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Emma Plum
10-16-2012, 10:46 AM
Hello, posters.

I came across this site when I was searching for info on knee replacement plus spinal fusion. Lo and behold, there was a thread from a couple of years ago, with a lot of useful information. In the last few days, I've explored various other threads. LOTS of useful information, even though in my case, I'm guessing my scoliosis is secondary to other spinal problems.

Never mind longstanding knee problems. Both my spine and knee problems seem to be coming to the "Do something NOW!" stage simultaneously. It's like the warranty ran out on my skeleton once I hit 65...

I have been "buying time" with both knees, with Euflexxa (or Synvisc) injections since 2005, and literally have got a lot of mileage from the shots. Even though both knees have had bone-on-bone spots for years, I keep moving, do my PT, take my Diclofenac, and things go along pretty well.

A generic "bad back" started over 20 years ago, but the chiropractor has been able to keep that in check. About 1995, a mild L5 spondylolisthesis was discovered during a hip x-ray. So, I've had to play by the rules to keep my back in check, but I got along pretty well. PT and a daily exercise routine also help.

2012 has been a bad year, though. I've had wicked trouble sitting--not a new thing, but I used to be able to sit long enough to enjoy a meal, drive to see relatives, sit through a church service, etc. (And type several paragraphs without taking twenty standing breaks!) That ended last January. The first thought was ischial tuberosity bursitis, and I had a hip X-ray to rule out other hip problems. Those X-rays showed lumbar scoliosis, so off the The Spine Institute. You don't need a blow-by-blow description of everything that intervened, but I had an MRI a week ago that showed--let's just call it a laundry list of problems, from T9 to S1. The L5 "spondi," as I see you folks call it, has progressed to Grade 3. Degenerative disc disease, stenosis, all that good stuff.

I have no clue how all this will play out. To complicate matters, I decided several months ago to move closer to relatives in the Boston area, preferably this spring. I'm in Burlington, VT now. No shortage of doctors--both spine and knee--in either place, I'm sure.

The plan now is a cortisone shot, to buy time, and probable spinal fusion.

Meanwhile, one question is, knee replacement or spinal fusion first? I understand I have to give up NSAIDS during the whole spinal healing process--not just the acute phase, when I'd be on other painkillers. I don't think my knees can take it. Plus, I know that walking is a key to fusion recovery. I can walk nearly a mile now, but that's with the NSAIDS.

OTOH, spinal fusion will change the geometry of my upper body, and it would be nice for that to happen before I get bionic knees.

Anyway, let me know if you have any thoughts. Many thanks.

tae_tap
10-16-2012, 11:15 AM
Welcome to the forum! You will find it helpful as well as inspirational. I know I have!

Tamena

jrnyc
10-16-2012, 02:56 PM
hi Emma
welcome to forum....many nice people on here, much info available...
many folks who have had surgery have a lot of helpful experience to
relate...as do folks who have not had surgery...yet...
i am of the latter group...

i have bad knees as well...fairly recent development of last couple of
years...medial meniscus tear in one, cyst in other, degeneration in both...
they tell me i should not have knee surgery, and offer me shots...i have turned down the shots thus far...gives me the creeps, though i used to get shots in spine all the time...
i have scoli, DDD, stenosis, listhesis, etc...
need surgery T11-sacrum....previous recommendation of T4-sacrum
upper curve of 42 degrees would be left alone...lower curve of now 70 degrees causes most pain, along with bad discs....
i finally found, after epidurals, facet blocks, and nerve ablation, and some other treatments didn't help me, that sacroiliac joint injections worked for me...but i was given too much steroid last January....causing my cortisol level to drop to near zero....and it took 6 months to come back up...thank goodness it came back...i cannot risk more steroid shots....

i would ask spine surgeon about what to do first...if one is fused to sacrum
they say knees are needed for bending, since bending from waist is no
longer possible, and only bending from hips can be done...carefully....
i wonder about it too...what to do about bending with bad knees once spine is fused....??!!

first thing i would do would be get a couple of opinions from top spine
surgeons...people speak highly of Dr Rand in Boston, amongst others...

best of luck finding answers....
jess...& Sparky

Emma Plum
10-16-2012, 04:05 PM
Thanks, Jess,

Just wrote a reply about the joys of Euflexxa, and--arrgh--I timed out, and my reply is floating around in cyberspace.

Anyway, I would heartily recommend the Euflexxa injections--at least to give them a try. I understand people either find they're fantastic, or useless--no in between. Apparently you have to have some residual cartilage to give the Euflexxa (or other, Hyalgan, etc.)something to work with. People who are bone-on-bone over the whole knee surface don't have luck. I think I have had more luck than most.

You might try it on your better knee first, and see if it works. The injections aren't as creepy as they seem, and they don't have the bad side effects of cortisone.

Sounds like our knees match. The Baker's Cyst, behind the knee, right? I try to think of it as my friend, that it is like an overflow catchment, when the fluid in your knee is too much. Mine waxes and wanes depending on how my knees are feeling. Puffed right up during the injections; down to almost nothing now, two weeks after the last injection.

Say, maybe I should join a knee forum? I am so much more comfortable with knee issues, as I've had them-wow, just did the math-over 50 years! When I have problems, I usually have a good handle on what's wrong, and I can advocate for myself. Plus I have an understanding relationship with the surgeon and the PA. So different from these back issues, where I really don't have a good idea of what the future holds. I don't even have a back surgeon at this point.

Thanks for the Dr. Rand recommendation. If a cortisone shot gives me some relief, I can actually sit to GET to Boston. I should make an appointment there, as well as apartment-shop.

You say, "if one is fused "to the sacrum" no bending from the waist. Are you referring to a long fusion that ends at S1, or any fusion that involves L5-S1? I'm wondering if a short fusion would take care of the worst problems, and leave me some flexible spine a little further up.

Thanks for all your input.

Marjorie (aka Emma Plum)

golfnut
10-16-2012, 07:31 PM
Welcome to the forum. I have also heard raving reviews about Dr. Rand. Irene hasn't been on the forum in a while, but she had successful surgery with him approximately two years ago. I think she is about the same age.

jrnyc
10-16-2012, 08:47 PM
hi Emma
i am sorry your knees have given you problems all these years...
mine are newly bothersome...the pain is mostly a deep ache...
and i think the medial meniscus tear, plus arthritis, is doing me in
more so than the cyst...not sure where the cyst is located...
i do know the arthritis causes bone on bone pain...

i would suggest you consider a top spine surgeon consult as well as
pain management doctor...Rand is a surgeon...sally..."loves to skate"...
had surgery with him...maybe you can write her....perhaps she knows of
good pain guys in Boston...she lived in MA but moved to NC a few years
ago....

long fusions, or fusions that involve lumbar, i believe do not allow for any
bending at waist....fusions of thoracic region do, i think...if they do not
go too low....you can read any of threads about lumbar fusions and see
what folks on forum say about bending....
i need fusion to sacrum, so i pretty much just read those posts....
i do know i would need to bend from my knees...or hips...after fusion
to sacrum....even L fusions, all lower lumbar i believe will require that...
but those who have had lumbar fusions could explain it far better...

jess...& Sparky

Emma Plum
10-16-2012, 10:01 PM
Welcome to the forum. I have also heard raving reviews about Dr. Rand. Irene hasn't been on the forum in a while, but she had successful surgery with him approximately two years ago. I think she is about the same age.

Many thanks, golfnut. I'll sort strands for "Irene." I'm hoping any fusion can happen in the Boston area, but I have to get there first.

Marjorie (Aunt M)

titaniumed
10-17-2012, 09:42 PM
Hi Auntie Em,

Thatís a tough call on which to do first.....maybe the knee since it will heal faster...Hmmm????

Im no stranger to Vermont being an old east coast skier. Used to ski Stowe as a kid...of course the Shelburne museum is a really neat place.

I think Irene is doing well....If she doesnít respond soon I will send her an e-mail.

Welcome to the forum
Ed

loves to skate
10-18-2012, 12:04 PM
Hi Emma,
I had lumbar spinal fusion with Dr. Rand at the New England Baptist almost five years ago. Dr. Rand is very kind and thorough and basically gave me my life back. There are three adult scoliosis Doc's in Boston. I got this off of the SRS website for you.

Paul A. Glazer, MD
Beth Israel Deaconess Medical Center
330 Brookline Avenue, CC 2nd Floor
Boston, MA 02215
Phone: (617) 667-2225
Fax: (617) 667-2233
Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions

Frank F. Rand, III, MD
New England Baptist Hospital
125 Parker Hill Avenue, Converse 5
Boston, MA 02120
Phone: (617) 754-5744
Fax: (617) 754-5740
Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions

Kirkham B. Wood, MD
Massachusetts General Hospital
Yawkey Bldg., Suite 3800
55 Fruit Street
Boston, MA 02114
Phone: (617) 724-8636
Fax: (617) 726-7587
Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions

It would be best if you would consult with one or all of these Doctors, rather than other spine Doctors not familiar with the problems of Scoliosis.

I hear you about the warranty running out on your body. My knees and hip are wearing out now, so I didn't have that issue to deal with when I had my back surgery. They are not going to get better on there own, so don't wait until it is too late. I would think that getting your spine done first and then the knees would be best, but I would ask the Doctor about it. I see that you have concerns about the NASADS. You definitely won't need them while on the other stronger meds. I can no longer take any NASAIDS because they were doing damage to my kidneys. The first week I was off of them, I was in a great deal of pain, but after that even though I had some pain, it was no where near as bad as I was expecting. By the way, I can only walk about a mile also. Sometimes I take a Tramadol as needed. So you can see that there are other options when you can't take NASAIDS.

Did the question about bending after a lumbar fusion come up? You will be able to bend from the hips and grabbers are a good thing to keep around the house. An occupational therapist will teach you how to do many things differently. If you have other questions you would like to ask me, you may PM me.

Sally

backissues
10-18-2012, 10:35 PM
Welcome to the Forum.

I would be glad to speak with you about my experience with Dr. Rand. As Sally (Loves to Skate) explained, Dr. Rand gave her and me our lives back. I recommend him highly. I am almost 2 years post-op and can walk and stand as much as I have energy for. I can bike, kayak, sail, and hike, something I haven't done ever in my life. I look forward to cross-country skiing or snowshoeing this winter. My cane-seat, which was a constant companion for my years, has been in the closet since 12/7/2010. It isn't an easy recovery but well worth it.

Unlike you, I did not have the knee issues so I was taking care of one main issue.

Bending is something you get used to because, if you don't use a grabber, you need to get down on one or both knees. But, it can be done. Other people may have found other ways to get down on the floor to pick up something.

You really can't tell how far up or down the surgery will go until you get evaluated because the surgeon has to get to a place of stability. They can't just fix the place that is at issue or, at some point, it may collapse.

If you want to contact me, please send me a private message and we can set up a time to talk.

Good luck!!

Irene

susancook
10-19-2012, 04:08 AM
Welcome! Love to see more of us "more finely aged" women on the forum. I am 66 and have not had surgery, but think that it is probably inevitable. I have has cortisone injections and denervation trying to delay the probable inevitable fusion, in my case from T3-sacrum...Ugggg.

I get great relief from all of the non-surgical interventions. See my blogs.

Like you, or as it appears from what you have said, we both probably have "adult degenertive scoliosis". I see a spine MD in Portland, OR [not anywhere near you] that specializes only in adult spinal surgery and of the 200 cases that he does each year, half are scoliosis.

Sally is an awesome source of encouragement and knowledge.

Wishing you the best,
Susan

PS: This is not an opinion that is based on any knowledge, just food for thought. Maybe consider getting the knee problem out of the way first. Getting up and about is SO important postop scoliosis surgery and if you can't move well with your knee, I'm thinking that would increases your rehab issues w/ you back postop. Just my 2 cents worth.

Emma Plum
10-19-2012, 08:29 AM
Many thanks to all who posted this last day or two. I've read everything, but will get back later. I'm "between" family visits now. Yesterday, cousins from Seattle, whom I hadn't seen in 9 years--wonderful, but short visit! Tomorrow, my niece will be up for to help me do some clearing and sorting in the house, as I need to downsize before I make any Boston-area move. Today, I need to "declutter," before my niece arrives.

Got an appointment at the Burlington-area "Spine Institute" on Nov. 14th. That's more for evaluation; I'm guessing they will then refer to a surgeon.

Also, an appointment with the knee surgeon on Nov. 19.

All for now, Aunt M.

susancook
10-20-2012, 03:31 AM
Many thanks to all who posted this last day or two. I've read everything, but will get back later. I'm "between" family visits now. Yesterday, cousins from Seattle, whom I hadn't seen in 9 years--wonderful, but short visit! Tomorrow, my niece will be up for to help me do some clearing and sorting in the house, as I need to downsize before I make any Boston-area move. Today, I need to "declutter," before my niece arrives.

Got an appointment at the Burlington-area "Spine Institute" on Nov. 14th. That's more for evaluation; I'm guessing they will then refer to a surgeon.

Also, an appointment with the knee surgeon on Nov. 19.

All for now, Aunt M.

I do not know anything about the Burlington-area Spine Institute, but do your homework before you go. Look up the surgeons and see who is an SRS surgeon. Don't let them just give you anybody....make a pro-active choice.

Enjoy your vacation! Susan

Emma Plum
11-04-2012, 05:28 PM
Thanks for the advice about Irene. She's pm'd me. I've seen Dr. Rand's name recommended, with high praise.

Aunt M.

Emma Plum
11-04-2012, 06:04 PM
Hi, Jess,

Thanks for the advice re choice of a surgeon, and also someone for pain management. I've heard from Sally--"loves to skate"--esp. about Dr. Rand.

My knees have surprised me a bit. I was dreading going off anti-inflammatories, prior to what I think will be an epidural cortisone shot tomorrow. Cross fingers, my knees are behaving; the Euflexxa injections seem to have kicked in. Also, I'm able to walk nearly a mile nearly every day, and all that keeps my knees from going into a downward spiral.

I hope your knees will start to behave. Are you considering surgery to take care of the meniscus tear? They say arthroscopic meniscus repair doesn't do much for patients with significant arthritis, but I beg to differ.

So far, I'm a bit discouraged by the pain management end of things. A TENS unit; didn't work, though at that point no one had identified my spine as being the right place to put it. Also Gabapentin, which made me loopy and non-functional. I'd consider it if I had a staff of servants taking care of my every need :)

Thanks for the input, Aunt M.

Emma Plum
11-04-2012, 06:18 PM
Thanks for checking in, Ed. You will laugh, I kept reading your name as "titaniumed", as in the past tense of the verb "to titanium." You know, "I titaniumed my rear bumper last weekend, and think I got that rust problem solved."

I see the knee surgeon Nov. 19 for a Euflexxa injection follow-up. We'll see what he says, about which should come first. His last opinion was that if I follow the rules, I might indefinitely postpone replacement, but the spine issue may change that equation.

I seldom skied Stowe, but I spent a lot of my college days at Madonna, as we used to call it. Smuggler's Notch now, which was it's original name. No skiing now. I've taken enough chances that way!

I've had a pm from Irene--very helpful.

Thanks for you always-upbeat attitude, Aunt M.

Emma Plum
11-04-2012, 06:37 PM
Hi, Sally,

Many thanks for your long and useful post; especially the three doctors in the Boston area.I heartily agree that I want to consult with someone whose specialty involves ALL the things that are going on in my spine. I don't have a good handle on how familiar the local surgeons are with scoliosis and potentially long fusions, but I do know that of four local people I know who've had fusions, only one had it done in this area. Same reasoning for being in a hospital that does this sort of surgery all the time. (For example PT's who know they have to teach you how to put on your socks.)

Re NSAIDS, we'll see. Again, a reason to be with a team who do this all the time. With the pain meds following back surgery, I presume there is a time when you can't drive a car and take the meds. Obviously, there's a period--I don't know how long--where driving a car is out of the question. What I need to find out is, how long do you have to stay away from NSAIDS? I gather the bone-healing process goes on for 6-12 months, and I would hope--since I live alone--that I can drive before that.

I've tried Tramadol--not really enthusiastic about it. My suspicion is that if I take enough pain meds to get the relief of the NSAID Diclofenac, I would be taking to much to be safe on the road. Ah, all to be determined once I actually see a spine surgeon, and that's not even scheduled yet.

Again, Thanks, Aunt M.

Emma Plum
11-04-2012, 06:39 PM
Many thanks, Irene. I got your pm, and today's email. Will get back to you! Aunt M.

Emma Plum
11-04-2012, 06:59 PM
Hi Susan,

Thanks for your feedback. I'm not sure where to find your blogs. Through this forum?

I've been doing PT for years, and I think it's helped postpone, and maybe even disguise the degree of degeneration. BTW, what is "denervation?"

Re my knees, I'm in a different place than I was even two weeks ago. The Euflexxa injections seem to have kicked in, and even though I'm off NSAIDS prior to a cortisone injection tomorrow, my knees are as happy as they ever get :) But if I had the spine done first, I'd hate to have my knees come to a crisis when it would be difficult to deal with it.

I joke that the Dr. who first told me I'd need knee replacements died of old age in 1990. My impression is that a lot of effort is going into treatments that avoid knee replacements, especially as we early boomers are getting to "that age."

I hear your warnings about the local Spine Institute. I'm not even sure that they do surgery--they may just refer you to a surgeon. My own gut feeling is that Burlington is great for many things, but I'm not really sure they've chosen to specialize in spine surgery.

Thanks for all your feedback, and all the best as you work through this process yourself. BTW, where is Yacolt, WA? My Dad's family is from the Seattle area--just had a visit from those cousins a couple of weeks ago.

Aunt M., who thinks she has finally caught up on everyone's kind and supportive posts.

Wish2bstraight
11-04-2012, 07:18 PM
Hi,

I have been seeing Dr. Glaser. I am planning to have surgery in January. My surgery will before t7 to sacrum. I also have a fracture in L5. I don't remember who gave you the three scoliosis doctors in Boston, but I will confirm that there only three adult scoliosis doctors in Boston. Send me a PM where you are planning to move to. I'm trying to get a support group together, hopefully you will be able to join us.

jrnyc
11-04-2012, 08:42 PM
hi Emma
the doctors tell me they would not do knee repair on my meniscus knee...
not sure why...i saw only one knee surgeon...
my right knee has been feeling worse...i cannot remember which knee
has what...but when i see pain doc end of November i may ask for a
new X ray of right knee...

i went to pain docs for injections and for pain meds...
as i mentioned before, the only injection that ever helped me was sacroiliac joint shots...
epidural injections did nothing for me...neither did facet blocks, nerve
ablation, trigger point shots, or any other ones i tried...
and Tens Unit...to me was a waste of my time...

i hope you find something that relieves your pain....
jess...& Sparky

Emma Plum
11-04-2012, 10:15 PM
Thanks, Jess,

First, I have to know--tell me about Sparky. A pet, I presume. I never kept a pet alive long. A succession of turtles and escaping mice, and guppies who liked swimming upside-down.

I don't think x-rays tell you much about cartilage damage. I'd ask the knee doc, "Why not?" address the torn meniscus. I did twice, and the answer, twice, was YES! Gradual relief back in 1998; near immediate relief on the other knee in 2008. Mid-term recovery from the surgery takes about 24 hours to a week. I really had to lobby to get the second knee scoped, as opposed to a total replacement. The relevant damage did turn up on an MRI, not an x-ray. The MRI showed that there was a local and fixable problem. My pain level was reduced considerably, and more importantly, I was able to go back to near-daily walking.

From what you say, it's easy to mistake a spinal-related problem at Point A for a similar problem at Point B, maybe a centimeter away. I'm wondering about the SI joint, but I don't know. I'm hoping that the doc tomorrow will try to direct treatment to the right place, and will be willing to do a second shot elsewhere if tomorrow's shot doesn't work.

Aunt M.

jrnyc
11-05-2012, 02:45 PM
hi Emma
good luck with the injections tomorrow...hope it helps with the pain...

thanks for the advice about knees...i do want to see another surgeon
to get another opinion....pain doc wants to do some kind of hydralaunic (splg?) acid shots in my knees...sounds scary to me...
i have had tons of needles in my spine...but shots in my knees scare me, for some reason....

yes, Sparky is my angel puppy....Maltese little boy, all ten pounds of him...
he is my best therapy, and makes me laugh everyday...
i am not good at posting photobucket...but i can send you my e mail
address if you wanted some pix to make you smile...

hope you feel better...
jess...& Sparky