RE: tomorrow's appointment

October 22, 2008

Don't be apprehensive; Dr. Boachie is a nice man. He will probably

require xrays. I brought an MRI and CT scan to him but he really

needed xrays. It was too late in the day to get xrays at his office

so I got them another time and saw Dr. Boachie again with those

xrays. It seems the xrays are the most important of the diagnostic

imaging tools.

Good luck,

Caren

>

> Well, tomorrow I have my consult with Dr Boachie. I wish I could

say that I'm not apprehensive, but I am- just a bit. Normally, I

don't get stressed about doctor's visits because they've,

unfortunately become so routine. But, this one has me worried. I

think it's more that I don't know what to expect. How is the exam

done? Will they do their own imaging while we're there or order some

to be done after I get home? I have some disks to take with me but I

don't know if they will be enough. I hope I can formulate questions

to cover all of my concerns. I did write some down, but I will have

to think of some more. In a way I'm looking forward to it because I

need and want answers.

>

> I will report back either tomorrow night or Friday.

>

> Be well, everyone

> Jill

>

October 22, 2008

Hello Jill,

Your post sounds identical to mine - or to the "state" I was in before my visit with Dr. Hey who was my surgeon, as Dr. Boachie is pending to be yours.

You've got several things going for you in the good. No. 1 is that you have written down some questions. Even if you don't write anything else down, you've got some. I did that and though I didn't exactly do a "check list" with mine (which was a compilation of questions, situations, notables that I wanted to convey during the appointment) it helped me get started and if I'd get "lost" I'd look back at my note sheet. It served as something familiar to me - my own handwriting, a security thing I guess. No. 2 is that your husband will be with you. Worth its weight in gold, well, it was for me. As my mind was flying off in many different directions, and the "pace" of the consult was brisk, hubby asked a lot of questions of his own which made up for things I had forgotten to write down and/or ask. Then, on the way home, he helped me recall what all was said during the appointment (my mind was a blurr!). No. 3 - your films, etc. on the disks. I don't know how detailed the tests or what procedures you had done that are on the disk, but anything is good. In my case, I had ct, myelogram, mri, x-ray. The one he put most emphasis on was an x-ray, or perhaps some images from a mri...at any rate he was focusing on the vertebrae and how some were touching each other (bone against bone) and another area where one had slipped down behind another and seemed bewildered (I guess that's the right word) that in the written reports/results from the studies that accompanied the films on the cd did not even mention those two obvious things. Though surgeons will view the films, most do NOT read the written conclusion/diagnosis provided by the radiologists, they are mainly interested in the films so they can make their own determmination. They usually order their own set of tests, and I suspect those may vary from patient to patient, depending on chief complaints, pain areas... That's pretty much what my experiences have been.

What I gained from my first consult with a professional who had a clue to complex spine situations such as ours was VALIDATION - which was long awaited.

So, best of luck to you. Try??? to calm down??? is that possible??? I couldn't! - and didn't - but since you have some questions/notes, hubby is going to be there too, and you've got your films, etc. on a cd - you're really very well prepared, whether you think so or not!. Remember, Dr. Boachie will need some of that consultation time to ask you some questions and provide his valuable input! Not to mention what a tremendous surgeon Dr. Boachie has proven himself to be!

G NC

[ ] tomorrow's appointment

Well, tomorrow I have my consult with Dr Boachie. I wish I could say that I'm not apprehensive, but I am- just a bit. Normally, I don't get stressed about doctor's visits because they've, unfortunately become so routine. But, this one has me worried. I think it's more that I don't know what to expect. How is the exam done? Will they do their own imaging while we're there or order some to be done after I get home? I have some disks to take with me but I don't know if they will be enough. I hope I can formulate questions to cover all of my concerns. I did write some down, but I will have to think of some more. In a way I'm looking forward to it because I need and want answers.

I will report back either tomorrow night or Friday.

Be well, everyone

Jill

October 22, 2008

Caren,

Thanks so much. I'm sure it will all be ok once I get there and get a feel

for things. I don't have x-rays, but maybe they can be done, tomorrow. My

appointment was moved up from 1:30 to 11:00 am so hopefully there will be

time.

Thanks for your support and info.

Be well,

Jill

[ ] Re: tomorrow's appointment

> Don't be apprehensive; Dr. Boachie is a nice man. He will probably

> require xrays. I brought an MRI and CT scan to him but he really

> needed xrays. It was too late in the day to get xrays at his office

> so I got them another time and saw Dr. Boachie again with those

> xrays. It seems the xrays are the most important of the diagnostic

> imaging tools.

>

> Good luck,

> Caren

>

>>

>> Well, tomorrow I have my consult with Dr Boachie. I wish I could

> say that I'm not apprehensive, but I am- just a bit. Normally, I

> don't get stressed about doctor's visits because they've,

> unfortunately become so routine. But, this one has me worried. I

> think it's more that I don't know what to expect. How is the exam

> done? Will they do their own imaging while we're there or order some

> to be done after I get home? I have some disks to take with me but I

> don't know if they will be enough. I hope I can formulate questions

> to cover all of my concerns. I did write some down, but I will have

> to think of some more. In a way I'm looking forward to it because I

> need and want answers.

>>

>> I will report back either tomorrow night or Friday.

>>

>> Be well, everyone

>> Jill

>>

>

> ------------------------------------

>

> scoliosis veterans * flatback sufferers * revision candidates

> Links

>

October 22, 2008

Hi,

I really appreciate your input. As for company, you are right. We do that for each other. We were in NYC for an appt for him in August and talked about it all the way home. It helps things sink in and puts perspective on it.

The "pace" of the consult concerns me, too, as you mentioned. Most specialist appts go by so fast it makes your head spin. Hoping to be ready for him with an onslaught! I'm hoping he emails because I want to be able to contact him with questions if I've forgotten any while there.

For imaging I have CT scans of cervical spine, thoracic spine and a very poor MRI of my lumbar spine (artifact from the rods) but the only recent one is the CT of thoracic spine. I also have 2 chest CTs because I have cystic fibrosis and get one every year. Actually, you can see the spine quite nicely in the chest cts, which is why I opted to take them with me. Better to have more than not enough. I have the reports from each, but I agree they'd rather see the images. I have no plain x-rays.

Anyway, I want to thank you for your email. It was very much appreciated.

I think I'll try to watch a bit of the World Series and then try to get some sleep. It will be a very early morning.

Thanks, again.

Be well,

Jill

[ ] tomorrow's appointment

Well, tomorrow I have my consult with Dr Boachie. I wish I could say that I'm not apprehensive, but I am- just a bit. Normally, I don't get stressed about doctor's visits because they've, unfortunately become so routine. But, this one has me worried. I think it's more that I don't know what to expect. How is the exam done? Will they do their own imaging while we're there or order some to be done after I get home? I have some disks to take with me but I don't know if they will be enough. I hope I can formulate questions to cover all of my concerns. I did write some down, but I will have to think of some more. In a way I'm looking forward to it because I need and want answers.

I will report back either tomorrow night or Friday.

Be well, everyone

Jill

October 24, 2008

Jill,

I hope the appointment with DrBoachie went well. I am sure you are

still busy digesting a ton of information and haven't even had a chance

to really know what it all means. I do hope you, and your husband got

all your questions asked and maybe even had a chance to make some

notes. If not, when you write up for us it will probably help you

clarify what you heard!

I don't suppose you got in to see Arlene or ie?

Take Care, Cam

October 24, 2008

Hi, Cam

Thanks for your note. My mind is still reeling with info and confusion. It

was a really long day, as you can well imagine. We hit a lot of traffic

coming out of the city and again in CT. I think there were a couple of

accidents. I was sooo tired last night.

Yes, I asked questions, but I still have more so will have to email. Also,

things I thought I understood, I'm not so sure any more.

Bottom line, for now is no surgery. We will follow-up in a year to watch

progression primarily of the kyphosis. What I don't understand is the

measurement for what I think he called the trunk shape or trunk something.

Mine is 13 cm and normal is 3 cm. I don't have a clue what it is. The other

measurements I understand- the back view, side view and lumbar lordosis

measurements.

I found Dr Boachie to be a very kind and gentle man. I was very happy with

my consult. He spent a lot of time with us, took x-rays and reviewed the

disks

I brought. The plan is for me to get some PT. He checked off an awful lot of

things on the script. I'm going for an eval, anyway, with a physiatrist

(physical and rehabilitaion doctor) for something else, on Nov 3 so I'm

hoping he will be able to take care of the PT as well.

One thing for sure, I'm glad that an expert has validated my condition.

A local doc told me probably 10 yrs ago that I had flatback syndrome (which

I hadn't heard of a that point). No measurements were done and I was just

told it would get worse. So, with modern technology aka my computer, I did a

lot of research as we all did but it wasn't enough. I really needed

yesterday's consult. I'm glad I went, but.... it's not like a cold where you

are miserable but can treat the symptoms and it will go away in time. I just

hope the PT will retrain my body and offer some relief.

Now, for the good news- I did get to see Arlene. I had asked the Dr about

her and he said she was doing well. Then, a woman from his office came by as

I was getting ready to leave and said something about Arlene. I think she

said Arlene said hello. I told her I was going to try to go see her so she

walked us to the hospital and then told us how to find her. Where Arlene is,

they have limited visiting hours, not unlimited. So, I had to wait over an

hour for the next visiting session. In the meantime, while in the waiting

room I heard someone checking in for her, so I went over to him and found

out it was her husband. I introduced myself and we chatted til they started

calling for visitors. They only allow a 15 min. visit ( I think that was the

limit) so it was very kind of Ron to let me sneak in 1st as only 1 visitor

at a time is allowed in. I went in and introduced myself and stayed just a

minute or 2. She looks good considering all she's been through. I had a card

for her but she asked me to give it to Ron as there's no place to put them

in the area where she is .I am delighted to have met both of them; it was

worth the wait.

Be well, everyone

Jill

[ ] Re: tomorrow's appointment

> Jill,

>

> I hope the appointment with DrBoachie went well. I am sure you are

> still busy digesting a ton of information and haven't even had a chance

> to really know what it all means. I do hope you, and your husband got

> all your questions asked and maybe even had a chance to make some

> notes. If not, when you write up for us it will probably help you

> clarify what you heard!

>

> I don't suppose you got in to see Arlene or ie?

>

> Take Care, Cam

>

> ------------------------------------

>

> scoliosis veterans * flatback sufferers * revision candidates

> Links

>

October 24, 2008

Could the 13 cm be this:

When looking at the spine from the side view, the surgeon draws a straight line where the normal spine should be. Then they measure how pitched forward your spine is from where the normal spine should be. I think mine measured 6 cm because I wasn't pitched forward too much. So possibly the 13 cm is how far forward your spine is pitched.

Peggy

[ ] Re: tomorrow's appointment> Jill,>> I hope the appointment with DrBoachie went well. I am sure you are> still busy digesting a ton of information and haven't even had a chance> to really know what it all means. I do hope you, and your husband got> all your questions asked and maybe even had a chance to make some> notes. If not, when you write up for us it will probably help you> clarify what you heard!>> I don't suppose you got in to see Arlene or ie?>> Take Care, Cam>>> ------------------------------------>> scoliosis veterans * flatback sufferers * revision candidates> Links>>>>

October 24, 2008

Jill,

Wow...sorry you had such a long trip out of the city. That must have

turned a long day into an exhausting one. Hopefully when you are

rested all the things you saw and heard will slowly come together

into a coherent recollection...not that you didn't give us a great

outline. I just can " hear " that you haven't digested it all yet.

I think the main point your experience underscores is that sense

that you spoke with a very experienced doctor who can help you when,

and if, it becomes necesary. You can rest in the knowledge that you

can have the help you might need. Its NOT an emergency. The surgeon

has a potential plan in mind, but you can exhaust all other options

and just see how your life and health goes. If nothing else, time

spent strengthening yourself now will stand you in good stead no

matter what comes. I hope you find it gives you some relief too.

Do you suppose DrBoachie was referring to the amount of forward tilt

of your torso when he told you you were at 13cm? I have never heard

of trunk shape....but what do I know?!!

Its wonderful that you were able to see Arlene. I am glad to know

that that she is slowly coming around. Hopefully she will soon be

down on the regular floor and working toward discharge. You were

brave to see her now, as I am sure that you could see that the first

few days after this surgery are no picnic....but I suppose you also

saw that she was getting very good care in the hospital that you

might also be in yourself.

Let us know what you find out from the physiatrist....I know others

will be interested in what kind of program you get from PT...not to

mention the results of the work outs.

Take Care,

October 25, 2008

I think Peggy and Cam are probably right about what the 13cm meant,

but I'm wondering if he said " trunk shift " ?

Anyway, glad to hear that you feel so much better for having had the

appointment. Knowing that you've been properly assessed makes a lot

of difference to your peace of mind and ability to work out how to

move forward )

titch

October 25, 2008

Peggy,

I'm not sure. Doesn't the pitch have something to do with the amount of kyphosis? If so my kyphosis is 50 (I assume that's degrees?). I just don't know. I will spend some time over the weekend trying to formulate questions based on the info I have. It's really frustrating.

Thanks a lot, Peggy.

Be well,

Jill

[ ] Re: tomorrow's appointment> Jill,>> I hope the appointment with DrBoachie went well. I am sure you are> still busy digesting a ton of information and haven't even had a chance> to really know what it all means. I do hope you, and your husband got> all your questions asked and maybe even had a chance to make some> notes. If not, when you write up for us it will probably help you> clarify what you heard!>> I don't suppose you got in to see Arlene or ie?>> Take Care, Cam>>> ------------------------------------>> scoliosis veterans * flatback sufferers * revision candidates> Links>>>>

October 25, 2008

You might be right, titch, but is so, what is trunk shift?

Thanks for your input.

Be well,

Jill

[ ] Re: tomorrow's appointment

>I think Peggy and Cam are probably right about what the 13cm meant,

> but I'm wondering if he said " trunk shift " ?

>

> Anyway, glad to hear that you feel so much better for having had the

> appointment. Knowing that you've been properly assessed makes a lot

> of difference to your peace of mind and ability to work out how to

> move forward )

>

> titch

>

> ------------------------------------

>

> scoliosis veterans * flatback sufferers * revision candidates

> Links

>

October 25, 2008

In all honesty I've actually only heard the term trunk shift used in

relation to a coronal imbalance, ie a lean or displacement of the

upper body to either the left or the right, but it was the first thing

that sprang to mind as what he might have said, given that you were

uncertain of it - it may or may not be right!

The 13cm/3cm sounds like the measure of how far forward you are

pitched. Normally, when a side xray is taken, the centre of the C7

vertebra at the bottom of the neck should be more or less in line with

the top of the back of the sacrum. A normal measurement is within 3cm

of this.

Flatback is only one specific kind of sagittal imbalance. In my case,

it was not actually flatback, but the fact that my original T10-L2

fusion had me fixed in a kyphosis. So while I had a lovely lordosis

below it, the fact that the back of my waist was totally out of whack

led to me developing a lack of kyphosis in the thoracic spine, and my

lordosis decreasing because of disc collapse beneath it, and just

because after the first couple of years where I was able to compensate

by leaning backward (not that I realised it at the time!) I

progressively couldn't do that any more. I don't know if they ever

officially measured how out of balance I was, but I do know that the

xray wasn't accurate even if they did - they had to prop me up because

I was pitched over so far I didn't fit on the film if I stood with my

knees extended, so can't give you any confirmed point of comparison there.

You can have forward leaning stance from sagittal imbalance from a

lack of lordosis, an excess of kyphosis, a combination of the lot,

whether you have had surgery or not, so it is likely that your

kyphosis is at least part of the cause, quite apart from any loss of

lordosis that surgery may have caused.

Hope that helps a bit!

titch

> You might be right, titch, but is so, what is trunk shift?

> Thanks for your input.

>

> Be well,

> Jill

October 25, 2008

Last attempt seems to have disappeared into the ether, but Firefox

seems to save the contents of text boxes, so here it is again )

(Apologies if this means you all end up with it twice...)