Re: Multiple family members with scoliosis surgery?

[Guest guest]

Llweyn,

Thanks so much for your response. Can you give me an example of the kinds of things you were thinking of when you made the comment below about helping family members to understand? Thanks so much!

~Carolyn

In a message dated 8/29/06 11:59:49 A.M. Central Daylight Time, mad.monk@... writes:

The only thing I can suggest in helping your family relate is to put it in their terms and experiences, then compare it to your situation.

[Guest guest]

You're not the only one, Carolyn. I have 4 brothers, and I'm the only one who had severe scoliosis. Only one brother has some idea, and he has Cerebral Palsy plus surgery on his lumbar spine for two vertebras that didn't connect. He has since developed a mild case of scoliosis, which is not uncommon for those in wheelchairs, from what I've read. Since my 89-year old mother and my CP brother live in the same area, I'm the only one that caregives for them. I have one other brother that comes out 2-3 times a year for a weekend, between visiting clients, so that's a little help. I only recently discovered a distant cousin who has scoliosis and that was doing family research. My husband and adult daughters try to understand, but they can only imagine what I'm going through so they try to support me.

This board, and a few others that I belong to, are the only places where I don't feel so alone. Everyone's situation is different but there is a lot in common at the same time. The only thing I can suggest in helping your family relate is to put it in their terms and experiences, then compare it to your situation. That is how I got my family and manager at work to understand, to a point, my situation. They still won't get the whole picture, but they will have a better idea.

Llweyn

From: [mailto: ] On Behalf Of StillGen@...Sent: August 28, 2006 10:35 PM Subject: Multiple family members with scoliosis surgery?

Is it just me, or am I the only one who comes from a large family, yet I seem to be the only one who has ever had a severe case of scoliosis? Well, actually, my mother has a severe case, but she never had surgery for it. She is 86 years-old now, and requiring more and more assistance. I have three sisters who are basically very healthy, and I don't think they really understand how I can have so many health problems, including those related to scoliosis. Same thing with my two college-student kids. Anyone else experience these things? I kind of feel like the lone ranger in my family. Not that I would wish any of this on anyone, but it just makes it hard for the rest of the family to relate to me sometimes, you know?

~Carolyn

[Guest guest]

I think I have felt some of what you are feeling, Carolyn. Some of us have parents or children who have needed scoliosis surgery, but many of us are the "lone family member" who got stuck with scoliosis and flatback syndrome. In my case, a couple of my aunts may have had mild, undiagnosed scoliosis, but no one I know of in my immediate family ever needed a spinal fusion, let alone revision surgery. Of course I would not wish this stuff on anyone, but it can get a little lonely at times. And yes, it is very hard to get some people to understand the first thing about your condition. Both in and outside my family, I have had to do lots of informal "educating." At this point I am used to people who know nothing about scoliosis or flatback syndrome -- or who, worse yet, think they know something when they do not. Earlier in my "flatback epoch," I was often flabbergasted by some of the

responses I got. Not long after my 18 hours of revision surgery with Dr. Rand, for instance, a well-meaning neighbor dropped over to see if she could help out. I had come home to Chicago a little too early and was having some complex and unexpected post-op problems; my spirits were low and my body was truly hurting. This woman counseled me confidently that I should (1) be sure to seek help from a chiropractor, since chiropractic is far preferable to surgery, and (2) read the works of Dr. Sarno, who explains clearly that back problems result from emotional problems or conflicts. (When I finally did get around to browsing through a book by Sarno, I learned that he specifically exempts back problems like ours from his "psychological" analysis. I still have not figured out how he cures patients with back pain using his own brand of counseling or psychotherapy to unearth their underlying emotional conflicts -- especially considering that

his only medical specialty appears to be orthopedics.) Before my revision, I actually had to put up with a whole chorus of well-meaning voices entreating me to consult this or that genius-chiropractor. One acquaintance urged me passionately to consult his own "network chiropractor," even if this required flying from Chicago to New York for an appointment. (I later learned from the widow of a very skilled and cautious chiropractor, much respected in his field, that "network chiropractic" is apparently considered questionable and even unsafe -- but the guy who wanted me to get it just knew it was a miracle-cure for anything that might ail you. I think he felt it had cured his ulcer.) What can you do in the face of such laughable yet dangerous incomprehension of your actual diagnosis and the treatment that qualified specialists have recommended? I

guess just keep on explaining what is wrong and what is needed to make it better -- what you have learned from the most reputable and knowledgeable MDs concerning your spine. Try to be patient (easier said than done, for sure). If people are just stubborn fools who make a profession of handing out unsolicited opinions and advice, you may prefer to steer clear of them. If they are members of your own family-- people you love whose support may be invaluable, even crucial -- all you can do is keep at it: Without pressing the point too insistently, keep on correcting their misconceptions or calmly repeating the actual facts to them whenever the subject arises. If you are not overtly, visibly deformed -- as I was by the time I finally went into my first revision procedure -- it sometimes helps to show people one of your x-rays. (Even before I collected some of the newer hardware, I found that

my Harrington rod was an extremely dramatic sight to most people who had never seen one before, including one or two physicians.) Maybe you could get a family member to accompany you to the doctor and hear an expert opinion firsthand. Or maybe you could share some books, articles, or informational websites you have found helpful. In my experience, it is a plus whenever you can nudge the people you need into a more intimate involvement with your situation. My own closest family members have been with me in the Surgical Intensive Care Unit and have sort of "lived through" some of the surgical experience, at least vicariously. If your sisters have been there to chat with the surgeon and see how you look coming out of the Recovery Room -- if they have stuck around to help you find the morphine button or to advocate for you with the occasional cranky, misguided, or overzealous hospital staff

member -- they may have a somewhat more accurate and realistic perspective on your situation, as well as a sense of family solidarity that comes from being "down in the trenches" with you, so to speak. If your family has been through this ordeal with you and still has minimal empathy, they may be somewhat hopeless!--just totally self-centered, or massively preoccupied with overwhelming problems in their own lives.Or, if you'll excuse me for emulating Dr. Sarno, maybe they are using some powerful psychological defenses to cope with your plight. I would think that at some level, anyone who encounters one of us has to be thinking, "Good grief, if this could happen to her . . ." Many of us were very active, high-achieving people before our flatback took hold and disrupted our lives to a greater or lesser degree. It has to be tough for people who love us to come to

grips with our new reality. It is probably human nature for others to try and minimize the changes we are going through, as well as any impact these changes could (or should) have on their own lives If someone who is especially close to you were to face the reality all at once, she might have to deal with an intolerable load of anxiety and worry -- focused not only on your own situation and her concern for you, or on some resulting change in her own responsibilities toward you, but also on her own potential vulnerability. You are a vivid reminder that fate is random and can be rugged; that anyone who lives in a physical body may at any time fall prey to trauma, pain, or disability. Of course you need and deserve all the empathy you can get, and I am sorry if this is not yet forthcoming from your family. As frustrating and upsetting as it may be to put up with their lack of

understanding, you may just have to give them a little more time. Too bad you and I have no choice -- we have to face our problems head on -- while others have the luxury of believing (or pretending) that it isn't really that bad . . . . I wish I had more advice for you, Carolyn. I know this is a delicate and difficult situation, and you can feel awfully alone at times. I also know that I am counseling tolerance and patience toward others at a time in your life when this is exactly what you most need from them. If nothing else, please remember that you can always unload on this group. We've been there. Though none of us can ever know exactly how it feels to live inside your skin -- because you are singular, unique -- I believe many Feisty members do understand much of what you have endured with respect to spinal

deformity and surgery. In fact, your post reminded me that another group I belong to -- for people with implanted pain-pumps -- regards itself as family, since there are relatively few "outsiders" who know the amazing array of problems, pitfalls, emotions, etc., which can arise with respect to "The Pump." Maybe, similarly, you can regard the Feisty group as a kind of second family -- someone or something to fall back on when the people in your offline life don't seem to have a clue! Best,

[Guest guest]

Thanks so much for your thoughtful and touching comments on this subject, . Your remarks brought tears to my eyes!

One of my doctors told me today that she thinks I am pushing this thing too much about going back to work. She said it seems as if I am being pressured into it. That's true...I am..I am being pressured by the people in my life who are experiencing what they call "compassion fatigue," and because of my own frustration with having to live in poverty!

~Carolyn

[Guest guest]

I have a child (now 9) with scoliosis and, like mother like

daughter, she will most likely need surgery. While it is great that

she has someone who has been there and done that, I did not. My

wonderful (gag) mother in law swears it is the shoes I let her wear

as a baby and that I somehow curved her spine as my parents must

have done to me. It is so amazing how every one knows exactly what

is wrong with my back and if I just follow their directions my

daughter and I would be " healed " .

When My daughter was getting physical therapy the therapist told her

(she was 6 at the time) that if she just did the exercises that she

would not be " crooked " any more. This infuriated me because I was

told the same thing and I did the exercises as a very young girl and

they did nothing. For years my parents were told " if she would stand

straighter " " If she had better posture " " If she would stop

slouching " and they made it seem as though I did it to my self.

I get really annoyed when I say scoliosis and people go " I have that

too " and act like mine is some how less of an issue because they

were told they have a slight touch of scoliosis at the age of 13.

They think my surgery was a knee jerk reaction to a minor unoticable

issue. Even when I try to explain that major scoliosis at 6 is WAY

different than minor scoliosis at 12 and 13. They still don't get

it.

My husband and children are very understanding and very supportive

so at least now I am surrounded by those who care and at least

attempt to understand which means so much to me since I am just a

few weeks out of revision and doing GREAT.

Jolynn

[Guest guest]

Jolynn,

That annoys me too! My sister-in-law has very very slight scoliosis

and when I mentioned that I was nervous about a possible epidural

during childbirth (we were preg at the same time), she went on & on

about how she would refuse one because she knows they will never find

the right spot because of the curves in her back (they're almost

immeasurable). And she always went on about how the pregnancy made

her back hurt so much more than normal because of the curves. I knew

this all myself!! Pregnancy backpain is hard for a lot of women, and

adding in scoliosis doesn't help. I didn't want to make it sound like

I was demeaning her pain, so I never said anything about it. But it

really irked me that whenever I commented on my back pain she would

jump right in about her scoliosis!

Speaking of pregnancy, I am curious if anyone here had problems with

carrying their babies fullterm? Both of my girls came about a month

early. My " personal " theory is that they came early because they

didn't have any more room inside me to grow. My curves were corrected

to only about 55-60 degrees each, and my ribcage sits almost on top of

my pelvic bones. I can't imagine going the whole nine months, I felt

I could hardly breath at 8 months! Minutes after pushing out my

second one, I still remember the feeling of taking a deep breath - it

was wonderful

> I get really annoyed when I say scoliosis and people go " I have that

> too " and act like mine is some how less of an issue because they

> were told they have a slight touch of scoliosis at the age of 13.

> They think my surgery was a knee jerk reaction to a minor unoticable

> issue. Even when I try to explain that major scoliosis at 6 is WAY

> different than minor scoliosis at 12 and 13. They still don't get

> it.

>

> Jolynn

>

[Guest guest]

> Speaking of pregnancy, I am curious if anyone here had problems with

> carrying their babies fullterm? Both of my girls came about a month

> early. My " personal " theory is that they came early because they

> didn't have any more room inside me to grow. My curves were

corrected

> to only about 55-60 degrees each, and my ribcage sits almost on top

of

> my pelvic bones. I can't imagine going the whole nine months, I

felt

> I could hardly breath at 8 months! Minutes after pushing out my

> second one, I still remember the feeling of taking a deep breath -

it

> >

>

HI

My firts child was 9 pounds 4 OZ and I ran out of room for her at 7

months gestation at which time I had to go on an all liquid diet

because there was NO ROOM for food. Having a torso the size of an

11year old and having a large baby made for some uncomfortable times.

The second one my bladder went in the wrong direction and was in a

postition that due to lack of room I had to push it out (held in by my

vaginal wall of course) before the baby came out. When I discoverd

this issue I was 6 months and felt a huge bulbous thing when I was

going to the bathroom. I thought I was having the baby. AT birth we

ended up not having any issues I think because I was on my back but

during the pregnancy it was right at the front (or bottom). That baby

was 8 pounds 11oz and both babies were delivered 2 weeks early.

Yes I do think that not only is it rough with the baby you also have

to think that your full adult height is comprimised but your organs

are going to reach the size for that full adult and not the shorter

one you ended up being. I theorize alot about my and my daughters

condition.

Jolynn

[Guest guest]

Wow Jolynn!

My babies were 5lb 10oz and 5lb 3oz. I absolutely cannot imagine

having a baby as large as yours were! Carrying them, or pushing

them out And that's interesting that your first was so big even

though you were on a liquid diet. Did you have any permanent

problems with your bladder after having your second? I hope not,

that sounds awfully scary.

>

>

> > Speaking of pregnancy, I am curious if anyone here had problems

with

> > carrying their babies fullterm? Both of my girls came about a

month

> > early. My " personal " theory is that they came early because

they

> > didn't have any more room inside me to grow. My curves were

> corrected

> > to only about 55-60 degrees each, and my ribcage sits almost on

top

> of

> > my pelvic bones. I can't imagine going the whole nine months, I

> felt

> > I could hardly breath at 8 months! Minutes after pushing out my

> > second one, I still remember the feeling of taking a deep

breath -

> it

>

> > >

> >

>

> HI

>

> My firts child was 9 pounds 4 OZ and I ran out of room for her at

7

> months gestation at which time I had to go on an all liquid diet

> because there was NO ROOM for food. Having a torso the size of an

> 11year old and having a large baby made for some uncomfortable

times.

>

> The second one my bladder went in the wrong direction and was in a

> postition that due to lack of room I had to push it out (held in

by my

> vaginal wall of course) before the baby came out. When I discoverd

> this issue I was 6 months and felt a huge bulbous thing when I was

> going to the bathroom. I thought I was having the baby. AT birth

we

> ended up not having any issues I think because I was on my back

but

> during the pregnancy it was right at the front (or bottom). That

baby

> was 8 pounds 11oz and both babies were delivered 2 weeks early.

>

> Yes I do think that not only is it rough with the baby you also

have

> to think that your full adult height is comprimised but your

organs

> are going to reach the size for that full adult and not the

shorter

> one you ended up being. I theorize alot about my and my daughters

> condition.

>

> Jolynn

>

[Guest guest]

No bladder problems at all, but they were expected. The DR had

a " Donut " standing by the hold my insides inuntil they could

reattach them. A donut is and inflatable donut shaped thing they put

in after to hold things up.

He and I were both shocked and happy that it was not needed.

It wasn't too bad havign them even though they were natural I think

it is all the same wheather big or small with the pushing. I was

drinking ensure which is very high in caleries but I also think I am

just a big baby having person. No more for me though. I am glad to

be done.

Jolynn

> >

> >

> > > Speaking of pregnancy, I am curious if anyone here had

problems

> with

> > > carrying their babies fullterm? Both of my girls came about a

> month

> > > early. My " personal " theory is that they came early because

> they

> > > didn't have any more room inside me to grow. My curves were

> > corrected

> > > to only about 55-60 degrees each, and my ribcage sits almost

on

> top

> > of

> > > my pelvic bones. I can't imagine going the whole nine months,

I

> > felt

> > > I could hardly breath at 8 months! Minutes after pushing out

my

> > > second one, I still remember the feeling of taking a deep

> breath -

> > it

> >

> > > >

> > >

> >

> > HI

> >

> > My firts child was 9 pounds 4 OZ and I ran out of room for her

at

> 7

> > months gestation at which time I had to go on an all liquid diet

> > because there was NO ROOM for food. Having a torso the size of

an

> > 11year old and having a large baby made for some uncomfortable

> times.

> >

> > The second one my bladder went in the wrong direction and was in

a

> > postition that due to lack of room I had to push it out (held in

> by my

> > vaginal wall of course) before the baby came out. When I

discoverd

> > this issue I was 6 months and felt a huge bulbous thing when I

was

> > going to the bathroom. I thought I was having the baby. AT birth

> we

> > ended up not having any issues I think because I was on my back

> but

> > during the pregnancy it was right at the front (or bottom). That

> baby

> > was 8 pounds 11oz and both babies were delivered 2 weeks early.

> >

> > Yes I do think that not only is it rough with the baby you also

> have

> > to think that your full adult height is comprimised but your

> organs

> > are going to reach the size for that full adult and not the

> shorter

> > one you ended up being. I theorize alot about my and my

daughters

> > condition.

> >

> > Jolynn

> >

>

[Guest guest]

Carolyn, I can't tell you how much it meant to me to read your kind

words regarding my last post to you. Sometimes I send my posts

out " into the the great beyond " -- the Feisty stratosphere -- and

wonder if they ever " arrived. " It is so nice when someone takes the

time to acknowlege a post. Especially when I gave the post a good

bit of time and thought because I really felt the need to respond

usefully to the person's question or issue.

Maybe I am just a little sensitive lately -- I have more empathy

than ever for members who have sometimes writtten to ask, like the

soldier in those old U.S.O. ads, " Does anybody know I'm here? " That

is, how they should interpret the fact that no one answered their

question or wrote anything at all in response to something of

importance which they posted at this forum. I guess this occasional

silence or absence-of-a-response is just an " occupationl hazard "

when you post at a group like this one -- lots of members,

relatively few posters )vs. " lurkers " ), people who feel good and up

to posting some days but who then may need to take long breaks from

the group because of their physical variability. Still, it means so

much when you do get back to the group and find that someone has

taken the time to acknowledge you. Your post positively uplifted me,

and I am grateful.

Ah, yes, my old friend and good buddy Poverty -- how well I know its

pressure! I have been struggling for much of the past eight or nine

years just to keep my head above water, get the rent paid, etc. It

is such a shock to face life without a salary -- to have to budget

for everything out of a very limited fixed income. I can certainly

identify with any fiscal (dis)stress you may be feeling these days.

Still, I truly hope you will not have to resume work before you are

feeling fully up to it -- that you can ease into it and avoid

excessive demands on your resources as you continue to recover from

what is, let's face it, bigtime, major surgery.

I will have to go back over some of your posts and refresh my memory

as to your exact situation. I do not know offhand if your work is

the kind that might potentially allow you to adjust your schedule to

your level of recuperation, or perhaps " telecommute " from a nice

reclining chair at home. No doubt your boss is the major factor --

i.e., whether he or she can be supportive and flexible. open to some

negotiation and compromsie if you neeed this post op.

In any case, Carolyn, take specially good care of yourself, and

don't take any nonsense from anyone! And thank you again for your

very gracious and encouraging post.

Best,

>

> Thanks so much for your thoughtful and touching comments on this

subject,

> . Your remarks brought tears to my eyes!

>

> One of my doctors told me today that she thinks I am pushing this

thing too

> much about going back to work. She said it seems as if I am being

pressured

> into it. That's true...I am..I am being pressured by the people

in my life who

> are experiencing what they call " compassion fatigue, " and because

of my own

> frustration with having to live in poverty!

>

> ~Carolyn

>