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Spinal fusion, Herrington Rods,Severe Osteoporosis
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An_247645 posted:
I have a T score of -7.7 on my recent Dexa Scan. My Dr. went to the Radiology dept to study the films..it is a correct score. My surgery was 38 yrs ago, 2 Herrington Rods, and complete spine fusion (except 3 cervical and 3 tailbone). Treatment to start is with FORTEO. I still work
full time as a Flight Attendant - 20 years.

Question: The rods losing their connection to the vertebrae before the treatment starts working? What shall I expect, is there any previous studies done on this specific issue? I have lived basically pain free since the surgery, I have lost 2 in in height in 2 years and am beginning to experience intermittent pain in the most severe curve.

I am desperate for some answers, if there are any, to know what to expect, prepare for, disabilities, ????

Please help. Thank you.
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periwinkle52 responded:
Good morning, I wish I had the answer's you seek, as I have had a surgery similar to yours, only a little more intense. I, too, have lost approx., an inch or so, with it being only 8yrs., since surgery. I also have issue's down by my tailbone, although, there is not a surgeon that will attempt the surgery.
I will follow your story, with great interest, & pray for you at the same time. Thank-you, periwinkle p.s. I am, already on disability...
 
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LuckyMagic replied to periwinkle52's response:
Thank you for taking a moment to reply. The 'strength' in this discussion is knowing others, like yourself, struggle daily with similar problems...many with more than I am dealing with. 'Knowledge is our Power", and it is so true. Through your words and others, we can support, help and give others information from personal experiences. Again, thank you:). Sending Peace and Prayers your way.
 
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periwinkle52 replied to LuckyMagic's response:
Amen, to that! It certainly helps knowing, other's are going thru the same, as one's self is.
I am the only child, out of 5, that inherited this genetic illness, I have, that is causing all my issues. It attacks all my Endocrine Glands, which of course, control our bodies! What kind of luck is that?? Better yet, the rest of my syblings, all live about 750 miles away, & do not concern themselves, with MY problem's! As you said, It is wonderful, to be able to go somewhere, where other's do experience & care about what is going on! Thanks for talking with me & good luck to you, periwinkle
 
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bonebabe responded:
My goodness! I've never seen a score that low! Was it in your wrist or hip? It's no wonder your rods are becoming loose.

Yes, yes. Forteo is definitely what you need. It will improve your score, but you will never have a normal bone density T-score.

Immediately go to the NOF webside (www.nof.org ) and order their booklet "Boning Up on Osteoporosis." It will give you all kinds of info and even has pictures of correct and incorrect movements. What you want to focus on is avoiding a fracture. The two very basic movements to NEVER do are forward bending from the waist and twisting side to side from the waist.

If your doctor hasn't suggested it, ask for a referral to physical therapy for ADL's (Activities for Daily Living), posture and balance.

If you're not consuming 1200 mg of calcium a day, start now. It won't improve your scores, but it will help you maintain what you have and help any meds you take work more effectively. Also, have your Vit D level checked if you haven't.

It's important to stay active, but do so properly. Are you close to retirement? I'm not sure how strenuous a flight attendant's job is. You shouldn't be lifting anything more than 10 lbs besides the bending at the waist. A fracture could change your life drastically in a split second.

Did you know before this that your bone density was low? Had you been on medication? I can't imagine letting a score get that low.

I wish you all good things. Please be careful and order that booklet now.
 
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LuckyMagic replied to bonebabe's response:
Bonebabe, T score is based on the spine. Even my Doctor was shocked and went back to the Radiologist to discuss. Apparently, hips are in the Osteopenia stage only. The most severe curves, upper right (thoracic) and lower left (lumbar) are the only two areas that could be scanned because my rods created poor imaging. The score -7.7 is correct. I have been on 1200mg calcium daily and 800iu of D3 for over a year now. Thank you very much for your response. It appears to have happened very quickly from osteopenia to this.

My job is a concern on the level of turbulence, constant vibration, and I am careful what I lift. Early retirement may have to be a consideration. I can only bend at my hips, there is no 'twist' and no give at all in the torso. I am very active because of my work, but in the last 8 months have discovered too much activity is exhausting and very hard on the body.

I will order the booklet, truly appreciate your good wishes and support. "Don't Fall Down" has been my mantra for 38 years.. LOL:)

My original surgery was written up in Medical Journals for one of the most amazing scoli surgeries of the time, so guess I'll have to take the next step with this Osteoporosis shocker T-score.

Again, thank you.
 
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bonebabe replied to LuckyMagic's response:
In our ISCD accredited osteoporosis center, we would have not done the spine. It would be considered unusable. The thoracic area is not scanned in a DXA - only L1-L4. If we can get two good vertebrae, we'll do that, but never just one. We scan the forearm instead because the bone there is the same type as in the spine. Did they scan your forearm? Did you have your scan done in an accredited testing center?

I would ask some questions of the place where you were tested, the credentials of the person testing and whether the radiologist reading it was certified by the ISCD to read. Most radiologists are not. They think reading is a quick easy way to bill and look for fractures and T-scores. If the tech/nurse doing the test also isn't certified by the ISCD, she could do a sloppy job which would greatly affect the numbers. Don't be afraid to ask questions.

The ISCD is the big cheese of bone density testing. It stands for International Society of Clinicial Densitometry. You can browse their website for more info at www.iscd.org or the National Osteoporosis Foundation at www.of.org .

Personally, I don't think I'd take this at face value, but regardless of what you find out, it's time for a RX.
 
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LuckyMagic replied to bonebabe's response:
Again, THANK YOU. I have checked the websites; so much information, it is very overwhelming. I did not know to ask about specific accreditation for anyone. It was done @ a hospital and the possibility is high for a "probably not" for credentials. My doctor's specialty is endocrinology, ie, specialty in parathyroid, thyroid issues.

I did have the 24hr urine, blood panel, one x ray for possible rib fracture, and the dexa on spine only. The hips were showing -1.5/-2.5, which confused my doctor because of the drastic -7.7. No other tests were administered, Forteo only recourse recommended.

Because of the severity of my scoliosis, loss of height and recent (w/in last 6mos.) more pain, body exhaustion and I can tell more 'collapsing' forward causing struggle to stand up straight, I feel there has to be another opinion required. I do not know quite where to 'turn', however, now I at least can ask better questions, thanks to your information.

I continue to work, knowing I'm taking a risk every flight, but have to get a direction before I can just "retire". My attitude is positive the right course will present itself, just have to find it.

You have helped me a LOT, and I truly appreciate all help. I will continue to sort the massive amount of info on the 2 websites. Major concern is: are those 2 stainless rods in my back in jeopardy of becoming loosened because of the osteoporosis and really create MORE issues for me....no one seems to know.

Thank you for the work you do and helping with this website.
 
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bonebabe replied to LuckyMagic's response:
You are more than welcome for the info. I'm so glad it's giving you a starting place for questions with your doctor.

A lot of endos are trained/accredited to interpret bone density testing, but I'd ask mine anyway.

You said that only your spine was scanned and yet you have a score for the hips. Please tell me they scanned the hip area and didn't just do the back! I cannot fathom someone only doing a spine scan on someone with rods. You also should have had a forearm scan. I'm sure your doctor was concerned about the variance in the two scores because the -7.7 is not a reliable score. If it hasn't been too long since your scan (a couple of months) you can request to go back and have the forearm scanned. It won't cost anything more and will only take a few minutes.

Did the tech doing the test measure your height in bare feet and compare it to previous heights? Did she do a Single Leg Stance to assess your balance? Did she go over your calcium and Vit D daily intake? Did she ask about any medications you might be taking that affect your balance (sleeping meds, ambien, xanax, etc) Did she ask about family history of osteoporosis and/or hip fracture? What about menstrual history, smoking or alcohol consumption or any prednisone use? All these are important to get an overall picture of your fracture risk.

I'm sorry to say that yes, bone loss in any area will affect hardware in that area - just like bone loss in the jaw will loosen teeth. It's very possible that the Forteo will help stabilize your rods and the bisphosphonate will strengthen that new bone so that you don't have to have repeat surgeries.

I understand your job concerns. Is there a possibility that you could remain employed with the airline, but in another capacity? I do hope you don't lift any luggage, especially to put in an overhead compartment. If so, please ask someone else to do that.

I think, if I were you, I'd find an accredited testing site from the ISCD website, and fork out the cash for another test. It's not much compared to other imaging tests. Here, it's about $220 and that includes the interpretation. You could use the same referral from your previous test if it's not more than a year old.


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