New member

Report post · April 28, 2003

Hello, All, I've been in a lot of pain for the past four or five days,

and I'd compare it to the second week after surgery. It's low (L5-S1?)

I can hardly stand staight. Walking across the floor is difficult.

Last week, the only thing I did out of the ordinary was go to pool

therapy for my PT routine I've been doing since Nov. with no problems.

Only, last week, I swam a fancy dog paddle the length of the athletic

pool--25 feet, and, I did leg kick backs. I suspect it was the kick

backs. What do you all think?

--

Lana

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>RETURN MEMORIAL DAY TO MAY 30TH<

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Report post · May 25, 2003

Just eat plenty of protien and fresh vegetables, omitting carrots if you are

trying to lose weight. Stay off bread of any kind and sweet potatoes too.

Increase your exercise a little and see if that jump starts you.

OKC

Goldsmith <john.goldsmith3@...> wrote:

Hi All ,

Does anybody have any tips on how I can lose 14lb ?

I have been on th er4yt for 3months now ,cut out wheat , dairy,

beer,. I go to the gym and do cross traing for 30mins ,bike ride for

20mins and also do weights just to 'trim' the body but I'm still

78kg! and its doing my head in . Any ideas I'm 43yr male 5'9 " tall

Report post · May 26, 2003

I do!

new member

Hi All ,

Does anybody have any tips on how I can lose 14lb ?

I have been on th er4yt for 3months now ,cut out wheat , dairy,

beer,. I go to the gym and do cross traing for 30mins ,bike ride for

20mins and also do weights just to 'trim' the body but I'm still

78kg! and its doing my head in . Any ideas I'm 43yr male 5'9 " tall

Report post · May 26, 2003

Be patient, watch you portions a little and remember if you have been

exercising you have gained muscle and lost fat. It may be awhile before the

pounds start showing up but keep track of the inches. You should be losing

some inches. As you build up muscle your metabolism will speed up.

Good luck

Jane

new member

Hi All ,

Does anybody have any tips on how I can lose 14lb ?

I have been on th er4yt for 3months now ,cut out wheat , dairy,

beer,. I go to the gym and do cross traing for 30mins ,bike ride for

20mins and also do weights just to 'trim' the body but I'm still

78kg! and its doing my head in . Any ideas I'm 43yr male 5'9 " tall

Report post · June 15, 2003

In a message dated 6/15/2003 6:42:09 PM Pacific Standard Time,

angjoeuk@... writes:

> Wednesday morning he is to have his first Remicade dose.

> Could I please ask if anyone else is taking it?

My nephew, age 19 is given Remicade. It has worked well for him. He spends

time in the hospital... each time it is administered... but has had no other

bad affects from it. It has worked well for him.

Good luck!

K

Adrienne's Mom

Report post · June 16, 2003

Welcome, Terry

My father had his Harrington rod surgery in 1974 when he was 47. He is now

76 and has been diagnosed with spinal stenosis (no doubt from disc

degeneration below the fusion). I also believe he has flatback, but he has

enough other health problems that we're quite sure he won't be a candidate

for revision surgery. He does have some trouble getting around and some

pain from the stenosis, but he did manage to work full-time until age 62,

still does some gardening, and rides a bicycle.

I don't know for sure if the late fusion actually bought him time. Maybe

so. Of course we'll never know how he'd have done with no fusion at all,

or with an earlier fusion. He was having significant pain in his 40's, and

really felt he needed the surgery. Too bad it wasn't the cure we'd hoped,

for either of us.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

At 11:55 AM 6/16/03 -0700, you wrote:

> Hello, Thank you for this web site, it has opened up a whole

>world that I am now apart of. I thought it was strange to

>mask the pain with pills, then eventually nerve blocking shots, but he

>told me surgery would be the last resort. can you still move, or

>would my golfing days be over. When I had my surgery, I thought that

>was it! Boy, was I wrong. (I'm a girl)

>

Report post · June 17, 2003

i have just read your posting on the computer and would like to get some more information about nerve blocking shots. how long do they last and are they more effective than pain killing tablets. i feel my daughter is becoming too dependant on them and i would like to find an alternative. she suffers severe pain at the top of her rods and down her right side. she is due to have them out after xmas and in the meantime i am trying to get as much information as possible on this surgery. my concern is for the long term and i need to be confident she takes the right option.

trinas mum (kathy)Ron Janney <terryjanney@...> wrote:

Hello,

My name is Terry, I live in Spokane, Wa., and never knew about problems with the Harrington Rod until last week. Thank you for this web site, it has opened up a whole world that I am now apart of.

I was diagnosed with scoliosis at the age of 12. My parents elected not to do surgery. When I was 30 and had curves of T5-T11 52 degrees and T11-L4 55 degrees is when I had my Harrington Rod surgery.

I have had no problems for 23 years. I am very flexible and have been able to play all sports especially golf all these years. About 6 months ago I started to get a pain in my right hip that would travel around to the front of the thigh and done the front of my lower leg (tingling also in the lower leg). Went to the Dr.'s and heard the word Flatback for the first time. I thought it was strange to mask the pain with pills, then eventually nerve blocking shots, but he told me surgery would be the last resort.

I consider myself lucky so far, because and am able to control the pain now. I am wondering because I had my surgery at 30 and am now 53......have I bought myself some time before I really start having major problems. I think most of you probably had your surgery when you were teenagers. I'd like to know if there is anyone else out there that had surgery late like me. And (I know everyone is different) but after revision surgery and having your spine completely fused can you still move, or would my golfing days be over.

Again, thank you for being out there. When I had my surgery, I thought that was it!

Boy, was I wrong.

Terry (I'm a girl)Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

Report post · June 19, 2003

, Nice to have you here. Don't be surprised that your first doctor didn't realize what you have. Most of these docs have never heard of flatback (also most weren't even born when we had our Harrington rods put in.

Hang in there.

Joyce -Atlanta

Report post · June 23, 2003

Hi All,

Sorry for not getting back to you sooner. We're up to our eyes in college

assignments and hospital appointments. Two of those today - big groan.

Thanks to those of you who answered my questions about Remicade. Son had his

first course on Wednesday. It took 4 hours for the infusion due to the

initial slow drip rate. It will be gradually speeded up to 130 drips (per

minute)?

He had no adverse reaction what so ever. Huge sigh of relief.

The following morning he was up early - for him - and made me a cup of

coffee. A small thing, but if I tell you it's the first time in nearly 4 years,

its

more like a miracle. He even did the dishes in the evening. He says there's

no difference in his pain levels but he has more energy and feels less tired.

His next dose is on the 2nd July.

I'll try and post our intro sometime this week. Got to rush as we've got an

hour to get to the hospital for physio. Back home for two hours, then off to

the hospital for hydro.

Angie

Report post · June 23, 2003

In a message dated 6/23/2003 5:36:08 AM Pacific Standard Time,

angjoeuk@... writes:

> he was up early - for him - and made me a cup of

> coffee. A small thing, but if I tell you it's the first time in nearly 4

> years, its

> more like a miracle.

I so hear you!!!!

It is so hard to see our children be so exhausted and... unable to do the

little things that most everyone else takes for granted. It is WONDERFUL to

have them be able to step back into life... and be " normal " . Even when

" normal "

is not earth shattering to many...but for us, and our kids... ( and the

adults on this list too!!!) it is such a change and so rewarding!

So glad the medication didn't cause nasty side affects and all went well!!!

Thank you for sharing!

K

Adrienne's Mom

Adrienne age 19, Undiff Spondy, Hypo Thyroid, Fibromyalgia, Chronic Fatigue,

UW Honor Student, Bassoon + Piano Player, Aspiring Musical Theater Actress,

Great kid

Report post · June 24, 2003

Hi, Kkasen,

I too was having very similar symptoms to you in arms & legs. My ortho performed an EMG to determine if the pain in my hands (mostly being numb) was from my neck. It wound up being carpel tunnel in both arms, moderate.

I too am fused except for the last 5 vertebrate and the terrible shooting pain I'd get down my legs was getting worse. An MRI showed "some spine" as the tech said. Like most of us massive deterioration, arthritis, etc and 2 bulging discs. A regime of pain meds, lido patches & PT was started & things are a lot better. Mainly sleep has returned-what a blessing. The dr has already told me when this doesn't work anymore the next step is shots in the back & then if that fails surgery.

Hang in there & keep asking questions.

Joyce, Atlanta

Report post · August 6, 2003

Hey Liz,

Thanks for the welcome. I experienced a little nausea/headache during/after

each infusion. So far my symptoms after the first infusion seemed to

drastically decrease for about 4 days (to a very tolerable mode) then increased

to what they were before the infusion, so I am looking at that as a positive

sign with more infusions it will last longer. I saw my Gastro yesterday after

the second infusion and he was happy to hear about the improvement after the

first infusion, reminding me it will/might take more infusions to have that last

longer.

The one thing I have noticed though is tingling(like when they go to sleep,

before they go numb, but they don't go numb) in my hands, knees, and feet

occasionally that will last for sometimes 2-4 min. or up to 30-45 min., have you

experienced this with the remicade at any point?

Thanks again for the welcome!!!

Hugs,

Jeannie

Report post · August 6, 2003

Welcome Jeannie:)

Another remmy buddy:) How is it working for you so far?

I saw my biggest improvement right after my first one.. my hand just

totally were pain free--i wasn't even expecting anything that soon!!!

I'm glad that you found our " Family " here:)

hugs:)

Liz

~~~~~~

" The truly creative mind in any field is no more than this: A

human creature born (extraordinarily) sensitive. To him/her a touch is a

blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy,

a friend is a lover, and failure is death.--Pearl S. Buck

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Report post · September 4, 2003

Diane,

Welcome to the group and I'm very sorry to hear you're facing the

possibility of more surgery. I couldn't tell from your post, were

your problems in your teens caused by scoliosis? Also when you say

NY, do you mean New York City? (I'm asking because I'm from

Rochester, NY). This is a great group for finding people with

problems in common, so keep reading and good luck to you,

loriann

Scoliosis/Harrington Rods T5 to sacrum 1977 age 17

Flatback Syndrome

Total Hip Replacement May 2003 age 43

Revision surgery is in my future

> I have had problems with my back since I was in my teens. My name

isDiane Brosius and I now live in Pennsylvania, but was born &

raisedin NY. I am 56, the mother of 3 grown sons & the grandmother of

3grandsons, ranging in age from 11 to 2. I was a nurse & got hurt at

work lifting, this brought on my 1st myelogram with Pantopaque & my

1st laminectomy at L4-L5, L5-S1. They did not fuse me then, even

for 2 levels. All in all I have had 7 myelograms, 4 laminectomy's and

an Anterior/Posterior Fusion with bone grafts & Harrington Rods in

1985. I was in a body cast for 3 months & no better. I made the dr

remove the rods in 88 because I was still in pain and he would not

even do a CAT Scan to see if anything was wrong.I had another

Posterior Fusion in 1990 frpm L3 down, but it only took from L4-L5.

In 85 I herniated the 2 disks above the fusion, L3 & L2. In Oct of 96

I went to The Hospital of The University of PA & had a laminectomy

for L3, I did not have a fusion as I refused to let him do L2 also.

Both fusions I did have only made things worse.At the end of 99 I

started walking bent forward from the waist & I get progressively

worse as time goes on. I saw Dr Dennis Crandall in April of this yr &

he said I needed surgery for FlatBack Syndrome.I am really looking

forward to meeting other people who unfortunately are in the same

situation. I have had 2 fusions & was never any better & I am very

afraid to have this done. The laminectomys always relieved my acute

pain but the fusions were of no help.I am really happy to have been

told about this group, at least sinceI found Twisted Sisters I have

learned what was now wrong with me & heard of this Support Group.

Looking forward to hearing from other people with this problem.

> Fondly,Diane B.

Report post · September 19, 2003

Welcome Kelley - you may want to start reading some of the older posts

to see how this is the diet to follow.

You may also want to visit:

http://www.foodforyourblood.com/cgi-local/ultimatebb.cgi

New Member

Hi,

I just joined today and wanted to introduce myself. I've heard about

the blood type diet for several years and have incorporated some of

the changes into my life. I'm ready to go to a different level with

it now and wanted a group who'd been there, done that, who could

share their experiences with me (and vice versa).

Looking forward to getting to know everyone.

Cheers!

Kelley

Report post · November 5, 2003

Hi Eva,

I would recommend that you transition into eating meat very slowly at first;

perhaps 4oz. was a little too much, especially buffalo. It took me several

months to get over the gas and bloating that came at first. Try to keep your

meals very simple, do not drink fluids with your meals (perhaps a little red

wine before), eat small amounts of protein several times a day and practice good

food combining... Digestive enzymes were helpful for me, but you should seek out

the more potent forms. Perhaps someone else could advise you on brands...good

luck and keep at it. Be patient...it will take time for your body to make the

transition.

, O-nonnie

New Member

Greetings Groupies.

I have been a vegetarian (lacto/ovo and some fish) for the past 10

years and just found out that I'm " O+ " . I want to follow the ER4YT

diet because of the myriad plans out there today, it seems the most

scientifically sound to me. I'm desperate to be free of the health

problems that have plagued me for the past several years (like joint

pain, respitory problems, malaise, digestive problems, etc.). My

dietary staples of the last ten years consisted mainly of wheat, corn

and dairy (it's almost funny to me now that I've read Dr.D's book

which explains why the bulk of my diet has been causing the bulk of

my health issues).

I ate meat for the first time three nights ago. I had about 3oz

turkey. My stomach felt a little " oogy " but not too bad. The

following night I ate aprox 4oz buffalo (I took a pancreatin tablet

about 15 min.before). Within an hour I felt horrible. I had

miserable bloating, gas and cramping the rest of that night and the

whole next day. I felt nauseated, had chills and felt very tired.

Today I feel back to normal (which isn't wonderful, but a darn sight

better than yesterday). Is there anyone else here that has converted

to the Type O diet after years of being veggie? How should I go

about safely and less-painfully switching over? Could the enzymes

have been the culprit? Any suggestions, ideas and/or advice would be

helpful and appreciated.

Thanks,

Eva

Report post · November 7, 2003

Hi there,

Just thought I would let you know that I was Vegetarian for 15 years before

changing to the O diet. I was getting pretty ill my self. I had terribe

digestive problems, chronic fatigue etc. I have been on the diet for about two

years now and my life has turned around. I have more energy than I have ever

had. And I no longer find myself huddled in a corner of the room curled up in

pain as I used to all too often!

The thing about changing your diet so radically is tho that you should not do it

too quickly. The body doesnt really like that. You problably have to kick things

into gear too with digestive enzymes and some HCL tablets, as your stomach wont

Know what has hit it. Also I wouldnt be surprised if you werent in need of some

probiotics. Such a long time being vegetarian on an O physiology has probably

given you leaky gut. Get yourself tested to make sure.

But stick with it, it is worth it in the end.

Colin