my story

[Guest guest]

,

As I read your story I was so afraid of how it was going to end. You go girl! You deserve all the happiness you are experiencing.

Joyce E

[ ] My Story

Dear Group,My scoliosis was found in the eight grade, I was coming out of the shower wrapped in a towel and my Mom couldn't believe what she saw. I was then off to our regular doc who said "@#$%" and took me by the hand and across the street to his friend an ortho doc who did spines. After about a million X-rays he said that both curves were in the upper 60's and that I needed surgery, that I would be in a cast for a year etc. Since I was a foster child and Med-i-Cal in California didn't find the condition " Life Threatening" they wouldn't pay, so my Mom set out to find the funding for the surgery. It took nearly a year to find funding, Crippled Childrens paid for the entire surgery. In the mean time my Doc in Santa CA. found a doc at UCSF that was doing the surgery with Harrington Rods and a brace instead of the casting, so we were off to see him. My surgery was set for September 1973 at age fourteen.While the surgery was horribbly painful, and I was in the hospital nearly a month, when I got home I recovered at wharp speed, and was back at school in two weeks. I wore the brace (sort of like todays TLSO except very hard plastic) for six months and then gleefully watched as a bulldozer drove over it at the dump.I went on living life, worked managing fast food restaurants, did most everything I wanted to do. Then in 1984, 11 years after my surgery, I had my first child, a daughter. Then the trouble began! I had pain running down my leg, and my low back had a constant dull ache. I saw an ortho guy who said that my upper hook on my rod had cut out, and that maybe I should have the hook removed. This didn't sit right with me, so I saw other doc's who all basically said that my fusions( T-5 to L-3) were fine, that I couldn't expect not to have pain the way my back was, take some tylenol and by. I saw over twenty doc in various cities across the country, with mostly the same story, one even suggested that it was in my head. Not one told me of Flatback.In 1999 we moved to Denver, by then I had had two more children, all with great difficulty, and I was going to give doc's one more shot. I was in so much pain that I could only walk to the mailbox, and then I had to sit down from the pain. At forty one I felt like I was eighty. After seeing my GP and them calling around to 14 different spine guys, no one took my insurance, I got to Dr. Anant Kumar.My first visit was like coming home to a safe place, He looked at my X-rays and said" OH, my, who did this" and I knew I was in the right place. He explained that I had Flatback, used spinal models to explain everything, and said that I would probably need fusion down to the sacrum, but since I was so young(41) he hoped that we could do a limited surgery( decompression-hardware removal) so I could keep L-4 L-5 open so I could bend for as long as possible. I also consulted Dr. O'Brien, who did surgeries together with Dr.Kumar, and they agreed this would be best for now and we could always go in again and do the fusion to the sacrum later if needed.I had the Decompression surgery in december 2000. My preoperative notes say I had: Flat-Back Deformity, Severe Spinal Stenosis, Lateral Listhesis of L-4 and L-5, and Severe neurogenic claudication. They removed my Harrington Rod without difficulty. They found that I has auto fused to L-5 and they decided to leave my L-5 to S-1 open. They worked through major bony bleeding to get the decompression done since my nerve roots were severely pinched at all zones. My estimated blood loss was 4000cc. and since I had so much fluid during surgery, and the extensive blood loss I had to be maintained on a vent for a day. I was in the hospital for 5 days and went home in a TLSO brace. I felt like I had been hit by a truck! I did heal up quickly, was back driving in three weeks, and my biggest complaint was wearing the TLSO, and I was happy that my leg pain was gone.While my leg pain was gone, my low back and hip pain wasn't, so after a year of trying med's etc, we were onto plan "B" fusion to the sacrum. I had this surgery 1/16/02. My preoperative notes say: Flat-back deformity,status post old Harrington Rod spine fusion from the thorasic spine to L-4 with auto fusion at L4-L5 level posteriorly, with severe arthritis at L4-L5 and L5-S1 facet joints. Decompensation of the spine both in the sagittal and the coronal plane with severe back pain and early recurrence of neurological deficit. I had anterior lumbar fusion at L4-L5 and L5-S1 with Depuy carbon Cages. Posterior spinal fusion from L3 to S1, with iliosacral screws in the ilium, and sacral screws and Depuy 1/4 inch rods. Iwas in surgery 10 hours or more. Estimated blood loss 4500cc. I recieved 11 units of blood, 2 units of fresh frozen plasma, and Cell saver blood. Once again I was on a vent after surgery, this time for two days. I was in hospital for a week, found my recovery much easier than from the decompression. By April I was hiking with my kids and feeling great till I started having pain when I rolled over in bed. Went to see Kumar for my six month check-up, and since we were moving to California, to say goodbye and get a referral to a doc out there. He hung my X-rays and started measuring, and I knew something was awfully wrong.Dr.Kumar found that I was plastically bending to the right, and that my ribs were setting on my hip. He was dumbfounded as to why this was since my old fusions by X-ray and surgically were like cement. At Dr. O'Briens they took X-rays with two doc's pulling me at the shoulders and the hips and found that I had a crack in the old Harrington rod fusion mass above L3. So it was decided to go back in a do a total redo of my spine all the way up to T1 and down to the sacrum, with all new hardware. Well the move to California was off,I couldn't imagine going through that big of a surgery with a new doc.So on to the next surgery, December 11, 2002. My preoperative diagnosis: Progressive Kyphoscoliotic deformity,Status post anterior and posterior spine fusion from T5 level to the sacrum with possible pseudarthrosis.They did indeed find that I had a pseudarthrosis in the old fusion mass above L3. They removed the hardware from the last surgery , put me into balance in both planes, put in a ton of screws, new rods, and of course those lovely bolts. Surgery was 10 hours. I again was quite the bleeder despite being worked up by a blood doc, prior to surgery. His best guess is that I bleed a lot during big proceedures, Wow what a relevation! I was on a vent for a day once again and in the hospital for a week. I healed well, and after the post operative pain, was pain free in about three months. I was so pleased with my improved appearance, level shoulders and hips, very upright and 2 1/2 inches taller. I also lost 40 pounds due to throwing up and nausea from the fentanyl patches, a hard way to loose weight, but I'm glad it's gone.While you can see that my journey through Flatback was long, and it took three surgeries, I couldn't be happier with my outcome!Colorado Springs

[Guest guest]

Dear Joyce,

As I read what you said I laughed out loud, I didn't mean to make it sound so bad, just trying to get the facts straight, had my surgical and office notes in hand while I was writing it to get it all right. I tend to look on the bright side of things, I'm so lucky to be where I am, there are many here that deserve my outcome but just haven't got there yet, and I ache for them. Thanks for the kind encouraging words!

Colorado Springs

[ ] My Story

Dear Group,My scoliosis was found in the eight grade, I was coming out of the shower wrapped in a towel and my Mom couldn't believe what she saw. I was then off to our regular doc who said "@#$%" and took me by the hand and across the street to his friend an ortho doc who did spines. After about a million X-rays he said that both curves were in the upper 60's and that I needed surgery, that I would be in a cast for a year etc. Since I was a foster child and Med-i-Cal in California didn't find the condition " Life Threatening" they wouldn't pay, so my Mom set out to find the funding for the surgery. It took nearly a year to find funding, Crippled Childrens paid for the entire surgery. In the mean time my Doc in Santa CA. found a doc at UCSF that was doing the surgery with Harrington Rods and a brace instead of the casting, so we were off to see him. My surgery was set for September 1973 at age fourteen.While the surgery was horribbly painful, and I was in the hospital nearly a month, when I got home I recovered at wharp speed, and was back at school in two weeks. I wore the brace (sort of like todays TLSO except very hard plastic) for six months and then gleefully watched as a bulldozer drove over it at the dump.I went on living life, worked managing fast food restaurants, did most everything I wanted to do. Then in 1984, 11 years after my surgery, I had my first child, a daughter. Then the trouble began! I had pain running down my leg, and my low back had a constant dull ache. I saw an ortho guy who said that my upper hook on my rod had cut out, and that maybe I should have the hook removed. This didn't sit right with me, so I saw other doc's who all basically said that my fusions( T-5 to L-3) were fine, that I couldn't expect not to have pain the way my back was, take some tylenol and by. I saw over twenty doc in various cities across the country, with mostly the same story, one even suggested that it was in my head. Not one told me of Flatback.In 1999 we moved to Denver, by then I had had two more children, all with great difficulty, and I was going to give doc's one more shot. I was in so much pain that I could only walk to the mailbox, and then I had to sit down from the pain. At forty one I felt like I was eighty. After seeing my GP and them calling around to 14 different spine guys, no one took my insurance, I got to Dr. Anant Kumar.My first visit was like coming home to a safe place, He looked at my X-rays and said" OH, my, who did this" and I knew I was in the right place. He explained that I had Flatback, used spinal models to explain everything, and said that I would probably need fusion down to the sacrum, but since I was so young(41) he hoped that we could do a limited surgery( decompression-hardware removal) so I could keep L-4 L-5 open so I could bend for as long as possible. I also consulted Dr. O'Brien, who did surgeries together with Dr.Kumar, and they agreed this would be best for now and we could always go in again and do the fusion to the sacrum later if needed.I had the Decompression surgery in december 2000. My preoperative notes say I had: Flat-Back Deformity, Severe Spinal Stenosis, Lateral Listhesis of L-4 and L-5, and Severe neurogenic claudication. They removed my Harrington Rod without difficulty. They found that I has auto fused to L-5 and they decided to leave my L-5 to S-1 open. They worked through major bony bleeding to get the decompression done since my nerve roots were severely pinched at all zones. My estimated blood loss was 4000cc. and since I had so much fluid during surgery, and the extensive blood loss I had to be maintained on a vent for a day. I was in the hospital for 5 days and went home in a TLSO brace. I felt like I had been hit by a truck! I did heal up quickly, was back driving in three weeks, and my biggest complaint was wearing the TLSO, and I was happy that my leg pain was gone.While my leg pain was gone, my low back and hip pain wasn't, so after a year of trying med's etc, we were onto plan "B" fusion to the sacrum. I had this surgery 1/16/02. My preoperative notes say: Flat-back deformity,status post old Harrington Rod spine fusion from the thorasic spine to L-4 with auto fusion at L4-L5 level posteriorly, with severe arthritis at L4-L5 and L5-S1 facet joints. Decompensation of the spine both in the sagittal and the coronal plane with severe back pain and early recurrence of neurological deficit. I had anterior lumbar fusion at L4-L5 and L5-S1 with Depuy carbon Cages. Posterior spinal fusion from L3 to S1, with iliosacral screws in the ilium, and sacral screws and Depuy 1/4 inch rods. Iwas in surgery 10 hours or more. Estimated blood loss 4500cc. I recieved 11 units of blood, 2 units of fresh frozen plasma, and Cell saver blood. Once again I was on a vent after surgery, this time for two days. I was in hospital for a week, found my recovery much easier than from the decompression. By April I was hiking with my kids and feeling great till I started having pain when I rolled over in bed. Went to see Kumar for my six month check-up, and since we were moving to California, to say goodbye and get a referral to a doc out there. He hung my X-rays and started measuring, and I knew something was awfully wrong.Dr.Kumar found that I was plastically bending to the right, and that my ribs were setting on my hip. He was dumbfounded as to why this was since my old fusions by X-ray and surgically were like cement. At Dr. O'Briens they took X-rays with two doc's pulling me at the shoulders and the hips and found that I had a crack in the old Harrington rod fusion mass above L3. So it was decided to go back in a do a total redo of my spine all the way up to T1 and down to the sacrum, with all new hardware. Well the move to California was off,I couldn't imagine going through that big of a surgery with a new doc.So on to the next surgery, December 11, 2002. My preoperative diagnosis: Progressive Kyphoscoliotic deformity,Status post anterior and posterior spine fusion from T5 level to the sacrum with possible pseudarthrosis.They did indeed find that I had a pseudarthrosis in the old fusion mass above L3. They removed the hardware from the last surgery , put me into balance in both planes, put in a ton of screws, new rods, and of course those lovely bolts. Surgery was 10 hours. I again was quite the bleeder despite being worked up by a blood doc, prior to surgery. His best guess is that I bleed a lot during big proceedures, Wow what a relevation! I was on a vent for a day once again and in the hospital for a week. I healed well, and after the post operative pain, was pain free in about three months. I was so pleased with my improved appearance, level shoulders and hips, very upright and 2 1/2 inches taller. I also lost 40 pounds due to throwing up and nausea from the fentanyl patches, a hard way to loose weight, but I'm glad it's gone.While you can see that my journey through Flatback was long, and it took three surgeries, I couldn't be happier with my outcome!Colorado Springs

[Guest guest]

Sharon,

Can you tell me what "neurogenic claudication" is? I am told that I have periferal neuropathy and wonder if there may be a connection. I, too, have awful leg cramps.

Carole M.

[Guest guest]

Hi, Carole.

Generally it is described as leg or buttock pain that is caused by nerve compression in the lumbar spine. It seems to be frequently associated with stenosis in the lumbar spine. Some of the articles I've seen on it mention cramping.

I've heard of peripheral neuropathy in relation to diabetes. I thought it was a situation where the nerves in the feet are damaged, not a radiating thing from the spine, but I suppose physicians might use the same terms for differing conditions. There is also a type of claudication that is vascular in origin.

I hope this is an ok explanation. You might want to Google the term as I did.

Sharon

Re: [ ] My Story

Sharon,

Can you tell me what "neurogenic claudication" is? I am told that I have periferal neuropathy and wonder if there may be a connection. I, too, have awful leg cramps.

Carole M.

[Guest guest]

Hi Sharon,

I will google "neurogenic claudication", especially since your explanation describes what I am feeling and have been for a long time. Thanks!

Carole M.

[Guest guest]

Hi Bee and all fellow candida sufferers,

I am Shirley, I just turned 40 last year and have been dealing with

my candida for about 5 yrs. I suffered from cronic sinusitis for

years and took a plethora of anti-biotics in order to conquer my

infections instead of trying to figure out what was causing them.

This along with a very poor diet/lifestyle has landed me in this

group. I have tried Nystatin, Diflucan, Lamisil, and ThreeLac all to

no avail and I have also done Dr Crook's diet and recently the

Maker's Diet with no success either, although physically I felt the

best on the Maker's Diet. I believe I just did not give my body

enough time to heal because I have never experienced die-off

symptoms, then I get frustrated and eat bread or something I am not

supposed to. Well, now I am sick and tired of being sick and tired

along with losing my hair (THIS is no fun) so I have been reading

Bee's files and the message boards and I think Bee has organized an

exceptional site for people to gain knowledge about their health

while also receiving support from others. Thank-you for all your

hard work Bee and for sharing your knowledge, you are amazing and I

must say extremely informed about matters of the body. I have a few

questions for you before I get started on your diet though, would

you please advise me?

First I have seen you write on several occasions that alot of

candida sufferers do not tolerate Kefir, I have been making my own

Kefir since Sept with organic cows milk and I can not tell you how

this has helped with my leaky gut and entire digestive tract. Do you

think that Kefir will hinder my healing and sabotage the ridding of

the yeast due to the lactose? Supposedly all the lactose is consumed

by the organisms. What if I used coconut milk in the beginning

instead of cow's milk?

Second I also make my own yogurt (piima) this is not done with a

yogurt maker, I just mix my piima culture and fresh org cow's milk

and let it sit out overnight. The concept is the same as the Kefir

where the lactose is consumed by the micro-organisms and the

bi-product is the yogurt(piima). Should I also try coconut milk to

make this as well to eliminate the lactose altogether or would

goat's milk be a sufficient substitute?

Thirdly I saw you mention Garden of Life Products, I use the

omega-zyme which has monumentally improved my digestion however

there are some questionable ingredients such as fermented molasses,

maltodextrin, and dextrose so my question is where do you stand on

these enzymes?

And lastly, I use only stevia to sweeten but what about vegetable

glycerin? Can it pass through the colon without absorption and

bypass the yeast successfully? Somehow I doubt it because I have

experienced sugar cravings while using this product.

I read recently in a post that you had a relapse of your candida,

were you able to get it back under control or is it something that

just gets managed for life? This was very disheartening for me to

read because I want to eradicate this beast permanently from my

body, I really am just about at my wits end with this problem. It

affects every aspect of my life as I'm sure everyone here can

attest.

Well Bee thanks for all your time and energy, God bless.

Shirley G.

[Guest guest]

Wow Carol - your story is so similar to mine! My dad noticed my scoliosis

when I was 6 years old too - when I was doing cartwheels in my grandmother's

living room. We went to an orthopedist and he too put me in a corset brace

for 3 years and then my parent's tried a chiropractor till I got

progressively worse at the age of 12. I had surgery and was told they got

good correction because my spine was flexible. I was in a cast for about 6

months after surgery for a Harrington rod and remember my mom washing my

hair in a basin on the kitchen counter. So many similarities!

I just had my revision surgery at the Hospital for Special Surgery on

11/8/05 - same hospital as my Harrington Rod surgery when I was 12.

Just had to let you know!

Lorrie Snyder

Ellicott City, MD

[ ] My story

March 2006

Carol's story

My scoliosis was discovered when I was 6 years old. I was getting

ready for a bath and my mother noticed my spine was curved (single).

She took me to our family doctor and he sent me to an orthopedic

doctor in Fresno, CA. (nearest large town). He put me in a corset,

and soon my mom could see that it wasn't doing any good. I wasn't

that happy about having to wear it either, so not wearing it was fine

with me. She then took me to her chiropractor, and we went along that

way for 6 or 7 years until I underwent my adolescent growth spurt

around age 13, and then suddenly I had TWO curves and my shoulders

were uneven. The chiropractor managed to straighten out my uneven

shoulders, but things were not changing, so we went to another ortho

recommended by the family doctor when I was 15 yrs old. He told us

that I would need surgery because my curves were very bad, and I had

the rib deformities, and he said at that time that no one in the

Central Valley did scoliosis surgeries, and that I would have to go

to the Bay area. My family had no health insurance because my dad was

on disability retirement, so the finances were an issue, but luckily,

my dad was such a penny pincher he had saved enough money " for a

rainy day " and it was enough to pay for the surgery. I had

King , MD from Oakland, CA perform my surgery at Children's

Hospital in Oakland in July 1974 at age 16. I didn't have to have any

traction before the surgery because the chiropractic treatment had

made my spine very flexible. I remember him picking me up by my head,

and he said my spine " was like a noodle " that just straightened right

out. They ended up fusing 12 vertebrae (T5-L4) and installed a

Harrington rod. I was in the hospital for two weeks, and then when

they put me in a plaster body cast from chin to pelvis, they said I

could go home. I was told to walk around and try to go about living

my life as normally as I could. I was weak, and tired, but I wanted

to go back to high school for my senior year, so I did when school

started about 2 months after surgery. I had to have special clothes

to accommodate the cast, and my mom had to wash my hair into a basin

at the foot of my bed. I had the cast changed every 3 months, and

when the 9 months was over, I was so glad to be able to take a

regular bath or shower instead of a sponge bath!!! I don't remember

being in any pain after the surgery, but I think they had me on some

powerful stuff the first few days I was in the hospital. I slept most

of the time. I wasn't given any pain medication when I went home, but

I didn't feel any pain, so I was doing OK.

I started having pain around 20-22 years ago, which was about 10 yrs.

post-op, now that I look back on it. Went to the family doctor, and

he diagnosed " radiculopathy " . Kind of like sciatica going down my

left leg. Never went to any orthopedic. I have always gone to

chiropractors. I still do, only he can just do massage and adjust my

neck. The pain has been steadily getting worse over the years, and

now when I bend over or stoop more than several times in a row, it

gets it going, and it burns and throbs. I also can't stand very long-

maybe only 5-10 minutes before the pain starts in. Also by the end of

the day (I work full-time). I have pain between my shoulders and at

the top of the rod, too. Luckily I have a very helpful almost 16 yr

old daughter who helps with a lot of the housework. I finally went

to an ortho last year, and he diagnosed arthritis in the unfused L5-

S1 area, did a CT scan, and said I had no stenosis, and later did a X-

ray guided facet joint injections of cortisone, but now they're

wearing off, I guess. The pain is back again. I'm just glad that I

found these " flatback " websites, because they have answered a lot of

questions that I have had about my pain and discomfort. I had never

heard of that term before, and the ortho last year said I do have

flatback, and now am trying to get my medical records together and

try to get into the UC San Francisco Spine Institute to see Dr's Hu

or Berven. It seems they're the only ones that seem to know what I

would need to have done. Nobody around here in Central California

knows enough to do me any good. I really don't want to have a

revision surgery, but if it is the only thing that will help me, then

I guess I'll do it. I know it will be a lot harder now that I'm close

to 50 yrs old to heal.

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Carol,

Thank you for sharing your story. I hope you found it an interesting

exercise to bring forth your history. I think chronicling/journaling

here has helped many of us with what probably was/is post traumatic

stress from the early scoli management. No matter that we ALL

developed great personal character and resources from dealing with

this as children and young adults, it was a BIG deal.

I know how scary the prospect of future surgery is..but my surgery at

49 does not seem particulary more difficult than at 16...in some ways

it was easier...at least after the 2 stage surgery itself. I had

better pain management and had better abilty to control my own

medication needs...as opposed to nurses and parents deciding for me. I

went home with no cast/permenant brace and able to shower almost right

away...so I would say the recovery was less intrusive and took about

the same year that it did as a teen. You will do fine!

I put your story in the member files so now we can always check back

if we get foggy on your " specific details " ...so thanks for doing

this. Other new members who have not put their story in one complete

post are likwise encouraged to do so!

With thanks, Cam

[Guest guest]

---Carol,

I just read your story. I don't beleive 50 is too old at all. If you

are in fairly good shape, I bet you would do fine. Half the battle

with this monkey is what kind of shape you are in for the recovery

mode.....I know my arms are stronger than before revision, I think I

am 9 weeks post op, second stage, I am losing track!!!! I must use my

arms to lift my self out of bed using the log roll, my arms are

getting a work out. IF you do not consider yourself in good shape you

probably have time to do something about it, with your doctors

permission..of course. <pa

In , " Carol " <dcvaughan@...> wrote:

>

> March 2006

>

> Carol's story

>

> My scoliosis was discovered when I was 6 years old. I was getting

> ready for a bath and my mother noticed my spine was curved

(single).

> She took me to our family doctor and he sent me to an orthopedic

> doctor in Fresno, CA. (nearest large town). He put me in a corset,

> and soon my mom could see that it wasn't doing any good. I wasn't

> that happy about having to wear it either, so not wearing it was

fine

> with me. She then took me to her chiropractor, and we went along

that

> way for 6 or 7 years until I underwent my adolescent growth spurt

> around age 13, and then suddenly I had TWO curves and my shoulders

> were uneven. The chiropractor managed to straighten out my uneven

> shoulders, but things were not changing, so we went to another

ortho

> recommended by the family doctor when I was 15 yrs old. He told us

> that I would need surgery because my curves were very bad, and I

had

> the rib deformities, and he said at that time that no one in the

> Central Valley did scoliosis surgeries, and that I would have to go

> to the Bay area. My family had no health insurance because my dad

was

> on disability retirement, so the finances were an issue, but

luckily,

> my dad was such a penny pincher he had saved enough money " for a

> rainy day " and it was enough to pay for the surgery. I had

> King , MD from Oakland, CA perform my surgery at Children's

> Hospital in Oakland in July 1974 at age 16. I didn't have to have

any

> traction before the surgery because the chiropractic treatment had

> made my spine very flexible. I remember him picking me up by my

head,

> and he said my spine " was like a noodle " that just straightened

right

> out. They ended up fusing 12 vertebrae (T5-L4) and installed a

> Harrington rod. I was in the hospital for two weeks, and then when

> they put me in a plaster body cast from chin to pelvis, they said I

> could go home. I was told to walk around and try to go about living

> my life as normally as I could. I was weak, and tired, but I wanted

> to go back to high school for my senior year, so I did when school

> started about 2 months after surgery. I had to have special clothes

> to accommodate the cast, and my mom had to wash my hair into a

basin

> at the foot of my bed. I had the cast changed every 3 months, and

> when the 9 months was over, I was so glad to be able to take a

> regular bath or shower instead of a sponge bath!!! I don't remember

> being in any pain after the surgery, but I think they had me on

some

> powerful stuff the first few days I was in the hospital. I slept

most

> of the time. I wasn't given any pain medication when I went home,

but

> I didn't feel any pain, so I was doing OK.

>

> I started having pain around 20-22 years ago, which was about 10

yrs.

> post-op, now that I look back on it. Went to the family doctor, and

> he diagnosed " radiculopathy " . Kind of like sciatica going down my

> left leg. Never went to any orthopedic. I have always gone to

> chiropractors. I still do, only he can just do massage and adjust

my

> neck. The pain has been steadily getting worse over the years, and

> now when I bend over or stoop more than several times in a row, it

> gets it going, and it burns and throbs. I also can't stand very

long—

> maybe only 5-10 minutes before the pain starts in. Also by the end

of

> the day (I work full-time). I have pain between my shoulders and at

> the top of the rod, too. Luckily I have a very helpful almost 16 yr

> old daughter who helps with a lot of the housework. I finally went

> to an ortho last year, and he diagnosed arthritis in the unfused L5-

> S1 area, did a CT scan, and said I had no stenosis, and later did a

X-

> ray guided facet joint injections of cortisone, but now they're

> wearing off, I guess. The pain is back again. I'm just glad that I

> found these " flatback " websites, because they have answered a lot

of

> questions that I have had about my pain and discomfort. I had never

> heard of that term before, and the ortho last year said I do have

> flatback, and now am trying to get my medical records together and

> try to get into the UC San Francisco Spine Institute to see Dr's Hu

> or Berven. It seems they're the only ones that seem to know what I

> would need to have done. Nobody around here in Central California

> knows enough to do me any good. I really don't want to have a

> revision surgery, but if it is the only thing that will help me,

then

> I guess I'll do it. I know it will be a lot harder now that I'm

close

> to 50 yrs old to heal.

>

[Guest guest]

>Amber,

Just wanted to say how sorry I am to hear you went

thru so much. I pray that you will soon be hearing

well with no Ctoma returns.

I am just diagnosed for the time with Ctoma and am

already frustrated. I can't begin to imagine what so

many of the people in this group have gone through.

There has to be a better way.

Anyway, just wanted to send my blessings and best

wishes.

Tammi

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi ,

welcome.

Congrats on getting started.

As far as herxing, you'll have seen how slowly Buhner recommends

increasing dosage, so I hope that will help you avoid herxing. I

didn't herx, but some people do.

For me - I was diagnosed May 1 this year with late stage Lyme. I

don't know how long I had had it. I don't recall ever feeling sick,

like many people do with undiagnosed Lyme. How I got the diagnosis,

I had a really bad cramp in my left leg (sent me to the emergency

room). The doctor tested me for muscle damage and started me on

cortisone.

A friend suggested to me I get Lyme tested, I am so glad she did, I

would not have thought about it. My test came back positive. The dr.

started me on 100 mg doxycyline twice a day for 30 days. At this

point I didn't know anything about Lyme.

Well what I 'knew' was that all one needs is 30 days of an

antibiotic and you are cured! Luckily I went to a support group and

started educating myself about Lyme, then I found some Lyme

groups. [This group didn't exist at the time.]

Meanwhile, I heard about and ordered Buhner's book, which was a

match made in heaven for me. I had read another of his books, which

I talk about on another post, and I was quite convinced that Buhner

knew what he was talking about. So I had no doubt in following his

protocol.

I started the CP (Core Protocol) in the middle of the 30-day doxy

treatment. I followed his recommendations as far as increasing

dosage to maximum. I couldn't tolerate Resveratrol so I didn't take

it. I took cat's claw, andrographis, and smilax. Now Buhner's

suggested maximum is 4 of each pill 4 times a day. Too much for me.

So the maximum for me was when I reached 4 of each pill 3 times a

day. I stayed at that maximum for 2 months, which is the minimum B.

recommends. I stopped because 1-I was feeling good, I was walking,

only thing I still couldn't bend my knee. also 2- I found it hard to

be taking so many pills, so I thought I'd just see how I did for a

while.

well after 2 weeks the pain in my leg started coming back fairly

bad, enough to interfere with my walking. That's when I decided to

try the Esberitox, which I started about 1 month ago. As I said I

added Cat's claw about 1 week ago, and I'm going to order

andrographis.

oh- almost forgot - you asked about coinfections. While I wasn't

tested or diagnosed with babesia, I diagnosed myself with it, due to

drenching dreadful night sweats, yuck. I followed B's rec for that -

artemisinin and boneset tea, and in a week, they were gone, never to

return.

BTW, and I may be the only one on the list who feels this way - I

would not take an antibiotic. Again, I hadn't done any research when

the doctor rec. antibiotic, and everybody 'knows' that is the

treatment for Lyme, and I was scared...such a dreadful disease. So I

did the doxy for 30 days, whether it had an effect on the Lyme I

don't know. I do know it gave me thrush which took me a month to get

rid of. My research into antibiotics, and also people I trust, say

that antibiotics wipe out everything in the body. A friend of mine

calls them 'weapons of mass destruction.' Anyway that's my opinion.

(smile)

good luck, be sure to let us know how you do, and ask any question -

someone on here will probably have an answer.

best,

ellen

-- In , " ashleygait "

<ashleypichon@...> wrote:

>

> Hi Ellen,

>

> I'm new here and it's so good to here of someone doing so well. I

know what you mean

> about not wanting to jinx yourself, but by all means celebrate!!

There's nothing better than

> improvement of any kind.

>

> I just read the book yesterday and ordered all of my supplements.

I hope so much that it

> won't take me too long to work my way up on them. I suffer from a

tremendous herx

> reaction anytime I take anything antifungal/antibacterial, so I

imagine it'll be a while before I

> can do the full dosages.

>

> May I ask you how long you've been on the program and how long it

took you to respond to

> it? Also, for how many years have you had lyme's? Any

coinfections?

>

> Thank you so much if you find the time to answer this,

>

>

>

[Guest guest]

Jim, GO for it ! You have nothing to lose. I would say however that there is no guarantee you will get excellent hearing. If you get some though, that would be good. james_syrek <jamessyrek@...> wrote: Hello,I am 28, from Chicago, and have had ear problems my entire life. More importantly, when I was 18. in 1996, I developed a massive ear ache and my face swelled, and I ended up in the ER...after a CT scan and a visit

to my otologist, it was confirmed: Cholesteatoma in my right ear, right behind my ear drum.So, on 12/31/96 (happy new years!), I had the surgery to have it removed...they did what many of you are familiar with: incision behind my right ear, drill a hole through my skull, removed the cholesteatoma, and installed a fake ear drum. However, they took out two out of three of my ear bones, leaving me with very little hearing, some of which has been regained.I have sicne grown up, 10 years later, and I am a teacher now, with no reoccurence of the tumor, though I have had a couple of scares when I developed some bad ear aches, but again, no reoccurences...But my hearing has gotten worse. I am 28. I am a teacher now too. I never had the follow up opoeration done to repair the bones...until now. I went again to a otlogist, who examined me and has recommended me for surgery. My new ear drum has become impacted,

and they will install a titanium "thing" behind it so it will never get sucked in again, and they are gonig to graft a piece of skin from my ear lobe and use it also, and they will also replace my bones...the goal is to obviously hear better...But I am scared. Scared of all the complications I signed off on when they gave me a waiver to sign recently. I know these risks were there 10 years ago when they went in the first time, and I came out fine (though the recovery was slow and sucked!). I want to hear again in my right ear 100%, and I owe this to my mom and my family, who spent over 20 years and thousands of dollars helping me to get one surgery after another. The doctor now said I do not have to get this done, do not have to get the bones put back, but I am still young and healthy, so the risk is worth it. If I do nothing, I will one day sooner than later need a hearing aid, but if I get this done, I can have a stronger, more

stable inner ear that may benefit me later on in life also, when a complex surgery may be more difficult to bear.I don't know, I have joined this group for support, and I am looking to share my story, get feedback, find some hope, see if anyone can tell me it will be okay, see if these complications actually ever occur (facial paralysis, spinal fluid leak, etc.)...My email is syreksbcglobal (DOT) netPlease feel free to email me, I am looking for support.Jim Syrek

Get your own web address for just $1.99/1st yr. We'll help. Small Business.

[Guest guest]

Thanks ...what about the surgical risks involved?

--- robert powell <robert_powell82@...> wrote:

> Jim,

>

> GO for it ! You have nothing to lose. I would say

> however that there is no guarantee you will get

> excellent hearing. If you get some though, that

> would be good.

>

>

>

> james_syrek <jamessyrek@...> wrote:

> Hello,

>

> I am 28, from Chicago, and have had ear problems my

> entire life. More importantly, when

> I was 18. in 1996, I developed a massive ear ache

> and my face swelled, and I ended up in

> the ER...after a CT scan and a visit to my

> otologist, it was confirmed: Cholesteatoma in my

> right ear, right behind my ear drum.

>

> So, on 12/31/96 (happy new years!), I had the

> surgery to have it removed...they did what

> many of you are familiar with: incision behind my

> right ear, drill a hole through my skull,

> removed the cholesteatoma, and installed a fake ear

> drum.

>

> However, they took out two out of three of my ear

> bones, leaving me with very little

> hearing, some of which has been regained.

>

> I have sicne grown up, 10 years later, and I am a

> teacher now, with no reoccurence of the

> tumor, though I have had a couple of scares when I

> developed some bad ear aches, but

> again, no reoccurences...

>

> But my hearing has gotten worse. I am 28. I am a

> teacher now too. I never had the follow

> up opoeration done to repair the bones...until now.

> I went again to a otlogist, who

> examined me and has recommended me for surgery. My

> new ear drum has become

> impacted, and they will install a titanium " thing "

> behind it so it will never get sucked in

> again, and they are gonig to graft a piece of skin

> from my ear lobe and use it also, and

> they will also replace my bones...the goal is to

> obviously hear better...

>

> But I am scared. Scared of all the complications I

> signed off on when they gave me a

> waiver to sign recently. I know these risks were

> there 10 years ago when they went in the

> first time, and I came out fine (though the recovery

> was slow and sucked!). I want to hear

> again in my right ear 100%, and I owe this to my mom

> and my family, who spent over 20

> years and thousands of dollars helping me to get one

> surgery after another. The doctor

> now said I do not have to get this done, do not have

> to get the bones put back, but I am

> still young and healthy, so the risk is worth it. If

> I do nothing, I will one day sooner than

> later need a hearing aid, but if I get this done, I

> can have a stronger, more stable inner ear

> that may benefit me later on in life also, when a

> complex surgery may be more difficult to

> bear.

>

> I don't know, I have joined this group for support,

> and I am looking to share my story, get

> feedback, find some hope, see if anyone can tell me

> it will be okay, see if these

> complications actually ever occur (facial paralysis,

> spinal fluid leak, etc.)...

>

> My email is syrek@...

>

> Please feel free to email me, I am looking for

> support.

>

> Jim Syrek

>

>

>

>

>

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr.

> We'll help. Small Business.

[Guest guest]

I've had 4 surgeries. The risk of facial paralysis is rare. The taste nerve grows back. There aren't really that many risks that I know of. Ask about scar tissue maybe hampering results as time progresses after the surgery. Other than that I can't really think of any. Syrek <jamessyrek@...> wrote: Thanks ...what about the surgical risks involved?--- robert powell <robert_powell82 > wrote:> Jim,> > GO for it ! You have nothing to lose. I would say> however that there is no guarantee you will get> excellent hearing. If you get some though, that> would be good.> > > > james_syrek <jamessyreksbcglobal (DOT) net> wrote:> Hello,> > I am 28, from Chicago, and have had ear problems my> entire life. More importantly, when > I was 18. in 1996, I developed a massive ear ache> and my face swelled, and I ended up in > the ER...after a CT scan and a visit to my> otologist, it was confirmed: Cholesteatoma in my > right ear, right behind my ear drum.> > So, on 12/31/96 (happy new years!), I had the> surgery to have it removed...they did what > many of you are

familiar with: incision behind my> right ear, drill a hole through my skull, > removed the cholesteatoma, and installed a fake ear> drum. > > However, they took out two out of three of my ear> bones, leaving me with very little > hearing, some of which has been regained.> > I have sicne grown up, 10 years later, and I am a> teacher now, with no reoccurence of the > tumor, though I have had a couple of scares when I> developed some bad ear aches, but > again, no reoccurences...> > But my hearing has gotten worse. I am 28. I am a> teacher now too. I never had the follow > up opoeration done to repair the bones...until now.> I went again to a otlogist, who > examined me and has recommended me for surgery. My> new ear drum has become > impacted, and they will install a titanium "thing"> behind it so it will never get

sucked in > again, and they are gonig to graft a piece of skin> from my ear lobe and use it also, and > they will also replace my bones...the goal is to> obviously hear better...> > But I am scared. Scared of all the complications I> signed off on when they gave me a > waiver to sign recently. I know these risks were> there 10 years ago when they went in the > first time, and I came out fine (though the recovery> was slow and sucked!). I want to hear > again in my right ear 100%, and I owe this to my mom> and my family, who spent over 20 > years and thousands of dollars helping me to get one> surgery after another. The doctor > now said I do not have to get this done, do not have> to get the bones put back, but I am > still young and healthy, so the risk is worth it. If> I do nothing, I will one day sooner than > later need a hearing

aid, but if I get this done, I> can have a stronger, more stable inner ear > that may benefit me later on in life also, when a> complex surgery may be more difficult to > bear.> > I don't know, I have joined this group for support,> and I am looking to share my story, get > feedback, find some hope, see if anyone can tell me> it will be okay, see if these > complications actually ever occur (facial paralysis,> spinal fluid leak, etc.)...> > My email is syreksbcglobal (DOT) net> > Please feel free to email me, I am looking for> support.> > Jim Syrek> > > > > > > ---------------------------------> Get your own web address for just $1.99/1st yr.> We'll help. Small

Business.

Get your email and more, right on the new .com

[Guest guest]

Hi Jim, Wow, you and I have quite a bit in common. I am also from the Chicagoland area. I am 46 and had my first c-toma removal last week Thursday. I am currently at home recovering. The Dr. also said he had to remove 2 out of 3 of the ossicles but he plans on replacing them in 9 mos. to a year. He also said he had to remove some of the mastoid. He told my wife that the tumor was "sizable". Supposedly the Dr. "fabricated" an ear drum out of muscle tissue that he took from a site behind my ear but I gotta tell ya, I can't hear a damned thing in my left ear. I'm hoping this gets better. The only side effect I am experiencing, and the Dr. told me to expect it, is the funky taste in my mouth on the left side of my tongue. It feels and tastes like everything I chew on the left side is just like eating a pat of butter or a spoonful of lard. I think

that finding the right Dr. for the job is primary. I can't speak on restoring of hearing since I am not at that stage yet but I guess mine did a good job... so far. Best of luck. james_syrek <jamessyrek@...> wrote: Hello,I am 28, from Chicago, and have had ear problems my entire life. More importantly, when I was 18. in 1996, I developed a massive ear ache and my face swelled, and I ended up in the ER...after a CT scan and

a visit to my otologist, it was confirmed: Cholesteatoma in my right ear, right behind my ear drum.So, on 12/31/96 (happy new years!), I had the surgery to have it removed...they did what many of you are familiar with: incision behind my right ear, drill a hole through my skull, removed the cholesteatoma, and installed a fake ear drum. However, they took out two out of three of my ear bones, leaving me with very little hearing, some of which has been regained.I have sicne grown up, 10 years later, and I am a teacher now, with no reoccurence of the tumor, though I have had a couple of scares when I developed some bad ear aches, but again, no reoccurences...But my hearing has gotten worse. I am 28. I am a teacher now too. I never had the follow up opoeration done to repair the bones...until now. I went again to a otlogist, who examined me and has recommended me for surgery. My new ear drum has become

impacted, and they will install a titanium "thing" behind it so it will never get sucked in again, and they are gonig to graft a piece of skin from my ear lobe and use it also, and they will also replace my bones...the goal is to obviously hear better...But I am scared. Scared of all the complications I signed off on when they gave me a waiver to sign recently. I know these risks were there 10 years ago when they went in the first time, and I came out fine (though the recovery was slow and sucked!). I want to hear again in my right ear 100%, and I owe this to my mom and my family, who spent over 20 years and thousands of dollars helping me to get one surgery after another. The doctor now said I do not have to get this done, do not have to get the bones put back, but I am still young and healthy, so the risk is worth it. If I do nothing, I will one day sooner than later need a hearing aid, but if I get this done, I can have a

stronger, more stable inner ear that may benefit me later on in life also, when a complex surgery may be more difficult to bear.I don't know, I have joined this group for support, and I am looking to share my story, get feedback, find some hope, see if anyone can tell me it will be okay, see if these complications actually ever occur (facial paralysis, spinal fluid leak, etc.)...My email is syreksbcglobal (DOT) netPlease feel free to email me, I am looking for support.Jim Syrek"Wherever you go, there you are!" Wagemanngeowags@...

Get your own web address for just $1.99/1st yr. We'll help. Small Business.

[Guest guest]

Hi (apologies for not not knowing your name)

You are having a truly terrible time and I hope some of the others here

(especially the guys) will respond to your post. I'm glad you have a

rheumatologist appointment on March 1 - that is exactly the best person for

you to see and you are doing a great job in looking after yourself. Fatigue

is common with Reiter's, especially when a flare is at its most acute. I

used to find the fatigue the worst symptom to deal with. All I can advise is

to rest as much as you can.

Don't give up! It might be hard to imagine right now, but you are on the way

to better health through the tests you are having. You're not alone out

there

in NZ (ReA - which is incomplete Reiters, currently in remission)

[Guest guest]

Hello there, Seeing a good rhuemy is the best thing you can do right now.

(my feelings anyway) I have Anklosing Spondylitis (AS) Psoriatic Arthritis (PsA)

and wondering if inflammatory bowel disease (IBD) is kicking in now. I

walked around for years being told that the pain and fatigue was in my head

until

I met a really good rhuemy. Through MRI's & x-rays he knew right away what my

problem was. I've recently had to qiut working because my body cant handle

it anymore. Except for the occasional prostrate infection I've never

experianced the symptons you describe. I know from my own expierance right now

is

really tough for you. IT WILL IMPROVE!!! You've got to believe that. Don't

allow

yourself to slip into depression like I did. It only complicates things even

more. You are not alone in your suffering there are 1000's of us out here.

Hang in there,Best regards, Marty (I'm sorry I dont know your name--- but dont

give up)

[Guest guest]

I am the person who posted My Story. My name is Roy. I am 56 and have

never in my life gone through anything like this. I won't pretend I

haven't done anything to cause it. In fact, I fooled around sexually

in August and September, and I am sure that is how I got the

chlamydia. It is even possible I got it a long time ago and the recent

fooling around caused it to do whatever it does to turn into Reiter's.

I seem to be one of those whose genitourinary problems are as bad as,

or worse than, the arthritic ones, though right now the pains in my

legs, back, and knee are bad.

One thing the uro told me was that NSAIDS don't work to reduce

inflammation unless you take them for a while. So I took 400 mg (2

pills) of ibuprofen every six hours for two weeks, and I actually felt

better. But, of course, there is no free lunch. The ibuprofen caused

my heart to pound, I reacted to caffeine, my tongue dried out and went

white, and my forehead peeled. I stopped the ibuprofen Friday, and the

next day my testicles were very red and painful again (though they had

never really stopped being painful completely). Today, as I am still

waiting on the infectious disease dr. to call with results, I started

naproxen. I will take only two per day -- one every 12 hours. I hope

it gives me some relief without as bad side effects.

Thank you for responding to my post. I have never been religious, but

I have always believed in a God. I have been praying almost

constantly. I have even tried to see if there are lessons in this for

me to learn. I have already learned to empathize more with my mother,

who is an invalid and who I take care of. Before, I resented having to

care for her and felt it was somehow depriving me of a life. Now, I

realize what she is going through (in terms of her own pain and

suffering) and I consider it an honor and a privilege to be able to

care for her in her last years. I just hope my own health improves

enough, because right now I can't even take care of myself very well.

Once again, thank you for being out there. I know one thing: I am

going to be a different person, no matter what God does with me and my

disease.

I'll post again when I have heard from the ID dr.

[Guest guest]

Roy,

So many of us can relate to you. I know your in a really bad place right

now, but things can get better.

Margie

[Guest guest]

Hello Myroro44,

I am so sorry to hear of all your suffering. You are not alone. Please

hang in there and keep on searching for solutions. We are all very

unique and some of us have more than one condition. But keep reading

the posts until you start to find a direction for your own path to

healing. There are no cures but you can improve with the right

treatments. This is a good place to get ideas and emotional support.

You may want to explore antidepressants with your MD. I have been able

to alieviate both some of my pain and anxiety with a low dose of

Elavil/Amitriptyline (25-50 mg.) For me, it has especially helped with

the urethral pain. I know others have been helped with Cymbalta.

Also, it helps to make a list to discuss with your RH MD, you are doing

the right thing by seeing one. If he or she does not listen well then

keep shopping until you find one that does.

You'll be in my thoughts and prayers. And keep posting.

Love,

in CA

[Guest guest]

Hi Roy and welcome to this list.

My friend, you are going to have times when it seems like every hair

follicle on your head hurts and combing it is disaster.

But, you are lucky in that you were diagnosed fairly quickly. Some of us

went over 10 or more years before we were diagnosed so medications came

slowly. I hate to think of the number of Tylenol 1's or AC & C I had to

gobble down because of no diagnosis.

I wish you the best in your treatment and I am sure they will get it under

control shortly.

Fr. Dave

[Guest guest]

Roy, you are not whining or pathetic!! You are concerned and probably

confused about what the heck is happening to your body. This is a VERY GOOD

group

of people on this site. Whatever you feel that you need to ask. ASK! However

you may feel and need too share, let it go! My hope and prayers are with you.

Marty

[Guest guest]

Hi Roy:

You have my most heartfelt sympathies. I had my intitial attack of

Reiter's when I was 25. It lasted about 3 months. During that time, I

had arthritis so bad I could barely walk; the pain in my SI joints and

heels was debilitating. I was depressed, hopeless feeling, and

terrified that I would be crippled the rest of my life. I thought my

life as I knew it was over. After finally finding out what I had, I

pretty much went back to normal after the 3 months. I am 44 now, and in

the years since, I get SI joint pain that lasts from 1 to 3 days and

gives me a limp. This happens a few times per year. I realize I am one

of the very lucky ones not to have the chronic severe symptoms that so

many with this mysterious disease do. I realize this is easy for me to

say, but please keep a positive and hopeful attitude that your symptoms

will resolve themselves like they do for a good many of the folks

afflicted with this.

[Guest guest]

>

> I joined the RISG group about a month ago and have been following

the

> posts since then . I have never sent a post, but today I am in tears

> and have lost all hope. I don't know what else to do but send this.

Dear Myroro44,

I recently came across this site, and I am grateful that I did. Even

though your situation is different from mine, I do understand the

frustration of the fact you don't know what is wrong with you. When

my Reiter's, that I didn't even know that I had, kicked into high

gear, I was so depressed because I didn't know what was wrong with me

and my doctor kept guessing at different things. For two months I

was lucky I could even hobble to the bathroom which was ten feet from

my bed. I was so drugged out with the meds that he had put me on

that I would fall asleep in mid sentence on a regular basis. But,

hang in there. I know that the pain is extreme, and it may seem like

it is never going to end, but in time, things will get better. Once

the doctor's figure out what is going on, they can start the right

treatment. Talk to your doctor about pain management. It may help.

I am hoping that since I am new and you did write this some time ago

that by now things are better or at least that you are on the right

path on recovery. I truely hope that is the case. Please let me

know how you are doing. Did your doctor test for your sed rate and

if you are HLA-B27 positive?

Barbara

[Guest guest]

Hello Roy,

I just sent you a post. I just wanted to say that I know what you

are talking about when you speak of your mother. I too take care of

someone, my grandmother. Believe me, even though she is very

difficult and very dependant on me, I sometimes can't help feel the

resentment that I sometimes feel towards her. But, it is really not

her. I resent the fact that I am having to deal with my Reiter's and

still be there for her due to the lack of support from the other

family members. I am the only one that is there for her, I don't

know why or know if I could even understand why the others, two other

sons and a daughter, won't step in to help. But, just hang in

there. Don't blame yourself for your current condition. I know that

I myself am guilty of that since my boyfriend and I moved into a

house, knowing that I would have to go to work to help with the bills

and after I did go back to work I developed Reiter's or at least

found out that I had it.

I feel guilty for the extra strain and stress put onto my boyfriend

since he is the only that is working. It is really not fair to him

to have to help support me and my two children (from a past marriage)

all on his own. We don't plan for these things to happen they just

do and how we deal with them can make the world of difference. I

hope that things will soon be on their way of becoming better for you.

Barbara