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lisazena
10-07-2011, 12:48 PM
I am 58 years old, have a left thoroclumbar curve that is 60 degrees and starts at T12 with a compensating curve below at 30 degrees. I have been suffering with sciatica and neuropathy for six years and with walking distances and standing for one year.

I saw Lonner, Errico and Clements this week (questions below).
Both Lonner and Errico think I will need surgeryónow or in the next year or two.
Clements suggested I try epidurals for three months first and then make up my mind. I am resistant to the epidurals as the one epidural I had initially made me feel worse and then did nothing and there isnít agreement about where to do the epidural (seems like itís a guessing game).

I gravitate towards Lonner, though I know Errico would also be a good choice. I clicked better with Lonner; my wait in the office wasnít long; his office runs more smoothly and will handle all insurance issues; he spent more time with me; was more upbeat about the outcome and his office was more technologically up to date.

What I liked about Errico is that he does all adult scoliosis surgeries with Frank Schwab, making for an impressive team.

Now my questions or novella (LOL):

Approach: Lonner said he would fuse me T10 to sacrum and NO bone grafts. Errico said T4 to sacrum and bone grafts. He said studies show that T4 to sacrum is best fusion for those who need fusion in thoracic area. Which do you think is better?

Hospitals: Both surgeons operate out of NYU Hospital for Joint Disease, and NYU Hospital. Is one better than the other?

Making the Decision: Everyone says you know when it is time to make the decision. I feel like I may never be that way. Did everyone feel they knew when the time was right?

Confusing Factor (Not a question but looking for insights): Just as I was getting ready to firm up my decision at the end of August I found out that I have B6 toxicity, which can also cause neuropathy including problems with walking.

My B6 levels are not crazy high, but are twice normal. I began taking vitamin B five years ago after suffering for 8 months with sciatica and some neuropathy (binding in feet). I took 100 mg of B6 (FDA tolerable level), but also took a multivitamin (which included 2 mg of B6óall that is needed) for a total of 102 mg.

I stopped taking vitamin B at the end of August and am told that it will take 2 to 3 months to clear from my system. I will be tested at the end of this month. I am not sure how long it will take for the effects of B6 to cease. I have not found a doctor who is really knowledgeable about this except for my neurologist who says nerve damage may be permanent, but I think that view is extreme.

Since I stopped taking B6 I have gotten a little better, but I am doubtful B6 is the answer to my problems. In addition to wanting to wait a little bit to schedule surgery just to see if B6 is a bigger factor than I think, I do have some concern about the surgery since my leg symptoms donít see classic.

To explain my leg symptomsóI can walk and stand, but first feel soreness at the bottom of my right foot (opposite my curve) foot that later translates into tightness in my calf and the back of my leg and pulsing on my calf, and tightness in my butt (sometimes right above my butt) the more I walk/stand often the worse I feel and though rest can provide some relief, the leg/foot/butt problems become pronounced with the more I do. I can physically walk distances, but pay a big price if I do. The problem is cumulative and is worst at night after a dayís activity.

Itís as if my feet donít like the weight of my body. And my problems are mostly on the right opposite my curve where I am told the nerve endings are.

My MRI said I had stenosis; but according to a CT myelogram (more reliable) I donítójust arthritic changes, some listhesis and bulging discs at each levelónothing really bad.

Lonner explains my symptoms as the effects of loading on my scoliotic spine and he doesnít even think I need to wait for surgery. He does not think my problem is B6.

Errico says my symptoms probably come from stretching of the nerves. When pressed he said some of my symptoms may be B6. But it is hard for me to separate B6 from other symptoms.

Clements thinks my problem comes from arthritic changes right below my curve that trap nerves at multiple levels.

Probably no one on the forum knows anything about B6, but I throw this issue out there. I also wonder how much peopleís symptoms varyóif there is a large difference in the way symptoms can be individualized.

I have a gut feeling I will need the surgery and because of my age and the limitations imposed by my symptoms donít want to wait too long. I know the surgery will offer new limitations, but if I could walk without limits and stand as long as I want it would be huge.

Thanks in advance and thanks to all who have spoken to me or emailed me individually and offered their support and guidance.
Lisa

golfnut
10-07-2011, 02:45 PM
Lisa,
I was 60 when I had my surgery last January and have been doing well with recovery. That being said, I'm glad I didn't wait any longer inspite of the fact that I wasn't in much pain. If it hadn't been for my age, I probably would have had even more indecision about scheduling surgery. I can certainly stand longer than I could before surgery & feel like my stamina has returned pretty good for long walks, exercising,substitute teaching, etc. My new physical appearance with a straight back and no rib hump makes me glad I had the surgery, but mainly, I felt like it was the right decision for an active life in later years.

backissues
10-07-2011, 03:40 PM
Lisa,
"if I could walk without limits and stand as long as I want it would be huge"

This IS huge. I had the surgery and am 10 months post-op. I have a new life where I can stand as long as I want and walk as far as I have the stamina to do. I walk 2 miles at once and have done up to 4 miles. For the first time, my husband and I went for a 2-mile hike. I don't remember when I ever did that.

It is great to be able to go shopping without a cart to lean on. I was headed for a walker because of the pain standing without a cart or my "cane seat."

It was great to walk the beach this summer. I had pain for about 25 years but had acute pain in 2009 that made it very clear that I had to do something. It wasn't easy to make the decision. If you read some of my postings, you will see I had some complications in the months after the surgery but they have gone away or been reduced to being insignificant.

I am older than Karen but was in generally good health. Dr. Rand has done the surgery on a patient as old as 80. I wouldn't wait that long.

Good luck with your decision.

Irene

Mojo's Mom
10-07-2011, 09:17 PM
To start with, I can't see where 100mg of B6 in supplement form could result in the severity of symptoms you have.
The neurotoxic effects seem to be at doses 500mg per day and up. But I guess your neurologist should know. Still, you say you had sciatica before you started the large doses of B vitamins. Your symptoms are so typical of scoliosis with big curves that I just can't see blaming the B6.

Your symptoms remind me very much of mine. I have tingling and burning in my left foot, really bad burning in the side of my left calf/shin, burning down the outside of my left leg, pain in my left butt, and pain on the convexity of my lumbar curve. I can't stand for long without major pain, and can't walk more than a mile without significant burning pain and tingling progressing to numbness in my left foot.

Approach: Got to go with what the surgeons recommend, and use your common sense when they don't agree. One of my concerns is that I don't want to have to go back for a second surgery.

Hospitals: Can't help you. I'm going to Dallas.

Making the decision: A no-brainer for me. My quality of life is suffering greatly. My pain is increasing monthly. I feel my ribcage meeting my pelvis more closely every day and it's downright uncomfortable. I feel squished. My clothes don't fit right. My curves are progressing rapidly. A year ago, I wasn't ready. But things have gotten to the point where I simply can't ignore it any more. And I'm not getting any younger! Every year I wait, I'm that much worse, and recovery will be that much harder.

jrnyc
10-08-2011, 12:05 AM
hi lisa
i saw Lonner, Errico, Dr. Neuwirth in NYC and Dr. Anand in LA...also another few in NYC,
including Dr McCance, and Dr Eisler in CT, who does minimally invasive...
i also liked Lonner the best...
haven't decided on surgery...yet...for T42, L 61, plus DDD, listhesis,
hypokyphosis, spinal stenosis, spinal arthritis, etc, etc....
but if/when, it it wll be Lonner! he agreed to use minimally invasive approach for me,
per my request

best of luck
jess

titaniumed
10-08-2011, 08:36 AM
Approach: Lonner said he would fuse me T10 to sacrum and NO bone grafts. Errico said T4 to sacrum and bone grafts. He said studies show that T4 to sacrum is best fusion for those who need fusion in thoracic area. Which do you think is better?

Lisa
Some surgeons like going shorter and some insist on longer. Sometimes when constructs are stopped low in the lower thoracic levels, PJK can result a few years later. The spine falls forward above the end of the rods.
http://www.spineuniverse.com/professional/research/srs/2003/proximal-junctional-kyphosis-adult-spinal

Sharon out here had this happen, and my surgeon did a successful revision on her. She was 5 years post.

When fusions are stopped lower, not only is it less surgery, but probably prevents the gripping, tightness feeling (bear traps) in the upper thoracic area that many of experience during winter weather storms. Its common with full fusions, I have a thread about this subject matter.

You have true sciatica when you have severe leg pain. Been there, done that. Its an indicator of lower lumbar nerve pinching or irritation problems. It was the catalyst for my surgeries, the pain was mind blowing. I also had 4 herniations, DDD and severe vertebral degeneration.

Good luck with your decision
Ed

lisazena
10-08-2011, 11:58 AM
Karen
Thanks for the encouragement. I definitely care about having an active life as I age and mine is already seriously compromised. And improving my physical appearance would not be a prime motivator, but it certainly would be nice.

Irene
Great to hear your great walking report. Since I don't have stenosis or a really bad back, it's not as clear to me that I will have the same results from surgery. My walking issues remain a little mysterious and the surgery isn't as clear, but is becoming clearer and probably will be inevitable and soon.

Stephanie
It's encouraging to hear your similar symptoms. My pain is not really bad right now unless I overdo and at this point overdoing is easy. What's a little strange about my symptoms is the soreness I feel at the bottom of my feet that provokes the other symptoms. My other strange symptom is sensitivity of my legs and feet. I canít tolerate anything a little tightólike stockings or form fitting jeans.

Do you have stenosis or something on your MRI that explains your symptoms? Are your symptoms also cumulative? Worse at night? And the more I do the worse I usually feel. I donít have pain at firstójust discomfort that can builds to pain later on.

As to why the B6 is somewhat a factor. First, I have improved since stopping it (but not enough so far). I also suspect it is not the answer, but want to give it a couple of months to resolve before finalizing my decision. I will probably get surgery this year and probably sooner rather than later. It is good that you have made your decision.

Also, the B6, though not crazy high, is relevant since my blood levels were twice normal. I took B6 for 5 years so that is a long time. But again I think in the end you are right. I really appreciate your helpful answer.

Ed
Thanks for the great info. I will need to read it carefully. I like Lonner and now I am a little confused if I think his suggested approach isnít the best. Maybe I will just need to talk to him.

What do you think about the issue of bone grafts?

Also, I do have classic sciatica, but my pain is not excruciating or immediate and I do have some unusual symptomsósoreness at bottom of feet that provokes symptoms and sensitivity of legs and feet. Itís more like too much walking and standing can make me feel really lousy. But, I obviously have enough going on that it has severely curtailed my functioning. I live in the city and walking is crucial and I can walk, but far from what I need or would like to do.

Also, it confuses me that I donít have a really bad back (though certainly I have degeneration) and makes everything grayer. However, I lean heavily towards surgery after waiting till the improvement I am currently feeling (possibly from removal of B6) plateaus.

Thanks for your insightful response. I follow a lot of the great deal of the info you provide on the listserv.

judyat60
10-09-2011, 09:25 AM
...'My pain is not really bad right now unless I overdo and at this point overdoing is easyÖ.'

so, does this sound a little contradictory, Lisa? ; )

We can certainly be tough on ourselves and unfortunately there is no black/white comparative cases. We've talked alot, and I think you are still doing the right thingÖtalking, questioning, and assessing. You will know when the time is 'right' when you find no other solution.
and I agree that this forum is da best! I love these people, whoever they are!
good luck again!
Judy

judyat60
10-09-2011, 09:27 AM
how do you get the quotes from a previous reply in the blue frame as so many of you do?

lisazena
10-09-2011, 09:38 AM
how do you get the quotes from a previous reply in the blue frame as so many of you do?

Hi Judy,
My guess is I will do surgery soon--probably by spring if not sooner. Since I'm a little better again I just have to try it out and see how far I can go and see what getting rid of the B6 can do. I know I am an obssesser.

To get the quotes just hit on the caption balloon on the right of the second row.

I am becoming more peaceful about it as I rant and rave in between.

So how did it work checking out your rib pain?

I continue to admire your inner calm and hope to follow in your footsteps when I make my decision. I'm getting closer as I believe I have chosen my surgeon.
Lisa

sarahcant
10-13-2011, 08:58 AM
Hi I cant tell you about the length of the fusion for you but for me it wasnt an option both curves were very bad and painful. NYU is a fantastic hospital the confusion is that only Langone does ortho surgeries not the main hospital. I used Dr. Errico and since he is the top guy there, and I also knew a few people that used him, he was a clear choice for me. I saw Dr. Lonner but felt that he lacked the experience (just my opinion). Im almost 7 months out and finally starting to be happy that I did this. Its not an easy choice, however at the end I didnt have a choice i could'nt walk, sit or work out anymore and Im only 49 so I feel like I had no choice. It was a pleasure to walk on the beach and take long rides in the car without wanting to shoot myself or anyone else. Its a loooong recovery just know and accept that and you'll be half way there. Good luck!

lisazena
10-13-2011, 09:25 AM
Hi Sarah,
Thanks for your helpful response.

I'm a little confused what you are saying about the hospital. Were you at NYUHJD? Actually it is Lonner that offers two choices depending on his schedule that day.

How is Errico with follow up? I waited in his office a long time and didn't get a lot of attention during my appointment. I do realize he is very experienced.

I am so glad your surgery worked out. That is my worry that I will have surgery and still have issues with walking/standing and experience the same or more muscle tightness and nerve issues.

What were your walking issues like?

Sorry for so many questions--I overanalyze, but I am trying to confirm in my mind that my symptoms come from the scoliosis. I can walk and initially just have some discomfort, which can be relieved by rest. But later in the day, the more I walk/stand the worse I feel. I've gotten some control of my pain through Lyrica, but haven't yet been able to successfully ramp up activity.

Thanks again for your thoughts.
Best.
Lisa

sarahcant
10-13-2011, 08:00 PM
woops just realized when I re-read my post my mistake. My surgery was at hospital for joint diseases. Thats where I was told they do the back surgeries. I agree that Errico can be a little quick, however as I got to know him he was a doll. I dont like the nurse practioner Acsoon she is tough to deal with a little overwhelmed I think but I ended up really liking Dr. Errico. I had the initial appointment just to screen him and then I went back with my husband and a list of questions which he answered very throughly. I went to several surgeons and felt the most comfortable with him. If you need more info go back and get it...we cant play around when it comes to this surgery we need answers and we deserve answers dont be shy! As far as walking do you mean before or after? Before walking was getting impossible. My lower curve was 80 degrees and my muscles were holding my spine up and the throbbing pain was unbearable. I also had nerve pain in both legs and hips it was torture. So for me it was a no brainer. Now my walking is fine...I still feel like Im wearing a sandbag on my back but Im told that goes away (or you get used to it) with time. If you want more info private message me and I will try and help. good luck-hope this helps!:)

titaniumed
10-13-2011, 09:09 PM
What do you think about the issue of bone grafts?



I think its up to the surgeon.

I think that digging on the hip for autograft can be problematic down the road, or at least my surgeon elected not to go that route. I had absolutly NO bone used. No allograft, no autograft.
BMP was used in bovine sponges, inserted into PEEK spacers or cages from the anterior from L1-Big toe.:-) It worked like a charm.
PEEK is a type of plastic and I have 2.5 inches of it in my back. I grew 4 inches.

Sorry Im so late with my response, I actually was on my hands and knees washing my kitchen floor! Yes, we do those things even after fusion...
Ed

Mojo's Mom
10-13-2011, 09:44 PM
Karen
Stephanie

Do you have stenosis or something on your MRI that explains your symptoms?

Yes. Stenosis and narrowing where the nerve passes through the vertebra on the left side at L4-L5. I had a CT myelogram to narrow this down.
KarenAre your symptoms also cumulative? Worse at night? And the more I do the worse I usually feel. I donít have pain at firstójust discomfort that can builds to pain later on. Cumulative? Oh, yeah! The farther I get in the day, the more I do, the worse it gets. I'm sore and stiff in the morning, but the nerve pain doesn't settle in until I start doing stuff. Standing and walking are the worst. I have tingling in the left foot, a burning, searing pain on the outside of the lower leg, pain down the outside of the left thigh, pain in the left butt, and pain on the left side of my lower lumbar spine/sacral area.

Most of my back feels pretty okay, by the way. But the leg pain, butt pain, feeling of being squished together, rib pain, ribs almost sitting on pelvis, all of that is plenty bad enough and limits me enormously. Your pain doesn't sound as dramatic as mine, but these things are purely subjective.

You'll know when you're ready.