Scared Newbie

[RoundTheTwist]

Hi,

I have been lurking in the background of this forum for months and just decided to join today, so I am here to say 'Hello'.

I have been reading many of your stories on here and you seem like a nice bunch very brave, and very strong.

I am due a revision surgery in 8 weeks time and am starting to get 'cold feet' because I am getting scared. Some people say revision surgery is nowhere near as serious as the first surgery and is a breeze and others seem to feel that revision surgery is more serious, now I feel confused. I don't WANT the surgery, in the UK things are different, I didn't get to pick my surgeon and although I know he is one of the best in this country and does revision surgery quite regularly, I am now thinking 'Do I really need this surgery, or am I just going along with it?'

Is there anyone here in the UK that has had revision surgery?

I joined a group called Flatback revised which is a great group but I wanted to meet others aswell (Linda Racine - I am known a Kat on there, but there is already a Katblack on this forum and I didn't want to confuse things).

Well I shall sign off for now, there is a little more about me below,

[Be Free]

Dear "Round the Twist"
May I ask why you are currently seeking a revision, what symptoms are you experiencing, what do they think is the cause, and what are they planning to do to "correct it'??? Would like to help you through your struggle with making the best decision for yourself. Also, follow you heart and your intuition....you can always have surgery...but you can't reverse a surgery.... Have you tried any alternative approaches to relieve your "symptoms" you are hoping to resolve with surgery?? FYI I am a therapist who specializes in pain management, and I too have a fusion T4-L4 with a harrington rod...alternative approaches work for me!!

[RoundTheTwist]

Hi Be Free,

Thanks for your reply.
I asked to be referred back to the hospital that did my surgery originally because I had started to experience pain in my right hip and just had this feeling that something wasn't right. My surgeon did some x-rays and we discovered then that my single Harrington rod was broken at T8/T9 level but wasn't causing me any pain. My surgeon also said that the pain in my hip was to do with the scar there where they took bone for bone grafts in 1991 and sent me for an MRI. The MRI says I have a neuroma (benign tumor of the nerves) in the scar on my hip so he sent me to a Pain Clinic within the hospital, where I was treated for 2 years. I had Electronic Pulse injections, Cortisone injections, Lignocaine, and acupuncture none of which gave me much, if any, relief. I also had some physio, but the Pain Specialist sent me back to my surgeon saying there was nothing more he could do for me. My surgeon then reviewed my notes and decided that he would remove the neuoma with surgery and 'while I am there' remove the old broken rod and insert 2 new ones with screws, but that is all I know about my op. I haven't had any other tests, no x-rays for at least 2 years etc etc
At the moment I am on Co-Codamol (paracetamol 500/codeine 30) x6 a day, Celebrex 200mg per day and Gabapentin(Neurotin?) 300mg per day plus 60mg Citalopram(Anti-depressant) a day. These make my pain bearable, but I am scared I am dependant on all these drugs, I ran out of Co-Codamol yesterday, today my pain is pretty bad, but does that warrant an operation?
I have also lost the 2.5 inches I gained in my first surgery, I feel because the rod is broken and I have kind of curved over to the left, my hump seems to be reappeaing and my body shape looks awful from behind.
I would be all for a more natural cure but have to admit I can't see any other route than surgery for myself. The question is do I go on the way I am or put myself through another surgery?

Please help?

[Be Free]

Hi Round the Twist,
It sounds as though you have a few significant findings on your MRI's, however, what I did hear from your letter is that your doctors saw a crack in the rod, but that it wasn't causing your pain, and that the pain in your hip was caused by scar tissue?? So there might be hope with a particular alternative approach....you have a month and a half before surgery, and you are on so many pain meds, it wouldn't hurt to try something in the meantime. I have worked with many patients whose MRI's indicate they should have pain and they don't, and MRI's that show nothing, and they have pain...so I guess what I am saying is that you never know the true correlation...You do need to make your decision on the surgery from your heart and your intuition... I do beleive the alignment changes you are experiencing are possibly due to other alignment aside from your fusion, and could be easily remedied. There is a woman in England that is a practitioner and an instructor for the advanced courses of quantum touch, I will be taking an advanced course with her this weekend...her name is Deborah Gair, you might want to go on to the international website for Quantum touch and read her bio, get her number or e-mail and contact her. She is pretty busy, but she may be able to refer you to a QT practitioner that can help you in England..there are 5 pages of England practitioners...but I would get a referral from her. If QT helps you, it will be well within the time frame before your surgery...it's an amazing energy approach. I use it on my patients and myself regularly to maintain alignment and relieve pain. If you want to know more about my background you can read the letter I wrote under the heading of scoliosis revisions. The surgery is your decision, but i do think QT can help....how far?, only your experiences will tell you..it's worth a try... The website is www.quantumtouch.com I hope this helps...any more questions, feel free to ask....
"Be Free"

[Karen Ocker]

I do beleive the alignment changes you are experiencing are possibly due to other alignment aside from your fusion, and could be easily remedied

FYI I am a therapist who specializes in pain management---(Be Free)

How can you say this? It sounds a little bit like an ad.

Having had revision surgery myself--and wished I did it sooner this is how I read this: If the spine is curving-- and height is lost--it suggests that the fusion has weakened and the spine is re-curving. This happened to me and others. The whole reason for hardware is not decoration but to support the spine while healing and maintain that support permanently. If hardware is loose, broken, or shifted how can it support the fused spine in the way it was intended?

People like me who NEVER had hardware with the original scoliosis operation(1956) had to stay in bed a YEAR-now you get up the next day. I lost most all my correction by the time I was 59 and had my revision 4 years ago at age 60. I am pain free and working. Basically got my life back.

Before the revision I got wonderful help from Pilates under a trained Pilates practitioner. It helped my posture but did NOT stop my spine from collapsing over the period of 4 years I used this disclipline. (I do Pilates still but, modified, taking into account my surgery)

I am a firm believer of alternative treatments/modalities and a positive attitude BUT the treatments have to be effective, not waste my money on false hope--playing on fear-- or someone else's pocketbook

[Be Free]

Karen Ocker,
It's unfortunate that you think this sounds like an ad....I am solely sharing my personal experiences with my 28 year post surgery journey...Every surgeons approach is different..and surgical procedures from the 50's to the 70's and into the 90's etc..are different. All hardware including harrington rods are solely used to support healing structures, and once they are healed, the structure is no longer needed...which is currently about a year for spinal fusions at max... I have through times where my alignment looked horrendous after falls even with the fusion...and I had pain that was so severe I could not move or walk well... The surgeon's responses were unhelpful. And it has been through taking many bodywork, energywork, and movement awareness/re-education courses for my own profession that I was able to start to apply these to my own body...and understand the mechanics of my body, causes of the wear and tear of adjacent unfused structures and realign all of the adjacent structures to my spine to achieve the best balanced state I can and maintain it daily within an active life...No one ever taught us how to move again, how to protect our adjacent structures, or how to relieve our pain as it progressively showed up in our lives...no one ever taught us to understand the new biomechanics within us...I am providing this information because it has worked for me and others....I am passionate about it, and don't believe people have to live in pain...and that surgery is the only answer. I have worked with orthopedic surgeons for years, and I know the frame of reference they come from...it's what they know best. I also believe scoliosis health with and without surgery is greatly benefited from a combination of movement approaches (whether pilates, yoga, feldenkarais, trager, spinal stabilization, etc....) and "bodywork" (of which there are many)....scoliosis is dynamic, and therefore requires both complementary approaches to be effective in optimal wellness. If you do not achieve or maintain an optimal postural alignment with bodywork, than one is asking too much of the muscular system to support such resistance from the skeletal and myofascial "structures". Appropriate bodywork gives one who has had a spinal fusion the experience of a weightless "freer" moving body than you could ever imagine...and anyone who has had a fusion, and does not experience this, is really missing out on a tremendous gift to themselves..something I feel very grateful to have and continue to experience in my life. So, unless you have tried the combination of the both with advanced practitioners in both realms, than you can not judge what I share.... My words come from my heart....not as an advertisement. And by the way, I do pilates, yoga, ballet, and Trager mentastics to complement the bodywork I receive. And prior to experiencing this, I took pictures of my alignment to illustrate why I was feeling the discomfort I was....and as my optimal alignment returned...the symptoms went away...and I would not be surprised, that if I had not reversed this there would be significant degeneration in my joints and a lot of stress to my rod.... The medical profession could not give me answers...so I learned from my experience on my own, and being a therapist myself has been greatly beneficial in furthering my journey for answers...living with increasing pain was not an option I was willing to entertain.

[Be Free]

P.S. there are posted pictures of documented cases where scoliosis curves have been reversed with quantum touch...it is NOT quackery, nor a waste of time!!!!!!!!!!!!

[Karen Ocker]

Be Free

All hardware including harrington rods are solely used to support healing structures, and once they are healed, the structure is no longer needed...which is currently about a year for spinal fusions at max...

(Be Free)

Unfortunately research, my personal experience as well as that of others, does not always bear that out:

Loss of sagittal plane correction after removal of spinal implants.
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

Loss of coronal correction following instrumentation removal in adolescent idiopathic scoliosis Spine. 2006 Jan 1;31(1):67-72.
CONCLUSIONS: Instrumentation removal in AIS is not always a benign process because the long-term follow-up of this cohort of patients shows
a "settling" effect in the coronal plane of the main thoracic and TL/L curves after instrumentation removal. Interestingly, there was no change in the sagittal plane with time. Parents and patients should be counseled for this result when instrumentation removal is contemplated, and limited removal of focally symptomatic implants should be considered.

Implant removal for late-developing infection after instrumented posterior spinal fusion for scoliosis: reinstrumentation reduces loss of correction. A retrospective analysis of 45 cases(1: Eur Spine J. 2004 Nov;13(7):645-51. Epub 2004 Jun 26

Several forum participants have lost correction after their hardware was removed requiring revision with new hardware.

These are the sad facts about scoliosis and surgery but it is the best we have. I personally was glad that I got my life back
.
As I wrote other places I spent a year(age 14), not walking at all --for my original fusion to heal, in a series of 3 casts---told by Dr. K at age 52 my fusion was "solid" (64 deg thoracic)--only to end up with an 80 deg at age 59.

Go figure. No osteoporosis, a hiker and Pilates devotee.

[SandyC]

Karen,
I have to agree with you, "Be Free" does sound like an advertisment. I have been trying to ignore her/him, hoping that "Be Free" would do their ad and then go somewhere else to advertise. I think the larger the NSF Board gets the more likely it is that the Board will be bombarded with ads/junk .

[Be Free]

That is unfortunate, I know. But what I am attempting to communicate is a component that is so traditionally overlooked in non-surgical and post-surgical scoliosis "patients"...because it is not considered a standard component of medical/healthcare. The spine, as is the remainder of the skeletal system is solely supported and aligned by the supportive myofascial structures, this is why when you see a skeleton it needs to be held up by an external device, or it will fall to the ground. These supportive structures are not being considered adjunctively. When you have a spinal curve, and you correct it with a fusion, and you do not address the state of the myofascial structures...the body will continue to fall into the path of ease of the "curve"...all of the strengthening in the world, independently, will not be able to correct this...it will be attempting to resist this, and upon freeing up these structures and rebalancing all that is around the "fused spine"....unnecessary tension is removed from the fused area and the rod. I was not aware for many years how I was continueing to fall into the curve of "my scoliosis" daily....at rest and with function. I could feel all of the compression, tension, and progressive pain and immobility...and see changes in my external alignment...this I truly believe, if not corrected, could have potentially led to some of the current rod and curve reversals I am hearing about. I am speaking of looking outside the box at other options...options that address the source of the problems..that medicine does NOT address, and most "patients" are not aware of.... One needs to consider a fusion is a solid bonding of two structures...so how are they moving???...fusions are standard practice in orthopedics....however, we do know that bones crack and can bend under severe ongoing pressure...they don't unfuse....so....why aren't these stresses being addressed in late post-op care...and why aren't they being addressed in non-surgical patients???...other then, well, we'll surgical revise it when and if it needs to be done. And every addtional segment you fuse in the spine..you alter your mechanics and stress other structures....and the stress factor is still NOT addressed. This is an area I am very passionate about, and am hoping to be able to meet up with a surgeon to actively do research on this....I strongly believe in this, and I have personally experienced drastic changes in my body and mobility as a result...and obviously my current outcomes I am experienceing as compared to what I hear on forums is greatly different...which I am incredibly grateful for.... We need to look at addressing non-surgical and post-surgical scoliosis "patients" with a combined approach of body-work, functional movement awareness and re-education, education of the current biomechanics presently in their body, and balanced and symmetrical conditioning/toning, and daily spinal decompression of cumulative forces....it is a whole system approach and the strength of all of these combined is immeasureable...both in prevention, "maintenance", and correction/reduction in symptoms. I chose recently to post these letters because I feel so personally strong about this...and I have been studying all forms of scoliosis literature ever since college....and I can't say there was anything that I fully "aligned" with...most were just medical research that was very one-system narrow focused. I write because it pains me to hear of so many people on this forum that experience such high level of pain daily, and those that fear this is in their future...From my heart, I want to bring forth more clarity and hope that there are more options and answers out there that are non-surgical, and or can greatly complement a determined future surgical procedure.... I am not here to convince anyone of anything, just to share information... I believe in the body's innate ability to heal itself with an optimal internal/external environment...and I believe the focus of modern medicine continues to be on symptom management...not true wellness and whole body consideration as a means of medical resolution. In modern medicine, we kill healthy cells to "cure" cancer....not integrate whole system approaches to treating the causes and imbalances in the body that disables the patient's body from naturally healing it. In modern medicine we continue to treat idiopathic scoliosis, by "fusing" the "symptom" (the curved "healthy" spine)...but we do not attempt to address/assess the whole body outside of the skeletal system to find some balance or resolution in the "weak link" of "cause"...I respect anatomy, physiology, kinesiology, and medicine...but i also question things that just don't "make sense" from a larger view...whole body...whole approach....not microscopic or limited. Modern medicine's response to hardware that doesn't support....revise it and add more....there is a happy compelemented middle of the road somewhere...and neither side should be fully excluded....

[RoundTheTwist]

I think I'll start a new thread

[Be Free]

....I wish you the best in your future decision...and truly wish you a painfree future.....