Melody

[Guest guest]

Hi Melody: I had major nausea for a bit after surgery. Turns out the hormone

pills caused it. Once the Dr. gave me the combi patch, my nausea ended.

It was forever before I could eat much. For the first month, one container of

yogurt and a few saltines was all I could eat in a day. My capacity was very

small but it did increase gradually. I still eat less than some of my MGB

friends. And more than others.

I had pain in my left side for quite a while after surgery. For me, two

months was the magic time when I began to feel much better.

[Guest guest]

Melody and Molly--

So glad to hear someone else is having the nausea trouble. Its a daily

battle, but it seems to be getting better each day. Still have bad days

though.

Hope things get better.

Hugs

Caron

3-28-01

[Guest guest]

Skinnyflo,

Thank you for your response. You are the first answer back. I feel so good

to able to talk to the group. I'm eating better and feeling better each

day. It has really taken a month to get my strength back. I was suprized

because so many post-ops are up and going quick. Again thank for the

response.

Melody

MGB 3/22/01

240/215

Re: Melody

> Hi Melody: I had major nausea for a bit after surgery. Turns out the

hormone

> pills caused it. Once the Dr. gave me the combi patch, my nausea ended.

>

> It was forever before I could eat much. For the first month, one container

of

> yogurt and a few saltines was all I could eat in a day. My capacity was

very

> small but it did increase gradually. I still eat less than some of my MGB

> friends. And more than others.

>

> I had pain in my left side for quite a while after surgery. For me, two

> months was the magic time when I began to feel much better.

>

>

>

[Guest guest]

Everyday does get better. I'm feeling better as we speak. Hope you are

doing well.

Melody

Re: Melody

> Melody and Molly--

>

> So glad to hear someone else is having the nausea trouble. Its a daily

> battle, but it seems to be getting better each day. Still have bad days

> though.

>

> Hope things get better.

>

> Hugs

> Caron

> 3-28-01

>

>

>

[Guest guest]

Molly,

I'm finding each day is better. I have'nt had any nausea in a few days. My

energy level is coming back and I'm very excited about that.

Hope you are doing well.

Melody

Re: slow going

> >

> >

> > > You're ahead of me when I was at 2 months, and I'm not worried.

> We're all

> > > different and lose differently. Enjoy the progress, get off the

> scale,

> > and

> > > be happy that you're losing ! Too much time is wasted comparing

> Jane to

> > > Joan. We're not them, we aren't in a race. There's an average

> chart on

> > the

> > > clos site. If you go there, you'll see, you're doing fine.

> Enjoy this

> > ride

> > > we're on together. You're coming along just fine. PhillyJude

> MGB 11-3-00

> > > 263/205/144 or so

> > >

> > >

> > >

[Guest guest]

Thanks for the suggestion and I'm doing better each day. Hope you are doing

well.

Melody

3/22/00

240/215

Melody

> Hi Melody,

>

> from NC here. Sorry to hear about your rough time. I'm 6 and a

half

> weeks out. I haven't had the problems you've had but I did want to say

to "

> hang in there " . I've talked to a LOT of people and all say that it gets

> better.

>

> As far as the drinks, I was like you. I had a strong bout of

dehydration.

> Gatorade was the thing I had to drink even though I wasn't crazy about it.

> In fact, I HATED the stuff before surgery. Now I like the Fruit Punch and

> Fierce Grape flavors okay. Water is still my drink of choice. Chicken

> broth also contains a lot of salt which will help fight the dehydration.

>

> Take care.

>

>

>

>

> On Thu, 19 Apr 2001 22:02:10 -0500, wrote:

>

> > Hello from Texas,

> >

> > My name is Melody and I live in Ft. Worth, Texas. I had my MGB March

> 22nd,

> > 2001. My first month has been pretty difficult and I'm looking for

some

> > encouragement and support. I'm excited to say I have lost 26 pounds.

My

> > complications have included thrush for three weeks, abdominal pain for

> about

> > a week after surgery, nausea/vomiting for a few days until I got the

> right

> > dose of estrogen.

> >

> > I know things are going to get better. But, has anyone out there had

any

> of

> > these problems to occur.

> >

> > I went to lunch with a wonderful lady here in Ft Worth that is 4 months

> > post-op and she has been so kind. I was amazed at how much she can

eat.

> I

> > still can only eat a few bites of food at one time. Any suggestions on

> > liquids? Nothing tastes good and I have to keep from getting

dehydrated

> > again.

> >

> > Look forward to hearing from a fellow MGB post-op.

> >

> > Melody

>

>

>

>

>

> _______________________________________________________

> Send a cool gift with your E-Card

> http://www.bluemountain.com/giftcenter/

>

>

>

>

>

[Guest guest]

Hi Melody,

I just wanted to write and say congradulations, you are doing great and

I am sure you are very happy . I am glad your husband is very supportive, My

Vinnie was too, he was so happy that things were going good for me. He was

so happy to meet everyone when we came to the office , the friday night

dinner, and the picnic. You all made his last few days on earth happy, I

miss him so much. It is very hard to go on without him here with me. I know

I have my children and grandchildren but it isn't the same. But I am write

to tell you how happy I am for you. Take care.

Rosemary Commisso ( DrR 1/26/01 297--204)

[Guest guest]

Rosemary,

I'm so sorry about Vinnie. You are in prayers. May you find the peace and

support you

need this season. I have seen so many people post about you. You have a

great big

group of people reaching out. Grab on to that and know you are cared about.

Melody

MGB 3/22/01

240/138

Re: Melody

> Hi Melody,

>

> I just wanted to write and say congradulations, you are doing great

and

> I am sure you are very happy . I am glad your husband is very supportive,

My

> Vinnie was too, he was so happy that things were going good for me. He

was

> so happy to meet everyone when we came to the office , the friday night

> dinner, and the picnic. You all made his last few days on earth happy, I

> miss him so much. It is very hard to go on without him here with me. I

know

> I have my children and grandchildren but it isn't the same. But I am

write

> to tell you how happy I am for you. Take care.

>

> Rosemary Commisso ( DrR 1/26/01

297--204)

>

>

>

[Guest guest]

In a message dated 1/13/2006 12:13:36 A.M. Eastern Standard Time, melody1181@... writes:

Hey Tina ) Thanks>> > Hey girl whats up??? Welcome to the group. This is a great group of > people. We are all here to support you through good times and bad. Im always here > for you.> Tina Barker>100-Plus Files page 100-plus/files100-Plus Links page 100-plus/links

[Guest guest]

Hey Tina ) Thanks

>

>

> Hey girl whats up??? Welcome to the group. This is a great group

of

> people. We are all here to support you through good times and

bad. Im always here

> for you.

> Tina Barker

>

[Guest guest]

Hi Everyone,

I found this group while recovering from a Dec. 21 revision surgery. Thanks

to everyone who has shared their stories. It is so nice to be able to read

and learn from other peoples experiences! I am 46 years old. My original

scoliosis surgery was at age 13. I was fused with Harrington rods from

T2-L4. During my revision surgery, a small amount of the old hardware was

removed and new hardware was implanted. I am now fused all the way down to

S1. After I recover, I need one more surgery in the C56 and C67 area. I am

hoping to have ADR (instead of fusion) done to avoid further limitations

with mobility. I thought I would have to go to Europe for a 2 level

cervical ADR surgery....but my U.S. surgeon says that now that the FDA has

ProC Disc for single level disc replacement, it won't be difficult to obtain

a compassionate waiver allowing him to perform a 2 level ADR on my neck. I

have many questions....but my first one is whether or not any of you have

had ADR surgery done in the US.....has anyone had a 2 or more level

procedure, and finally, did your insurance company pay for it? If you had

to pay for it, I would be intereted in knowing the cost? I have to wait 6

months from my recent surgery, so I have a few months to make a plan.

Although I hate the idea of more surgery, I am looking forward to getting

rid of (or at least reducing) the pain in my neck, shoulder and arm. I hope

to be able to stop taking pain meds some day! I look forward to hearing

from anyone who has news or thoughts to share. Thanks for reading my long

message. Melody

>From: " rebeccamaas " <rebeccamaas@...>

>Reply-

>

>Subject: melody

>Date: Thu, 28 Feb 2008 19:17:20 -0000

>

>Hi Melody!

>Feel free to jump in anytime with an introduction

>

>

>

> >

> > I just joined this group and would like to be able to post messages.

>Thank

> > you! Melody

> >

>

>

[Guest guest]

A friend of mine said her husband went through 2 levels of ADR. He was back at work within a couple of days. Her insurance paid for it but it was through Blue Cross Blue Shield. It was also a contract for Merrill Lynch back in 2003. They have great insurance by the way. Anyway, I've never heard of anyone having the ADR with previous hardware. I begged my doctor to do me back in 2001. He said they wouldn't even try it on us because they didn't know if or how long it would hold because the few discs we have take on a whole lot more pressure than the average spine. This was back in 2001/03 time frame. Things may have changed but none of my doctors have mentioned anything. I have Aetna and haven't had any trouble with my insurance. This may be because I use to do medical claims and can speak their language when I get on the phone with

them to fix things. Our contract is also for a brokerage firm so they may have better insurance as well. I don't know. If you do have any insurance questions I may be able to give you some tips to help you get them paid. Ok? Take care and good luck.... Zade"MELODY KING,DAVID LANE" <melodylane2195@...> wrote: Hi Everyone,I found this group while recovering from a Dec. 21 revision surgery. Thanks to everyone who has shared their stories. It is so

nice to be able to read and learn from other peoples experiences! I am 46 years old. My original scoliosis surgery was at age 13. I was fused with Harrington rods from T2-L4. During my revision surgery, a small amount of the old hardware was removed and new hardware was implanted. I am now fused all the way down to S1. After I recover, I need one more surgery in the C56 and C67 area. I am hoping to have ADR (instead of fusion) done to avoid further limitations with mobility. I thought I would have to go to Europe for a 2 level cervical ADR surgery....but my U.S. surgeon says that now that the FDA has ProC Disc for single level disc replacement, it won't be difficult to obtain a compassionate waiver allowing him to perform a 2 level ADR on my neck. I have many questions....but my first one is whether or not any of you have had ADR surgery done in the US.....has anyone had a 2 or more level procedure, and finally, did

your insurance company pay for it? If you had to pay for it, I would be intereted in knowing the cost? I have to wait 6 months from my recent surgery, so I have a few months to make a plan. Although I hate the idea of more surgery, I am looking forward to getting rid of (or at least reducing) the pain in my neck, shoulder and arm. I hope to be able to stop taking pain meds some day! I look forward to hearing from anyone who has news or thoughts to share. Thanks for reading my long message. Melody>From: "rebeccamaas" <rebeccamaas >>Reply- > >Subject: melody>Date: Thu, 28 Feb 2008 19:17:20

-0000>>Hi Melody!>Feel free to jump in anytime with an introduction >>>> >> > I just joined this group and would like to be able to post messages.>Thank> > you! Melody> >>>

Never miss a thing. Make your homepage.

[Guest guest]

Thanks for the offer to help with insurance issue! I will be taking you up on it if my ins. company denies the surgery! You said your doctor wouldn't do ADR for you? What kind of surgery did you end up with? If you had a fusion, what levels are fused and how are you doing overall now?

Melody

melody>Date: Thu, 28 Feb 2008 19:17:20 -0000>>Hi Melody!>Feel free to jump in anytime with an introduction >>>> >> > I just joined this group and would like to be able to post messages.>Thank> > you! Melody> >>>

Never miss a thing. Make your homepage.

[Guest guest]

I am fused from T3-S1. I live with chronic pain. Currently I have a metronic pain pump. I do the usual routine with the breakthrough meds, biofreeze, moist heat, physical therapy (water), lay down with several pillows propped around me. I've got allergy induced asthma with a lung restriction due to the scoliosis. Since my last back fusion, 2001, I've developed idiopathic Neuropathy. They also discovered a Chiari 1 in my last cat scan but cannot do further testing due to the pain pump. I suffer from Migraines which my doctor says is triggered from the cervical radiculopathy. I've got a disc bulge somewhere between C5 and C6 if memory serves me correctly. There is also a bone spur in that same region. I have numbness in my legs, right foot, back, and right under arm and breast. I have radiating pain in my left shoulder, right arm, neck and back, both hips and legs. I fall frequently despite using a

cane. My foot will drop and down I go. My Neurologist mentioned last week that she will probably have to put braces on my feet within the next two years. So....I try to manage it all as best I can. It's not easy but you have to find a way to make your life as full as it was before. I use to be very active both physically and emotionally. Now, it's hard. I try to take one day at a time and place one foot in front of the other and force myself to pace it. When I have a good day it's hard to make myself lay down frequently so I've taken up a hobby called "reading".*lol* When I'm having difficulty breathing or having a bad pain day I try to get up and walk a little around the house frequently and get on line like I am now. It's all about managing your life. I talk on the phone more often because I'm not able to get out as much. I'm not able to drive due to some problems I've

started to have with my vision. I've also developed symptoms of Narcolepsy which they are unable to diagnose....possibly related to medications or some sort of CNS problem. I've also had problems with my blood pressure getting too low. This may also be related to the Neuropathy. They aren't sure but as always we take one day at a time and try to treat the symptoms. I've come to grips with the fact that they don't know what's going to happen next because the doctors really don't have a clue what they're dealing with when trying to treat Scoliosis patients with complications. I would say Harrington Rod patients but after meeting so many others with similar complications with other hardware I just think it's the disease. So, we have to take what life's thrown at us and take it one day at a time. We've got to find a way to make grandma's home made chocolate chips cookies out of mud.*VBS* It can be

done. You just have to believe in yourselves and your doctor. Never give up! Have faith because it truly can move mountains. As far as surgeries go....that's a personal decision. It's all about what you're willing to risk. How bad is it really? There is no fix all. This will never go away. If something isn't stable I can understand your wanting to fix it. But, if it's pain that could be treated less invasive say with a pain pump or a nerve medication like Lyrica then I'd put the surgery off for a little while. Just make sure you've tried everything else first. Make sure you understand the risk involved in the surgery you're planning to have. Then ask yourself if it's worth taking that kind of risk. Sometimes just modifying your life can make a huge difference. You may have to work part-time or not at all. That's better than risking surgery in my mind but

that's me. You may have to take more frequent rests (laying down say with a heating pad). You may have to do aqua therapy for the rest of your life like me. It definitely cuts into the checking but then down sizing and changing the way you shop could be the answer to delaying a surgery that may be even better by the time you reach your breaking point say 5 years down the road. I didn't mean to ramble on so if you have any other questions please don't hesitate to let me know. Take care.........Zade"MELODY KING,DAVID LANE" <melodylane2195@...> wrote: Thanks for the offer to help with insurance issue! I will be taking you up on it if my ins. company denies the surgery! You said your doctor wouldn't do ADR for you? What kind of surgery did you end up with? If you had a fusion, what levels are fused and how are you doing overall now? Melody melody>Date: Thu, 28 Feb 2008 19:17:20 -0000>>Hi Melody!>Feel free to jump in anytime with an introduction >>>> >> > I just joined this group and would like to be able to post messages.>Thank> > you! Melody> >>> Never miss a thing. Make your homepage.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi Margo,

I'm sorry to hear about the pain you are living with. It sounds like you

have a great attitude though...I'm sure that helps you get through most

days. I don't know anything about the metronic pain pump. Does it help

more than other pain meds? I have been on the fentanyl patch, norco,

oxycodone and a variety of muscle relaxers. They help some, but not enough.

You wrote that you used to do medical claims. Do you mind me asking if you

are on disability or social security now? If so, was it a long process? I

am able to work part time now, but I don't know how long I will be able to

keep working.

Thanks for sharing your medical history with me. Oh...I am also curious

about how old you are?

Thanks,

Melody

>From: Margo <mail_margo@...>

>Reply-

>

>Subject: Re: melody

>Date: Tue, 4 Mar 2008 00:57:24 -0800 (PST)

>

>I am fused from T3-S1. I live with chronic pain. Currently I have a

>metronic pain pump. I do the usual routine with the breakthrough meds,

>biofreeze, moist heat, physical therapy (water), lay down with several

>pillows propped around me. I've got allergy induced asthma with a lung

>restriction due to the scoliosis. Since my last back fusion, 2001, I've

>developed idiopathic Neuropathy. They also discovered a Chiari 1 in my

>last cat scan but cannot do further testing due to the pain pump. I suffer

>from Migraines which my doctor says is triggered from the cervical

>radiculopathy. I've got a disc bulge somewhere between C5 and C6 if memory

>serves me correctly. There is also a bone spur in that same region. I

>have numbness in my legs, right foot, back, and right under arm and breast.

> I have radiating pain in my left shoulder, right arm, neck and back, both

>hips and legs. I fall frequently despite using a cane. My foot will drop

>and down I go. My Neurologist mentioned

> last week that she will probably have to put braces on my feet within the

>next two years.

>

> So....I try to manage it all as best I can. It's not easy but you have

>to find a way to make your life as full as it was before. I use to be very

>active both physically and emotionally. Now, it's hard. I try to take one

>day at a time and place one foot in front of the other and force myself to

>pace it. When I have a good day it's hard to make myself lay down

>frequently so I've taken up a hobby called " reading " .*lol* When I'm having

>difficulty breathing or having a bad pain day I try to get up and walk a

>little around the house frequently and get on line like I am now. It's all

>about managing your life. I talk on the phone more often because I'm not

>able to get out as much. I'm not able to drive due to some problems I've

>started to have with my vision. I've also developed symptoms of Narcolepsy

>which they are unable to diagnose....possibly related to medications or

>some sort of CNS problem. I've also had problems with my blood pressure

>getting too low. This may

> also be related to the Neuropathy. They aren't sure but as always we

>take one day at a time and try to treat the symptoms. I've come to grips

>with the fact that they don't know what's going to happen next because the

>doctors really don't have a clue what they're dealing with when trying to

>treat Scoliosis patients with complications. I would say Harrington Rod

>patients but after meeting so many others with similar complications with

>other hardware I just think it's the disease.

>

> So, we have to take what life's thrown at us and take it one day at a

>time. We've got to find a way to make grandma's home made chocolate chips

>cookies out of mud.*VBS* It can be done. You just have to believe in

>yourselves and your doctor. Never give up! Have faith because it truly

>can move mountains.

>

> As far as surgeries go....that's a personal decision. It's all about

>what you're willing to risk. How bad is it really? There is no fix all.

>This will never go away. If something isn't stable I can understand your

>wanting to fix it. But, if it's pain that could be treated less invasive

>say with a pain pump or a nerve medication like Lyrica then I'd put the

>surgery off for a little while. Just make sure you've tried everything

>else first. Make sure you understand the risk involved in the surgery

>you're planning to have. Then ask yourself if it's worth taking that kind

>of risk. Sometimes just modifying your life can make a huge difference.

>You may have to work part-time or not at all. That's better than risking

>surgery in my mind but that's me. You may have to take more frequent rests

>(laying down say with a heating pad). You may have to do aqua therapy for

>the rest of your life like me. It definitely cuts into the checking but

>then down sizing and changing

> the way you shop could be the answer to delaying a surgery that may be

>even better by the time you reach your breaking point say 5 years down the

>road.

>

> I didn't mean to ramble on so if you have any other questions please

>don't hesitate to let me know. Take care.........Zade

>

> " MELODY KING,DAVID LANE " <melodylane2195@...> wrote:

> Thanks for the offer to help with insurance issue! I will

>be taking you up on it if my ins. company denies the surgery! You said

>your doctor wouldn't do ADR for you? What kind of surgery did you end up

>with? If you had a fusion, what levels are fused and how are you doing

>overall now?

>

> Melody

> melody

> >Date: Thu, 28 Feb 2008 19:17:20 -0000

> >

> >Hi Melody!

> >Feel free to jump in anytime with an introduction

> >

> >

> >

> > >

> > > I just joined this group and would like to be able to post messages.

> >Thank

> > > you! Melody

> > >

> >

> >

>

>

>

>

>

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

> Never miss a thing. Make your homepage.

>

>

>

>

>

>

>

>

>

>

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

>Be a better friend, newshound, and know-it-all with Mobile. Try it

>now.

[Guest guest]

Melody, There are others here on the pain pump. It doesn't fix it by itself but it helps in combination with other things. You said you were on the fentanyl patch...my pump has fentanyl in it along with a muscle relaxant and a numbing medication. I still take breakthrough meds like hydrocodine/Norco and a muscle relaxant. I also take Lyrica and may be started on something else soon. My doctor calls it a cocktail!*lol* They know everyone is different so they mix until you can manage it. No I am no longer working. I tried as long as I could until I was hurting so bad from back pain and migraines that I couldn't follow the meetings and forgot how to log onto my computer. It scared me pretty good and I realized I wouldn't want someone like me processing my claims....so I got up and left. I was on leave for awhile. I can't remember how long it was but my husband talked me

into calling the social security office. I felt this horrible guilt for taking money for nothing. He drilled it in my head that I'd paid for that benefit and I should apply for it. So, I picked up the phone one day and called. When the lady answered on the other end I opened my mouth and started bawling like a baby!!! She was so kind and told me to calm down. I couldn't talk for awhile so she just asked yes and no questions like was I calling to about disability. Was I no longer able to work. Then she asked how long I'd worked....things like that. Apparently I wasn't the first to be upset over an illness that I had to admit defeat over.... Making that call to social security was probably one of the hardest things I've ever done. God was watching over me because she said if I'd waited another day I would no longer have qualified because I'd been off work so long. She said

not to worry if I was denied the first time because that happened to everyone. Once you are denied you get an attorney. They can walk you through the rest. They resubmit it and in my case they only used the information from the doctors that put me in ICU and didn't look at any of the scans or Xrays. All the doctors that were helping as far as say my "surgeon" they didn't look at and denied me again. So........we gathered all that back up and went before a judge and the room was so quiet you could drop a pin. He told me 2002 was a good year. I felt the blood drain from my face....then said, "I don't understand". He looked at me smiling and said, "That's the only year you weren't in the hospital". I thought he was going to deny it right there. I couldn't think or I would have been able to tell him I'd been recovering from a multiple 360 extended fusion that had complications and spent a year in physical

therapy. At the end of the year they found another disk herniated and suggested more surgery....*sigh* Then he asked if I was getting better. I told him no and he asked why. I then explained how we were the first generation of Harrington rod patients. Everyone knows the story here. We look forward to multiple surgeries and living with chronic pain. Everyones back is a little different with it's complications but we are all having complications. Mines a little touchy because I've had some severe allergic reactions while having allergy induced asthma with a lung restriction...SI joints are blown but the surgery for that only has a 50/50 success rate...because of the extended fusion my hips are eat up with arthritis....my knees will probably be next but they aren't sure...I have flatback...nerve pain... The list goes on... Anyway, once I was done he flipped through the file and then turned to the

occupational expert and asked a series of questions. I couldn't tell you what they were because they were all legal terms. I do know he answered "NO" to all the questions and then the judge turned to me and apologized for having me come. That was it. My attorney asked to add some things and every time she opened her mouth the judge replied, "I already know that" or "I already have that" until he interrupted and said there's nothing further to add. We left and the attorney said it was the shortest one she'd done and she wasn't sure what he was thinking but that I should have qualified. Then a couple of weeks later I got something in the mail from the court that basically said I qualified for 100% social security disability. It listed out the amounts, that I qualified also for medicare and that my kids would also receive a check. They even back dated it from about 6 months after I left work. It was like someone lifted

this huge weight off my shoulders. I qualified for it as of the end of 1999 which would have put me about 35 years old. I'm now 43. You asked if social security was a long process....YES! My first check arrived in June of 2003. I'd just had my pain pump installed and was having an allergic reaction to the pain meds. Before surgery I'd had a severe reaction to the antibiotic they put in the IV while waiting to go in. That's a long story but the point was that I'd had so many meds trying to make me comfortable over the years that my body was finally rejecting everything. It was a hard road the next few years. Looking back I feel blessed for having walked it because it's been an opportunity for character building. You see........we can help so many others with various problems because we've been through so much. God made us such strong individuals!!!!!!!! We've

overcome obstacles that most people couldn't imagine. We can just look at an elderly woman and tell when she is about to fall. There have been man times that I just moved my cane just enough for her to catch my arm and it held us both. Or like the other day a man from my church said he wouldn't have been there that morning if it hadn't been for me. I'd given him a small bottle of BioFreeze to help with his arthritis in his low back. Or the pillow I told my grandmother in law to use between her knees. We have so much to give because this monster of a disease has actually been a wealth of information that you wouldn't have understood had you not lived it. How can we not see the blessing in all this??? I truly do hope you find the answers you are looking for. We are all different and we'll all take separate paths due to the decisions we make. As long as we make them with

no regrets....think about them....be at peace with them before we jump and then regardless of the outcome we can overcome....*s* Take care........Zade "MELODY KING,DAVID LANE" <melodylane2195@...> wrote: Hi Margo,I'm sorry to hear about the pain you are living with. It sounds like you have a great attitude though...I'm sure that helps you get through most days. I don't know anything about the metronic pain pump. Does it help more than other pain meds? I have been on the fentanyl

patch, norco, oxycodone and a variety of muscle relaxers. They help some, but not enough.You wrote that you used to do medical claims. Do you mind me asking if you are on disability or social security now? If so, was it a long process? I am able to work part time now, but I don't know how long I will be able to keep working.Thanks for sharing your medical history with me. Oh...I am also curious about how old you are?Thanks,Melody>From: Margo <mail_margo >>Reply- > >Subject: Re: melody>Date: Tue, 4 Mar 2008 00:57:24 -0800 (PST)>>I am fused from T3-S1. I live

with chronic pain. Currently I have a >metronic pain pump. I do the usual routine with the breakthrough meds, >biofreeze, moist heat, physical therapy (water), lay down with several >pillows propped around me. I've got allergy induced asthma with a lung >restriction due to the scoliosis. Since my last back fusion, 2001, I've >developed idiopathic Neuropathy. They also discovered a Chiari 1 in my >last cat scan but cannot do further testing due to the pain pump. I suffer >from Migraines which my doctor says is triggered from the cervical >radiculopathy. I've got a disc bulge somewhere between C5 and C6 if memory >serves me correctly. There is also a bone spur in that same region. I >have numbness in my legs, right foot, back, and right under arm and breast. > I have radiating pain in my left shoulder, right arm, neck and back, both >hips and legs. I fall frequently despite using a cane. My

foot will drop >and down I go. My Neurologist mentioned> last week that she will probably have to put braces on my feet within the >next two years.>> So....I try to manage it all as best I can. It's not easy but you have >to find a way to make your life as full as it was before. I use to be very >active both physically and emotionally. Now, it's hard. I try to take one >day at a time and place one foot in front of the other and force myself to >pace it. When I have a good day it's hard to make myself lay down >frequently so I've taken up a hobby called "reading".*lol* When I'm having >difficulty breathing or having a bad pain day I try to get up and walk a >little around the house frequently and get on line like I am now. It's all >about managing your life. I talk on the phone more often because I'm not >able to get out as much. I'm not able to drive due to some problems I've

>started to have with my vision. I've also developed symptoms of Narcolepsy >which they are unable to diagnose....possibly related to medications or >some sort of CNS problem. I've also had problems with my blood pressure >getting too low. This may> also be related to the Neuropathy. They aren't sure but as always we >take one day at a time and try to treat the symptoms. I've come to grips >with the fact that they don't know what's going to happen next because the >doctors really don't have a clue what they're dealing with when trying to >treat Scoliosis patients with complications. I would say Harrington Rod >patients but after meeting so many others with similar complications with >other hardware I just think it's the disease.>> So, we have to take what life's thrown at us and take it one day at a >time. We've got to find a way to make grandma's home made chocolate

chips >cookies out of mud.*VBS* It can be done. You just have to believe in >yourselves and your doctor. Never give up! Have faith because it truly >can move mountains.>> As far as surgeries go....that's a personal decision. It's all about >what you're willing to risk. How bad is it really? There is no fix all. >This will never go away. If something isn't stable I can understand your >wanting to fix it. But, if it's pain that could be treated less invasive >say with a pain pump or a nerve medication like Lyrica then I'd put the >surgery off for a little while. Just make sure you've tried everything >else first. Make sure you understand the risk involved in the surgery >you're planning to have. Then ask yourself if it's worth taking that kind >of risk. Sometimes just modifying your life can make a huge difference. >You may have to work part-time or not at all. That's better

than risking >surgery in my mind but that's me. You may have to take more frequent rests >(laying down say with a heating pad). You may have to do aqua therapy for >the rest of your life like me. It definitely cuts into the checking but >then down sizing and changing> the way you shop could be the answer to delaying a surgery that may be >even better by the time you reach your breaking point say 5 years down the >road.>> I didn't mean to ramble on so if you have any other questions please >don't hesitate to let me know. Take care.........Zade>>"MELODY KING,DAVID LANE" <melodylane2195msn> wrote:> Thanks for the offer to help with insurance issue! I will >be taking you up on it if my ins. company denies the surgery! You said >your doctor wouldn't do ADR for you? What kind of surgery did you end up

>with? If you had a fusion, what levels are fused and how are you doing >overall now?>> Melody> melody> >Date: Thu, 28 Feb 2008 19:17:20 -0000> >> >Hi Melody!> >Feel free to jump in anytime with an introduction > >> >> >> > >> > > I just joined this group and would like to be able to post messages.> >Thank> > > you! Melody> > >> >> >>>>>>>---------------------------------> Never miss a thing. Make your

homepage.>>>>>>>>>>>--------------------------------->Be a better friend, newshound, and know-it-all with Mobile. Try it >now.

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hi Melody,

I just remembered that one of my buddies from a hip replacement

support group has had a lot of correspondence with a person (possibly

a moderator) of an artificial disk replacement support group. I found

the link to his site in my bookmarks. I recall doing a search for

Harrington Rods a while back on that site and not finding much

current, but it might be worth a post there if you haven't already

discovered and done so yourself. Here's the link

http://adrsupport.org/eve/forums

Good luck to you,

loriann

> > >

> > > I just joined this group and would like to be able to post messages.

> >Thank

> > > you! Melody

> > >

> >

> >

>

[Guest guest]

Loriann, thanks for the info about the ADR forum. I'll look at the site

soon. Melody

>From: " loriann262000 " <lcmelko@...>

>Reply-

>

>Subject: Re: melody

>Date: Tue, 11 Mar 2008 15:35:30 -0000

>

>Hi Melody,

>

>I just remembered that one of my buddies from a hip replacement

>support group has had a lot of correspondence with a person (possibly

>a moderator) of an artificial disk replacement support group. I found

>the link to his site in my bookmarks. I recall doing a search for

>Harrington Rods a while back on that site and not finding much

>current, but it might be worth a post there if you haven't already

>discovered and done so yourself. Here's the link

>

>http://adrsupport.org/eve/forums

>

>Good luck to you,

>

>loriann

>

>

> > > >

> > > > I just joined this group and would like to be able to post messages.

> > >Thank

> > > > you! Melody

> > > >

> > >

> > >

> >

>

>

[Guest guest]

Hello Everyone.

I am new. My Dr. believes I have RA. I have not had any diagnostic tests done

as yet. (We are changing insurances.)

Please, would you all share of tests that NEED to be done. I don't want to go

through a bunch just to get a diagnosis. (Ones that aren't necessary.) I did

this when I had to have one of my parathyroids taken out. One test after

another, hoping that that test would be the last, and I would FINALLY have a

diagnosis and the needed surgery. I don't want to do that again...if I can help

it.

I am 43 years old and have had pain for several years. But it is only this year

that it have become kind of bothersome. (I hurt a lot of the time.)

I have pain in my elbows, index and pinky fingers, shoulders, hips, and

sometimes wrists and knees. (My knees are very weak!) My joints on my fingers

are noticeably large.

I have quite a lot of pain when getting up during the night, or after sitting

for a time. I have also dealt with anemia for quit some time (years) and today

found material on an RA sight saying that the unexplained (periodic) chest pain

I have been having for about 4 years could be Pericarditis, due to RA.

I am the Mother of 6 children still at home and my husband is a Pastor of a

small Baptist Church here in Colorado.

I'm glad to have found this group! For support, information, and encouragement.

Thank you for allowing me to be a part of it.

Have a WONDERFUL evening everyone!

Melody

[Guest guest]

Hi Melody - welcome to the group. I'm not sure of the exact name of the tests

that would be done, but from what I understand, there is bloodwork to get a

diagnosis and sometimes x-rays to get a baseline study and also to determine the

damage that may have already been done due to RA (if your doctor deems that is

what you have). I say " from what I understand " because I have been dealing with

RA and Fibromyalgia with limited funds. I don't have insurance, so my doctors

are working with me to get the treatment and tests that I need with the least

possible expense.

My main recommendations would be to get with a Rheumatologist who has a good

reputation. One that will really listen to what you are saying and work with you

towards getting this all diagnosed and properly treated. If it does turn out

that you have RA, it is usually treated aggressively. Be sure to keep in contact

with your doctors if you have any pain - we don't need to live with pain.

Please keep us posted on what you find out and what your diagnosis is. Praying

for pain free days ahead for you.....Doreen

Hello Everyone.

I am new. My Dr. believes I have RA. I have not had any diagnostic tests done

as yet. (We are changing insurances.)

Please, would you all share of tests that NEED to be done. I don't want to go

through a bunch just to get a diagnosis. (Ones that aren't necessary.) I did

this when I had to have one of my parathyroids taken out. One test after

another, hoping that that test would be the last, and I would FINALLY have a

diagnosis and the needed surgery. I don't want to do that again...if I can help

it.

I am 43 years old and have had pain for several years. But it is only this

year that it have become kind of bothersome. (I hurt a lot of the time.)

I have pain in my elbows, index and pinky fingers, shoulders, hips, and

sometimes wrists and knees. (My knees are very weak!) My joints on my fingers

are noticeably large.

I have quite a lot of pain when getting up during the night, or after sitting

for a time. I have also dealt with anemia for quit some time (years) and today

found material on an RA sight saying that the unexplained (periodic) chest pain

I have been having for about 4 years could be Pericarditis, due to RA.

I am the Mother of 6 children still at home and my husband is a Pastor of a

small Baptist Church here in Colorado.

I'm glad to have found this group! For support, information, and

encouragement. Thank you for allowing me to be a part of it.

Have a WONDERFUL evening everyone!

Melody

[Guest guest]

Welcome Melody,

You have already received great advice. I just want to welcome you to

the group. Were always here to help you through whatever comes your

way. We have a wonderful moderator that helps with info.

So, stay awhile, and just know I'm here if you ever need a shoulder.

Tawny

--- In , " Melody " <ahearttowardhome@...>

wrote:

>

> Hello Everyone.

>

> I am new. My Dr. believes I have RA. I have not had any diagnostic

tests done as yet. (We are changing insurances.)

>

> Please, would you all share of tests that NEED to be done. I don't

want to go through a bunch just to get a diagnosis. (Ones that aren't

necessary.) I did this when I had to have one of my parathyroids taken

out. One test after another, hoping that that test would be the last,

and I would FINALLY have a diagnosis and the needed surgery. I don't

want to do that again...if I can help it.

>

> I am 43 years old and have had pain for several years. But it is only

this year that it have become kind of bothersome. (I hurt a lot of the

time.)

>

> I have pain in my elbows, index and pinky fingers, shoulders, hips,

and sometimes wrists and knees. (My knees are very weak!) My joints on

my fingers are noticeably large.

>

> I have quite a lot of pain when getting up during the night, or after

sitting for a time. I have also dealt with anemia for quit some time

(years) and today found material on an RA sight saying that the

unexplained (periodic) chest pain I have been having for about 4 years

could be Pericarditis, due to RA.

>

> I am the Mother of 6 children still at home and my husband is a Pastor

of a small Baptist Church here in Colorado.

>

> I'm glad to have found this group! For support, information, and

encouragement. Thank you for allowing me to be a part of it.

>

> Have a WONDERFUL evening everyone!

> Melody

>

[Guest guest]

Melody,

Is your physician a rheumatologist? If not, see a rheumatologist and

he or she will determine, after taking your history and examining you,

what tests are needed.

Good luck.

Not an MD

On Thu, Jul 9, 2009 at 8:25 PM, Melody<ahearttowardhome@...> wrote:

> Hello Everyone.

>

> I am new.  My Dr. believes I have RA.  I have not had any diagnostic tests

done as yet.  (We are changing insurances.)

>

> Please, would you all share of tests that NEED to be done.  I don't want to go

through a bunch just to get a diagnosis.  (Ones that aren't necessary.)  I did

this when I had to have one of my parathyroids taken out.  One test after

another, hoping that that test would be the last, and I would FINALLY have a

diagnosis and the needed surgery.  I don't want to do that again...if I can help

it.

>

> I am 43 years old and have had pain for several years.  But it is only this

year that it have become kind of bothersome.  (I hurt a lot of the time.)

>

> I have pain in my elbows, index and pinky fingers, shoulders, hips, and

sometimes wrists and knees.  (My knees are very weak!)  My joints on my fingers

are noticeably large.

>

> I have quite a lot of pain when getting up during the night, or after sitting

for a time.  I have also dealt with anemia for quit some time (years) and today

found material on an RA sight saying that the unexplained (periodic) chest pain

I have been having for about 4 years could be Pericarditis, due to RA.

>

> I am the Mother of 6 children still at home and my husband is a Pastor of a

small Baptist Church here in Colorado.

>

> I'm glad to have found this group!  For support, information, and

encouragement.  Thank you for allowing me to be a part of it.

>

> Have a WONDERFUL evening everyone!

> Melody

[Guest guest]

Aran:

Let's see if I got this straight. I buy my packet of sun dried tomatoes. I

rehydrate them. I pat them dry. I take little ziplock bags and I CAN PUT THEM IN

MY FREEZER.?????????????

When I want to eat them, what do I do. Just take them out, let them thaw and put

them in my salads?

that's the only place I would use them. I don't put them in soups or sauces

because Alan won't eat them.

I just like them in my salad.

thanks much

Wow, I CAN FREEZE THEM??

That would be ideal.

Melody

[Guest guest]

As you said in your other mail, you can rehydrate as much or as little as

you wish and if you do have any rehydrated left over they will keep in the

fridge for a day or two, no longer though.. And yes you can freeze them when

dry or rehydrated you can still freeze them..

By the way how did the sprouts go? Any good?

Aran

Check Out The Raw Divas!

www.greensmoothiequeen.com

www.rawmom.com

[Guest guest]

Aran:

How did my sprouts go??

FABULOUS!!!!

I keep them now in my new Lock & Lock containers and they stay FRESH.

I bring my sprouts to breakfast with me and add them to my egg.

I make a sprout salad for lunch, and a sprout salad for dinner.

It is the most colorful salad with all sorts of neat things in them. AND NOW I

WILL BE ADDING MY SUN DRIED TOMATOES.

And last night at 10 p.m. my husband said to me:

" Can you make me a sprout wrap? "

So I took one of my low carb wraps, I grabbed a handful of my sprouts, I added a

splash of Alan's honey mustard dressing, I wrapped the wrap. I handed it to him.

HE WAS IN HEAVEN.

I LOVE MY SPROUTS!!

lol

Melody