Report after seeing Dr. Koski

[Guest guest]

Hi, everyone!

We got back from Chicago yesterday, with great weather the whole time

too. The train from Detroit to Chicago was very convenient, and even

though we're not completely familiar with CTA, made our way just fine

to Northwestern (only got lost a couple times, always within a couple

blocks of where we needed to be!). And no ice storms! We had some

rain, and some of it was quite cold, but no ice. What a relief!

I saw Dr. Koski, instead of Dr. Ondra. (They work closely together.)

And I saw one of the fellows before then. He took a VERY thorough H &

P, which impressed me. I don't normally get to fill everyone in on all

the details! I know they are all related and I try to cram them in,

but he took the time to clarify and get better timelines. Then when

Dr. Koski came in, he had a few more answers than I've heard from

others - both about what's causing the pain, and what I might be able

to do about it. I very much liked his approach, bedside manner,

thoroughness, honesty. I would recommend him to others. Thank you to

for your patient perspective too!)

He was upset that I haven't been in physical therapy most of the last

19 years, as that could have prevented so much of my pain now. (DUH!)

So, he'll be quite the advocate to get back in physical therapy. Maybe

the powers that be will actually hear him.

He also wants me to try lidocaine patches and Lyrica. I may find no

relief from them, or they could be just the ticket. I am also to find

a physiatrist (or anesthesiologist/pain management dr) to work closely

with, and we can try trigger point injections (which we don't expect

to work, since my problems are more about scar tissue that is

interfering with muscles and fascia, but may surprise us), and

possibly facet joint injections if trigger point, Lyrica, etc., don't

work. Should this person work as closely with me as needed (and not

just fill another dr.'s orders), there may be other things to try as well.

Dr. Koski was surprised that I presented worse than my xrays. With

knees locked on both xrays and in person, I lean forward more than the

xrays showed. He said he could get me more upright, but that he didn't

think that would address my pain. I agreed. He thought the shooting

pains into my leg could be from the hook irritating the canal at

L3/L4, but before he'd go in to fix it, he'd want a VERY clear EMG and

several neural blocks that showed that particular nerve was being

affected at that particular spot. Otherwise, the risks of surgery and

making more scar tissue doesn't make sense for me.

He thinks much of my tenderness and pain in the sacrum and iliac

crests has to do with scar tissue. He didn't have any suggestions for

the SI joint/left buttock, but the injections he recommended might

help it. He didn't think the epidural injections Dr. Lee recommended,

and that I got last year about this time, would have worked, but that

they were still worth a shot (like the trigger point injections are

worth the shot).

The trip itself was challenging for me. I knew on the way back that I

had used up all my reserves for pain and sitting and walking. And sure

enough, this morning I could NOT get up. I tried to wake up and

finally forced myself to get up about 11am, accompanied by enormous

aches and pains and the ever-present headache I've had the last 2

weeks. Yuck! So I called the office and explained to our secretary

that I could not come in and would try to tele-commute in the

afternoon, assuming I could get upright.

Even though the ride back took all my reserves, I felt I had some hope

after seeing Dr. Koski, even hope in the next couple weeks, of some

pain relief. I put the prescription for Lyrica in, knowing it can take

2-3 weeks to see if I'll get any benefit from it. THEN, when I try to

pick it up, I get the lovely message from the pharmacist that it won't

be covered by insurance. At all. Not only is it not on the formulary,

it's considered a " stage two " drug that won't be covered at all unless

a stage one is tried first. The whole point of Lyrica for me, though,

is that it has far fewer and less bothersome side effects than its

precursor, neurontin. SO - I get to try that one, which I'm 90%

certain is going to make me loopy and unable to drive. Pretty much

I'll need a leave of absence for several weeks just to find out if

this drug will work. I can always go through the appeal process that's

worked so well for me so far, to get to try Lyrica first.

I found all this out last night, which sent me over the edge, back

into an abyss of hopelessness of ever getting out of this particular

bout of pain. Good grief!

Today, though, I talked with Kathy, Dr. Ondra's and Dr. Koski's nurse

at Northwestern, and she'll send the prescription for neurontin and

the letter for physical therapy to me tomorrow. I also scheduled appts

with two different physiatrists to " interview " them, but both of those

appts are in January. So still no relief in sight yet. I scheduled an

appt for a massage tomorrow, hoping to get some relief, even if it's

just from the headaches at this point.

Thanks to all of you praying, and sending good thoughts, for this

appointment. I hope seeing the physiatrists and getting back into

physical therapy will help. I'll keep the appointment with Dr. Rand at

this point, and see if I can find the money to get out there. I'm

thinking he'll have similar findings again, that I'm not a surgical

candidate at this point. I think it's still worth getting his opinion,

and perhaps he'll have some additional information.

Each of you remains in my prayers, and I hope this Advent and

Christmas are full of grace and mercy for you.

Deb M.

[Guest guest]

Deb,

I'm glad that you felt so comfortable with Dr. Koski. I really like

him a lot too, and his & Ondra's nurse Kathy is really good as well.

I was always happy with the amount of time he took with me, and the

fact that I never once felt rushed. I don't think I've ever had an

appointment last less than an hour, once he came in to talk face-to-

face. It's too bad that your insurance company has such

an " authority " over your health. It seems sad that Dr Koski

recommended Lyrica, but your insurance company is making you first

try a drug that you & he know will likely not cut it, not to mention

the difficulties you've had with trying to get approved for physical

therapy. I hope that now since you have another script for it, they

will cover it for you.

It's also nice to know that they were so up front with you about the

surgery being able to get you upright, but not likely helping your

pain. I hope that some of the other things that were suggested will

help you live more comfortably.

Will you be getting any further tests done, or are you going to get

the trigger point injections? I hope that you are feeling a little

more recovered from your trip, and I'm glad that it wasn't snowing or

icing for your visit to Chicago! If I lived closer, I would have

loved to try to meet you, but I'm an hour & a half away and can't

drive. I did get the pleasure of meeting a list member - Martha -

earlier this year. She lives in a suburb out there and so

wonderfully visited me twice during my hospital stay this last

summer. And Kathy White, who had surgery with Ondra shortly after me

this summer, visited me twice while out there for pre-op appointments.

>

> Hi, everyone!

>

> We got back from Chicago yesterday, with great weather the whole

time

> too. The train from Detroit to Chicago was very convenient, and even

> though we're not completely familiar with CTA, made our way just

fine

> to Northwestern (only got lost a couple times, always within a

couple

> blocks of where we needed to be!). And no ice storms! We had some

> rain, and some of it was quite cold, but no ice. What a relief!

>

> I saw Dr. Koski, instead of Dr. Ondra. (They work closely together.)

> And I saw one of the fellows before then. He took a VERY thorough H

&

> P, which impressed me. I don't normally get to fill everyone in on

all

> the details! I know they are all related and I try to cram them in,

> but he took the time to clarify and get better timelines. Then when

> Dr. Koski came in, he had a few more answers than I've heard from

> others - both about what's causing the pain, and what I might be

able

> to do about it. I very much liked his approach, bedside manner,

> thoroughness, honesty. I would recommend him to others. Thank you to

> for your patient perspective too!)

>

> He was upset that I haven't been in physical therapy most of the

last

> 19 years, as that could have prevented so much of my pain now.

(DUH!)

> So, he'll be quite the advocate to get back in physical therapy.

Maybe

> the powers that be will actually hear him.

> He also wants me to try lidocaine patches and Lyrica. I may find no

> relief from them, or they could be just the ticket. I am also to

find

> a physiatrist (or anesthesiologist/pain management dr) to work

closely

> with, and we can try trigger point injections (which we don't expect

> to work, since my problems are more about scar tissue that is

> interfering with muscles and fascia, but may surprise us), and

> possibly facet joint injections if trigger point, Lyrica, etc.,

don't

> work. Should this person work as closely with me as needed (and not

> just fill another dr.'s orders), there may be other things to try

as well.

>

> Dr. Koski was surprised that I presented worse than my xrays. With

> knees locked on both xrays and in person, I lean forward more than

the

> xrays showed. He said he could get me more upright, but that he

didn't

> think that would address my pain. I agreed. He thought the shooting

> pains into my leg could be from the hook irritating the canal at

> L3/L4, but before he'd go in to fix it, he'd want a VERY clear EMG

and

> several neural blocks that showed that particular nerve was being

> affected at that particular spot. Otherwise, the risks of surgery

and

> making more scar tissue doesn't make sense for me.

>

> He thinks much of my tenderness and pain in the sacrum and iliac

> crests has to do with scar tissue. He didn't have any suggestions

for

> the SI joint/left buttock, but the injections he recommended might

> help it. He didn't think the epidural injections Dr. Lee

recommended,

> and that I got last year about this time, would have worked, but

that

> they were still worth a shot (like the trigger point injections are

> worth the shot).

>

>

> The trip itself was challenging for me. I knew on the way back that

I

> had used up all my reserves for pain and sitting and walking. And

sure

> enough, this morning I could NOT get up. I tried to wake up and

> finally forced myself to get up about 11am, accompanied by enormous

> aches and pains and the ever-present headache I've had the last 2

> weeks. Yuck! So I called the office and explained to our secretary

> that I could not come in and would try to tele-commute in the

> afternoon, assuming I could get upright.

>

> Even though the ride back took all my reserves, I felt I had some

hope

> after seeing Dr. Koski, even hope in the next couple weeks, of some

> pain relief. I put the prescription for Lyrica in, knowing it can

take

> 2-3 weeks to see if I'll get any benefit from it. THEN, when I try

to

> pick it up, I get the lovely message from the pharmacist that it

won't

> be covered by insurance. At all. Not only is it not on the

formulary,

> it's considered a " stage two " drug that won't be covered at all

unless

> a stage one is tried first. The whole point of Lyrica for me,

though,

> is that it has far fewer and less bothersome side effects than its

> precursor, neurontin. SO - I get to try that one, which I'm 90%

> certain is going to make me loopy and unable to drive. Pretty much

> I'll need a leave of absence for several weeks just to find out if

> this drug will work. I can always go through the appeal process

that's

> worked so well for me so far, to get to try Lyrica first.

>

> I found all this out last night, which sent me over the edge, back

> into an abyss of hopelessness of ever getting out of this particular

> bout of pain. Good grief!

>

> Today, though, I talked with Kathy, Dr. Ondra's and Dr. Koski's

nurse

> at Northwestern, and she'll send the prescription for neurontin and

> the letter for physical therapy to me tomorrow. I also scheduled

appts

> with two different physiatrists to " interview " them, but both of

those

> appts are in January. So still no relief in sight yet. I scheduled

an

> appt for a massage tomorrow, hoping to get some relief, even if it's

> just from the headaches at this point.

>

>

> Thanks to all of you praying, and sending good thoughts, for this

> appointment. I hope seeing the physiatrists and getting back into

> physical therapy will help. I'll keep the appointment with Dr. Rand

at

> this point, and see if I can find the money to get out there. I'm

> thinking he'll have similar findings again, that I'm not a surgical

> candidate at this point. I think it's still worth getting his

opinion,

> and perhaps he'll have some additional information.

>

> Each of you remains in my prayers, and I hope this Advent and

> Christmas are full of grace and mercy for you.

>

> Deb M.

>

[Guest guest]

Deb,

Wow, you really " threaded the loop " if you missed all the weather I

was reading about from over here in mainly rainy Denmark!

You sound as if you have finally seen a doctor who " gets "

us...unfortunately I think they are rarer than hens teeth. Yes, part

of it is the amount of time that is spent really hearing what the

patient is saying. Still...the common fact between the doctors who

seem able to handle us is that they seem to accept the fact that

there is more going on in our spines than just the bone they can see

on the xrays. A part of me wonders if surgeons who do a lot of

aprimary scoli surgery are really unsuited to see us. I mean...it's

almost a contradiction....if you are placing all this hardware

routinely then your attitude must be that it will help....and then we

show up reminding the surgeons that sometimes the outcome is not as

rosey as the picture they paint. Anyway...I believe the docs that do

a lot of serious spinal deformity just have a better experiential

backgroud to " hear " our complaints! The other guys, like Lee, perhaps

have all the technical skills required...just not the view that Ondra

and Koski and others take.

As I was reading your post...remarkably similar scar tissue

disscusion as with Debbie...I though " geez, you are in or will be in

Chicago...why not talk to Martha and/check out this pain guy as well

as the sonographer that was able to abulate her scar tissue? " To

recap..here is the post from last fall re: her situation:

/message/19478

I am sure you remember Martha...she hasn't posted much in awhile but

I still correspond with her. I know she will email you about her

experience. You can find her in our member section as " medglen "

or " medglen1 " .

I am sorry you have to jump through all these hoops to just get a

chance to try some of these meds out. I hope they work.

Keep us posted. I hope your Christmas is wonderful and 2008 sees

things much improved for you!

Take Care, Cam

[Guest guest]

Deb, glad your app't went well. Hope you are able to get some relief

with some of the ideas the doctor suggested.

I just want to make one point--not to discourage you, but my

experience was that I couldn't tolerate the Lyrica (which was tried

first for me) AT ALL. It made me terribly sleepy all the time, and I

was on it for almost 6 months. And that WASN'T taking the recommended

2 tablets daily!!! I sure wouldn't have been able to work and take 2

a day--they made me act and feel like a drunk!! I went on Neurontin,

and it doesn't make me sleepy and it seems to help with the nerve

pain.

I hope that you find some relief!!!

Carol V.

>

> Hi, everyone!

>

> We got back from Chicago yesterday, with great weather the whole

time

> too. The train from Detroit to Chicago was very convenient, and even

> though we're not completely familiar with CTA, made our way just

fine

> to Northwestern (only got lost a couple times, always within a

couple

> blocks of where we needed to be!). And no ice storms! We had some

> rain, and some of it was quite cold, but no ice. What a relief!

>

> I saw Dr. Koski, instead of Dr. Ondra. (They work closely together.)

> And I saw one of the fellows before then. He took a VERY thorough H

&

> P, which impressed me. I don't normally get to fill everyone in on

all

> the details! I know they are all related and I try to cram them in,

> but he took the time to clarify and get better timelines. Then when

> Dr. Koski came in, he had a few more answers than I've heard from

> others - both about what's causing the pain, and what I might be

able

> to do about it. I very much liked his approach, bedside manner,

> thoroughness, honesty. I would recommend him to others. Thank you to

> for your patient perspective too!)

>

> He was upset that I haven't been in physical therapy most of the

last

> 19 years, as that could have prevented so much of my pain now.

(DUH!)

> So, he'll be quite the advocate to get back in physical therapy.

Maybe

> the powers that be will actually hear him.

> He also wants me to try lidocaine patches and Lyrica. I may find no

> relief from them, or they could be just the ticket. I am also to

find

> a physiatrist (or anesthesiologist/pain management dr) to work

closely

> with, and we can try trigger point injections (which we don't expect

> to work, since my problems are more about scar tissue that is

> interfering with muscles and fascia, but may surprise us), and

> possibly facet joint injections if trigger point, Lyrica, etc.,

don't

> work. Should this person work as closely with me as needed (and not

> just fill another dr.'s orders), there may be other things to try

as well.

>

> Dr. Koski was surprised that I presented worse than my xrays. With

> knees locked on both xrays and in person, I lean forward more than

the

> xrays showed. He said he could get me more upright, but that he

didn't

> think that would address my pain. I agreed. He thought the shooting

> pains into my leg could be from the hook irritating the canal at

> L3/L4, but before he'd go in to fix it, he'd want a VERY clear EMG

and

> several neural blocks that showed that particular nerve was being

> affected at that particular spot. Otherwise, the risks of surgery

and

> making more scar tissue doesn't make sense for me.

>

> He thinks much of my tenderness and pain in the sacrum and iliac

> crests has to do with scar tissue. He didn't have any suggestions

for

> the SI joint/left buttock, but the injections he recommended might

> help it. He didn't think the epidural injections Dr. Lee

recommended,

> and that I got last year about this time, would have worked, but

that

> they were still worth a shot (like the trigger point injections are

> worth the shot).

>

>

> The trip itself was challenging for me. I knew on the way back that

I

> had used up all my reserves for pain and sitting and walking. And

sure

> enough, this morning I could NOT get up. I tried to wake up and

> finally forced myself to get up about 11am, accompanied by enormous

> aches and pains and the ever-present headache I've had the last 2

> weeks. Yuck! So I called the office and explained to our secretary

> that I could not come in and would try to tele-commute in the

> afternoon, assuming I could get upright.

>

> Even though the ride back took all my reserves, I felt I had some

hope

> after seeing Dr. Koski, even hope in the next couple weeks, of some

> pain relief. I put the prescription for Lyrica in, knowing it can

take

> 2-3 weeks to see if I'll get any benefit from it. THEN, when I try

to

> pick it up, I get the lovely message from the pharmacist that it

won't

> be covered by insurance. At all. Not only is it not on the

formulary,

> it's considered a " stage two " drug that won't be covered at all

unless

> a stage one is tried first. The whole point of Lyrica for me,

though,

> is that it has far fewer and less bothersome side effects than its

> precursor, neurontin. SO - I get to try that one, which I'm 90%

> certain is going to make me loopy and unable to drive. Pretty much

> I'll need a leave of absence for several weeks just to find out if

> this drug will work. I can always go through the appeal process

that's

> worked so well for me so far, to get to try Lyrica first.

>

> I found all this out last night, which sent me over the edge, back

> into an abyss of hopelessness of ever getting out of this particular

> bout of pain. Good grief!

>

> Today, though, I talked with Kathy, Dr. Ondra's and Dr. Koski's

nurse

> at Northwestern, and she'll send the prescription for neurontin and

> the letter for physical therapy to me tomorrow. I also scheduled

appts

> with two different physiatrists to " interview " them, but both of

those

> appts are in January. So still no relief in sight yet. I scheduled

an

> appt for a massage tomorrow, hoping to get some relief, even if it's

> just from the headaches at this point.

>

>

> Thanks to all of you praying, and sending good thoughts, for this

> appointment. I hope seeing the physiatrists and getting back into

> physical therapy will help. I'll keep the appointment with Dr. Rand

at

> this point, and see if I can find the money to get out there. I'm

> thinking he'll have similar findings again, that I'm not a surgical

> candidate at this point. I think it's still worth getting his

opinion,

> and perhaps he'll have some additional information.

>

> Each of you remains in my prayers, and I hope this Advent and

> Christmas are full of grace and mercy for you.

>

> Deb M.

>