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Hello Tami,

Welcome to the group. It sounds like you had the same overwhelming

experience of thinking you wouldn't be dealing with this back

business at this stage of your life. It stinks doesn't it?

You didn't say in your post, and I am not sure how you found

us...but have you been diagnosed with flatback, or are you

suspecting that your sagittal balance is off? That would be one

question for Dr Keenen.

No one here is a doctor, and everyone is different, but depending on

how you are aligned now I believe it is possible that at least some

of your symptoms could be related to your fused posture and the

strain and stresses that places on everything above and below the

fusion. I know of a patient who has a hook in her thoracic area that

is irritating the muscles in between her shoulder blades and

produces neck pain depending on what she is doing. Her surgeon says

the choice is to remove the rod or continue with with steroid

injections from time to time when it really flares up. So far she is

taking the less invasive approach.

As to the neuropathic pain in your leg....well...I would want to

know why the neurosurgeon doesn't think it's related to your fusion,

which, I guess, implies that he thinks something else is up? I am

under the impression that sciatic type pain tends to be related to

something compressing the nerve roots in the lumbar area...could be

discs, bone, scar tissue, implants, stenosis, tumors...

The fact that you got 15 years after your last fusion, I am assuming

pain free, means something has changed. You are right to follow up.

I have never heard of Dr Keenen, but that doesn't mean he is not a

great doctor to see. I just always recommend a 2nd opinion,

expecially if the problem is not solved or the doctor is

recommending surgery. I guess in your case I would think you might

want to consider a trip down to UCSF...Dr Hu is probably most

consulted here, but might have another suggestion or two for

an opinions in Oregon (or her hometown of SanFran!).

At least it sounds like you had a fairly complete neurological

workup, but perhaps not by someone who sees alot of folks fused to

S1. I would get ahold of copies of all the records/reports and films

created from that visit (and then when you see Dr Keenen) and start

my own file. You are entitiled to them. (The written reports the

neuro and radiologist wrote will give you an excellent document to

form your questions off of when you see Dr Keenen, so do it right

away!). It is amazing what you learn when you read them, and

sometimes you will have forgotten what the docotor said, or you may

not even have been told all the information in the report. You have

had most of the initial tests now so other than travel/office visit

it shouldn't be too expensive to secure another opinion.

I hope we get to know you better and look forward to hearing how

things go with DrKennen.

Take Care, Cam

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Hi Cam, thanks for taking the time to read all that and respond.

From what I've read on here, you are a very caring person and I

appreciate having someplace to go where people understand what I'm

going through.

I found you by doing Google searches for any info I could find

regarding scoliosis. I had never even heard of flatback before I

started this search. I have not been diagnosed with flatback. I

very much hope that's not the case but I have been leaning forward a

little bit for years (so my friends and family now tell me) and it's

getting worse. I just recently realized that when I look at myself

in the mirror, I automatically bend my knees and flex my hips to

stand up straight!!

The neuroseurgeon said I did have stenosis which was probably causing

my sciatic pain but they could not get a clear picture because of

signal rob from my pedicle screws. He actually suggested surgery to

go in and see what the problem was. No thanks.

I took all my records from the neurosurgeon last time I saw him (on

Tuesday) because I knew I was going to see Dr. Keenan on the 25th and

he wanted them. I'm just going to wait and see what he says and

then, if he confirms flat back or wants to do surgery, I will

definitely try to go see Dr. Hu or someone else who has worked alot

with flatback/revision surgeries. Thank God for this site or I would

not have known anything about any of this. I wish I would have had

this opportunity back in 1987/88 before I had my last surgery. At

least the Harrington Rod is already out and I won't have to worry

whether they will be able to remove that or not.

Again, thanks for what you do here and I'm sure I'll be visiting

quite frequently at least until this is resolved or I am able to help

others.

Tami

>

> Hello Tami,

>

> Welcome to the group. It sounds like you had the same overwhelming

> experience of thinking you wouldn't be dealing with this back

> business at this stage of your life. It stinks doesn't it?

>

> You didn't say in your post, and I am not sure how you found

> us...but have you been diagnosed with flatback, or are you

> suspecting that your sagittal balance is off? That would be one

> question for Dr Keenen.

>

> No one here is a doctor, and everyone is different, but depending

on

> how you are aligned now I believe it is possible that at least some

> of your symptoms could be related to your fused posture and the

> strain and stresses that places on everything above and below the

> fusion. I know of a patient who has a hook in her thoracic area

that

> is irritating the muscles in between her shoulder blades and

> produces neck pain depending on what she is doing. Her surgeon says

> the choice is to remove the rod or continue with with steroid

> injections from time to time when it really flares up. So far she

is

> taking the less invasive approach.

>

> As to the neuropathic pain in your leg....well...I would want to

> know why the neurosurgeon doesn't think it's related to your

fusion,

> which, I guess, implies that he thinks something else is up? I am

> under the impression that sciatic type pain tends to be related to

> something compressing the nerve roots in the lumbar area...could be

> discs, bone, scar tissue, implants, stenosis, tumors...

>

> The fact that you got 15 years after your last fusion, I am

assuming

> pain free, means something has changed. You are right to follow up.

> I have never heard of Dr Keenen, but that doesn't mean he is not a

> great doctor to see. I just always recommend a 2nd opinion,

> expecially if the problem is not solved or the doctor is

> recommending surgery. I guess in your case I would think you might

> want to consider a trip down to UCSF...Dr Hu is probably most

> consulted here, but might have another suggestion or two for

> an opinions in Oregon (or her hometown of SanFran!).

>

> At least it sounds like you had a fairly complete neurological

> workup, but perhaps not by someone who sees alot of folks fused to

> S1. I would get ahold of copies of all the records/reports and

films

> created from that visit (and then when you see Dr Keenen) and start

> my own file. You are entitiled to them. (The written reports the

> neuro and radiologist wrote will give you an excellent document to

> form your questions off of when you see Dr Keenen, so do it right

> away!). It is amazing what you learn when you read them, and

> sometimes you will have forgotten what the docotor said, or you may

> not even have been told all the information in the report. You have

> had most of the initial tests now so other than travel/office visit

> it shouldn't be too expensive to secure another opinion.

>

> I hope we get to know you better and look forward to hearing how

> things go with DrKennen.

>

> Take Care, Cam

>

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Dear Tami,

Welcome to the group! I'm sorry you are going through so much right now! We haven't had a lot of people chime in from Oregon, but maybe will know of a doc in the Portland area. We moved out here to the Denver Area from Ashland, OR about seven years ago, and miss Oregon something awful. I try to get back for a visit once a year, it's just about the prettiest place on earth!

Sounds like your doc ran about every test needed, and I'm not surprised that the neurologist said what he did, many of us have gone to a number of doc's before we got to one who understands our very fused spines. On the West coast many of our members end up consulting Dr. Hu at UCSF, she has a lot of experience with our troubles. Since you haven't yet been diagnosised with Flatback, it will be interesting to see what Dr. Keenen has to say. On the site there is a list of questions to ask a prospective doc, a good place to start. The site has a lot of good info, so sometime when you have some time go in and read. Did the doc who did your last revision think that you might have stenosis? After you get to see Dr. Keenen and maybe have more answers, it would be good to consult another couple of doc's for consultations. Be sure and ask how many surgeries of this type he's done, and if he doesn't seem confident, or you don't feel comfortable move on. Unfortunately doc's who do this type of surgery often aren't always local, but in each region of the US there are a few, the East Coast having more than West. So many of the group members had to travel. I was lucky to have a great doc local in Denver, but thats not true for many who live more rural, or are in a state without major medical centers. I saw two doc's in the Medford area when we were in Oregon, and they didn't have clue what was going on with me.

So once again welcome, ask away, all of us while not doc's have been through this. It's good to be among friends when going through a major medical problem, someone who GETS it, and to have a soft place to land when it gets hard. Keep us up to date on how it goes with Dr. Keenen, curious what he has to say!

Colorado Springs

[ ] New from Oregon

Hello all. Is there anybody else here from the NW? I have been reading as many posts as I can in the last few weeks because of increasing pain. I have an appt. with Dr. Keenen on Oct. 25th which I have been waiting for since early September. My GP, in the meantime, insisted I see a neurologist he could get me into quickly because he was soconcerned after seeing my x-rays he had ordered. He knew I had my spine fused but had never actually seen the x-rays. Well, I had my last appt. with the neurologist today who, after CT scan, CT myelogram, MRI,flexion and extension x-rays (pretty much a joke since I'm fused from T-7 to S-1),says he doesn't think my pain (between shoulder blades, neck, lower back, hips and sciatic down left leg has anything to do with my scoliosis!! I'm pretty sure my GP wanted to pass the responsibility on to someone else as quickly as possible and didn't want me waiting for my appt. with Dr. Keenen. What I was wondering is if anyone has ever heard of Dr. Keenen or any other Dr.s here in the NW that have done revision surgeries. Dr. Keenen is with the American Academy of Orthopaedic Surgeons, North American Spine Socity and Scoliosis Research Society. I had my surgery at the age of 15 at Shriner's Hospital here in Portland, Oregon in 1977. I had 1 Harringon rod to correct a 45 degree lumbar curve from T-7 to the base of L-4. In 1988 I had extreme sciatic pain on the left and without even thinking about further researching it allowed a surgeon (who I cannot find now) to remove the Harrington Rod, continue fusion to S1 and put in pedicle screws. Well, all has been good until the last 12 to 18 months so I guess I can't complain. If anybody has any advise regarding surgeons, questions to ask at my appt., etc.. I would very much appreciate it. I'm sure I'll be here quite frequently from now on.Sorry this post is so long. Thank you in advance to anyone who has read this far.Tami

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Hi Tami,

I hope you are able to get some answers from DrKeenan...sounds like

you are on the right track now. I am glad you walked away from

the " exploratory surgery " option!

As to the forward lean...for me it kind of snuck up on me...I didn't

really realize I was doing it, or that it was obvious, until a

friend kind of put her hands on my chest and back and tried to stand

me up...I guess she thought I was slouching or something.

Anyway...it was just a slow and gradual tipping over.

I would say you shouldn't regret what happened in '87/88...it

doesn't seem that most surgeons were really aware that flatback was

going to be an issue in the future, and for the most part they were

still installing HR's with abandon. But yes, the internet surely has

opened up the possibility that patients can be more informed about

their health and their conditions.

Good luck in your search...please feel free to ask any other

quesitons as you prepare for your visit.

Take Care, Cam

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Unfortunately, I’ve never heard from anyone from Oregon who had revision surgery there. :-(

--

On 10/18/06 1:14 PM, " Kirkaldie " <.Kirkaldie@...> wrote:

Dear Tami,

Welcome to the group! I'm sorry you are going through so much right now! We haven't had a lot of people chime in from Oregon, but maybe will know of a doc in the Portland area.

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Hi Cam, sorry it takes me so long to respond but I'v been very busy

at work and am in the process of setting up a new computer at home

which I am very excited about.

I am very anxious to hear what Dr. Keenen has to say about my back

and whether he knows about flat back and whether he thinks that is my

problem. I don't know what else it could be though.

I did do some research on Dr. LaGrone and discovered that he was

right up in Seattle until 1994/95!! I really wish he was stil up

there since that's alot closer to me in Portland than Amarillo!!

After I hear what Dr. Keenen says I may make plans for a 2 stop

trip. One stop in San Francisco to see Dr. Hu and one to Amarillo to

see Dr. Lagrone. Any thoughts on this?

Thanks again.

Tami

>

> Hi Tami,

>

> I hope you are able to get some answers from DrKeenan...sounds like

> you are on the right track now. I am glad you walked away from

> the " exploratory surgery " option!

>

> As to the forward lean...for me it kind of snuck up on me...I

didn't

> really realize I was doing it, or that it was obvious, until a

> friend kind of put her hands on my chest and back and tried to

stand

> me up...I guess she thought I was slouching or something.

> Anyway...it was just a slow and gradual tipping over.

>

> I would say you shouldn't regret what happened in '87/88...it

> doesn't seem that most surgeons were really aware that flatback was

> going to be an issue in the future, and for the most part they were

> still installing HR's with abandon. But yes, the internet surely

has

> opened up the possibility that patients can be more informed about

> their health and their conditions.

>

> Good luck in your search...please feel free to ask any other

> quesitons as you prepare for your visit.

>

> Take Care, Cam

>

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Hi , nice to meet you :). Thanks for the reply. It really does

make a difference having others to talk to who get it.

I wonder why there aren't any from Oregon. I doubt I really am all

alone in this state with this problem but who knows.

I am still in the process of reading all the posts on this site so

I'm not really sure what your status is. Have you had revision or

still researching?

Tami

>

> Dear Tami,

>

> Welcome to the group! I'm sorry you are going through so much right

now! We haven't had a lot of people chime in from Oregon, but maybe

will know of a doc in the Portland area. We moved out here to

the Denver Area from Ashland, OR about seven years ago, and miss

Oregon something awful. I try to get back for a visit once a year,

it's just about the prettiest place on earth!

>

> Sounds like your doc ran about every test needed, and I'm not

surprised that the neurologist said what he did, many of us have gone

to a number of doc's before we got to one who understands our very

fused spines. On the West coast many of our members end up consulting

Dr. Hu at UCSF, she has a lot of experience with our troubles. Since

you haven't yet been diagnosised with Flatback, it will be

interesting to see what Dr. Keenen has to say. On the site there is a

list of questions to ask a prospective doc, a good place to start.

The site has a lot of good info, so sometime when you have some time

go in and read. Did the doc who did your last revision think that you

might have stenosis? After you get to see Dr. Keenen and maybe have

more answers, it would be good to consult another couple of doc's for

consultations. Be sure and ask how many surgeries of this type he's

done, and if he doesn't seem confident, or you don't feel comfortable

move on. Unfortunately doc's who do this type of surgery often aren't

always local, but in each region of the US there are a few, the East

Coast having more than West. So many of the group members had to

travel. I was lucky to have a great doc local in Denver, but thats

not true for many who live more rural, or are in a state without

major medical centers. I saw two doc's in the Medford area when we

were in Oregon, and they didn't have clue what was going on with me.

>

> So once again welcome, ask away, all of us while not doc's have

been through this. It's good to be among friends when going through a

major medical problem, someone who GETS it, and to have a soft place

to land when it gets hard. Keep us up to date on how it goes with Dr.

Keenen, curious what he has to say!

>

>

> Colorado Springs

> [ ] New from Oregon

>

>

> Hello all. Is there anybody else here from the NW? I have been

> reading as many posts as I can in the last few weeks because of

> increasing pain. I have an appt. with Dr. Keenen on Oct.

> 25th which I have been waiting for since early September. My GP,

in

> the meantime, insisted I see a neurologist he could get me into

> quickly because he was so

> concerned after seeing my x-rays he had ordered. He knew I had my

> spine fused but had never actually seen the x-rays. Well, I had

my

> last appt. with the neurologist today who, after CT scan, CT

> myelogram, MRI,flexion and extension x-rays (pretty much a joke

since

> I'm fused from T-7 to S-1),says he doesn't think my pain (between

> shoulder blades, neck, lower back, hips and sciatic down left leg

has

> anything to do with my scoliosis!! I'm pretty sure my GP wanted

to

> pass the responsibility on to someone else as quickly as possible

and

> didn't want me waiting for my appt. with Dr. Keenen. What I was

> wondering is if anyone has ever heard of Dr. Keenen or any other

Dr.s

> here in the NW that have done revision surgeries. Dr. Keenen is

> with the American Academy of Orthopaedic Surgeons, North American

> Spine Socity and Scoliosis Research Society.

>

> I had my surgery at the age of 15 at Shriner's Hospital here in

> Portland, Oregon in 1977. I had 1 Harringon rod to correct a 45

> degree lumbar curve from T-7 to the base of L-4. In 1988 I had

> extreme sciatic pain on the left and without even thinking about

> further researching it allowed a surgeon (who I cannot find now)

to

> remove the Harrington Rod, continue fusion to S1 and put in

pedicle

> screws. Well, all has been good until the last 12 to 18 months so

I

> guess I can't complain.

>

> If anybody has any advise regarding surgeons, questions to ask at

my

> appt., etc.. I would very much appreciate it. I'm sure I'll be

here

> quite frequently from now on.

>

> Sorry this post is so long. Thank you in advance to anyone who

has

> read this far.

>

> Tami

>

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Hi , so nice to meet you. Where are you located? Have you had

revision surgery? I still have alot of reading to do on this site to

get caught up with all of you and it's hard to find the time

sometimes but I will eventually.

Tami

>

> > Dear Tami,

> >

> > Welcome to the group! I'm sorry you are going through so much

right now! We

> > haven't had a lot of people chime in from Oregon, but maybe

will know of

> > a doc in the Portland area.

>

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Hi Tami...

I’m in San Francisco. I have not had revision surgery.

Nice to meet you as well. Welcome.

--

On 10/19/06 5:11 PM, " tlsun2462 " <tamisun@...> wrote:

Hi , so nice to meet you. Where are you located? Have you had

revision surgery? I still have alot of reading to do on this site to

get caught up with all of you and it's hard to find the time

sometimes but I will eventually.

Tami

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Dear Tami,

Yes, Ive been revised more than once. I had a decompression surgery in 2000 where my surgeon removed my Harrington Rod and did a decompression at L-3, L-4 and L-5. In January of 2002 I had a revision where they fused me to the sacrum, anterior and posterior, with new rods, screws and bolts. Did very well for about six months till I cracked my Harrington Rod fusion mass above where my revision was, so in December of that year they took me back in for a total reworking of my spine. I had all the previous revision hardware removed, they fused up to T-1( previously to T-5) did an osteotomy at L-3 and put in all new Hardware, Stainless steel replacing the Titanium. So despite having a very fused spine, I'm doing very well, painfree and functioning well. Was a long row to hoe for me, but I'm glad I had the surgeries, gave me back the ability to live a full painfree life. I'm almost four years out from my last revision, and I'm thankful to Dr. Kumar for helping me me get the function back in my life.

Off to go watch E.R., hope this helped, good to get to know you too!

[ ] New from Oregon> > > Hello all. Is there anybody else here from the NW? I have been > reading as many posts as I can in the last few weeks because of > increasing pain. I have an appt. with Dr. Keenen on Oct. > 25th which I have been waiting for since early September. My GP, in > the meantime, insisted I see a neurologist he could get me into > quickly because he was so> concerned after seeing my x-rays he had ordered. He knew I had my > spine fused but had never actually seen the x-rays. Well, I had my > last appt. with the neurologist today who, after CT scan, CT > myelogram, MRI,flexion and extension x-rays (pretty much a joke since > I'm fused from T-7 to S-1),says he doesn't think my pain (between > shoulder blades, neck, lower back, hips and sciatic down left leg has > anything to do with my scoliosis!! I'm pretty sure my GP wanted to > pass the responsibility on to someone else as quickly as possible and > didn't want me waiting for my appt. with Dr. Keenen. What I was > wondering is if anyone has ever heard of Dr. Keenen or any other Dr.s > here in the NW that have done revision surgeries. Dr. Keenen is > with the American Academy of Orthopaedic Surgeons, North American > Spine Socity and Scoliosis Research Society. > > I had my surgery at the age of 15 at Shriner's Hospital here in > Portland, Oregon in 1977. I had 1 Harringon rod to correct a 45 > degree lumbar curve from T-7 to the base of L-4. In 1988 I had > extreme sciatic pain on the left and without even thinking about > further researching it allowed a surgeon (who I cannot find now) to > remove the Harrington Rod, continue fusion to S1 and put in pedicle > screws. Well, all has been good until the last 12 to 18 months so I > guess I can't complain. > > If anybody has any advise regarding surgeons, questions to ask at my > appt., etc.. I would very much appreciate it. I'm sure I'll be here > quite frequently from now on.> > Sorry this post is so long. Thank you in advance to anyone who has > read this far.> > Tami>

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Wow, , I just read your story in the files. You have been

through alot. I am so glad things are finally better for you now.

Where is Dr. Kumar located? Even though I have not yet been

diagnosed with flatback I am already preparing for 2nd and 3rd

opinions because I am pretty sure that's where I'm heading. My appt.

with Dr. Keenen is next week and I am both relieved to finally be

seing a spine specialist who works with adult scoliosis and scared to

hear what he might have to say. My back is not as bad as alot of the

stories I've read about on here so I consider myself lucky. Because

of all the information I have found on this site and others I can

probably get it figured out before it becomes completely

debilitating. I figure it's better to do something about it early on

instead of waiting for more nerve, muscle and joint damage.

Thank you for sharing your story with the rest of us.

Tami

> >

> > Dear Tami,

> >

> > Welcome to the group! I'm sorry you are going through so much

right

> now! We haven't had a lot of people chime in from Oregon, but

maybe

> will know of a doc in the Portland area. We moved out here

to

> the Denver Area from Ashland, OR about seven years ago, and miss

> Oregon something awful. I try to get back for a visit once a

year,

> it's just about the prettiest place on earth!

> >

> > Sounds like your doc ran about every test needed, and I'm not

> surprised that the neurologist said what he did, many of us have

gone

> to a number of doc's before we got to one who understands our

very

> fused spines. On the West coast many of our members end up

consulting

> Dr. Hu at UCSF, she has a lot of experience with our troubles.

Since

> you haven't yet been diagnosised with Flatback, it will be

> interesting to see what Dr. Keenen has to say. On the site there

is a

> list of questions to ask a prospective doc, a good place to

start.

> The site has a lot of good info, so sometime when you have some

time

> go in and read. Did the doc who did your last revision think that

you

> might have stenosis? After you get to see Dr. Keenen and maybe

have

> more answers, it would be good to consult another couple of doc's

for

> consultations. Be sure and ask how many surgeries of this type

he's

> done, and if he doesn't seem confident, or you don't feel

comfortable

> move on. Unfortunately doc's who do this type of surgery often

aren't

> always local, but in each region of the US there are a few, the

East

> Coast having more than West. So many of the group members had to

> travel. I was lucky to have a great doc local in Denver, but

thats

> not true for many who live more rural, or are in a state without

> major medical centers. I saw two doc's in the Medford area when

we

> were in Oregon, and they didn't have clue what was going on with

me.

> >

> > So once again welcome, ask away, all of us while not doc's have

> been through this. It's good to be among friends when going

through a

> major medical problem, someone who GETS it, and to have a soft

place

> to land when it gets hard. Keep us up to date on how it goes with

Dr.

> Keenen, curious what he has to say!

> >

> >

> > Colorado Springs

> > [ ] New from Oregon

> >

> >

> > Hello all. Is there anybody else here from the NW? I have been

> > reading as many posts as I can in the last few weeks because of

> > increasing pain. I have an appt. with Dr. Keenen on

Oct.

> > 25th which I have been waiting for since early September. My

GP,

> in

> > the meantime, insisted I see a neurologist he could get me into

> > quickly because he was so

> > concerned after seeing my x-rays he had ordered. He knew I had

my

> > spine fused but had never actually seen the x-rays. Well, I had

> my

> > last appt. with the neurologist today who, after CT scan, CT

> > myelogram, MRI,flexion and extension x-rays (pretty much a joke

> since

> > I'm fused from T-7 to S-1),says he doesn't think my pain

(between

> > shoulder blades, neck, lower back, hips and sciatic down left

leg

> has

> > anything to do with my scoliosis!! I'm pretty sure my GP wanted

> to

> > pass the responsibility on to someone else as quickly as

possible

> and

> > didn't want me waiting for my appt. with Dr. Keenen. What I was

> > wondering is if anyone has ever heard of Dr. Keenen or any

other

> Dr.s

> > here in the NW that have done revision surgeries. Dr. Keenen is

> > with the American Academy of Orthopaedic Surgeons, North

American

> > Spine Socity and Scoliosis Research Society.

> >

> > I had my surgery at the age of 15 at Shriner's Hospital here in

> > Portland, Oregon in 1977. I had 1 Harringon rod to correct a 45

> > degree lumbar curve from T-7 to the base of L-4. In 1988 I had

> > extreme sciatic pain on the left and without even thinking

about

> > further researching it allowed a surgeon (who I cannot find

now)

> to

> > remove the Harrington Rod, continue fusion to S1 and put in

> pedicle

> > screws. Well, all has been good until the last 12 to 18 months

so

> I

> > guess I can't complain.

> >

> > If anybody has any advise regarding surgeons, questions to ask

at

> my

> > appt., etc.. I would very much appreciate it. I'm sure I'll be

> here

> > quite frequently from now on.

> >

> > Sorry this post is so long. Thank you in advance to anyone who

> has

> > read this far.

> >

> > Tami

> >

>

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Dear Tami,

Dr. Anant Kumar

Denver Spine Center

1601 E. 19th Ave. Suite 4000

Denver CO,80218

303-860-1500

Don't know the Web address, just Google Denver Spine Center and it all will come up, nice site, I'm in the testimonial part.

Colorado Springs

[ ] New from Oregon> > > > > > Hello all. Is there anybody else here from the NW? I have been > > reading as many posts as I can in the last few weeks because of > > increasing pain. I have an appt. with Dr. Keenen on Oct. > > 25th which I have been waiting for since early September. My GP, > in > > the meantime, insisted I see a neurologist he could get me into > > quickly because he was so> > concerned after seeing my x-rays he had ordered. He knew I had my > > spine fused but had never actually seen the x-rays. Well, I had > my > > last appt. with the neurologist today who, after CT scan, CT > > myelogram, MRI,flexion and extension x-rays (pretty much a joke > since > > I'm fused from T-7 to S-1),says he doesn't think my pain (between > > shoulder blades, neck, lower back, hips and sciatic down left leg > has > > anything to do with my scoliosis!! I'm pretty sure my GP wanted > to > > pass the responsibility on to someone else as quickly as possible > and > > didn't want me waiting for my appt. with Dr. Keenen. What I was > > wondering is if anyone has ever heard of Dr. Keenen or any other > Dr.s > > here in the NW that have done revision surgeries. Dr. Keenen is > > with the American Academy of Orthopaedic Surgeons, North American > > Spine Socity and Scoliosis Research Society. > > > > I had my surgery at the age of 15 at Shriner's Hospital here in > > Portland, Oregon in 1977. I had 1 Harringon rod to correct a 45 > > degree lumbar curve from T-7 to the base of L-4. In 1988 I had > > extreme sciatic pain on the left and without even thinking about > > further researching it allowed a surgeon (who I cannot find now) > to > > remove the Harrington Rod, continue fusion to S1 and put in > pedicle > > screws. Well, all has been good until the last 12 to 18 months so > I > > guess I can't complain. > > > > If anybody has any advise regarding surgeons, questions to ask at > my > > appt., etc.. I would very much appreciate it. I'm sure I'll be > here > > quite frequently from now on.> > > > Sorry this post is so long. Thank you in advance to anyone who > has > > read this far.> > > > Tami> >>

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Hi Tami, I left Oregon in Feb. and moved to Spain, pretty much

dropped off that hemisphere, but temporarily. I keep meaning to jump

back in but have had complications with my right arm and have been

busy with a " new life " , so to speak.

Anyway, I wanted to give you what little input I can. There are two

of us on this site, both from Eugene. Elli is contemplating

revision and has sent xrays to dr. LaGrone in Amarillo. I don´t know

what she´s decided. I had revision exactly two years ago with dr.

LaGrone. I will probably return in the next few months for a check

up, but am anticipating no problems.

I first saw dr. Hart at OHSU in Portland. He has done revisions,

though I never got an answer to how many. I didn´t go to him although

he was anxious to operate, and in a private email, we could talk

more...

I saw Dr. Bradford in SF, tho´at the last minute he told me Breven

would be operating as he himself was undergoing surgery...

I also went to Denver and saw Dr. Kunar, sent xrays and talked to Dr.

Rand in Boston, went to Amarillo and saw Dr. LaGrone. All were very

helpful. I did my homework and spent a lot of money and time

traveling. I decided to go to Amarillo and have no regrets. Dr

LaGrone spent years in Seattle and perhaps he could recommend a good

dr. there as it would be closer and I´m sure he would do that for you.

Gotta go, please feel free to email me if you wish more

information.I´m sure Ellie would be more than willing to talk to you,

too. I do check this site, but not daily..

Best of luck to you.

Hi everybody who remembers me..

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Tami,

I think you are on track for getting the most out of your visit with

DrKeenen and sound like you have enough information now to go in and

really ask a lot of questions.

Keep a pad of paper by your bed, or your computer, and as quesitons

come up them down. Then ask them. This is a good technique for all

your consults, assuming you go to a few more. I also think it is

wise to bring someone else into the examening room who knows which

questions you have on your list and who can help you listen for

answers. When you come out of the doctors office you can go back

over with the other person what it was that the doctor said. You

will probably be surprised when you find that you missed stuff that

the other person heard, or understood differently.

As to second opinions....I believe they are invaluable no matter

what you choose to do ultimatley. You will learn a lot and the

experience will probably strengthen your feelings about what is

important to you in a surgeon and will give you a comparison to go

by. The docs that we tend to recommend for opinions can generally

be relied upon to have enough experience to give you a good,

knowlegable picture of your situation and potential choices. That

doesn't mean that another doctor could not do the surgery

successfully, if it comes to that, it just means you will have

a " benchmark " by which to judge your potential doctor.

If you can make the travel work, I think you have picked out two

very qualified surgeons who have done very well by many of the

members here. I didn't consult either...I am way over here on

the " right " coast....but I went to Boston and NYC...and I am very

glad I did.

What day is your appt? I will put it on the calendar.

Take Care, Cam

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Thanks Cam, my appt. is this Wednesday, the 25th. I have a very long

list of questions thanks to the list on this wonderful board and what

I've learned from reading the posts.

I thank God that I found this site.

Tami

>

> Tami,

>

> I think you are on track for getting the most out of your visit

with

> DrKeenen and sound like you have enough information now to go in

and

> really ask a lot of questions.

>

> Keep a pad of paper by your bed, or your computer, and as quesitons

> come up them down. Then ask them. This is a good technique for all

> your consults, assuming you go to a few more. I also think it is

> wise to bring someone else into the examening room who knows which

> questions you have on your list and who can help you listen for

> answers. When you come out of the doctors office you can go back

> over with the other person what it was that the doctor said. You

> will probably be surprised when you find that you missed stuff that

> the other person heard, or understood differently.

>

> As to second opinions....I believe they are invaluable no matter

> what you choose to do ultimatley. You will learn a lot and the

> experience will probably strengthen your feelings about what is

> important to you in a surgeon and will give you a comparison to go

> by. The docs that we tend to recommend for opinions can generally

> be relied upon to have enough experience to give you a good,

> knowlegable picture of your situation and potential choices. That

> doesn't mean that another doctor could not do the surgery

> successfully, if it comes to that, it just means you will have

> a " benchmark " by which to judge your potential doctor.

>

> If you can make the travel work, I think you have picked out two

> very qualified surgeons who have done very well by many of the

> members here. I didn't consult either...I am way over here on

> the " right " coast....but I went to Boston and NYC...and I am very

> glad I did.

>

> What day is your appt? I will put it on the calendar.

>

> Take Care, Cam

>

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Hi Joann, I sent you an e-mail.

Thanks,

Tami

>

> Hi Tami, I left Oregon in Feb. and moved to Spain, pretty much

> dropped off that hemisphere, but temporarily. I keep meaning to

jump

> back in but have had complications with my right arm and have been

> busy with a " new life " , so to speak.

> Anyway, I wanted to give you what little input I can. There are two

> of us on this site, both from Eugene. Elli is contemplating

> revision and has sent xrays to dr. LaGrone in Amarillo. I don´t

know

> what she´s decided. I had revision exactly two years ago with dr.

> LaGrone. I will probably return in the next few months for a check

> up, but am anticipating no problems.

>

> I first saw dr. Hart at OHSU in Portland. He has done revisions,

> though I never got an answer to how many. I didn´t go to him

although

> he was anxious to operate, and in a private email, we could talk

> more...

>

> I saw Dr. Bradford in SF, tho´at the last minute he told me Breven

> would be operating as he himself was undergoing surgery...

> I also went to Denver and saw Dr. Kunar, sent xrays and talked to

Dr.

> Rand in Boston, went to Amarillo and saw Dr. LaGrone. All were

very

> helpful. I did my homework and spent a lot of money and time

> traveling. I decided to go to Amarillo and have no regrets. Dr

> LaGrone spent years in Seattle and perhaps he could recommend a

good

> dr. there as it would be closer and I´m sure he would do that for

you.

>

> Gotta go, please feel free to email me if you wish more

> information.I´m sure Ellie would be more than willing to talk to

you,

> too. I do check this site, but not daily..

>

> Best of luck to you.

>

> Hi everybody who remembers me..

>

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