Aging Fusions

[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]

52 year old - thoracic fusion and h. rod placed in 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.