First Appointment

[Guest guest]

I am a little confused about you having a MRI. I too have Harrington

rods and was told that having a MRI on my back would be a waste of

time since the rods make a huge glare on the pictures. I have had a

lumbar CT, which showed my fractured pedicle, a myelogram CT, and of

course numerous x-rays. I would ask about having that MRI and if the

discs that you are concerned with will show up.

I too suffered from lots of migraine headaches. Since my revision

surgery, I am glad to say that I have had minor ones and few full-

blown. I believe that they are caused from my back. I have never

spoken to my surgeon about this, but my headache doc thinks that it

does have some effect on them.

I wish you luck in your search for a doc. I don't know who either

one of these docs are so am not able to give you any advice. I hope

that you will find the help that you need. I know how difficult that

road is and I believe that none of us will ever get a " rest stop " on

it.

Good luck

Sally

> Hi, all! I had my first appointment to look into all this pain

> caused by my initial surgery (harrington rod 1989, T3-L4). I saw

Dr.

> Booth in Pleasanton, CA. While I had liked him in person in another

> situation, I was less pleased in the little exam room. He is very

> nice, heard my initial complaints, but left little time to go over

> the rest of my questions. I felt a bit railroaded, but got some

> info. Apparently my balance is still ok, but there is some question

> about the discs below the fusion (L5-S1). I will have an MRI and go

> back for follow up. He did not seem to think that former problems

> with SI joints and current headaches had anything to do with the

> scoliosis, nor did I get to tell him about the increasing leaning

> forward while I sit, tailbone pain, etc. I am inclined to think the

> headaches have to do with the leaning and tailbone pain, however,

as

> I can 'trigger' a headache by leaning forward while seated.

>

> My question for you all, Feisties, is how can I be a better

advocate

> for myself?? I'm thinking I will get the MRI - good to know what's

> going on with the discs, especially since I concur that most of my

> pain is localized that low. But I'm wondering about continuing to

> shop around for someone to even have these conversations with. I'm

> thinking about Dr. Serena Hu, since she's local and folks here have

> had good things to say about her.

>

> Thanks!

>

> Deb M.

[Guest guest]

Hi again, Deb.

A second (or third!) opinion is definately indicated for this type of condition.

While I am in no way qualified to diagnose you, I can tell you that the symptoms

you mention are common to flatback sufferers. I don't have the experience of

being able to trigger a headache by leaning forward, but have had SI joint pain,

and often get the tailbone pain, and lean forward quite noticeably (I can sit

fairly comfortably with my elbows and forearms on my lap).

So it may be that your sagittal balance is within the parameters that this

particular doctor considers normal, but your body is sensitive enough to be

affected by a lesser imbalance.

The spine specialist (non-surgical) who diagnosed my hip flexion contractures

and confirmed my flatback self-diagnosis, insisted there's nothing wrong with my

knees (after a cursory examination), and said I should do Stairmasters. Sorry,

but I'll believe my body before I believe some (highly placed and respected)

idiot who doesn't live in my body. If I did Stairmasters, or even climbed

stairs in the normal way, I'd be on crutches, and then my friend the doctor

would be only too happy to refer me to his buddy the high-priced knee

specialist!

NOBODY knows your body the way you do. You HIRE physicians to help maintain it,

as you hire mechanics to care for your car.

I'll get off my soapbox now.

:^)

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

first appointment

Hi, all! I had my first appointment to look into all this pain

caused by my initial surgery (harrington rod 1989, T3-L4). I saw Dr.

Booth in Pleasanton, CA. While I had liked him in person in another

situation, I was less pleased in the little exam room. He is very

nice, heard my initial complaints, but left little time to go over

the rest of my questions. I felt a bit railroaded, but got some

info. Apparently my balance is still ok, but there is some question

about the discs below the fusion (L5-S1). I will have an MRI and go

back for follow up. He did not seem to think that former problems

with SI joints and current headaches had anything to do with the

scoliosis, nor did I get to tell him about the increasing leaning

forward while I sit, tailbone pain, etc. I am inclined to think the

headaches have to do with the leaning and tailbone pain, however, as

I can 'trigger' a headache by leaning forward while seated.

My question for you all, Feisties, is how can I be a better advocate

for myself?? I'm thinking I will get the MRI - good to know what's

going on with the discs, especially since I concur that most of my

pain is localized that low. But I'm wondering about continuing to

shop around for someone to even have these conversations with. I'm

thinking about Dr. Serena Hu, since she's local and folks here have

had good things to say about her.

Thanks!

Deb M.

[Guest guest]

Sharon,

I cringed when I saw you mention your hip flexion contractures since

my right one was so bad and painful before I had my hip replaced. I

am really anxious to go back to my spine OS and have another sideway

x-ray taken to see if my sagittal balance was affected (positively)

by my hip surgery. I still lean forward due to my flatback

syndrome, especially as the day wears on, but at least there are some

times when the back of my leg actually touches the bed I'm lying on.

It's a constant effort for me to try to prevent it from getting

worse, though.

May I ask -- How bad are your flexion contractures?

loriann

[Guest guest]

I don't really know, Loriann. I have been working on my own to try to stretch

them out, and for some reason, probably related to exercise, I can now lie on my

back with legs outstretched for a while without hurting my sacroilliac joints.

My great suspicion is that these so-called contractures are the result of the

pelvis being tilted by the loss of lumbar lordosis to the point where just

achieving (or approaching) a180 degree straight line extends the legs backward

in relation to the pelvis as far as they would normally be able to go. If that

makes any sense. In other words, it isn't just the hip flexors being tight that

prevents the legs from being able to kick backward, but the whole

musculoskeletal make-up of the pelvic region.

I'm no kinesiologist or anything, so I may be all wet. I just know how my body

feels, and it's gotten so extending my body to something approaching upright or

flat on my back feels kind of like doing a back-bend. Remember back-bends?! I

used to do those!

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Re: first appointment

Sharon,

I cringed when I saw you mention your hip flexion contractures since

my right one was so bad and painful before I had my hip replaced. I

am really anxious to go back to my spine OS and have another sideway

x-ray taken to see if my sagittal balance was affected (positively)

by my hip surgery. I still lean forward due to my flatback

syndrome, especially as the day wears on, but at least there are some

times when the back of my leg actually touches the bed I'm lying on.

It's a constant effort for me to try to prevent it from getting

worse, though.

May I ask -- How bad are your flexion contractures?

loriann

[Guest guest]

Sally,

I've had an MRI on my entire spine and my brain. My Harrington Rods

obliterated the image of the parts of my spine that have the rods (T5-

sacrum) but it was useful at seeing the cervical and upper thoracic

spine. Next time I have one done, they aren't going to bother

imaging the lumbar spine.

Hope this helps,

loriann

[Guest guest]

Thanks Terry, I was planning on finding-out that information.

So much to consider-/-learn about.

[Guest guest]

I don’t recall what we know so far

about your situation. But these are the steps I would take.

1. test positive

for hcv antibodies – I am assuming that you

have passed this point.

2. test postitive for virus – find out what genotype and

viral count (PCR test)

3. liver biopsy

to find out what if any damage the liver has sustained to date.

4. discuss

treatment. Any other

medications/medical problems that would interfere with the treatment

What tests have you had so far?

[ ]

First Appointment

I am going for my first specialist appointment on Jun.

17'th.

Get all the (more) blood-tests etc....

Hopefully I'll be 'allowed' to start treatment

pretty soon after all the

new info is returned.

Any advice or recommendation/s about what to

say-/-ask the doctor when I

go?

Ill be sure to let Y'all know how things go, when

I find out any new

info.

[Guest guest]

I have so far not seen a specialist about this.

I had one'preliminary-positive' test, then a RIBA to " confirm " the

initial positive.

I've had (most recently) a RIBA test that showed positive to all 4 HCV

proteins,....scale goes from 0-to-4 on each,..... my readings are at 4

for all of them.

I don't know if the RIBA test can be used to determine viral-load.

I have had no other tests related to HCV at this time, after Jun

17,...yes, I'm sure that I will.

I'll be sure and let Y'all know how it goes, when I get any new info.

[Guest guest]

I've also had an ultrasound that turned-out " normal " .

It states:

" Liver: Normal size and echogenicity; no focal hepatic lesions seen. "

So, at least it 'seems' that any liver-damage that I may have isn't

'so-pronounced' that it can be seen on an ultrasound,.....so, that's

good news !

[Guest guest]

I am not familiar with that RIBA test. It’s

been a couple of years, I’m sure there have been changes. I just went

from the discovery of the antibodies to the PCR test, which measures the viral

load. –dz-

[ ] RE:

First Appointment

I have so far not seen a specialist about this.

I had one'preliminary-positive' test, then a RIBA

to " confirm " the

initial positive.

I've had (most recently) a RIBA test that showed

positive to all 4 HCV

proteins,....scale goes from 0-to-4 on each,..... my

readings are at 4

for all of them.

I don't know if the RIBA test can be used to

determine viral-load.

I have had no other tests related to HCV at this

time, after Jun

17,...yes, I'm sure that I will.

I'll be sure and let Y'all know how it goes, when I

get any new info.

[Guest guest]

That’s a good sign. I had mild inflammation

(slightly enlarged) and no fibrosis at the time I had my biopsy. They didn’t

do an ultrasound, or at least not as a diagnostic. They did an ultrasound to

help guide them on the biopsy. –dz-

[ ] RE:

First Appointment

I've also had an ultrasound that turned-out

" normal " .

It states:

" Liver: Normal size and echogenicity; no

focal hepatic lesions seen. "

So, at least it 'seems' that any liver-damage that

I may have isn't

'so-pronounced' that it can be seen on an ultrasound,.....so,

that's

good news !

[Guest guest]

Thanks , I'll look-around and see what other info I can find about the RIBA

test. :-)

> That's a good sign. I had mild inflammation (slightly enlarged) and no

> fibrosis at the time I had my biopsy. They didn't do an ultrasound, or

> at least not as a diagnostic. They did an ultrasound to help guide them

> on the biopsy. -dz-

>

> [ ] RE: First Appointment

>

> I've also had an ultrasound that turned-out " normal " .

>

> It states:

> " Liver: Normal size and echogenicity; no focal hepatic lesions seen. "

>

> So, at least it 'seems' that any liver-damage that I may have isn't

> 'so-pronounced' that it can be seen on an ultrasound,.....so, that's

> good news !

>

>

>

>

>

>

[Guest guest]

lWell, I had my first appointment Jun. 17 with a gastroenterologist.

Pretty-much what I expected, he ordered a PCR and one other blood-test (I don't

remember what t was), but I 'think' that it had to do with genotyping the strain

that I've been exposed to.

So far, the doctor hasn't told me anything I ddn't already know, thanks to this

group, the group-links page,...etc.

I 'should' have the results of my current blood-tests by Wed. (or-so).

I'll be sure and relate what the results turn-out to be after then

Thanks for the forum to learn, " talk " , and VENT into ! :-)

I'm sure that I'll be venting PLENTY after starting treatment ! ?

[Guest guest]

Second (and third) opinions are always a good idea. I never used to think this way, but experience has made me wise. I think the time and cost investment of making sure the diagnosis is truly accurate is very sensible.

When I recently got a CToma diagnosed in my right ear, I was initially told by the first surgeon that I would probably need 3 surgeries. If I had not been through the process before, I might have just gone with that advice without double checking. I'm glad I did.

Good luck on Wednesday!

From: nujerseygirl <nujerseygirl@...>Subject: First Appointmentcholesteatoma Date: Friday, June 13, 2008, 3:45 PM

Hi Everyone,Well my first appt. with a surgeon proved that all your hints weren'twasted and I doubt this will be the surgeon for me.He was quite vague and truly gave me no info as to the severity or aprobable treatment plan with follow-ups. Only said he'd go in andclean it out. Thought there might be 'something else" also going onin the ear. Not very confidence building. I had decided to at least give this doctor a try as he is locatedwithin a half hour of me and was recommended by my ENT. I think I amactually more confused than when I walked into his office.The hopefully good news is that he does not see the extensive bonedamage that he feels is usual. On the other hand, the Cat-scan reportdid say that two of the three bones were erroded....so it's to be seenwhat is going on.Have appts. with Dr. Parisier Wed.am and Dr. Storper Wed. afternoon. May change one of these but going into

the city only once seems doable.Thanks all, you made the day easier.

[Guest guest]

So we had our first appointment today. It went pretty well. Dominick (my son)

is definately a candidate as his head measurements were not too good. My

husband did come with me and I think he is finally accepting and dealing with

the fact. He is now also excited about decorating the helmet I am very

excited, anxious and nervous about getting the process started. They told me

that he should have the helmet within 2 weeks. They try to get 5-6 month olds

in them within 2 weeks. We go back next week for the scan thingy. Thank you

all for your responses. After this appointment today I feel so much better.