I need advice on possible revision.

[cyndiotr81]

Hi everyone,
I am new to the forum, although I had scoliosis surgery back in 1976. I have a long fusion from T6 to L4 and a harrington rod. I am now 51 and have finally decided it's time to follow up on the status of my old surgery. I have been very active, work as an OT which is physical, but have gradually been having more issues. I had a hard time finding a surgeon in the Houston area. I ended up at Spine Austin, I saw Dr Lowenstein. I did like this practice and Dr Lowenstein. To make a long story short I had a CT myelogram which showed I have severe DDD at L4-5 and L5-S1 with significant stenosis, a non fusion above it and a bent hook and loose rod as well as the expected flatback syndrome. Arthritis/stenosis above T6 into cervical area. Dr Lowenstein has recommended extending the fusion to my pelvis, anterior approach, fixing the non fusion, placing a "cage" at the L4-5 L5-S1 disc spaces. He said I have some time to think about it. I have also had a lot of hip pain and found out both hip joints are wearing out and I need arthroscopic hip surgery. I have several questions: Has anyone had experience with Dr Lowenstein? I need a second opinion, any recommendations? Any suggestions for time frame for how long I can wait before I should consider doing this? I have some mild weakness in my Left ankle and big toe. Pain but manageable so far. Still working a lot, some lifting at times. Love to have some advice. I'm really in good physical shape overall, There has been very little I haven't been able to do over the past 34 years, so I really can't complain!

[LindaRacine]

Hi...

You might want to check out Darrell Hanson. I've heard good things about him.

Regards,
Linda

[Rick P]

I had surgery in 1977, have a fusion from T-8 to L-4 with a Harrington rod. Never had any problems till this time last year when I hurt my lower back picking up some boxes. I ended up seeing Darrell Hanson and would recommend him.

Here is his contact info:
http://tinyurl.com/2u9zxax

[cyndiotr81]

Thanks!

Thanks Linda and Rick. I am set up for a second opinion with Dr Hanson on November 18th. Has anyone else had problems with there hips? I've apparently worn mine out. I'm going for arthroscopic hip surgery in December. Just wondering how common this is.

[titaniumed]

Welcome

Just wondering why your hips are wiped out? Are any of the surgeons saying that the fusion might have accelerated this?

My hips and knees bother me sometimes, but skiing for 48 years might have had something to do with that.

I take it that you will do one hip first, then the next maybe 12 months after? Wait till the hips are done with and then the back?
Ed

[cyndiotr81]

Thanks for responding Ed. I have had several opinions on why my hips have worn out. One is I use to be a gymnast before my original surgery at age 16, and have had a clunking hip for years. I have remained very active in sports and working out and have really overused my hips to stay flexible. I also have worked for 30 years as an OT and have done a lot of bending and lifting again all from the hips/knees. All the sudden this year they wore out to the point where I needed to do something. As you mentioned I am going to have my hips taken care of first, as they are causing me the most problem. I'm going to have an arthroscopic hip repair done in December to try to maintain my hip and prevent a total hip. I'm pretty sure I'm going to postpone the revision for a while. I am lucky that I am in good health and in overall good shape so far, still going to the gym regularly just avoiding hip exercises! Thanks for your interest!

I dont know my original curves
S curve -T6-L4 fusion/harrington rod at Univ of PA 1976
By Dr Edgar Ralston

[titaniumed]

Cyndio

It would be great if you keep in touch here with your medical journey. The hip surgeries are popular, and I’m wondering how long it will take for you to recover from that.

I broke the heck out of my shoulder about 2 weeks before my scoli surgeries and did my recovery with my shoulder broken. I’ve heard that the shoulder repair surgeries were painful from others. They must be wimps as I gave it a 1 on a 1-10 scale for pain, and all I took was 1 Celebrex. It would be nice to have some sort of “gage” from you on this.....

I hope you can maintain with your back issues.
Ed

[cyndiotr81]

Hi Ed, Thanks for your interest. It's nice to talk to someone who has been there! I'll keep you posted!

[JohnV]

scoliosis/arm tremor maybe related need feedback please?

I am a young man, just turned 31 years old. About a year and a half ago, I started to develop a slight tremor in my left forearm/hand. Over time, the tremor has gotten more exaggerated. Just recently I have noticed that my left lower leg/foot has felt heavy and stiff and I cannot move or rotate my foot as well as my right one. I have jogged a couple of times recently and although, while running I was okay, afterwards, this caused lower back ankle/foot pain. When I stand or walk for an extended period of time, I have pain in my lower back and ankle/foot. Sometimes when turning my head quickly, I get a pinching type pain in my neck on both sides of my neck.

When I sleep, the tremor goes away. When I wake up with the sensation of pins-and-needles in my arm from sleeping on it, although it is numb, as it normally would be, I have complete use of my hand and fingers, normal dexterity, without the tremor, until normal feeling comes back, usually up to about 5 minutes. The more relaxed I am, it seems, the less the tremor. But the stiffness or lack of dexterity of my fingers stays the same. Also, a drink or two of alcohol suppresses the tremor.

As a twelve year old, I had scoliosis surgery, placing rods in my back, from “T-4 to the end plate of T-10 and T-11 through L-3’. Also, about 10 years ago, from a target shooting gun accident, I have a .22 caliber bullet fragments remaining in my upper left arm. At first, we thought the bullet fragments were the cause since only my lower left arm was affected but since the EMG shows normal nerve conductivity and now that my left leg seems to be affected we don’t think this is a factor..

I was told, when I had the scoliosis surgery that possibly, down the road, I could experience problems from my neck. Currently, as stated earlier, I get some neck pain and stiffness and lower back pain. Earlier, in the summer, after doing some strenuous yard work, I had acute lower back pain that lasted for several weeks. I took Skelaxin, a muscle relaxer, which helped. This is the first time I have ever had that extensive pain in my back.

We have been to several different neurologists, without much success. I have had a brain MRI done, a neck MRI, 2 different EMG’s, extensive blood work and an EEG done as well. All reports are included. You will see that the Brain MRI shows normal. The EMG shows that the nerves and muscles of my lower arm are normal. The blood work and EEG are normal as well. The Neck MRI is, we believe now is the area of focus, as the report says that I have “significant reversal of the cervical lordosis and a moderate to large, right sided disc herniation at C6-C7, (there are three herniated discs c4-c5, c5-c6) The neck problems seems to have been overlooked to date by doctors as originally, the diagnosis was that I had an anxiety related tremor because when I concentrated on something else, the tremor went away, briefly. Also, there was some concern from just one of the doctors that it may be Parkinson’s disease. However, most of the doctors felt that the frequency of the tremor, 10 Hz doesn’t suggest it. Also, in trying Cararbidopa-levodopa, 25-100MG tablet, which should have stopped the tremor, if it was Parkinson’s, did nothing but made me nauseous. It had no affect on the tremor.

Speaking of medicines, to date, I have been prescribed the following medications with literally no results. Starting from earliest date to most recent…
Trihexyphenidyl – 2MG, taken twice daily – (this made me dizzy, headachy,weak.)
Pramipexole Dihydrochloride, (Mirapex) - .5MG, taken 1 tab, 3 times daily – (this caused
diarrhea)
Lorazepam - .5MG, taken one tab, twice daily. (this lessened the tremor slightly for just
a day or two but it kept me awake).
Carbidopa-Levodopa – 25-100MG, taken 1 tab, three times daily, (Made me very
Nauseous, with no affect).
Clonazepam - .5MG tab, taken 1 tab, twice daily. (no affect)
Amantadine – 100MG, taken 1 tab twice daily. (Lessened tremor for just a day or tow but
then made me nauseous, headachy).
Propranolol – 20MB tabs, taken 1 tab daily. Since there was no affect, this was
Increased to 3 tabs, 3 times daily. (No affect at either dosage).
Prednizone – Tried a metered dose pack to see if it would reduce inflammation hoping
to reduce the tremor some. (There was no significant affect).

I am currently not taking any medications other than occasional Advil for pain in my lower back and neck stiffness. Additionally, I tried acupuncture for 8 appointments. While on the table, relaxing, the tremor went away, then, after getting up, the tremor came back.

[JulieBW]

Hi from another OT

Hi Cindi OTR,
I just wanted to say "Hello"! I also have stenosis, was diagnosed with severe arthritis at the base of my fusion when I was 40. Fortunately my fusion ends at L2, so I haven't experienced the more severe flatback problems. I also have arthritis in more joints than I can count, but especially my hips, with knees less involved, some finger joints (mostly distal). I stay active with swimming, gardening, back strengthening exercises. I worked for the past 15 years in school-based practice, but this summer I accepted a part-time (3 days/wk) position working with adult DD. The walking distances in schools was too much for me any more, and I feel fortunate I'm still able to work this much. I just started taking tramadol for pain on days I want to be more active. I still love walking in the woods and other park areas. Good luck!

[Lorraine 1966]

Hi Cindiotr, I really found your post very interesting. I have some of your symptoms and am so sorry to read what your are going through. I would be very interested as well if you could keep us up to date on your progress. I actually am very lucky and appear to have escaped flat back, and was so sorry to read that your rod is loose and your other problems.

I suffer with hip and knee problems as well as pain in the lower and upper back and neck, actually have found out not that long ago that I have a curvature in my lower back and my neck but only slightly there. I do wish you all the best, and as I said if you can please keep us up to date.

Julie, I think you are doing a brilliant job. I honestly do. I follow your posts when we hear from you as we had our operations at a similar time.

John, dear oh dear you are really being put through the wringer aren't your. My prayers go out to you but I am so sorry I dare not even think what could be wrong, but will send you lots of positive energy for the tremors to stop.

Lorraine.

[cyndiotr81]

Hi Julie and Lorraine

I was amazed to hear from 2 people who had surgery back in 1966. I know how difficult it was in 1976 and can only begin to imagine how tough it was in 1966. I feel I've been lucky to really do everything including quite a few years working in Adult Rehab which required a lot of heavy lifting. I have never missed a day of work for back problems. I'm afraid I have probably added to the wear and tear I am experiencing by the very active lifestyle I have led with the way my back was fused. I am denying I need the revision, but I know it is ahead of me. I am going to have to change jobs as I am still doing some lifting in home care and it's catching up with me. I've never worked in the school district or with DD, Julie how hard would the transition be? Thanks so much for your interest. I am staying active and taking one step at a time! Love to hear more of both of your stories.

[JulieBW]

Hi Cindi,
I think the key to success in any new professional endeavor is having a mentor. I believe some therapsits even have paid someone on an hourly, as-needed basis. You would find that you know more about the new field than you think. It is challenging, especially because my brain takes more time to process complex information than it used to. I worked in adult DD about 20 years ago, but a lot has changed. You would be doing less direct service, more consulting. Mechanical lifts are more common than people lifts, to save the backs of caregivers. There are often openings that may not be advertised because they have been unfilled for so long. School-based includes a lot of walking and carrying of whatever equipment and supplies you will need. I used a rollerbag for the stuff, but I'm not able to walk very fast, and schedules are always tight.

I was 12 years old when I had my surgery. I stayed in the hospital for 6 weeks (due to pulmonary complications), then was at home in bed for 5 more months. I missed most of 7th grade and had tutors who came to my home. My body cast came off in February, and I returned to school in April. I think I went to PT a few times, but mostly did gradually more walking on my own. It was just what happened because that's what the doctors recommended to my parents. I don't really think back on it as being difficult, just different. I watched a lot of TV, and still recognize the popular songs on the radio from that time period.

Lorraine, it is always good to also see your posts. We are still kicking! I mostly come here because I worry about my future.