Update from Robin...Visit to Hey Clinic...long post sorry

[Guest guest]

Hi again...sorry that it has been so long...our connection here is sooo bad. I

try to read as

many of the postings as I can before I get cut off. Anyway I saw Jaclyn at the

Hey Clinic

(she is very nice, I think she kinda looks like Bridget Fonda) anyway the good

news is that

they do not think I need revision surgery...at least not now. I will quote some

of their

technical findings: Harrington rod in place to L3. Some asymmetric collapse at

L3-4 and

L4-5. Degeneration of both the neck and low back. 60 degrees lumbar lordosis.

MRI LS

Spine: L34, L45 L5S1 facet arthritis/spondylosis with L45 disc degeneration.

She said that the pain in my mid back is likely coming from the hardware but

wouldn't

recommend removing it because the fusion mass could break down. For now she gave

me

a corset type brace to help support my lumbar spine and recommended PT and

cervical

traction, and if that does not help we can explore facet blocks or nerve

cauterization. If

over time the lumbar spine continues to collapse then I may need an extension

fusion. I

could be in the early stages of flatback (naturally I was standing very straight

at the exam

as I do when I am conscious of my posture). She asked Greg if he has noticed me

walking

bent and he hasn't noticed, so I think she has taken me at my word. I only just

started

noticing it myself over the summer when I catch my reflection in a store

window...I think I

look kinda " ape-like " and have to make a conscious effort to straighten up. So

it was

inconclusive as to whether or not I will develop flatback, if I understood her

correctly I am

not at a high risk because the rod does not go all the way down, but the risk is

there. It

was also inconclusive as to whether or not I have marphan syndrome. Cam thank

you for

the article, I will print it out and bring it with me to my next visit with my

primary care

doctor, she is the one that is concerned about my heart. I can explore the

marphan web

page better when I'm back home on roadrunner.

I want to take this time to thank you all again for your warm welcome, advice

and directing

me to the Hey Clinic which was a positive experience ...I was asked if I could

give the

names of the people who recommended the Hey Clinic so they can thank you...Peggy

and

I gave them your names. Special thanks to Cam, Sharon, , Peggy,

Bonnie,

, Kathy & . I hope I didn't leave anybody out.

, Kathy & ...thanks for relating to my pelvis issues, my clothes

twist on me

too...but it happens both top and bottom and dresses are the worst...and as for

the

coming apart feeling, I get that too also sometimes I move funny and I will get

a pain in

my pubic bone that is hard to describe...it's like it almost split apart on

me...split right

down the middle! As for the bone widening question...I do not know the answer,

we did

not get very much into my pelvis issues during the exam, there was just so much

to

discuss about my spine. Also I did not have any of my past x-rays with me. At

present I

weigh the most I've ever weighed (around 137) and most of that is carried in my

hips, but

about six years ago I went through a rough time and weighed around 108 and I

still felt

that my pelvis has changed a lot since I weighed about 105 when I had my surgery

at 17.

We all know our bodies and I felt a difference after surgery and I felt my hips

gradually

widening over the years before weight changes came into play. I have never had

children,

so I guess I was just curious as to whether this is related to Scoliosis and

being fused or

just something that happens to all women or maybe all tall women (bone settling

etc.) It's

just that I walked sooo different after my surgery that I always theorized that

the changes

in my gait have changed my shape (I've had a lot of theories over the years

because of my

isolation with this disease). I know at least from reading postings that I'm not

alone with

the hip pain, I feel like my hip joints have to work so hard when walking, I

also still have

pain where they took bone and sometimes it still itches.

But anyway to move this along...we are on our way back to NY April 1st. where I

will

establish myself with a physical therapist and hopefully get set up with the

cervical

traction (my insurance is being difficult on that). For most of the month of

April I will be on

a farm in Schenectady with no internet connection...and no cable...I wish I

could be using

that time to explore this forum more. In May we will be getting settled in for

the summer

in Old Forge with our Roadrunner connection and a much more comfortable chair. I

shutter to think about how much I will have to catch up on in postings by then

but it will

be such a relief not to constantly lose my connection.

So in conclusion I have had to finally give up on my unrealistic fantasies of

having my rod

taken out and somehow magically feeling like I have my old body back the way it

was...it's

sooo hard to remember what it felt like to arch my back. I want to stretch and

twist and

bend...I can imagine my spine popping and cracking with small explosions of

pleasure...I

honestly don't have the words for how I've built that fantasy up in my head.

Jaclyn had this

life size model of a spine that moves...I picked it up and moved it around and

told her this

is like one of my fantasies...to step outside of my body and just straighten my

spine out.

My visit with Jaclyn was very informative and it never really occurred to me

that it was not

the rod that is keeping me immobile...that the vertebra would still be all fused

together

even if I had the rod removed...I guess I should have realized that...my surgeon

was so

cold and impersonal...I have been so uneducated and in the dark.

On the flip side as much as I have wanted this rod removed I have been equally

terrified of

having surgery again and it has been a great weight lifted off my shoulders that

I'm not in

imminent danger of having to have surgery again...and it is not a " given " that I

will have to

have revision surgery...only a possibility. I have most of the answers that I

was looking

for...arthritis and degeneration are not good words to hear for someone who is

only just

about to turn 40...and this asymmetric collapse business does not sound

good...but I

knew there had to be an explanation for my pain and at least I have

validation...at least

there's that...I will never let anyone try to make me feel like it's in my head

again.

I wish though that I had a clearer understanding of why the pain around the rod

hurts so

bad though. Jaclyn said that a percentage of patients report pain from the

hardware...but I

wish I knew why, because that pain is getting worse especially around the top of

the rod (I

have read some of you describing similar pain), my surgeon always tried to

convince me

that it was not possible that I was feeling pain from the rod or that I could

feel the rod at

all, he said I was imagining it. I am confident that the physical therapy will

help with my

neck and low back issues but nothing ever seems to help with the rod pain

(except of

course the narcotics but they make me sick)...it's like a toothache thats always

there. I

know on a certain level it's all moot, because the rod can't come out. Jaclyn

said if they

were to open my back it would look like the rod was incased in porcelain do to

all the

bone that has grown around it, that to remove the rod would require chipping

away at all

that bone and could jeopardize the fusion, and if I am understanding everything

correctly

the disease could progress...if I understood her correctly it is the diseases

progression

that is causing the asymmetric collapse, because normally in a case like mine

they would

have brought the rod down lower but by that time they were aware of the risks of

flatback

and that's probably why they did not bring the rod down so far. It will never

cease to

amaze me that I was never warned about these things by my surgeon. Someday I

will have

to sit down and tell my full story (maybe that is something I can peck away at

when I'm on

the farm...I don't know how much my whole story could help here since I'm not

actually a

flatback/revision recoveree...but if somebody wants to hear about what another

harrington

rod patient went through circa 1986...well maybe that will make someone else

feel less

alone)

But anyhow I would like to get settled in at home and learn how to better

navigate the

forum and get to know you all better since this is the first I have been able to

talk to

people like myself. It just seems like there are so many more questions I want

to ask and I

have to keep stopping myself from writing this book, also I want to be able to

just chime-

in on some of the postings but I can't seem to reply, I will try to figure all

that out when I

have a better connection...I'm writing this off-line so I can paste it without

losing anything.

I just wanted to let you all know how I made out, that I didn't quit and thank

you all again

for your help.

So good bye for a little while...I have to make the most out of this last week

of beach-life

before heading back to the north-country...driving home every April is like

watching

spring going in reverse, there will be Daffodils at the first rest-stops...then

just buds at

the next...leafy trees behind and barren trees ahead...green turns to brown and

finally that

dreaded white stuff...back on goes the winter coat. Loved ones who are glad to

see me tell

me how great and tan I look but within a couple of weeks I'm just as pasty as

everyone

else and in my cold and achy misery it feels like my time here was just a dream.

I wish you

all better days ahead and a Happy Spring! Warmest Regards, Robin

P.S. in regards to celebrities with Scoliosis...I always did think

Gellar had

it...I noticed someone listed her name. I used to watch Buffy and I could

recognize it at

certain angles...you know...when ever we look at ourselves in one of those three

way

mirrors in the dressing room...that's when I see it the most...I think " is it

that noticeable?

or am I just more aware? "