i am a little overwhelmed with all of this new information. i didnt expect to have this much going on.

My doc said that he didnt want to do an MRI because of all the hardware i have in my back currently. he said that it would look fuzzy and could get a better pic with the mylegram. They injected dye into my back so they could see everything better. not a fun procedure, i had a killer headache for like 3 days after.

I am going to discuss pain meds with my family doc. I need to lose some weight. i want to see if i can drop 20 pounds and possibly feel better. but working out is SO painful. the pain during i can handle its the aftermath that kills me. i cant seem to relax after wards or lay flat, sitting hurts. So i was thinking that maybe my doc would prescribe a pain med so i can get thru this and get my body back to being strong and then make a decision from there.
i have alwasy been against narcotics because i thought if i started taking them i would never quit because its not like the pain is going to stop. If i take them over a summer and have a goal to stop (light at the end of the tunnel) then it will help motivate me through it.

I did find a website on line that can do fusions othoscopically (sp?) I sent them my information and CT results, so maybe they will bring some better news.

i am probably going to opt to have the surgery. i dont see another answer, it seems to me that if my bones are broken in my back, that isnt something to let go for too long. i am thinking that i will have surgery at the end of the summer. at least i can have 1 last summer of golf.

Update
 

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! :rolleyes: ) 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(?) :Dunno:

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... :Dunno:

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 :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

Hi There!!!!!
 

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 :wink: 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. :hug:

So sorry about your pain
 

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 ;)

Dear Annie
 

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:hug:

Yoga after Spine Fusion for scoliosis
 

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

Keep moving!!!!!
 

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.

Anniemack: I cannot believe how similar our stories are...Please help
 

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.

Alisa,
 

Have you tried Lidoderm patches? They are prescription only and come in a box of 30 patches. Each patch has 700 mg's Lidocaine. The patches are about 6" x 4". They are really quite helpful; especially when the pain gets pretty nasty near and around my lower spine area. (Each patch can be cut into halves or quarters.) The patches need to be 12 hrs. on then off for least 12 hrs. My brother uses the patch for his shoulder pain (he cuts his in half and so do I). He feel they are really helping to make his pain more tolerable.

As Dave mentioned; we are a very caring community. If you get a chance, look around and check out some of our different threads. It is amazing how sometimes there is something that happens to be helpful, and also find at times, we are able to be helpful as well.


Gerry