Need Chronic Pain Management ADVICE

[Gigi50]

Hello. I am a 50 year old female, with severe rotatory scoliosis (lumbar) 55 degree and 44 degree thoracic. I have been recommended for scoliotic revision therapy, however 2 of the 3 opinions received told me to wait for the surgery as long as possible. Personally, I do NOT want the surgery and want to figure out how to deal with a chronic pain treatment program. What I am struggling with is pain in several joints, because of the scoliosis has affected my right hip and left knee. I have been told this is very common with my type of curve.

To understand my case, I have had back pain for the past 20+ years, intense muscle spasm on left side. I have been treated with cortiscone injections in the L4/L5 of the spinal cord. Most recently, a year ago in 2015 I had 2 herniated discs (L1 & L2), and have not been the same since. Thru PT and injections, my herniated discs are under control. However during the treatment process, my left knee and foot took most of the weight bearing and are wearing out. I am currently participating in the Schroth Method PT program, and have greatly benefited in knowledge of posture and breathing. However, it is not reducing joint pain symptoms.

Moving to My LEFT knee, this past year with a MRI I was diagnosed with arthritis, and have received a cortiscone & gel injection. The doctor doesn't feel like I have much time left on the knee, however I am feeling optimistic the gel injection is working. He said we can continue as long as possible.

In addition to the knee, my RIGHT hip joint has been really bothering me. I have seen the specialist and received a hip joint cortiscone injection. The pain eased for about 2 weeks, and is now back with a lot of pain and irritation. I am really frustrated, the hip doctor said if the injection doesn't work we might have to look at a hip replacement. How the heck this happened, I have no idea! While my back is always in some kind of pain, the hip joint is driving me crazy. It really limits my activity and ability to do things, and is bothering me when I am sleeping. Need to confirm if this is a labrum tear, because most of the pain I am feeling is in the groin area. The Scoliosis Doctor is not even sure if I do the revision surgery, I might have some further problems with the hip joint.

I have asked multiple doctors what kind of pain meds can I take for Arthritis. Currently being subscribed Celebrex, however it doesn't do really much. I have also changed around my vitamin regimen and am working with a natural herbalist to improve joint movement. After a month regimen I am not making any progress.

My question is to any with similar pain areas
1. Are there any medications out there which can improve Joint Arthritis? I do not want a opioid medication, have tried and know they do not work.
2. Should I wait to get the spinal revision surgery, even if I am seeing deterioration of other joints due to the imbalance of spinal column?
3. I am in process of addressing chronic pain in the back, probably will go joint facet block injections. Has anyone used this kind of treatment for Chronic Back pain?
4. Is there any type of doctor who will help me understand how my back impacts other joints? So far, I have to see multiple doctors and this drives me crazy! I want a doctor how can help me create a gameplan while understanding my back problem.
4. Need to figure out some pain management for the hip, any suggestions? I am hoping this is a labrum tear, as I feel a tremendous amount of pain in the groin area.
5. Any Sleeping suggestions for my areas of chronic pain?
6. Not one of my specialists have confirmed my knee or hip problems are related to the scoliosis. Does anyone believe scoliosis causes back pain & increase your chances for spinal herniations? Also, do you believe scoliosis affect other joint areas?
7. Did anyone benefit from changing around Nutritional program, and weight loss?

Lastly, to say I am frustrated is an understatement. I want to get back to normal routines without having nagging pain affecting me. While I am not totally helpless, I can't help but wonder where this path is taking me. I would like a game-plan, am willing to work for it. Would really appreciate insights from others who might be feeling the same way I do, and have found success working around scoliosis.

Many thanks!

[titaniumed]

Gigi, your hanging in there.....maintaining scoliosis isn’t an easy thing, that’s for sure. I hung in there for 34 years and made my decision when all my efforts failed at age 49.

I didn’t do shots since I had 4 lumbar herniation’s in a 70 degree curve....thinking about that now, maybe an oral steroid would have helped. ??? I will never know.

I took Celebrex, Bextra, Naproxen, and Diclofenac over the years.....they are a huge help, and I eventually quit them as they are hard on the stomach, and I put on a lot of weight because of them.

I have always liked a hot soak for pain. Before and after surgery. Massage immediately after a hot water soak is very helpful....

I was on a gall bladder diet when I was having gall attacks.....not for scoliosis pain. I lost 18# in 2 months, and I wasn’t trying to lose weight.

Revision surgery is not an initial surgery. Revision surgery is used to correct or revise an initial surgery.

When degeneration sets in, it can be a downhill battle. There is nothing we can do to reverse the ageing process other than accept it mentally and roll with it with a good attitude.

If you have scoliosis, you should see a scoliosis surgeon. This doesn’t mean you have to commit to surgery, but an evaluation is necessary. They also will rule out things that all the other’s will miss. I would not let a “regular” orthopedic operate. Scoliosis surgeons are the only ones trained to “balance” the spine, it’s a complete complex package.

Many of us here are older scolis that have done alternatives over the years maintaining just like you....

Welcome to the forum

Ed

[Brownapple2016]

Hello. I am a 50 year old female, with severe rotatory scoliosis (lumbar) 55 degree and 44 degree thoracic. I have been recommended for scoliotic revision therapy, however 2 of the 3 opinions received told me to wait for the surgery as long as possible. Personally, I do NOT want the surgery and want to figure out how to deal with a chronic pain treatment program. What I am struggling with is pain in several joints, because of the scoliosis has affected my right hip and left knee. I have been told this is very common with my type of curve.

Hello Gigi,
First of all: As I am a non-native writer, hope there won’t be any misunderstandings:
I am also new here in this forum and want to share my experiences with you about my conservative way treating scoliosis and dealing/ living with chronic pain. My aim is to avoid a spine surgery. As you can read in my signature I have also problems with my hips beside scoliosis. Yes scoliosis can affect e.g. the hip, as I suffer from a hip torsion caused by the scoliosis.

To understand my case, I have had back pain for the past 20+ years, intense muscle spasm on left side. I have been treated with cortiscone injections in the L4/L5 of the spinal cord. Most recently, a year ago in 2015 I had 2 herniated discs (L1 & L2), and have not been the same since. Thru PT and injections, my herniated discs are under control. However during the treatment process, my left knee and foot took most of the weight bearing and are wearing out. I am currently participating in the Schroth Method PT program, and have greatly benefited in knowledge of posture and breathing. However, it is not reducing joint pain symptoms.

My scoliosis was diagnosed in 1998 during a hip control appointment. I can’t remember when my pain career started…according to medical reports I mentioned neck pain as well as lumbar and hip pain on the right side around 2000 the first time.
In 2003 I have been to the Katharina Schroth Hospital the first time for 3 weeks and also benefited a lot from that therapy, just like you. Two further stays followed in 2004 and 2006 to stabilize the corrections made during the special exercises.

In addition to the knee, my RIGHT hip joint has been really bothering me. I have seen the specialist and received a hip joint cortiscone injection. The pain eased for about 2 weeks, and is now back with a lot of pain and irritation. I am really frustrated, the hip doctor said if the injection doesn't work we might have to look at a hip replacement. How the heck this happened, I have no idea! While my back is always in some kind of pain, the hip joint is driving me crazy. It really limits my activity and ability to do things, and is bothering me when I am sleeping. Need to confirm if this is a labrum tear, because most of the pain I am feeling is in the groin area. The Scoliosis Doctor is not even sure if I do the revision surgery, I might have some further problems with the hip joint.

When you have pain in the groin area and a cortisone injection could ease it, the pain can also come from your hip joint. I also had pain in the groin area due to my hip dysplasia before the hip (preservation) surgery. Did the hip specialist take an x-ray of the pelvic area?
Did you confirm if it is a labrum tear? As I have read in a hip forum; a Labrum tear is the first sign of arthrosis. 4 stages of arthrosis are defined…the more worse an arthrosis is, the more painful it becomes…and as other hip patients with severe articular cartilage damage described they could not sleep or participate in daily life without opiates. As your life quality is already reduced, I would find out what causes the hip pain and if MR-Arthrography or even a x-ray imaging show severe deterioration of the hip joint I would consider the hip replacement…

I have asked multiple doctors what kind of pain meds can I take for Arthritis. Currently being subscribed Celebrex, however it doesn't do really much. I have also changed around my vitamin regimen and am working with a natural herbalist to improve joint movement. After a month regimen I am not making any progress.

My question is to any with similar pain areas

2. Should I wait to get the spinal revision surgery, even if I am seeing deterioration of other joints due to the imbalance of spinal column?

As I have written above, I would avoid a spine surgery and proceed with the Schroth Method PT adapting the exercises to your special situation. I do not know whether you have learnt the “muscle cylinder”: I learnt this while standing. Due to my unhealed left pubic bone I do the exercise while lying on my weak side.

3. I am in process of addressing chronic pain in the back, probably will go joint facet block injections. Has anyone used this kind of treatment for Chronic Back pain?

I have heard about it during my stay in the pain section of a hospital. The other patients told that pain is lower after facet block injections. I refused it because it is done under CT control and 2015 I had several x-rays and 2 CTs within a few months and I was scared about the radiation…

4. Is there any type of doctor who will help me understand how my back impacts other joints? So far, I have to see multiple doctors and this drives me crazy! I want a doctor how can help me create a gameplan while understanding my back problem.

I am not a doctor but I can describe you my thoughts and experiences about the impacts: you have written that your left knee and foot take the most weight. Depending on which side your curves are, you are stretching or increasing your lumbar curve, standing or sitting imbalanced and the thoracic curve behaves inverse to the lumbar curve. I have been also putting more weight on my right hip since my pubic bone didn’t heal after the left hip surgery. My whole spine started tilting to the right and created a new curve in the upper thoracic area…

4. Need to figure out some pain management for the hip, any suggestions? I am hoping this is a labrum tear, as I feel a tremendous amount of pain in the groin area.

Before the first hip surgery I had PT for the hip. When my back, neck or/and head started to hurt daily I tried acupuncture and it helped a bit. Another try could be osteopathy; a lot of patients wrote that it reduces pain after a few sessions.
As Ed already mentioned above a hot soak or any other type of heat on the painful region help me reducing the pain. In the summer I like to have short sun showers on a beach or just in the garden and for the winter I bought a Quartz Heater which stands behind me when I am standing! in front of my (computer) desk. When I need to sit longer I use a wedge cushion.

5. Any Sleeping suggestions for my areas of chronic pain?

I change my positions of sleeping automatic when it gets uncomfortable. Can you fall asleep on your stomach? Perhaps you can use pillows under and between your knees to sleep on the side?!

6. Not one of my specialists have confirmed my knee or hip problems are related to the scoliosis. Does anyone believe scoliosis causes back pain & increase your chances for spinal herniations? Also, do you believe scoliosis affect other joint areas?

See above.

7. Did anyone benefit from changing around Nutritional program, and weight loss?

I have read that basic food could have positive influence on the joints, but the scientific results are contradictory. I swear on a mixture of magnesia, Vitamin D and B-Vitamin pills from the drugstore, because I have learnt for my Food chemistry exam that a magnesia and vitamin D deficiency can cause muscle pain. Especially magnesia deficiency is related to spasms and muscles twitching…the B-Vitamins are necessary for a good nerve function. This helps me to reduce my pain. If you don’t want to take pills you can also try food that is rich in magnesia, Vitamin D and B-Vitamins…

Lastly, to say I am frustrated is an understatement. I want to get back to normal routines without having nagging pain affecting me. While I am not totally helpless, I can't help but wonder where this path is taking me. I would like a game-plan, am willing to work for it. Would really appreciate insights from others who might be feeling the same way I do, and have found success working around scoliosis.
Many thanks!

Hope I could help you a bit and did not confuse you too much.

[Gigi50]

First many thanks for the feedback. Here is some information I can provide to give further insights to my case.

1. I have seen 3 scoliosis specialists; Dr. Vaccaro (Rothman Inst.), Dr. Han (HSS in NYC) and Dr. Arlet (University of Penn). All have agreed I should get scoliosis correction surgery, but the timing of surgery is up to me. The HSS doctor has said to wait as long as possible, considering my Thoracic (45 degrees) is now showing significant signs of curve (none of which I had in the past), he thought completing the lower spine surgery would expedite the upper spine deterioration. I absolutely want to hold off as LONG as possible, for some reason getting a rod in my spine has got me totally spooked! I know it's not the worst of case scenario's, but I am concerned about the complications and long term side effects of this surgery. I would like to hear when people finally made the decision to get the surgery? I can tolerate pain, but don't want to miss out on the quality of life. I have seen my 2 major joints deteriorate from this unbalanced back of mine, and I know I am not alone. What I find frustrating is even the Scoliosis Doctors will not work on my entire body issue, as they are only focusing on my back issue. I have seen a Physiatrist thinking they would help me navigate the entire body issue plan, I am beginning to think this doesn't exist. Not sure why we don't have this kind of specialist, who will help me map out a plan and work on strategies which will make me happy & healthy.

2. Spoke to my local Back Orthopedic Specialist. I had a successful outcome during the trial session of nerve block on L1, L2, L3 facet joints. What I noticed is how much I am overshadowing the right side back pain. Not sure if this is from the hip pain or back. If after the treatment, and I find the lower back joints are firing up she said we can continue down the spine. While I know nerve blocks are a temporary fix, I am trying to find out if anyone has used this kind of treatment and has found success? My definition of success would be to push off surgery as long as possible, and function in an active lifestyle with "minimum" pain.

3. Right side HIP treatment update - I have now completed 3 specialist visits, and all have agreed I need a total hip replacement. At age 50, they do believe this is young age but not totally unusual. The doctor I am going to use has suggested using Zimmer Orthopedics, ML Taper Stem, Continuum Cup. He said these hips have been on the market for 10 years, all indications this type of replacement has a very long life expectancy (50+ years). Certainly easing my fears of getting a 2nd hip replacement. I asked about how he would approach my hip and if there would be any complications because of my scoliosis. I know my hip has been continually pushed out on right side because of the curve. He said, I shouldn't have any problem. However, he thought my recovery might be more painful because of my scoliosis. Has anyone had a HIP replacement with having severe scoliosis that can tell me their recovery and success story? I really need to get the Hip replaced, and can not continue to function on daily basis with the acute pain.

4. As far as my treatment plans to address chronic pain, I have had years of massage therapy, PT therapy, I have every kind of of wrap, back racks, stem therapy machine, ultrasound therapy machine, topical creams. You name it, I think i might have bought it and have in the my basket of tools to help with pain recovery. I am still open to finding out who or what products are out there for treatment success, open mind and suggestions welcomed!!

5. I am open to traveling to find a specialist or program to help me gain strength. I am temporarily stopping the Schroth Method PT program, can't do most of the work required because the hip is not cooperating. Wonder if I should plan on a visit to the Katharina Schroth Hospital? Staying in Germany for 3 to 4 weeks as a lot of appeal, I absolutely love Germany! Have no idea the cost, but honestly I don't think we have anything like this Hospital in the states. Does anyone know any different?

For anyone listening, I am hoping the more I share the more I learn! I am coming to the conclusion, I am truly hoping someone can change my mind, These doctors don't have a good sense of how Adult ONSET Scoliosis Impacts other areas of the body. Not sure why there isn't a scoliosis doctor who can recommend a game plan for my issues, and help me navigate the game plan. Help is very much appreciated!!

[TerrySpear]

Hi Gigi,

I just discovered the non-surgical part of the forum. Since I had surgery in the way distant past and was contemplating revision surgery, I posted a thread on "Pain Management and Cannabis" in the Adult Patients/Surgical revision section of the forum recently. I agree with Melanie's observations that because of the asymmetrical forces scoliosis places on your joints, scoliosis can negatively impact hips and knees [and probably other joints]. In the last year, I decided against revision surgery because I figured that at this point, I had too much to lose and not enough to gain. If I had revision surgery, it would like entail a fusion from T-3 to the pelvis. Given what I could figure out from this Forum and other sources of information, I think that a fusion to my pelvis would restrict me from doing too many activities that are critical for me to live a full life. Although I am now fused from T-3 to L-3, I don't think that this has really restricted what I can do in my life. The problem, however, is that a fusion of this length puts more stress on the vertebra above and below the fusion and after 40+ years the stress has likely caused premature deterioration of my spine. I currently have pain in the unfused areas of my spine [primarily lower back] and down my right leg. The other concern that I had was that a fusion to be pelvis is that it would cause MORE stress on my other joints. I already have problems with my knees [arthritis] and I did not want to compromise my knees any further. As Ed has demonstrated with his generous information, a fusion to the pelvis doesn’t have to be a sentence to inactivity but I think it takes a special person to keep as active as Ed has managed to be.

I have talked with some very informed medical specialists and I am pretty convinced that a fusion to my pelvis would alleviate a lot of my pain. So the question that I was left was this: Can I manage my pain so that I can still live my life the way I want to live it? For a variety of reasons, chronic pain is very difficult to treat well. And the problem with CHRONIC pain is that it typically doesn’t go away. I have often thought that if I was being told I would have to live with significant, chronic pain the rest of my life, I would just as soon also want a terminal diagnosis. At least then you have an end point. [Of course, I real life I might have felt very differently if I also got a terminal diagnosis.]

I have managed to get to a place where pain does not dominate my life. Yes, I feel “significant” pain. Yes, I have to work to stay on top of it. Yes, I regularly exercise [and not the exercise I like to do] and go to my personal trainer. For pain relief, I am currently on: Gabapentin [lots], NSAIDs, cannabis based medications, and a few other meds [that I use very infrequently]. I have tried 2 epidural steroid injections [ESI] and I won’t use them again. First, except for the very short term pain relief [on the order of a couple of hours] of the local injections used to administer ESI, I did not get any other pain relief. I also had the extremely painful experience of having one of the ESI placed into a nerve root. Here, I was probably just unlucky. The thing, however, that I didn’t like about ESI is that these injections can weaken bone over time. I don’t need anything that might compromise the structural integrity of my vertebrae.

The 2 things that concern me about my decision to put off [maybe permanently] surgery is this: (1) you need reasonable bone density to heal from surgery [and this is a factor that gets worse the older you get] and (2) the prospect of recovering from a fusion surgery to your pelvis in your 60s or 70s is [to say the least] daunting. I can’t say that my decision not to have surgery [now] is without risk but it is the risk I am currently willing to take. Thanks for posting. Terry