Scoliosis w/ Harrington Rod (Page 1)

Have you seen a sports medicine orthopedic surgeon that specializes in spines?

That would be my first suggestion to get another opinion with.

Have you had a recent CT scan to see if there is anything going on with you spine that might indicate that something more is there than just week muscles?

Another thought, if the CT scan shows nothing more than weak muscles would be a round of physical therapy with a physical therapist that is trained in rehab for fusions.

There are ways to strengthen your core muscles even with a fusion and rods. You just need to learn them and to do them properly. A well trained physical therapist can help you to learn to do those and be sure you are doing them correctly.

Then those exercises will become a part of your daily life for the rest of your life.

Get an opinion with a sports medicine ortho that specializes in spines first, the a CT scan and go from there.

Good luck

Fran

Thank you for your response. I have seen an ortho specialist where only x-rays were done. Also I have had physical therapy and I do continue with the stretching exercises and walking. I will check into the CT scan to see if anything else shows up.

Thanks again,
Fran (Butterfly1964)

Hello,
I've gone thru the same thing at first doctors said "weak muscles" but when you workout on a regular basis its hard to by. So it turns out I have spondythesis, a couple of bulging disc, sciatica, and that is on top of the scoliosis. My opinion: when you have a twisting of the spine your pain could be more that just "weak muscles". I have learned that you have to insist and always get a second, third opionion. Good Luck

Rebecca

Did you get your answers from ortho doctors? Were they able to do anything for you? Thank you and I hope you are doing better. Good luck to you too.
Fran

second, third, fourth and even more opinions are perfect to get.

Weak muscles can only be an answer for so long. When the treatment for weak muscles doesn't solve the problem, then it is necessary to look further for an answer.

If you already have a problem with your spine, then there is always an increased risk that there could be more going on than just weak muscles.

If you are not satisfied with the answers from the present spine doctor, then find another one and keep going if you have to, to get the answers that you need.

You also have to have complete faith in your spine surgeon as well.

Sometimes it can take time and many, many visits to find the spine surgeon that you are comfortable with and trust.

I know, I've been there and it turned out that my original spine surgeon was the one to use. that is after seeing 6 others for opinions.

Fran

Hello,
I have seen just about every specialist but it was a neurosurgeon that did the Myelogram, because of the type of harrington rods I have an MRI is not possible. The only thing that would help me is surgery and that is not recommended because I would lose all mobility in my back. My scoliosis was severe, I would have lost a lung and a kidney if I had not had the rod placement, I was a complete S, just backwards.

I was fine until my second pregnancy, certain activities became difficult and within a few months of my sons birth (he is almost eight) I became completely disabled.

When this all happen I was working out at least three times a week, I had always been active and loved the gym. Was in pretty good shape before my preg. and was trying to get back there. So when the doctors said weak muscle and physical therapy, I didn't by it but I did go and all they could do was apply moist heat which did feel nice but didn't help with my pain.

I am currently on the Fentanyl patch which helps alot but it is a narcotic. I personally don't have a problem with taking pain meds, I was on morphine and actiq for a couple of years.

My husband is in the military so moving around makes it really hard because with every move comes a new doctor and every doctor thinks they know best... so we start all over...

Sorry I rambled on and on... it is just nice to talk to someone who actually understands. So Thank you

Rebecca

No, thank you Rebecca. It is nice to talk with someone who understands. I was a military brat so I understand the moving. Thank you for all the info. I have been so discouraged with all the same answers I'd just about given up on going to anymore doctors. I think I will try again and just be a little more persistant. I hope you are doing better now. If you're like me you have good and bad days. I'll keep you posted.

Fran

Hi,

I'm 38 and had 2 Harringon Rods placed when I was 12. I've had pain since my early 20's and have found chiropractic adjustments and deep tissue massage to be the best. I also watch my sugar intake (sugar is an inflammatory), drink lots of water (otherwise my muscles get tight and knotted in my back), I ride a stationary bike in 20-30 minute sessions 3-4 times a week (the endorphines are natural painkillers), and I do exercises on a Theraball recommended by a chiropractor. For a while I also had a European slat bed, which was recommended by a chiropractor who had Harrington Rods. If I do all the right diet, exercise and have a comfortable bed (also don't sit too much), I feel almost pain free. When I slack in any of these areas, I have a lot of pain. Not debilitating pain...but mood-changing pain. Recently, I thought I'd also trying acupuncture (been avoiding it for years...too chicken). Hope this helps!!! Oh yeah - I had a normal pregnancy 10 years ago due to Feldenkrais exercise therapy - saw a guy weekly and did exercises several times a week. It helped give me a normal experience of preganancy.

This was super helpful. I would love to learn more about the exercises you do on the theraball! Do you have any suggestions? Your story is very similar to mine.

This was super helpful. I would love to learn more about the exercises you do on the theraball! Do you have any suggestions? Your story is very similar to mine.

I too have a Harrington Rod. I am 42 and have 2 children. I have been active all of my life. Since the birth of my son almost 8 years ago my back has gotten worse. Just a move the wrong way sends me into massive pain. About 6 months ago the back pain became chronic. I have been going to the doctor and looking for some way to get the pain to stop. But just about any prolonged activity can set it off.

I am continuing to look for answers and will update you with my progress if I get any!

Glennda

Hi,

I'm 38 and had 2 Harringon Rods placed when I was 12. I've had pain since my early 20's and have found chiropractic adjustments and deep tissue massage to be the best. I also watch my sugar intake (sugar is an inflammatory), drink lots of water (otherwise my muscles get tight and knotted in my back), I ride a stationary bike in 20-30 minute sessions 3-4 times a week (the endorphines are natural painkillers), and I do exercises on a Theraball recommended by a chiropractor. For a while I also had a European slat bed, which was recommended by a chiropractor who had Harrington Rods. If I do all the right diet, exercise and have a comfortable bed (also don't sit too much), I feel almost pain free. When I slack in any of these areas, I have a lot of pain. Not debilitating pain...but mood-changing pain. Recently, I thought I'd also trying acupuncture (been avoiding it for years...too chicken). Hope this helps!!! Oh yeah - I had a normal pregnancy 10 years ago due to Feldenkrais exercise therapy - saw a guy weekly and did exercises several times a week. It helped give me a normal experience of preganancy.

Hi, I too suffer severe back pain, left leg/foot pain. I had harrington Rod put in about 35 years ago at Royal North Shore Hospital Sydney by Prof Taylor. I have been fine up till about 13 years ago when I started to get back pain. I had two children now aged 25 and 22 naturally and with no problems. I have been to doctors and a neurosurgeon to try and find out why am I suffering so much chronic pain....no one can tell me why and no doctor has been able to give me adequate pain meds. I stuggle on each day. I have noticed when there are low pressure systems to do with the weather, my pain is so much worse to the point where I just have to rest. The top of my neck feels like a mess and I have chronic neck pain as well. People just dont understand. Even my husband has difficulty with understanding what I am going through. It is such a relief to read other peoples comments who are in a similar situation as me. I was truly starting to think it was all in my head! If anyone has any info that may help me I am pleased to hear! I understand that "in its day" the Harrington Rod was the way to go. I was told that my heart and lungs were being pushed forward and if I didnt have the surgery, I would be dead when I was 21....... I dont have a gripe with having the surgery, its just now 35 years later that I am really suffering. God bless you all x

Your post sounds like you were writing for me! I had my harrington fusion in 1978. I have 3 children, aged 25 and twins aged 23 also born naturally and with no problems. I did however start to suffer lower back pain after the twins were born, but being very good weights my doctor just said it was weak muscles due to the birth and then lifting two babies about. But the pain continued and has gotten worse over the years. In the last 5 years the progressions of my pain has become frightening. Like you my neck is a nightmare of chronic pain, so are my shoulder blades, all across my lower back, especially centered on the point of my lower fusion, my hips kill me, my knees and ankles also suffer. I was seen by a consultant orthopaedic spinal surgeon last in 1998 and he was supprised I was complaining, after all my surgery had been over 20 years ago at that time and his words were "what else lasts more than 20 years"!! Can you belive he even compared me to a washing machine!! That would not last you 20 years he said!! Like you I thought having the surgery was going to give me a life, I feel I have only had half a life, the bit when you have children and raise them, what about the other half?? I am really frightened what the future holds for me. I am not sure I will be able to cope with anymore pain than I have already, and my body as a whole now feels like it is twisting and bending out of shape, fighting against the rod. I agree that the weather can make me feel worse, that might be in my head, but hearing you say the same, helps me to feel that there might be a connection. I have recently started doing aqua aerobics, and have found this is a great pain reducer, only while I am in the water though, but at least it is an excercise I can do! I battle with my weight, due partly to my meds I belive, they slow my head down, so surly they must be doing the same to my metabolism? Ok I have sat for too long now and my neck is killing me! God bless you too! x

Hi, We all sound so similar. I'm 49, had the surgery in 1978, with a harrington rod going from my upper spine to my third lowest disc. Have always had back pain but just endured it. In the last year it has got much worse and i have had physiotherapy and osteopathy (which was just agony). My GP referred me to a neurosurgeon and i had various tests, xrays done etc. I saw him on friday and he basically said that my lower two disc are severely damaged due to overuse( 30yrs of doing the work of the rest of my back). He immediately had me fitted for a back brace (similar to what i wore after I had the rod put in). He has also recommended weight loss, gentle exercise and laying flat on my back in bed with a flat pillow and with my knees slightly raised with a pillow underneath. Also gentle walking only 15min twice a day to begin with. NO osteo, physio, gym or yoga. And, the hardest thing of all, no bending from the waist. This means, no getting the milk from the fridge door, no bending for pots, pans, shoes, etc etc.
He said if I continue this regime in a few months time he expects me to notice a difference. If none of this worked then he suggested spinal fusion - as a last resort (hideous).
I'm not sure how long I'm meant to be wearing the brace and at the moment i'm freaking out a bit as this is a big change in my life. But then again i've had 30 good years with a relatively straight back and if i can make changes to alleviate the pain then i will give it a try. I'm not sure what the long term prognosis is though.

I wish you the very best and I hope you find the answers you are looking for.

I do appreciate the info, Glennda and I will keep you informed with any new info I get.

Fran

Boy, this is where all my kindred spirit live! I'm 41, with 2 kids. I'm 25+ years from surgery (1986, harrington rods to LD). I was fine and athletic for 24 years, and then last year developed chronic pain in my right leg, hip and back. I keep being told "tight muscles". I've been in physical therapy for months, had trigger point therapy and injections, myofascial release, lots of stretching. I never get any real relief. It just drags on. I went to 3 spine doctors who told me my back looks fine. So what's the solution? I can't live on pain medication. It makes me non-functional. Keep posting, people. Maybe one of us will hit pay dirt with some answers for the rest of us. It is hard to find practitioners who understand post-surgery issues.

i would think that you should workout but not to much.. workout little by little and then work your way up... it will strengthen your muscels.. walking and stretching should be your therapy for now.... at least thats what my brothers doctor sed when he got surgery..

oh&& i have a question i was told a longggg time ago likemaybe 3 or 4 years ago i had scoliosis and it wasnt a bad case so they sed its fine... but my back gives me pains.. do u think i might need the surgery? and is it successful?

oh&& i have a question i was told a longggg time ago likemaybe 3 or 4 years ago i had scoliosis and it wasnt a bad case so they sed its fine... but my back gives me pains.. do u think i might need the surgery? and is it successful?

I really can't say regarding surgery. Back in 1978 the degree of curviture I had was bad, but I have spoken to people whose curviture was much worse than mine. So I would just consult with your doctors. Sorry I can't be more help.

I am 46 yr old female. I had scolosis surgery in 1978 when 15 years olds and also had a harrington rod fused to my spine. I had a 76 degree curve. I also had two fairly good pregancies 12 and 14 years ago and like you the last 10 years I feel progessively worse. My bar is almost my entire spine stopping right between my shoulders. I am in constant pain with a few good days a month. Luckily, I have a great outlook.

unfortuantely, i've learned to find a decent quality of life with medications that I am dependent on but it helps me live my life. There are times I hate that I must take medications but it is what it is. I hear the same thing as you do excerise but you are right these areas have no mobility.

I have had epidurals over the years and other procedures and all tend to be short term relief if any.

I have lately been experiencing some breathing issues and a pain in my sternum but stretching makes it worse.

I relate very much to your pain but I find a regulated amount of medicine has helped immensely. I only take as prescribed and don't run out in a month. I seem to have a found a plan of action that gives me some relief. Also I was a NYC commuter for 29 years and I recently stopped working in the city and all the travel that was taking a toll on my body has decreased.

Hope you find some relief.

Donna

Hi all
I too am a 45 yr old female with 2 children 10 and 7.and harrington rod between shoulder blades and lower back spinal fusion. I also have been finding in the last 5 years that i am almost constantly in back pain. I also found my back would go into spasm without notice and spend 7 days in agony while it recovered.
About 7 months ago i went to an osteopath out of desperation having tried exercise, medication, rest, doctors, yoga and various other things.
I have found the osteo to be the best thing ever. She has given me much more awareness of how my body and muscles are affected by the scoliosis and treats my body to relieve these symptoms. whilst there is no cure it certainly helps to know i can get a high level of relief from this treatment.
To the person with breathing and sternum pain, i too have that. my osteo treats it. In my case its and inflamation of the ligaments in my rib cage caused by the reduced mobility of my ribs due to , you guessed it, the rods.
It seems to me that at this age things start to cause us pain...maybe this is due to our ageing bodies...but it was great to read all your stories now i realise i am not the only one. Thanks

Hi everyone! I am so sorry to hear all of your problems with pain. I had Surgery 3 years ago and have rods connecting 9 vertebre. At first I felt like I was a miracle. I went back to work in 6 weeks and had some pain but nothing compared to before surgery. Then someone leaned on my back while I was at work. My back popped in 3 places. The pain is so bad now, I have constant spasms in my back and after very simple tasks like brushing my teeth, the pain goes right to my sternum. This pain is so bad, i cannot function. My dr's claim there is no connection but hey I know my body. I am somewhat relieved to hear others having those same problems but it also saddens me terribly. If your sternum pain is anything like mine, it is the worst and I am so sorry. The muscle spasms I have are right at the top of my rods and that is straight back from my sternum pain. Any solutions anyone has for this pain would be greatly appreciated. People often ask if I regret having the surgery and I have mixed feeling there. I couldnt stand for more than 2 hours prior to surgery. I had 2 great years after surgery. Now I have no value to my life at all. I hurt 24/7. One thing I can say for sure, I dont want to live to be very old cuz I cant endure this pain that long.

Hi, I too had Harrington rods and fusion done back in 9968. I'm now 57 and have been in great pain for the last 20 years. I too suffer pain inbetween the shoulders every time I use my hands to long. I suffer from siatic pain all down my hip, knee, ankle and down to my big toe. I have to be so carefully how long I sit down and how long I stand up in one position. Even though I complain I often wonder if I didn't have the operation where I'd be now . In a wheel chair cause I was badly curved back then. Is there any one out there who had Harrington rods back in 68 at st Vincent's hospital and still ok?

hi,

i'm a 46 year old female who had her surgery in 1980. my rods run the entire length of my back, except for the bottom two discs. over the course of the past 30 years and through some really bad back pain and episodes, i've learned that i have osteoarthritis of the spine, degenerative disc disease, sciatic pain and one of the rods is broken. i have two children, 10 and 4, and my pregnancies were fairly uneventful regarding my back.

but in the past few years, my neck has become a very bad issue. i've been through physical therapy, chiropractic care, live on ibuprofen and have become an avid yoga practitioner. yoga has helped more than i can describe. i recommend it to anyone, but especially those with back problems. i've been practicing about 10 years, but it's only in the past 2 or 3 years that i can truly feel deep within me the movements that can help with the pain.

in the past year or so though, i've started to have more tingling, numbness, coordination problems, dizzy spells etc. two weeks ago i felt a band around the top of my back/chest that was so tight and scary, i thought i was having a heart attack. 3 episodes within 90 minutes all lasting about 15 minutes. breathing was compromised during these episodes. the ER workup determined eveything was fine with my heart, blood pressure, etc. and now i'm being evaluated for other things. my sister is a physician and she is worried i might have cervical myelopathy. i'm worried i have multiple sclerosis. we'll see. i just want to know if things will get worse, or if i'll live like this forever.

thanks for letting me vent.

maria

Hi I too had surgery in 1980, I live in Australia and after reading all of your response I have all the same problems, my doctors give me grief because I carry around weight, but they don't understand that to exercise you need to be lighter so that they is not much pain but to be lighter you need to be able to exercise. Sometimes I just wish doctors would have something else to say, I too live on pain medication and if I run of my naproxen I find that my pain becomes worse and have learnt to try and keep plenty of meds on hand. I haven't had any kids because I was told I would have to have a Caesarean because my pelvis is out of alignment and it would be difficult to have natural childbirth. My spinal curve was 45 degrees and I had never heard of scoliosis before I saw my doctor.

I recently had an steroid injection in my left nerve because of the pain I kept feeling, it was supposed to be good for twelve months but sometimes it feels like it hasn't worked, I have developed ankylosing spondylitis, sciatica problems, breathing problems because my sternum is slightly to the left, hip problems, knee problems and I could go on and on. So I understand where everyone is coming from sometimes I give up on doctors and only go when things get really bad what I sometimes find that helps me is to lay down and try to take slow deep meaningful breaths concentrating on the area of pain which focuses the brain on helping to heal the pain itself, sometimes it works and sometimes it doesn't just like everything else I have attempted over the past 29 years. Good luck everyone Kathy

Hi,
I'm a 32 year old woman and had CD harrington rods inserted in 1993 when i was 16. It was done at Prince of Wales hospital by Dr John Stephens. I had a backwards S curve that was over 50 degrees.
I am overweight which doesn't really help matters but everytime i get really active and try to lose weight i end up in so much pain and unable to continue all the gym work. And other medical issues make it hard to lose weight without having to work my butt off in the gym.I'm trying to stick to walking at the moment and have just started aqua aerobics hoping that will help. what type of exercise does anyone else find good and also what they find aggravates?
I have 3 children and since the last one 2 and a half years ago i have been suffering from alot of pain. In particular my shoulders and neck and my hips. I have also had some weird problem with my left rib that has been there since my last pregnancy which can be extremely painful.
Since my shoulders and neck are so bad i suffer from really bad headaches and migraines nearly every day. I can't live without painkillers and anti-inflammetry's and are trying some new anti-inflammetry's at the moment. I find dolased will give me a little relief just to take the edge off but neurofen and the likes don't really help, any good suggestions for pain relief?
Some day's my back and neck hurt so bad i can barely lift my arms.
I have just been back to see a orphopaedic surgeon as i havn't see one since i was 19. He could only go off old x-rays/bone scans and new ones as he didn't do my surgery. He said the scoliosis has gotten worse above and below the rods and all they could do is extend them but that would give me less mobiliy again, which i don't think will really help matters and i'm not so sure is the answer. Has anyone had extended surgery?
I'm so glad i found this site i could only find american ones before it would be great to talk to some other people in australia who has been through the same thing

Hi,

I've had scoliosis surgery with a S-60 degree curve when I was 14. I am now 50 & have a hard time living with the pain since it's somewhat flatback & a small butt. Hard to sit on it sometimes. Emotionally, I don't like my appearance from the back, but the pain is horrible. I'm on the Fentanyl patch. 25 mcg & it does work somewhat. It makes me tired. Tried to get off of it with horrible withdrawals to excercise more. My doctor said to just go through the withdrawals & I can't. Also, saw a physical therapist, land excercises & the pool. (pool makes me really tired.) I wish I knew the answer, sometimes I don't know how long I can go on. anyone with an idea? different meds or excercise? is yoga really helpful?

Kathy