Aging Fusions

[JulieBW]

Hi all,
I think my fusion is older than anyone I have met here (43 years). I have begun to experience neurological symptoms indicating degeneration at the base of my fusion. I do not have severe pain. I am 55 years old, I hope to live another 30 years but I worry about the future. Specifically, I worry that I will have severe pain, but will be considered too old for further surgery. Do others have this concern? I am active, including swimming, yoga and strengthening exercises to keep my back strong, but I have lost a lot of mobility in the past 3 years. Any thoughts?

[Lorraine 1966]

Hi Julie, its been 43 years for me as well. I have been having problems for quite a while now. I cant help you though, sorry, as I have had facet injections, in fact a whole lot of treatment to try and help. I think you are doing the right thing by doing the swimming, yoga etc to keep your back as strong as possible.

I honestly dont know what is going on, as on my last consultation I had lost 4cm in height over the last 6 months, I now have scoliosis of the cervical spine and the lumbar spine is worsening. There is a doctor I am going to call here in Australia, but for you I honestly wish you all the very, very best and as I said I think you are doing all you can by keeping active etc.

Lorraine.

[LindaRacine]

Hi...

I think it would be a good idea to see a scoliosis specialist to find out what is going on. I volunteer at UCSF, and routinely see people who are 70-85 years old, who have just gone through successful scoliosis or revision surgeries. With that said, there aren't a lot of doctors willing to take on this older population.

If possible, you're going to want to find a specialist who has a lot of experience in treating patients with prior fusions. In New York, your best bets would probably be Dr. Oheneba Boachie, Dr. Thomas Errcio, Dr. Baron Lonner, or Dr. Frank Schwab. You'll find a lot of posts about Dr. Boachie on this forum. He's really fabulous. Unfortunately, he doesn't accept insurance reimbursement, so he's likely to be more expensive than the rest.

Good luck.

Regards,
Linda

[Karen Ocker]

My fusion, no hardware, was done in 1956. I think I beat everyone else on this forum.

I had a successful revision 6 years ago and got my life back.

[JulieBW]

Linda,
Thank you for all you offer us here. Just before this post I visited your web site, and noticed the chart you have of scolio specialists, I think gathered from internet resources. I appreciate how much time you take to respond to so many posts, and I think doing behind-the-scenes work here. I probably will continue to try to obtain as much general and free info as I can before spending the big bucks for an out-of-area specialist. I have read the posts about Dr. Boachie, have gone online to read articles by him.

Karen, I have seen your posts, but did not know the age of your fusion. You get the golden (years) baton!

Lorrriane, I haven't seen your posts. My perception is that most early Harrington rod surgeries included the lumbar area, resulted in flatback syndrome, and have already been revised. Is this perception true??? I don't know, because the people who don't have problems rarely post here. My doctors in Buffalo were doing a fusion every week, and I have not seen any of those people post here. Since mine is thoracic, I have done very well until my age reached over 50 years. I have recently lost 2" of height, which the local university hospital scoliosis specialist said was due to my rod "peaking" (I think that means my curve has worsened).

I guess I was really wondering if there is a line of thought supported by scolio revision specialists that all aged fusions will eventually need to be extended to the sacrum?

[norab]

Hello Julie -

I can also recommend Dr. Cunningham who works with Dr. Boachie at Hospital for Special Surgery. He is experienced with revisions and may take insurance. Also Dr. Jean-Pierre Farcy at NYU/HJD.

Good Luck!

[loves to skate]

Hi all,
I am 55 years old, I hope to live another 30 years but I worry about the future. Specifically, I worry that I will have severe pain, but will be considered too old for further surgery. Any thoughts?
Hi Julie,
You are definitely not too old for further surgery as I had my surgery at age 67. I am a year and 1/2 out from surgery and doing great. My only problem is some nerve pain mostly in my right leg from having severe sciatica prior to my surgery. Just make sure you get an SRS Dr. who has lots of experience with revision surgery and get a second opinion also.
I asked Dr. Rand how old was his oldest fusion patient and he said 76 years of age

[JulieBW]

Hi Skater,
Thank you for that upper age limit: something more solid than the impressions I get from the posts here. So I guess I might have 20 years to develop the severe pain that could justify further surgery. And maybe that will never happen. I know that on a rational level, but I still worry. Right now, walking is just slow and uncomfortable, not outright painful. I am more comfortable when I sit, and very comfortable when I lie down, so I sleep well. I am very grateful for this, as well as grateful for the many comfortable and active years I have had.

[Debra]

I have not been on the list for a very long time. I was interested in seeing the original message from JulieB regarding aging patients. I had a Harrington instrumentation and fusion in 1967---still have about a 30 degree curvature. I've had some trouble over the years but have remained active. I raced sailboats, skiied, danced, had 2 babies. I am now 56 and on 2 meds a day (non-narcotic) and walking slowly, a little hunched over. The pain in mainly in my hip, where the curvature pulls on the big muscle. I am in Houston and have a doc I like very much but hate to think I will have to endure this discomfort the rest of my life. I have kept my weight down and try to remain active but the last few months have been difficult---the burning is nearly always there.
Thanks for any input.

[LindaRacine]

Hi...

There's an entire community of individuals who had Harrington rods implaned. They can be found here:

http://health.groups.yahoo.com/group/Flatback_Revised/

Regards,
Linda

[JulieBW]

Linda,
I haven't found the yahoo flatbacks group helpful at all, since I am not a flatback and don't need surgery at this time. I am very interested in connecting with those who are simply experiencing problems of aging, in regard to base-of-fusion problems. I expect our symptoms vary widely since our fusions are for varying spinal segments. My most helpful medical visit was to a local physiatrist, because they are looking through a wider lens than just orthopedics or neurology. Thank you for offering your best thoughts.

Debra, what has helped me most recently is walking poles. It takes me out of that bent over position and puts the forces of gravity on a different spot. I can walk much more quickly and comfortably with these poles. I bought mine from Lee Valley Tools, where I buy many gardening tools. It is a great company, good quality and customer service. Here's the link for the poles: http://www.leevalley.com/garden/page.aspx?c=2&p=52925&cat=2,40725,45454

[Debra]

Julie,
Thank you for the reply. I have not been diagnosed with flatback but sure don't stand up straight all the time, and do tend to lean forward. I am off of my meds this week and truly crooked. I'll look into the walking poles. Thank you!

We can help one another, this is the only group I know of. I go again to the dr. in October and will get her to tell me which vertebrae and the technical terms, because I forget!

Dr. Harrington did my surgery here in Houston. My curve is in my hip and the instrumentation is all the way down. My sister is 5 years younger, wore the Milwaukee brace and still had the surgery. Her curvature is a little different. Between us, there are 6 daughters and 2 granddaughters, hoping they are all okay!

Debra

[JulieBW]

Debra,
Before buying the poles, you can experiment with sticks from outside. A cane has also been helpful, but doesn't get me as upright as the poles. And I love the fact that the poles don't make me look as old as a cane does! I look more like a hiker, less like an old lady!

[titaniumed]

Ski poles, ski poles, ski poles. even if you dont ski!

Atomic competition poles will make you look very competitive......LOL

You can find them at garage sales for next to nothing.
Ed

[JulieBW]

Ed,
Yes, ski poles would also work. I like my hiking poles because they come in three segments, so they are not only height-adjustable, but also collapse into about 1 foot long to fit in a bag. When I walked with a cane, it kept falling wherever I parked it. But you can't beat the price of a garage sale find. Thanks for the thought.

[rainbow2010]

I have been having problems with discs degenerating above and below my fusion. I had surgery to remove extra fusion in the L5-S1 area and that gave me relief for a year. Then along with the disc going, I have scar tissue in the area that irritates the nerves. Nothing has worked to relieve that pain except the heating pad and working out in a warm pool to keep my legs and low back muscles strong. Above my fusion, I have had nerve ablations done from T4-T12 on the right side to help with the pain around my rib cage. I have pain medicine for arthritis in my spine but I only take it on real bad days. You can have surgery to replace the lower disc, but it will dissolve on its one and the vertebrae will fuse themselves. I won't have the surgery for my thorasic area discs because it involves moving my heart and lungs out of the way. My doctor calls it "no man's land" - no man in his right mind wants to opoerate there unless it is to save a life!!

[MGH 1970]

Hi Julie-
I am also interested in issues of aging with harrington rod/fusion - in my case almost 40 yrs. ago. I also have just a thoracic fusion/rod.
I have lost 2" of height in the last few years due to worsening curves. Now both curves are 60+ degrees - top one bows out from the rod. I understand from my recent visit to Dr. Rand that 2 curves can be an advantage because they balance each other - I have erect posture and no hump. I do look increasingly short wasted. I had no significant issues until 3 years ago when I "put my back out" and I have dealt with pain ever since. (Previously I was athletic and had three easy pregnancies...) Biggest issue for me previously was the discovery that I was at risk for exposure to Hepatitis C from blood transfusions during the surgery in 1970. Despite being asymptomatic, I tested positive for a type of HepC that was commonly spread by blood transfusions at that time. Fortunately it is the most highly curable type but still involves months of interferon treatment before one is cured. (I encourage testing for anyone, even of they have normal liver function tests, who had transfusions during surgery during that pre-testing era when donors could get money for their blood. Symptoms can take many decades to appear.)
Because I was doing yoga when I put my back out the first time and PT the second I have felt too scared to pursue much exercise in the past few years (other than an active family life - 3 children - youngest 10). Dr. Rand did say I might need my rod extended or another rod due to the inevitable wear-and-tear of the spine below the rod. He didn't say it was inevitable. He wanted me to get a spinal block for some new pain I get on the left side of my lower back but I declined. I have found an "AQUAJOGGER" helpful (holds you upright in deep water) and the only thing I dare to do just now. My back does feel better when I use it. (freestyle swimming gets uncomfortable in my lower neck at top of rod so this is better...) I was recently diagnosed with Osteoporosis in my spine which compounds my concerns about my future. Haven't decided yet whether to risk the side-effects of medication for it.
Lets keep the conversation going around this topic of growing older with scoliosis/older harrington rod/fusion - I'll try to check in more often.

[SandyC]

Good morning MGH 1970,

I also have Hep C that I recieved from a blood transfusion in 1983, when I had my Harrington done. Like you I have no symtoms. It was pure chance that I requested a test after listening to a report years ago on TV about Hep C and blood that I recieved. I feel lucky that I didn't get HIV, since blood was only being randomly tested for HIV and Hep C wasn't even being considered.

I tell everyone that might have recieved blood or even blood products to get tested.

Thanks for bringing up the issue

SandyC

[loves to skate]

Good morning MGH 1970,

I also have Hep C that I recieved from a blood transfusion in 1983, when I had my Harrington done. Like you I have no symtoms. It was pure chance that I requested a test after listening to a report years ago on TV about Hep C and blood that I recieved. I feel lucky that I didn't get HIV, since blood was only being randomly tested for HIV and Hep C wasn't even being considered.

I tell everyone that might have recieved blood or even blood products to get tested.

Thanks for bringing up the issue

SandyC

Hi Sandy,
The reason blood wasn't tested for HepC back in 1983 was because it wasn't identified as yet, consequently there was no test for it. It was called Non A,non B hepatitis. Fortunately it is curable now. I have two friends who went through the cure and are fine now.
I wish you well, those of you who have to go for the cure.
Sally

[loves to skate]

Hi Julie-
I was recently diagnosed with Osteoporosis in my spine which compounds my concerns about my future. Haven't decided yet whether to risk the side-effects of medication for it.


If you don't risk the side-effects of medication for osteoporosis, where do you think you will be in another 20 or 30 years. If I hadn't been on Fosamax for 5 years, I would not have been a candidate for fusion surgery. As it was, my Doctor didn't try to get much of a correction because he was afraid the screws might pull out of the vertebrae. Something to consider.
Sally

[JulieBW]

MGH, Thanks for your post. Sandy and Sally, thanks for your contributions as well.

MGH, thank you so much for your answer from Dr. Rand, that revision surgery is not inevitable for people with Harrington rods. I would love to hear that repeated by other revision specialists. I wonder what the stats are on that? If I did decide to see a revision specialist , I might see Rand because I have family in Springfield Mass, not TOO far away. People here have mentioned New York City, but I have no one near there, and it is about the same distance to Boston from where I live. I am fortunate that my activities continue to go well, including swimming, yoga, stretching and strengthening exercises developed with a PT, gardening and biking. Yesterday afternoon I dug up several clumps of white peonies, because I wanted to replace them with red ones for a mix of red and white. I also put in a few more lily bulbs. This is not essential work, I am just grateful I can still do it without help. I'm not crazy about my thick-waisted appearance since I too lost those 2", but oh well. I've recently discovered that I can walk more quickly if I count. It doesn't have to be consecutive, but it keeps my mind on my pace. I shouldn't have to think about walking, but I do, and this helps.

I've been diagnosed with osteopena, but not osteoporosis and meds for my condition are not generally recommended. I just take calcium and Vitamin D.

[rainbow2010]

Have you talked to the doctors at Strong Hospital? I took my daughter to Dr. Jackman several years ago. The doctors there were trained by Dr. Devanney and he was one of the best around before he retired. I go to a doctor here in Atlanta that was trained by him.

[JulieBW]

I've seen Dr. Rubery at Strong. He is a SRS member, but not a revision specialist. He was congenial but not very helpful. I believe that Jackman is now retired. Professionally I am an occupational therapist, and I have worked with some kids who were his patients. Rubery recommeded that I come back in a year to see if my curvature is continuing to progress, but I haven't done that yet. I probably will sometime, but if my curvature worsens, my symptoms will worsen and/or I will continue to lose height. Since I'm able to continue working full time and otherwise leading my life, I don't want to spend much time pursuing medical resources. So I check in here looking for information about the bigger picture, and worrying some about my physical future.

[Lorraine 1966]

Julie, I too have lost 2cm to 3cm height in the last 6 - 12 months. We are suffering from the same problem, or similar. I have not got flat back either, but am afraid I have to take pain relief as my pain is honestly unbearable and I can stand a lot of pain.

I still garden and do all the normal things, but have to lie down every afternoon for a hour or two. There is a doctor here in Australia I am going to see when it is organised, hopefully he will have some ideas how to help.

I feel like my curve is getting worse again too, but when I have MRI they cant be read as the rods make it all blurry. I am having a whole new set of Xrays to be sent to this doctor I am going to see, but I just would love to know what on earth is happening.

Lorraine. (Macky) A lot of my posts are under that name as well, I mucked up my log in. Typical of me these days.!

[jrnyc]

Hi Sally
i cant go back on actonel or fosamax cause i am having dental implants, & the dentists & my G.P. as well as surgeon told me a person doesnt heal right while on it..especially healing bones in jaw...cause when bone graft is required for implants, they want you off actonel/fosamax for at least 3 months before procedures..

i would like to be back on actonel...especially cause i have osteopenia! but 2 scoli surgeons have told me "not to worry about it"...course, i havent had surgery...yet...

take care
jess

[loves to skate]

Hi Jess,
You are correct about the jaw thing because I asked my Dental Hygienist about Fosamax and the jaw. However, my spine surgeon didn't say anything about being off fosamax before or during my surgery. With osteopenia, I don't think you need to worry just yet about taking fosamax or actenol. The thing is that with osteoporosis, the pedicle screws don't hold as well and the Doctor can't get much of a correction because of the pressure that needs to be exerted to force the spine back to a straighter position. Some people are afraid of taking fosamax because they think that it will cause jaw problems which is not the case. Some people do however have stomach problems when taking fosamax or actenol. As with anything there is always that small risk.
Take care, Sally

[JulieBW]

Lorraine, so good to see your post here. I am so sorry I never replied to your pm. I just didn't check that box over the summer. I tend to check in here during my lunch, but over the summer I have a different job without computer access.

I don't know why they didn't have that problem blurriness with my MRI. I've seen it mentioned here, but several different MD's have seen my MRI and that problem has never been mentioned. Rochester NY is a very good medical community, maybe they are doing something different with this imagery, I don't know. On the other hand, they have not seen evidence of my nerve impingement on my MRI, which is why the scoliosis specialist wasn't helpful. A CT myelogram was recommended for me, but that is more invasive and I'm not ready for it.

[Lorraine 1966]

Hi Julie, I think you may be right as far as the MRI is concerned and the more up to date ways of doing them over there. Myelograms are not done here unless you are going to have an operation Grrr, but even if it was available to me I dont think I would have it as yet, I agree it is too invasive.

Its good, not good in great, but I should have said helpful to find people with a similiar problem, as sometimes I feel like I am going crazy, and to have support here really does help.

Lorraine.

[rainbow2010]

I have a steel rod so MRIs don't work in the area. My doctors use CT scans for better results. They do them once through with the machine upright and then another pass with the machine tilted.