Re: mylegram anyone?

[Guest guest]

Hi ,

Yes, I had a myelogram a few years ago. They offered me something in

advance to calm me down because I was very nervous, which helped a

lot. If you feel it would benefit you and they don't offer, ASK! My

lumbar spine was already fused to the sacrum with Harrington Rods, so

they had to insert the needle into my cervical spine. This makes the

procedure more risky than the more common/less risky way of having the

needle inserted into lumbar spine. The person who did mine was very

experienced and had no problems with the procedure. I had to have

somebody else drive me to and from the hospital, and it was good to

have that person listen to the instructions both before and after the

test with me, and remind me to follow them (my dear sister " caught

me " trying to bend over to put on and tie my shoes after the

procedure, which the nurse had said not to do). I reclined in the

back seat of the car on bed pillows afterwards. I think I was told

not to lie completely flat for a few days, but at a bit of an angle,

and to drink lots of fluids and take it easy. My torso seemed very

sore during that time period. I have some residual numbness/tinglies

in my face, neck and upper back since the myelogram, but that may be

because I have a super sensitive system to anything invasive. During

the procedure one of my legs gave a big jerk, which surprised the heck

out of me. I wish they would have forewarned me that that could

happen. I also had a CT scan right after the myelogram which was not

a big deal at all.

It's normal to dread a thing like this, but I guess you just have to

look at it as one of the steps you need to go through to get better. I

was really scared because I had problems with a myelogram back in 1977

before my first fusion (headache, pain, vomitting). The way they do

them now is much more advanced and less prone to problems, thankfully!

If you type myelogram into the search box in this site, you'll find

posts from other people about their experiences, and I'm sure I wrote

about my own years ago here, too. Just keep hitting " search more " to

get to view them all. Good luck and don't hesitate to write if

there's any other info. I can give you.

loriann

>

> Ah!

>

> Has anyone had this test? I am so terrified and tired of 'it all'

> that I told Dr Rand's office I was sick and rescheduled. It is

> coming back up and I am just not up for it emotionally.

>

> This is for revision surgery, and I understand its importance, and

> will go, however would love some honest feedback from someone who

> has had it and wont coddle me.

>

> I hope all is well with everyone and my thoughts and prayers are

> with you all.

>

> Any help would be appreciated!

>

> Oh. Also, has anyone been fused to sacrum with 'implants' into the

> pelvis?? It sounds so ....much!?

>

> Any answers would be appreciated!

>

> in MA

>

[Guest guest]

Thanks Loriann for the reply, it really helps.

I have read a lot and it just scared me so I stopped and came here

to get more of a real sense of the experience. I am prone to

migraines and told them this, and about my high anxiety and nothing

was offered for either. When I called Dr Rand's office, his nurse

told me that if I was this anxious about this, then I wasn't ready

for surgery, which REALLY REALLY made me upset.

He wants to do up to three surgeries, and I think it is fair to say

that we have been through a lot and I believe the last thing we need

right before scheduling such an important surgery- agian- is

misunderstanding and that is exactly how I feel and this has tossed

me into a depression I have never experienced.

thanks for listening, and will keep you posted, the test is April

26, and if I am not there apparently I wont be operated on!

> >

> > Ah!

> >

> > Has anyone had this test? I am so terrified and tired of 'it

all'

> > that I told Dr Rand's office I was sick and rescheduled. It is

> > coming back up and I am just not up for it emotionally.

> >

> > This is for revision surgery, and I understand its importance,

and

> > will go, however would love some honest feedback from someone

who

> > has had it and wont coddle me.

> >

> > I hope all is well with everyone and my thoughts and prayers are

> > with you all.

> >

> > Any help would be appreciated!

> >

> > Oh. Also, has anyone been fused to sacrum with 'implants' into

the

> > pelvis?? It sounds so ....much!?

> >

> > Any answers would be appreciated!

> >

> > in MA

> >

>

[Guest guest]

, I am fused to sacrum, but don't know what you mean by implants. Obviously, I don't have them. I had a myelogram prior to my revision surgery five years ago. It wasn't too bad. I was on my stomach, which I never do, so that was tough for me. Then the computer malfunctioned, so they had to take me to another room. I was getting a bit anxious at this point. The staff was very reassuring and eventually the test was done. Not painful, not really uncomfortable. I was in the hospital overnight for observation, was getting up to the bathroom when I wasn't supposed to and that was that. However, I had one about 20 years ago and had a post procedural headache which was from hell. The procedure today is done differently and usually you can avoid the headache. Definitely a useful procedure to have prior to surgery!!!! Good luck. Donnamisgrrl

<misgrrl@...> wrote: Ah!Has anyone had this test? Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

Hi ,

I get really nervous (blotchy-skinned and everything) whenever I have

to go see a medical professional even for a routine visit and am a

total mess whenever I have to have an invasive test or surgery. I

would think (and I actually expect) medical professionals would be

used to people like us! Haven't had my flatback revision yet, so I can

only imagine how bad I'll be for that!

I should clarify though, that it was the radiology people at the

hospital when I arrived for the myelogram who offered me something to

mellow me out (I think it was valium). Not the surgeon who ordered

the myelogram.

I think that secretary's response to you was inappropriate at best and

verging on practicing medicine without a license at worse, and I'd

probably discuss what she said with the doctor if it was me to see if

he agreed with her. I hope she was just having a bad day or joking (a

very bad joke) and is not always that nasty to deal with. I've been

told flatback revision is the biggest surgery done by my OS. I would

think anyone facing it would be nervous. Try to keep focusing on how

things will get much worse if you don't have the surgery, and

hopefully you can keep your courage up for it. You also might try

talking to your family doctor or general practitioner. One time before

a rather minor surgery (non-spine related), I seemed too nervous to

my surgeon, and he actually contacted my G.P. and suggested he discuss

my possibly being prescribed something to settle my nerves some.

" Reading a lot " is a double-edged sword. Although you can learn many

things by reading, it's likely some of what you read does not apply to

you, especially when it is outdated (as a lot of the info. on the

older style myelograms can be) or anecdotal from people with much

different circumstances than you. It helps me to keep my courage up

for having revision surgery (eventually) if I concentrate on the fact

that most people are happy that they did so (at least that's what my

OS told me about his patients).

Will be thinking about you and wishing you much courage for the 26th!

loriann

>

> Thanks Loriann for the reply, it really helps.

>

> I have read a lot and it just scared me so I stopped and came here

> to get more of a real sense of the experience. I am prone to

> migraines and told them this, and about my high anxiety and nothing

> was offered for either. When I called Dr Rand's office, his nurse

> told me that if I was this anxious about this, then I wasn't ready

> for surgery, which REALLY REALLY made me upset.

>

> He wants to do up to three surgeries, and I think it is fair to say

> that we have been through a lot and I believe the last thing we need

> right before scheduling such an important surgery- agian- is

> misunderstanding and that is exactly how I feel and this has tossed

> me into a depression I have never experienced.

>

>

> thanks for listening, and will keep you posted, the test is April

> 26, and if I am not there apparently I wont be operated on!

>

>

[Guest guest]

,

I agree with Loriann

That was VERY unprofessional of that nurse to say something like that.

Not to mention Heartless and unkind. How much do you want to bet that she

never even had surgery before in her life.? Not to mention an extensive

and complicated surgery like revision is. It's tough when you come across

people like that. They really can cause some upset. But keep plugging

along till you find the medical people that you feel comfortable with and

can work with. This lady ranks a big zero on the test of humanity and

social graces. She sounds pretty hardened and callous. I say, try to

avoid her at all costs if possible. Her insight into how pre surgical

patients feel is sorely lacking. But, hang in there, You will find the

right fit eventually.

Take Care.

Carol

On Mon, 10 Apr 2006 00:16:34 -0000 " loriann262000 "

<lcmelko@...> writes:

> Hi ,

>

> I get really nervous (blotchy-skinned and everything) whenever I

> have

> to go see a medical professional even for a routine visit and am a

> total mess whenever I have to have an invasive test or surgery. I

> would think (and I actually expect) medical professionals would be

> used to people like us! Haven't had my flatback revision yet, so I

> can

> only imagine how bad I'll be for that!

>

> I should clarify though, that it was the radiology people at the

> hospital when I arrived for the myelogram who offered me something

> to

> mellow me out (I think it was valium). Not the surgeon who ordered

> the myelogram.

>

> I think that secretary's response to you was inappropriate at best

> and

> verging on practicing medicine without a license at worse, and I'd

> probably discuss what she said with the doctor if it was me to see

> if

> he agreed with her. I hope she was just having a bad day or joking

> (a

> very bad joke) and is not always that nasty to deal with. I've

> been

> told flatback revision is the biggest surgery done by my OS. I

> would

> think anyone facing it would be nervous. Try to keep focusing on

> how

> things will get much worse if you don't have the surgery, and

> hopefully you can keep your courage up for it. You also might try

> talking to your family doctor or general practitioner. One time

> before

> a rather minor surgery (non-spine related), I seemed too nervous

> to

> my surgeon, and he actually contacted my G.P. and suggested he

> discuss

> my possibly being prescribed something to settle my nerves some.

>

> " Reading a lot " is a double-edged sword. Although you can learn

> many

> things by reading, it's likely some of what you read does not apply

> to

> you, especially when it is outdated (as a lot of the info. on the

> older style myelograms can be) or anecdotal from people with much

> different circumstances than you. It helps me to keep my courage

> up

> for having revision surgery (eventually) if I concentrate on the

> fact

> that most people are happy that they did so (at least that's what

> my

> OS told me about his patients).

>

> Will be thinking about you and wishing you much courage for the

> 26th!

>

>

> loriann

>

>

> >

> > Thanks Loriann for the reply, it really helps.

> >

> > I have read a lot and it just scared me so I stopped and came here

>

> > to get more of a real sense of the experience. I am prone to

> > migraines and told them this, and about my high anxiety and

> nothing

> > was offered for either. When I called Dr Rand's office, his nurse

>

> > told me that if I was this anxious about this, then I wasn't ready

>

> > for surgery, which REALLY REALLY made me upset.

> >

> > He wants to do up to three surgeries, and I think it is fair to

> say

> > that we have been through a lot and I believe the last thing we

> need

> > right before scheduling such an important surgery- agian- is

> > misunderstanding and that is exactly how I feel and this has

> tossed

> > me into a depression I have never experienced.

> >

> >

> > thanks for listening, and will keep you posted, the test is April

>

> > 26, and if I am not there apparently I wont be operated on!

> >

> >

>

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

> ads or endorse any advertised products.

>

[Guest guest]

> Oh. Also, has anyone been fused to sacrum with 'implants' into the

> pelvis?? It sounds so ....much!?

Hi, --

I have been reading some of your recent posts, and I can certainly

feel for what you are going through. Not having had a myelogram, I

will leave that issue to others and will comment on several of your

other points.

Yes, I was fused to the sacrum in 2001 when Dr. Rand (your own

surgeon) corrected my severe flatback syndrome. I think you can

relax and know that you are in excellent hands with him. He is a

very serious, careful surgeon -- " punctilious " might be the word;

almsot compulsive (something I appreciate in someone who plans to

operate on my body!)For instance: (1) When I went down to x-ray to

get the pre-op bending films he had ordered, and was just about

settling down to work with the X-ray tech, who should suddenly

appear but -- Dr. Rand! He just wanted to make absolutely sure that

the x-rays were done impeccably, exactly as he wanted them, and he

looked over the technician's shoulder, giving him advice and

intruction, the whole time. (2) During the anterior portion of my

revision surgery, Dr. Rand apparently was not perfectly satisfied

with my positioning on the table. He broke scrub to prop up my lower

back with a blanket and some terrycloth towels, thus producing the

dsirable lordosis I did not yet have naturally, opening my disk

space, and enabling him to shape the implants he wanted to introduce

(more about this in a little bit.)

You should also know that I somehow managed to get my family and

other " principal players " on board for a 1,000-mile trip from

Chicago to Boston and then back home to Chicago once more -- just to

have surgery with Dr. Rand. At the time I was not familiar with any

revision surgeon in my own city. I also considered and contacted Dr.

LaGrone in Amarillo, Dr. Boachie in New York, and one or two of the

West Coast revision surgeons, but ultimately settled on Rand

as my best bet.

It is fairly common to do pelvic implants with revisions like yours

and mine. Of course the word " implant " can refer to any kind of

material placed in a patient's body, so I am not sure whether Dr.

Rand was referring to specific hardware or something else. In my

case, in addition to using various rods, pedicle screws, and so

forth, Rand implanted two small, prefabricated " cages " packed with

graft tissue harvested from my own bone and also with something

called Bone Morphogenic Material which is said to stimualte bone

growth. I suspect this is the type of implant he may have meant in

talking to you about your own surgery. The bone material, held in

place by the cages, was implanted in the low-lumbar, high-sacral

area, so it would have been considered pelvic.

I later needed additional revision surgery here in Chicago with an

equally skilled surgeon I was fortunate enough to find later on, Dr.

Ondra. Dr. Ondra had to remove the big pelvic bolts

(technically, an " iliac wing screw " and an " iliac wing post, " I

believe), because they had started to cause me pain -- a problem

other patients were reporting with these bolts when they were

positioned fairly far forward, but not one that surgeons would have

been expected to know about as yet at the time I originally obtained

this clunky pair of hardware devices. In the process of improving my

sagittal plane correction even more, Dr. Ondra also removed my aging

Harrington rod (which Dr. Rand had left and incorporated in his

revision surgery). Of course Dr. Ondra introduced plenty of new

hardware of his own, making up for anything he may have removed.

Through all this -- four additional revisions, actually -- the two

interesting little cages remained firmly in place, and they remain

there to this day -- my permanent pelvic implants, courtesy of Dr.

Rand. (Come to think of it, I probably should give them names --

what do you think? The " Baptist " Bobbsey twins? Randy and ie?

<yuck, yuck> <inappropriate giggle or two>

you also wrote one more thing I wanted to comment on:

He wants to do up to three surgeries, and I think it is fair to

> say

> > that we have been through a lot

Yes, we certainly have! I hope you are getting the feeling that you

have friends and allies at this group who can give you some of the

help and support that anyone needs and deserves when embarking on

this very serious revision process. I am wondering if you

understood Dr. Rand correctly, though, in terms of possibly needing

three surgeries. I was very confused about this before my own

revision, because he used the same kind of terminology with me.

Actually what he meant was two surgeries -- and Lord knows those

were major enough, about nine hours each, separated by a week

between the two of them. The first operative episode involved

posterior surgery. The second one consisted of anterior surgery

followed by one final posterior stage. In other words, I technically

could be said to have had three surgeries, I guess, but they were

done in the course of two total trips to the operating room and two

instances of general anesthesia. (I hope I'm making sense.)

Thanks so much for sharing your experiences and concerns with us. I

hope you will keep posting. I also hope you will take advantage of

all the resources we have available at our website, e.g., in

the " Files " and " Links " sections -- all kinds of good stuff about

preparing for hospitalization and revision surgery.

I still haven't gotten to the episode of the rude or nasty

secretary, but I can imagine what kind of thing you may have heard.

Unfortunately even trained personnel who work in hospitals or with

doctors and who should certainly know better will utter incredibly

ignorant and hurtful statements. I could tell you some

stories . . . . Anyway, if you do not feel this was the kind of

incident you want to report or otherwise act on, I hope you can just

shrug it off and send it packing. As you know, we are the Feisty

Women (plus several Feisty Gents) -- which means we have many fine

and self-affirming qualities, including our absolute refusal to

suffer fools gladly. Now that you are one of us, I hope you will get

better and better at blowing off the fools and surrounding yourself,

as much as possible, only with people who nourish, nurture, affirm,

and support you in every way possible.

Take good care of yourself, , and keep in touch!

Best,

[Guest guest]

thanks so much, everyone for your understanding regarding how i was

spoken to. i do think that it was unprofessional, and it certainly

tainted my thoughts on my surgeon, but i was really, really nervous

and chances are extremely difficult as well...

the woman i speak of has been with my surgeon for a long time and,

from what i have heard from other patients, is not generally unkind

so i must have truly pushed some buttons. i am not one to just sit

and take it as i did as a child going through this, and have MANY

questions....

ya know, my dr. still hasnt called me.... but, i am going to the

mylegram because i am brave and need it done, as well as this

surgery or series of them. i will let you all know how it goes- i

am sure i am making up a grand story in my head about it all.

thanks once again for all your support, you could never know how it

has helped.

> > >

> > > Thanks Loriann for the reply, it really helps.

> > >

> > > I have read a lot and it just scared me so I stopped and came

here

> >

> > > to get more of a real sense of the experience. I am prone to

> > > migraines and told them this, and about my high anxiety and

> > nothing

> > > was offered for either. When I called Dr Rand's office, his

nurse

> >

> > > told me that if I was this anxious about this, then I wasn't

ready

> >

> > > for surgery, which REALLY REALLY made me upset.

> > >

> > > He wants to do up to three surgeries, and I think it is fair

to

> > say

> > > that we have been through a lot and I believe the last thing

we

> > need

> > > right before scheduling such an important surgery- agian- is

> > > misunderstanding and that is exactly how I feel and this has

> > tossed

> > > me into a depression I have never experienced.

> > >

> > >

> > > thanks for listening, and will keep you posted, the test is

April

> >

> > > 26, and if I am not there apparently I wont be operated on!

> > >

> > >

> >

> >

> >

> >

> >

> >

> > Support for scoliosis-surgery veterans with Harrington Rod

> > Malalignment Syndrome. Not medical advice. Group does not

control

> > ads or endorse any advertised products.

> >

[Guest guest]

hey and thank you for such kind words and informative posting.

at this point i am under the impression that dr rand, who i am just

tickled that you find him 'obsessive' =), is going to have the

myelogram done to see if there is a need for the 'second' surgery.

you see, when i spoke to him three years ago origionally about this,

he stated two, possibly three operations whereas i would be in

a 'rehab' between- because i did need about 24 hours of surgical

time. however, now, he thinks he can do it (anterior and posterior)

in one to two surgeries (anesthetic involved). so this will tell a

lot and again, i will keep you all posted.

i dont know if i had mentioned but i have been a HUGE migrane

sufferer since 16 and have just about had it with headaches lol...

ok, well back to school for me. thank you elizabeth- you are amazing

and have the gift of not only teaching but doing it with enormous

kindness and completeness. thanks for being here.

hugs to all!

>

> > Oh. Also, has anyone been fused to sacrum with 'implants' into

the

> > pelvis?? It sounds so ....much!?

>

> Hi, --

>

> I have been reading some of your recent posts, and I can certainly

> feel for what you are going through. Not having had a myelogram, I

> will leave that issue to others and will comment on several of

your

> other points.

>

> Yes, I was fused to the sacrum in 2001 when Dr. Rand (your

own

> surgeon) corrected my severe flatback syndrome. I think you can

> relax and know that you are in excellent hands with him. He is a

> very serious, careful surgeon -- " punctilious " might be the word;

> almsot compulsive (something I appreciate in someone who plans to

> operate on my body!)For instance: (1) When I went down to x-ray to

> get the pre-op bending films he had ordered, and was just about

> settling down to work with the X-ray tech, who should suddenly

> appear but -- Dr. Rand! He just wanted to make absolutely sure

that

> the x-rays were done impeccably, exactly as he wanted them, and he

> looked over the technician's shoulder, giving him advice and

> intruction, the whole time. (2) During the anterior portion of my

> revision surgery, Dr. Rand apparently was not perfectly satisfied

> with my positioning on the table. He broke scrub to prop up my

lower

> back with a blanket and some terrycloth towels, thus producing the

> dsirable lordosis I did not yet have naturally, opening my disk

> space, and enabling him to shape the implants he wanted to

introduce

> (more about this in a little bit.)

>

> You should also know that I somehow managed to get my family and

> other " principal players " on board for a 1,000-mile trip from

> Chicago to Boston and then back home to Chicago once more -- just

to

> have surgery with Dr. Rand. At the time I was not familiar with

any

> revision surgeon in my own city. I also considered and contacted

Dr.

> LaGrone in Amarillo, Dr. Boachie in New York, and one or two of

the

> West Coast revision surgeons, but ultimately settled on Rand

> as my best bet.

>

> It is fairly common to do pelvic implants with revisions like

yours

> and mine. Of course the word " implant " can refer to any kind of

> material placed in a patient's body, so I am not sure whether Dr.

> Rand was referring to specific hardware or something else. In my

> case, in addition to using various rods, pedicle screws, and so

> forth, Rand implanted two small, prefabricated " cages " packed with

> graft tissue harvested from my own bone and also with something

> called Bone Morphogenic Material which is said to stimualte bone

> growth. I suspect this is the type of implant he may have meant in

> talking to you about your own surgery. The bone material, held in

> place by the cages, was implanted in the low-lumbar, high-sacral

> area, so it would have been considered pelvic.

>

> I later needed additional revision surgery here in Chicago with an

> equally skilled surgeon I was fortunate enough to find later on,

Dr.

> Ondra. Dr. Ondra had to remove the big pelvic bolts

> (technically, an " iliac wing screw " and an " iliac wing post, " I

> believe), because they had started to cause me pain -- a problem

> other patients were reporting with these bolts when they were

> positioned fairly far forward, but not one that surgeons would

have

> been expected to know about as yet at the time I originally

obtained

> this clunky pair of hardware devices. In the process of improving

my

> sagittal plane correction even more, Dr. Ondra also removed my

aging

> Harrington rod (which Dr. Rand had left and incorporated in his

> revision surgery). Of course Dr. Ondra introduced plenty of new

> hardware of his own, making up for anything he may have removed.

> Through all this -- four additional revisions, actually -- the two

> interesting little cages remained firmly in place, and they remain

> there to this day -- my permanent pelvic implants, courtesy of Dr.

> Rand. (Come to think of it, I probably should give them names --

> what do you think? The " Baptist " Bobbsey twins? Randy and ie?

> <yuck, yuck> <inappropriate giggle or two>

>

> you also wrote one more thing I wanted to comment on:

>

> He wants to do up to three surgeries, and I think it is fair to

> > say

> > > that we have been through a lot

>

> Yes, we certainly have! I hope you are getting the feeling that

you

> have friends and allies at this group who can give you some of the

> help and support that anyone needs and deserves when embarking on

> this very serious revision process. I am wondering if you

> understood Dr. Rand correctly, though, in terms of possibly

needing

> three surgeries. I was very confused about this before my own

> revision, because he used the same kind of terminology with me.

> Actually what he meant was two surgeries -- and Lord knows those

> were major enough, about nine hours each, separated by a week

> between the two of them. The first operative episode involved

> posterior surgery. The second one consisted of anterior surgery

> followed by one final posterior stage. In other words, I

technically

> could be said to have had three surgeries, I guess, but they were

> done in the course of two total trips to the operating room and

two

> instances of general anesthesia. (I hope I'm making sense.)

>

> Thanks so much for sharing your experiences and concerns with us.

I

> hope you will keep posting. I also hope you will take advantage of

> all the resources we have available at our website, e.g., in

> the " Files " and " Links " sections -- all kinds of good stuff about

> preparing for hospitalization and revision surgery.

>

> I still haven't gotten to the episode of the rude or nasty

> secretary, but I can imagine what kind of thing you may have

heard.

> Unfortunately even trained personnel who work in hospitals or with

> doctors and who should certainly know better will utter incredibly

> ignorant and hurtful statements. I could tell you some

> stories . . . . Anyway, if you do not feel this was the kind of

> incident you want to report or otherwise act on, I hope you can

just

> shrug it off and send it packing. As you know, we are the Feisty

> Women (plus several Feisty Gents) -- which means we have many fine

> and self-affirming qualities, including our absolute refusal to

> suffer fools gladly. Now that you are one of us, I hope you will

get

> better and better at blowing off the fools and surrounding

yourself,

> as much as possible, only with people who nourish, nurture,

affirm,

> and support you in every way possible.

>

> Take good care of yourself, , and keep in touch!

>

> Best,

>

>

[Guest guest]

Hi, --

Thank you so much for your very gracious, kind words.

That's great news, that Dr. Rand may be able to do your revision in

fewer installments.

I did spend a week in Jordan Rehab (attached to New England Baptist

Hospital) between my two operations, and again after the second one.

It was really very much like the hospital, very pleasant, with

skilled nursing care -- just not such intensive care as immediately

post op. You can also have a family member sleep in the room with

you while you are there. During both periods I spent in the rehab, I

got very helpful and comprehensive PT. I also liked the food (at

least what I got ordering from the vegetarian menu), which I can not

say with respect to very many hospitals!

I trust that all with go smoothly when you have the myelogram, and

that Dr. Rand will be able to give you more definitive information

as a result.

Mercifully, my migraines began to subside some time in my late

thirties or early forties. But they were fierce -- the classical

type, with raging prodromes as well, involving all kinds of sensory

derangements and sudden panic states (or maybe the panic was from

the other symptoms, such as going totally numb in one arm while

seeing stars and smelling fictitious odors!) At times I had one

every single day, while continuing to go to work, ride the subway,

etc. It sounds as if you are also very high functioning -- attending

school, etc. -- but I do know how challenging this can be with a

migraine problem. It is another one of those afflictions you can not

really adequately describe to someone who has never had one.

I sure hope you can get some help with your own migraines,

especially in connection with your upcoming surgery. This seems like

an important part of your medical history that demands adequate

attention. If doctors and nurses are not taking heed of the problem,

maybe you need to bug them until they do.

Of course you should also feel free to vent at this group if you are

so inclined. We are here for you, even if we are sometimes a little

slow to respond or tardy in getting to the posts or whatever. I'm so

glad you intend to keep us posted. I especially hope to hear about

the myelogram once it is happily behind you.

Take care, , and thanks again for your wonderful post.

As ever,

> >

> > > Oh. Also, has anyone been fused to sacrum with 'implants' into

> the

> > > pelvis?? It sounds so ....much!?

> >

> > Hi, --

> >

> > I have been reading some of your recent posts, and I can

certainly

> > feel for what you are going through. Not having had a myelogram,

I

> > will leave that issue to others and will comment on several of

> your

> > other points.

> >

> > Yes, I was fused to the sacrum in 2001 when Dr. Rand (your

> own

> > surgeon) corrected my severe flatback syndrome. I think you can

> > relax and know that you are in excellent hands with him. He is a

> > very serious, careful surgeon -- " punctilious " might be the

word;

> > almsot compulsive (something I appreciate in someone who plans

to

> > operate on my body!)For instance: (1) When I went down to x-ray

to

> > get the pre-op bending films he had ordered, and was just about

> > settling down to work with the X-ray tech, who should suddenly

> > appear but -- Dr. Rand! He just wanted to make absolutely sure

> that

> > the x-rays were done impeccably, exactly as he wanted them, and

he

> > looked over the technician's shoulder, giving him advice and

> > intruction, the whole time. (2) During the anterior portion of

my

> > revision surgery, Dr. Rand apparently was not perfectly

satisfied

> > with my positioning on the table. He broke scrub to prop up my

> lower

> > back with a blanket and some terrycloth towels, thus producing

the

> > dsirable lordosis I did not yet have naturally, opening my disk

> > space, and enabling him to shape the implants he wanted to

> introduce

> > (more about this in a little bit.)

> >

> > You should also know that I somehow managed to get my family and

> > other " principal players " on board for a 1,000-mile trip from

> > Chicago to Boston and then back home to Chicago once more --

just

> to

> > have surgery with Dr. Rand. At the time I was not familiar with

> any

> > revision surgeon in my own city. I also considered and contacted

> Dr.

> > LaGrone in Amarillo, Dr. Boachie in New York, and one or two of

> the

> > West Coast revision surgeons, but ultimately settled on

Rand

> > as my best bet.

> >

> > It is fairly common to do pelvic implants with revisions like

> yours

> > and mine. Of course the word " implant " can refer to any kind of

> > material placed in a patient's body, so I am not sure whether

Dr.

> > Rand was referring to specific hardware or something else. In my

> > case, in addition to using various rods, pedicle screws, and so

> > forth, Rand implanted two small, prefabricated " cages " packed

with

> > graft tissue harvested from my own bone and also with something

> > called Bone Morphogenic Material which is said to stimualte bone

> > growth. I suspect this is the type of implant he may have meant

in

> > talking to you about your own surgery. The bone material, held

in

> > place by the cages, was implanted in the low-lumbar, high-sacral

> > area, so it would have been considered pelvic.

> >

> > I later needed additional revision surgery here in Chicago with

an

> > equally skilled surgeon I was fortunate enough to find later on,

> Dr.

> > Ondra. Dr. Ondra had to remove the big pelvic bolts

> > (technically, an " iliac wing screw " and an " iliac wing post, " I

> > believe), because they had started to cause me pain -- a problem

> > other patients were reporting with these bolts when they were

> > positioned fairly far forward, but not one that surgeons would

> have

> > been expected to know about as yet at the time I originally

> obtained

> > this clunky pair of hardware devices. In the process of

improving

> my

> > sagittal plane correction even more, Dr. Ondra also removed my

> aging

> > Harrington rod (which Dr. Rand had left and incorporated in his

> > revision surgery). Of course Dr. Ondra introduced plenty of new

> > hardware of his own, making up for anything he may have removed.

> > Through all this -- four additional revisions, actually -- the

two

> > interesting little cages remained firmly in place, and they

remain

> > there to this day -- my permanent pelvic implants, courtesy of

Dr.

> > Rand. (Come to think of it, I probably should give them names --

> > what do you think? The " Baptist " Bobbsey twins? Randy and

ie?

> > <yuck, yuck> <inappropriate giggle or two>

> >

> > you also wrote one more thing I wanted to comment on:

> >

> > He wants to do up to three surgeries, and I think it is fair to

> > > say

> > > > that we have been through a lot

> >

> > Yes, we certainly have! I hope you are getting the feeling that

> you

> > have friends and allies at this group who can give you some of

the

> > help and support that anyone needs and deserves when embarking

on

> > this very serious revision process. I am wondering if you

> > understood Dr. Rand correctly, though, in terms of possibly

> needing

> > three surgeries. I was very confused about this before my own

> > revision, because he used the same kind of terminology with me.

> > Actually what he meant was two surgeries -- and Lord knows those

> > were major enough, about nine hours each, separated by a week

> > between the two of them. The first operative episode involved

> > posterior surgery. The second one consisted of anterior surgery

> > followed by one final posterior stage. In other words, I

> technically

> > could be said to have had three surgeries, I guess, but they

were

> > done in the course of two total trips to the operating room and

> two

> > instances of general anesthesia. (I hope I'm making sense.)

> >

> > Thanks so much for sharing your experiences and concerns with

us.

> I

> > hope you will keep posting. I also hope you will take advantage

of

> > all the resources we have available at our website, e.g., in

> > the " Files " and " Links " sections -- all kinds of good stuff

about

> > preparing for hospitalization and revision surgery.

> >

> > I still haven't gotten to the episode of the rude or nasty

> > secretary, but I can imagine what kind of thing you may have

> heard.

> > Unfortunately even trained personnel who work in hospitals or

with

> > doctors and who should certainly know better will utter

incredibly

> > ignorant and hurtful statements. I could tell you some

> > stories . . . . Anyway, if you do not feel this was the kind of

> > incident you want to report or otherwise act on, I hope you can

> just

> > shrug it off and send it packing. As you know, we are the Feisty

> > Women (plus several Feisty Gents) -- which means we have many

fine

> > and self-affirming qualities, including our absolute refusal to

> > suffer fools gladly. Now that you are one of us, I hope you will

> get

> > better and better at blowing off the fools and surrounding

> yourself,

> > as much as possible, only with people who nourish, nurture,

> affirm,

> > and support you in every way possible.

> >

> > Take good care of yourself, , and keep in touch!

> >

> > Best,

> >

> >

>