Hi New here

[Guest guest]

Hi ,

I'm Kim, and my daughter Maggie was diagnosed with JA in December, at

almost 3. I'm so sorry your son was diagnosed, but I'm sure once you

find the right treatment things will get better.

Maggie was started on Naprosyn but it didn't do much, so then she

tried oral methotrexate, and that still wasn't enough. So she's been

on methotrexate injections for about a month and seems to finally be

making some improvement. She had cortisone injections in February

that helped, too.

She also has uveitis, but she had an appt. with the eye doctor today

and we were told her eyes are clear. Yay! She gets eye drops twice a

day, though.

Good luck as you navigate this process. It's been emotionally trying

for us, but it does get better.

Kim

-- In , " kjviers3 " <jlviers@...> wrote:

>

> Hi again, I just wanted to thank everyone who responded. It really

helps not having to deal

> with this alone. I am glad that I found this group. Thanks again.-

-

>

>

> >

> > Hi my name is and my 4 yo son was diagnosed with JRA just 2

days ago. He has

> been

> > dealing with the pain for 2 years in his knees and ankles before

we got the right referral to

> > the right doctor. I suspected this was the problem since RA has

afflicted many members of

> > my family and his complaints seemed very similar to theirs. My

husband doesn't want to

> talk

> > about this diagnosis at all. I need to talk and he doesn't want

to talk. They only have my

> son

> > on Naproxen right now (oh..and zantac for the stomach upset from

the naproxen). Has

> > anyone had success with just the naproxen or does everyone

usually end up on stronger

> > meds i.e.methotrexate, etc?

> >

>

[Guest guest]

I now how you feel right now. My daughter was diag in Jan she has had pain for a while. we have tried motrin naprosyn mobic all with fail. she started mtx 3 weeks ago no response from it yet. we are going to try pred. for a while to try to get her under control. It is a long hard process to have to go through. The people on the group are GOD SENT. They know more than i think I ever will. Good luck and my prayers are with you. gina abi 3 JRAkjviers3 <jlviers@...> wrote: Hi again, I just wanted to thank everyone who responded. It really helps not having to deal with this alone. I am glad that I found this group. Thanks again.-->> Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has been > dealing with the pain for 2 years in his knees and ankles before we got the right referral to > the right doctor. I suspected this was the problem since RA has afflicted many members of > my family and his complaints seemed very similar to theirs. My husband doesn't want to talk > about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my son > on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has

> anyone had success with just the naproxen or does everyone usually end up on stronger > meds i.e.methotrexate, etc?>

[Guest guest]

Hello-

I'm new here too. My 7yo daughter was diagnosed pauci this March,

primarily knees, some fingers also. Six weeks of naproxen and then

meloxicam (mobic) didn't seem to have any effects, positive or

negative, so she then had steroid injections in both knees and

started methotrexate. Wow! The injections had an immediate positive

effect- Ella even rode her bike one day (one is better than none,

right?), although it has started to 'wear off' now, a few weeks

later. The doctor has doubled her methotrexate dose and started her

back on mobic too, and I'm starting to feel nervous about the

medicines. She's been complaining of upset stomach for a week. I'll

call the rheumy tomorrow, but this disease is frustrating.

Amy - mom of Ella,7

> >

> > Hi my name is and my 4 yo son was diagnosed with JRA just 2

days ago. He has

> been

> > dealing with the pain for 2 years in his knees and ankles before

we got the right referral to

> > the right doctor. I suspected this was the problem since RA has

afflicted many members of

> > my family and his complaints seemed very similar to theirs. My

husband doesn't want to

> talk

> > about this diagnosis at all. I need to talk and he doesn't want

to talk. They only have my

> son

> > on Naproxen right now (oh..and zantac for the stomach upset from

the naproxen). Has

> > anyone had success with just the naproxen or does everyone

usually end up on stronger

> > meds i.e.methotrexate, etc?

> >

>

[Guest guest]

I know how u feel. Abi had the inj also she felt wonderful for a week or 2 but now it came back with a vengince. We are now trying prednisone along with the mtx and motrin. Good luck I hope it all works out. Keep me infromed. Abi 3 SystemicAmy Crowley <accrowley@...> wrote: Hello-I'm new here too. My 7yo daughter was diagnosed pauci this March, primarily knees, some fingers also. Six weeks of naproxen and then meloxicam (mobic) didn't seem to have any effects,

positive or negative, so she then had steroid injections in both knees and started methotrexate. Wow! The injections had an immediate positive effect- Ella even rode her bike one day (one is better than none, right?), although it has started to 'wear off' now, a few weeks later. The doctor has doubled her methotrexate dose and started her back on mobic too, and I'm starting to feel nervous about the medicines. She's been complaining of upset stomach for a week. I'll call the rheumy tomorrow, but this disease is frustrating. Amy - mom of Ella,7> >> > Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has > been > > dealing with the pain for 2 years in his knees and ankles before we got the right referral to > > the right doctor. I suspected this was the problem since RA has afflicted many members

of > > my family and his complaints seemed very similar to theirs. My husband doesn't want to > talk > > about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my > son > > on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has > > anyone had success with just the naproxen or does everyone usually end up on stronger > > meds i.e.methotrexate, etc?> >>

[Guest guest]

I know how u feel. Abi had the inj also she felt wonderful for a week or 2 but now it came back with a vengince. We are now trying prednisone along with the mtx and motrin. Good luck I hope it all works out. Keep me infromed. Abi 3 SystemicAmy Crowley <accrowley@...> wrote: Hello-I'm new here too. My 7yo daughter was diagnosed pauci this March, primarily knees, some fingers also. Six weeks of naproxen and then meloxicam (mobic) didn't seem to have any effects,

positive or negative, so she then had steroid injections in both knees and started methotrexate. Wow! The injections had an immediate positive effect- Ella even rode her bike one day (one is better than none, right?), although it has started to 'wear off' now, a few weeks later. The doctor has doubled her methotrexate dose and started her back on mobic too, and I'm starting to feel nervous about the medicines. She's been complaining of upset stomach for a week. I'll call the rheumy tomorrow, but this disease is frustrating. Amy - mom of Ella,7> >> > Hi my name is and my 4 yo son was diagnosed with JRA just 2 days ago. He has > been > > dealing with the pain for 2 years in his knees and ankles before we got the right referral to > > the right doctor. I suspected this was the problem since RA has afflicted many members

of > > my family and his complaints seemed very similar to theirs. My husband doesn't want to > talk > > about this diagnosis at all. I need to talk and he doesn't want to talk. They only have my > son > > on Naproxen right now (oh..and zantac for the stomach upset from the naproxen). Has > > anyone had success with just the naproxen or does everyone usually end up on stronger > > meds i.e.methotrexate, etc?> >>

[Guest guest]

Hi Faye

Please call your Dr. you never know what might happen and it is always

better to ask the pro's.

Just as a side about asking your Dr. In my case, went for the 2 weeks

post-op exam. That morning was having problems breathing and that was one of

the things in the hand book from the hospital/Dr to tell them about. So did

lol. After my knee x-ray's, Dr told me that I should have a chest x-ray and

to stop on the way home at the imaging place. Husband, walker, and I

stopped, had the chest x-ray. Next day had a call from my reg. Dr. that

they had found a spot on my lung and need to do a CAT scan. It was just

old scar tissue. But you can see my point. Always ask the Dr. get the

x-rays of the knee if it is suggested.

It sounds like you are doing very well!

Let us know what he/she says

Gloria

[Guest guest]

Hi Faye, I would say call your MD at the very least. Better safe than

sorry. I had LHT June 16. I remember being told to report anything

unusual. BTW I lived in the Buffalo area, Amherst, Orchard Pk for 18

years. I miss all the good people up there.

Good Luck

Debbie

New Rochelle, NY

On 8/1/08, mms_crazy <mms.crazy1@...> wrote:

> I thought I would say Hi and introduce myself.

> I am Faye and I live in Western NY not far from Buffalo, NY.. I am

> 54 mother of 2 adult children and divorced.

> I had my knee replacement on July 1 2008..

> I am wondering if anyone had this issue

> Today I heard a very loud crunch in my knee when I was getting up

> from the toliet.

> I was able to walk with using a crutch to a chair and sit down again

> I sat down ok but straightening out the knee to put it on a foot

> stool was difficult but it did go straight. I am still having a

> slight issue with it straighting but it does do it.. I am in no real

> pain but I noticed it did swell a little on the right side of my knee

> (my right)

> Wondering if I should call the Dr about this or maybe it was just

> scar tissue breaking loose

> I did realize I need a support group on this knee since I do not know

> anyone that had it done.

> Thank you so much for listening

> I wish everyone a wonderful weekend

> Hugs

> Faye

>

>

>

--

You can explore the universe looking for somebody who is more

deserving of your love and affection than you are yourself,

and you will not find that person anywhere.

[Guest guest]

Faye,

Most of us thought we should be doing better and of course much faster.

You'll find out on this email group that those feelings are very normal.

The other " problem " is doing too much too soon. Ice and rest will make up

for that one. lol

Gloria

[Guest guest]

a,

Hi, first thing that struck me about the symptoms was possibly low stomach

acid... this might be why you can't absorb the vitamin B and might go some way

towards the food problems. Have you tried taking Betaine Hydrocloride with

your food? (can buy Lamberts off ebay for about £10 for 180. Read what Dr

Myhill has to say...

http://www.drmyhill.co.uk/wiki/Hypochlorhydria_-_lack_of_stomach_acid_-_can_caus\

e_lots_of_problems

Night sweats.. mine have been sorted by Serenity progesterone cream. (£20 for

3 months supply) Any idea of your progesterone /estrogen levels?

Have you done the saliva test to find out exactly where you are with your

adrenals? Genova diagnostics, £70, but £60 if you follow instructions in the

files for discounts. The test measures your cortisol at 4 points in the day

and shows exactly where you are. When the adrenals are sorted the thyroid

hormones may be tolerated much better.... I've been on cortisol since last

year and this year I've not had hayfever, I've suffered dreadfully for the

past 4 years... never had it before though....

Regards

>

> Hi everyone

>

> I'm new here but I had this site recommended to me by a member of another

forum and I am really hoping someone here can help me. I am experiencing a

sudden decline in health since a syncthen test 4 weeks ago but I will give a

brief history of myself first .... Well I'll try to brief!

>

>

[Guest guest]

Hello a and welcome to our forum where I hope you get all

the help and support you need.

I'm female, 45 , 2 kids. I was dx hypothyroid 8 years ago after a very

stressful period in my life. Felt a bit better on Thyroxine but only got up to

62.5 mcg a day (50 one day, 75 the next) before I hit the ceiling and any more

started to make me feel hyper. Unfortunately the 62.5 mcg isn't really enough

and I have made numerous attempts over the last few years to bump it up but

always with the same results. So I never have the energy or feel as good as I

think I could.

I also suffer occsasionally from food intolerances as opposed to allergies

always prompted by a stress to the body, eg antibiotic or morning after pill.

This normally presents as itching all over (formication?) but no rash, hives

etc

Fast forward to last year when again I had another very stressful year. I

started to feel very very exhausted in the autumn and by jan this year I was

very breathless. Had a very low B12 reading of 55 and started injections. Twice

I've been tested for Pernicious Amenia but both neg for antibodies.

I have felt somewhat better for the jabs but my TSH has been rising since last

summer and is now somewhere between 9 - 10. So alot of the benefits of the B12

have been hidden by my increasing hypothyroidism.

I got a referral to an endo who grudgingly agreed to do a syncathen test where

basically it showed my basline cortisol was a bit low but my adrenals reacted

OK when stressed. At the same time I decided to go and see a functional doctor

from Belgium who ran a barrage of tests and found I was low in loads of stuff,

vit d, calcium, T4, T3, selenium, zinc etc etc and gave me a load of

supplements to take a well as some natural porcine thyroid meds (not Armour).

Unfortunately this was about the same time as the synacthen test and 2 days

after starting the thyroid meds I started itching again so think another food

intolerance was started either by the new meds or the test. (I also had the

same reaction when I tried Nutri-Adrenal support at the beginning of the year as

suggested by Dr P.)

The Belgium doc also said I had a severe intolerance to dairy and bananas(!)

and that they were having as bad as an effect on me as gluten to a coeliac and

I was to stop it immediately.

Cutting to the chase I have now had itching for 4 weeks and I seem to be

reacting to all food so I have not been able to start any of the supplements. I

have tried an immunology jab but i don't think it's helping. The allergy doc

told me my problem was candida (no test done) and to cut out all sugar, most

carbs etc. It's gruelling and between the candida diet and my allergies I am

finding it hard to eat. I am basically eating meat, veg, limited fruit, rice

and some potatoes.

On top of this I am now getting night sweats, hot flushes, dizziness and now most

recently in the last couple of days slow pulse. because of my thyroid I have

never had a fast pulse (apart from when on higher doses of Thyroxine) but it is

dropping further. Last night before sleep it was 42 and I'm more than slightly

concerned. It is slow but also very bangy (if you know what I mean) and

sometimes it feels as if every beat is shaking my body.

I did wonder if the synacthen test had stressed my adrenals so much that I am

now lower on cortisol than before. Apparently cortisol is necessary for

reducing histamine so that could explain the increasing allergies. Also as I am

showing some poss meno symptoms if my adrenals are not producing other hormones

too.

I'm sorry this is so long but I felt it was necessary to include everything to

give a full picture. I am really quite desperate now as I don't know what to do

next. The endo's only suggestion was to up my Thyroxine (well why didn't I

think of that!!!!)

As a side note which may or may not be relevant, he referred me to Gatro

Intestinal doc who wants to give me an endoscopy. She is concerned that I seem

to have so many deficiences esp how low my B12 was and wants to see about

malabsorption, coeliacs etc.

Any help/advice/input would be very gratefully received

Many thanks

a

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.437 / Virus Database: 271.1.1/2950 - Release Date: 06/19/10

17:50:00

[Guest guest]

Oh a - I am so sorry to hear that you are going through all

this mess, and you seem to be going round in circles. Has the allergy doctor

not been able to find the specific foods you are allergic to - seems he is just

guessing and you really should be tested thoroughly for each one. First, you

should be tested to see if you have candida antibodies (and if so, how bad)

from Genova Diagnostics (you can get discounts for thyroid and adrenal testing

as a TPA member) - ask for details. You could also do with getting the 24 hour

salivary adrenal profile done through them too to see what amount of cortisol

and DHEA they are secreting at four specific times during the day. This is a 24

hour salivary test where you spit into a test tube at 8.00a.m. - 12 Noon -

4.00p.m and again at midnight. The results come back between 7 to 10 days.

You might suggest to your GP meanwhile that he prescribes for

you the PURE form of thyroxine available from dale's Pharmacy. Your ~GP

will know about this firm. The thyroxine is in liquid form with no fillers.

Have you been tested to see whether you have an allergy to maize, lactose etc.

These are often used as fillers in tablets, and definitely in levothyroxine.

Ask your GP also to test your ferritin (stored iron), vitamin

D3, magnesium, folate, copper and zinc. If any of these are low in the

reference range, no amount of thyroid hormone can get into the cells - and

these levels would need to be raised quickly.

The short synacthen tests ONLY checks to see whether you might

be suffering with 's disease (too little or no cortisol) or Cushing's

syndrome (too high a level of cortisol) and it does NOT check to see whether

you have low adrenal reserve. This is why we recommend the 24 hour salivary

test.

You have a lot of issues going on, and each needs to be treated

appropriately and, by a process of elimination, you should start to see light

at the end of the tunnel. Are you taking any medication (beside diet) for your

candida. Go to our web site www.tpa-uk.org.uk

and click on 'Hypothyroidism' in the Menu, and in the drop down Menu, click on

'Associated Conditions' and read the information there about the connection of

these with hypothyroidism.

You might wish to consider seeing our new Medical Adviser, Dr

Theodora Mantzourani. Check out the information about her on the web site. Go

to 'Medical Advisers' in the Menu, and you can read about her and her

speciality there.

Also, go to the FILES section of this Forum and read about

'Adrenals', 'Candida' and as much as you can about everything else. One last

think, have you been tested to see whether you could be suffering with mercury

poisoning caused through amalgam fillings. This could be a cause of your

problems, so perhaps you should consider being tested to see if this is a

possibility.

Luv - Sheila

Fast forward to last year when again I had another very stressful year. I

started to feel very very exhausted in the autumn and by jan this year I was

very breathless. Had a very low B12 reading of 55 and started injections. Twice

I've been tested for Pernicious Amenia but both neg for antibodies.

I got a referral to an endo who grudgingly agreed to do a syncathen test where

basically it showed my basline cortisol was a bit low but my adrenals reacted

OK when stressed. At the same time I decided to go and see a functional doctor

from Belgium who ran a barrage of tests and found I was low in loads of stuff,

vit d, calcium, T4, T3, selenium, zinc etc etc and gave me a load of

supplements to take a well as some natural porcine thyroid meds (not Armour).

Unfortunately this was about the same time as the synacthen test and 2 days

after starting the thyroid meds I started itching again so think another food

intolerance was started either by the new meds or the test. (I also had the

same reaction when I tried Nutri-Adrenal support at the beginning of the year

as suggested by Dr P.)

On top of this I am now getting night sweats, hot flushes, dizziness and now

most recently in the last couple of days slow pulse. because of my thyroid I

have never had a fast pulse (apart from when on higher doses of Thyroxine) but

it is dropping further. Last night before sleep it was 42 and I'm more than

slightly concerned. It is slow but also very bangy (if you know what I mean)

and sometimes it feels as if every beat is shaking my body.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.437 / Virus Database: 271.1.1/2950 - Release Date: 06/19/10

17:50:00

[Guest guest]

Welcome, a,

As a fellow candidiasis suffer, I would like to comment on one aspect of your

health history. You mentioned that you're eating rice and potatoes although

you're on an anti-candida diet. There are two reasons to avoid rice and

potatoes.

First, from the moment we start to chew starchy food, the starch begins to

convert to glucose. If candida is present, it is fed by the glucose.

Second, starch consumption triggers insulin secretion. Insulin is the regulator

of fat storage; when insulin is up, fat storage is increased; when insulin is

down, fat is released from the adipose cells and burned for fuel. By avoiding

starch we can reduce insulin secretion, thus reducing our fat storage and

increasing our available energy. (Personally, I feel much less fatigue when I

omit starches from my diet.)

You could consider replacing the rice and potatoes with nonstarchy vegetables,

and see how you feel.

Good luck and best regards!

.

> The allergy doc told me my problem was candida (no test done) and to cut out

all sugar, most carbs etc. It's gruelling and between the candida diet and my

allergies I am finding it hard to eat. I am basically eating meat, veg, limited

fruit, rice and some potatoes.

>

[Guest guest]

Hi everyone

Thanks so much for your immediate response and suggestions. It's really helpful

and heartening.

First of all, I had a meeting with my (new) GP today to get her up to speed on

what's happening to me. I'm not quite sure if she's a very good doc or a very

bad one - maybe you will have an opinion!

Regarding my most recent symptoms since the synacthen test, ie food

intolerances/allergies and peri meno symptoms, she was quite open to the fact

that the test could have caused all these. I was really expectng her to dismiss

the theory as the ramblings of a mad woman but she thought it was quite

feasible. The bit I'm not sure about is that she wants to do nothing about

either of these things at the mo. Her thinking is that my system needs time to

calm down and look at allergies etc in a month if still on going otherwise my

over active state could give lots of false positive results. Similarly if my

hormones have been upset by the test then the peri men symptms might disappear

with time too.

I got the usual blank about HC tho.

Regarding the candida I have just today posted a test to Genova so hopefully I

will get a def answer on that one. thank you for your advice on that.

Once I get a result if it's positive I will def be picking your brains altho I

do not know how I will live without potatoes on top of everything else! How

long have you had it for and are you seeing any success?

thank you for your suggestion re hypochlorhydria. I read the link and it

does ring an awful lot of bells. I am thinking I will get the test done for

that too and see what it says. I am always wary of just taking something without

knowing I def need it as I am so easily upset by meds so try to keep them to a

minimum. Interesting what you said about the hay fever though. What dose are

you on and did you put yourself on it or was it a doc?

Sheila thanks so much for your post. I had the Genova 24 hr cortisol test done

last year and it showed adrenal fatigue. My DHEA was in the normal range but my

cortisol was very low at every point and the total was only 9.9 (range 21-41).

I had private blood tests done recenntly and these were the things I am low in:

Vid D, Co enzyme Q10, calcium, selenium, zinc, copper, T3, and the oils that

omegas give you (EPA? or something like that). This is why they want to do

endoscopy so that they can see why Im malabsorbing.

Also maybe you can help with this. These were my iron results:

Iron 124 (40-150)

% transferrin saturation 41.37 (25-50)

Ferritin 20 (50-170 opt) (18-170 VN) whatever that means

Now I'm really confused because I've been told by 2 diff docs that these figs

are fine but I think the ferritin looks low - esp as I understand I need good

ferritin for my B12 jabs.

My problem is being able to tolerate any supplements I take which is what led

the allergy doc to suggest I had candida /leaky gut.

I'm sorry this is such a long post. I have one more question. Since the

synacthen test I have had several health issues as mentioned and last week I had

racing pulse, hot flushes, trembly hands, anxiety. In other words, possible

hyperthyroid symptoms or what I associate with 'toxic' symptoms, ie taking too

much thyrod meds with dodgy adrenals. At the weekend my pulse was bottoming out

very low but also very laboured and strong. I stopped the thyroxine for a

couple of days and I def feel a bit better today. The theory is that the

synacthen test (yes that again!) stimulated my adrenals to producee more

cortisol for a while and the unused thyroxine in my system was

activated. So here's the question (finally!) If I am low in cortisol and I

manage to get some HC isn't that going to have the same effect on me as the test

and make me feel awful all of the time?

Thanks again for all the help and input

a

>

> a,

>

> Hi, first thing that struck me about the symptoms was possibly low stomach

acid... this might be why you can't absorb the vitamin B and might go some way

towards the food problems. Have you tried taking Betaine Hydrocloride with

your food? (can buy Lamberts off ebay for about £10 for 180. Read what Dr

Myhill has to say...

http://www.drmyhill.co.uk/wiki/Hypochlorhydria_-_lack_of_stomach_acid_-_can_caus\

e_lots_of_problems

[Ed]

[Guest guest]

Hi Sheila

I have taken up your suggestion about seeing Dr M. I also had a quick chat with

her first to establish whether she think she can help me: I know what's wrong

(mostly) I just can't take the cures. She was very encouraging and

understanding and thinks she may be able to help so fingers crossed. I will

report back!

Many thanks

>

> Oh a - I am so sorry to hear that you are going through all this mess,

> and you seem to be going round in circles.

REST OF POST DELETED BY MODERATOR

PLEASE DELETE OLD MEESAGES, OR WE HAVE TO DO IT AND TO BE HONEST IT GETS A BIT

TEDIOUS.. MODERATOR

[Guest guest]

Hello All,

Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami J

brace(awfully uncomfortable)24/7 and alternate Philadelphia.

I guess some of you have had this type of surgery and I wanted to get feedback

about success/failure, pain after surgery, how to beat boredom! LOL, and how not

to gain weight for 6weeks of inactivity. Walking up the steps and out the

parking lot doesn't cut it.

Also, I just started sleeping on my back. More comfy b/c I'd wake up with jaw

pain with the Miami J diggging into it.

My follow up went well, got to see the xrays. My doc did a great job (Ratliff at

Jefferson, Philadelphia). It looks perfectly normal. Going back for more xrays

Nov 15. Doc's P.A. said it would get worse before it gets better. Left seems

fine but gettin pain on my right in my arm(C5 was the bone spur)

Did anyone of you get word when you can go back to work. I work part-time at a

cafe and there's lotsa reaching, bending, etc. I'm also a petsitter and losing

lots of money. I just want to be back to normal again. I've had brain

tumors/cancer and those surgeries were nothing compared to this! Less nerves in

the brain, I'm sure.

Any help and encouragement would be appreciated

Dana:-)

[Guest guest]

I do a lot of quieter hobbies during my recoverys...needlework, photo

restoration on the computer, online scrapbooking on kodak gallery (no actual

scrapbooking...just making albums on the site), didgital art and lots of

facebook...lol. During the critical recovery stages of surgeries I do a lot of

TV. I'll get whole series of TV shows I like and watch them strait through. 1

hour episodes are more tolerable then movies. Movies go too long and take too

much attention. what I look for is distraction from pain without much thinking

involved. Something to pass those first couple weeks.

Dont know if that helps but thats what I've been doing.

" Without rabbits a rabbits foot would be nothing but a disembodied

hand full of unidentified toes. " -Pogo

spinal problems

From: savvyblest@...

Date: Thu, 21 Oct 2010 19:56:35 +0000

Subject: Hi New here

Hello All,

Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami J

brace(awfully uncomfortable)24/7 and alternate Philadelphia.

I guess some of you have had this type of surgery and I wanted to get feedback

about success/failure, pain after surgery, how to beat boredom! LOL, and how not

to gain weight for 6weeks of inactivity. Walking up the steps and out the

parking lot doesn't cut it.

Also, I just started sleeping on my back. More comfy b/c I'd wake up with jaw

pain with the Miami J diggging into it.

My follow up went well, got to see the xrays. My doc did a great job (Ratliff at

Jefferson, Philadelphia). It looks perfectly normal. Going back for more xrays

Nov 15. Doc's P.A. said it would get worse before it gets better. Left seems

fine but gettin pain on my right in my arm(C5 was the bone spur)

Did anyone of you get word when you can go back to work. I work part-time at a

cafe and there's lotsa reaching, bending, etc. I'm also a petsitter and losing

lots of money. I just want to be back to normal again. I've had brain

tumors/cancer and those surgeries were nothing compared to this! Less nerves in

the brain, I'm sure.

Any help and encouragement would be appreciated

Dana:-)

[Guest guest]

Dana - I had a C4-7 fusion 2 1/2 years ago and was out for nearly 12 weeks

before I got back to work and more like 16 weeks before I was allowed to lift

anything, but each surgeon's advise is different. I too watched a lot of TV -

my doc did not allow me to be without he Miami J or Philadelphia for 8

weeks...And I slept mostly in a recliner it was better for me than lying

completely flat on my back. I had no real pain in my arms after the surgery - I

hd pain before the surgery and it was relieved by the surgery! I did have loss

of sensation in my fingers that was relieved after about a year. I have to say

it took about a year to feel normal and have all the relief I was going to get

follow the surgery.

The neck brace limited how much I could do, but the internet was a godsend. My

wife purchased a hospital style table that rolled and that was a godsend in that

it allowed me to move the computer around when it was too heavy to use any other

way... The neck brace was uncomfortable at least at first, but when fitted

properly with the padding in good shape - I had a spare set that were washed

every couple days - it became comfortable and actually my neck felt rested when

I wore it - which I am sure it would not have been if I had taken it off. Maybe

you need to be sure it is the right size? The PT or OT if you are seeing them

should be able to help with that.

The most important thing I think is you follow the directions of the surgeon

exactly as they each have their set of rules that together they know work to be

successful.

Best of luck to you - It does get better!! prayers to you for healing!!

Mark

>

>

> Hello All,

>

> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami

> J brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>

> I guess some of you have had this type of surgery and I wanted to get

> feedback about success/failure, pain after surgery, how to beat boredom!

> LOL, and how not to gain weight for 6weeks of inactivity. Walking up the

> steps and out the parking lot doesn't cut it.

>

> Also, I just started sleeping on my back. More comfy b/c I'd wake up with

> jaw pain with the Miami J diggging into it.

>

> My follow up went well, got to see the xrays. My doc did a great job

> (Ratliff at Jefferson, Philadelphia). It looks perfectly normal. Going

> back for more xrays Nov 15. Doc's P.A. said it would get worse before it

> gets better. Left seems fine but gettin pain on my right in my arm(C5 was

> the bone spur)

>

> Did anyone of you get word when you can go back to work. I work part-time

> at a cafe and there's lotsa reaching, bending, etc. I'm also a petsitter

> and losing lots of money. I just want to be back to normal again. I've had

> brain tumors/cancer and those surgeries were nothing compared to this!

> Less nerves in the brain, I'm sure.

>

> Any help and encouragement would be appreciated

>

> Dana:-)

>

>

>

>

>

>

[Guest guest]

My ACDF surgery is scheduled for 11/29/10 and one of the " side effects "

my NS told me to expect is a sore throat and/or loss of voice (usually

temporary) so I don't know that loud singing would be possible or practical.

My NS is one of those who says that walking is a must. He recommends

2-4 short walks a day after surgery, as pain allows.

and the gang -- jacdobe@...

Birds: Sadie (GW) Cookie (MMxBuffons) Jaderbug and Nissa (LJs) Sylvie

(RB2) ie (CAG)

Cats: Sully(DSH) Shadow(DMH) Sanouk & la(Siamese) Dogs: Skye

(Dobe/Husky) Reece (Dobe)

Bridge kids: Flirt, Tia, Munchkin, Jasmine, Chuckles, Angel, Indi,

Kayla, Sabien and our heart, Bubba.

Pics of the gang: http://community.webshots.com/user/jacdobe

Allparrots: http://pets./group/allparrots

The Coalition of PA Aviculturists: TCOPA

On 10/22/2010 7:34 AM, Peg wrote:

> I wonder if that would be OK after neck surgery?

[Guest guest]

Hi Dana,

Welcome to the group. I had a C5-6 Fusion with cadaver with hardware in June of

2007. My neuro doesn't believe in collars because she feels it makes the

surrounding muscles even weaker. My recuperation from the surgery went well even

without the collar. I felt great after surgery (because the pain prior to

surgery was a constant 7 or 8 even on medication) and was back to work around 4

or 5 weeks if I remember correctly. I think the norm is probably 6 weeks. I was

a paralegal and I had to sit for long periods of time, type constantly, pull on

boxes of files, etc. Like I mentioned before, the pain after the surgery was

nothing compared to the pain I was having prior to the fusion. I had pretty much

lost the use of my left hand and I was in excruciating pain from my neck (and

especially shoulder) all the way to my hand. It would hit and give me cold

chills it hurt so bad. While I was still groggy from the surgery I was thrilled

that I could actually lift my hand over my head and make a fist!

One thing to remember is to be very careful of not overdoing anything those

first few weeks, and you generally aren't told that the disks above and below

fusions weaken because of the increased pressure on those disks. Just be careful

to follow your doctors orders regarding what you should NOT be doing even if you

think you feel better and think you can do things. You don't want to have to go

back and have it done again!!

I had a previous surgery in 2006 a lumbar laminectomy so that they could get to

my tethered spinal cord and another spinal CORD surgery again in June of last

year. The pain from the neck was minimal compared to those. It doesn't feel

good, but it could be much worse! The pain you are having now should be less

than the pain you had prior to the surgery, and at least a different type of

pain that will decrease. I hope it relieves your problem and you have no

additional issues to deal with.

I have kept (and keep) my weight off by being extremely careful about eating

carbs because of the inactivity you don't need a lot of them for energy. You do

need to eat balanced meals and 3 meals a day so your body can heal properly, but

carbs are NOT your friend when you are so sedentary for several weeks. So watch

out for the whites (potatoes, corn, bread, rice, etc.).

Good luck and try not to go stir crazy. Facebook - bejeweled blitz and farmville

saved me during those times after my surgeries. haha

Barb

>

> Hello All,

>

> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami J

brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>

> I guess some of you have had this type of surgery and I wanted to get feedback

about success/failure, pain after surgery, how to beat boredom! LOL, and how not

to gain weight for 6weeks of inactivity. Walking up the steps and out the

parking lot doesn't cut it.

>

> Also, I just started sleeping on my back. More comfy b/c I'd wake up with jaw

pain with the Miami J diggging into it.

>

> My follow up went well, got to see the xrays. My doc did a great job (Ratliff

at Jefferson, Philadelphia). It looks perfectly normal. Going back for more

xrays Nov 15. Doc's P.A. said it would get worse before it gets better. Left

seems fine but gettin pain on my right in my arm(C5 was the bone spur)

>

> Did anyone of you get word when you can go back to work. I work part-time at a

cafe and there's lotsa reaching, bending, etc. I'm also a petsitter and losing

lots of money. I just want to be back to normal again. I've had brain

tumors/cancer and those surgeries were nothing compared to this! Less nerves in

the brain, I'm sure.

>

> Any help and encouragement would be appreciated

>

> Dana:-)

>

[Guest guest]

At this point the pain is so bad there isn't any other option. If they

told me strapping my butt to a rocket and shooting me over the moon

would help, I'd say, sign me up! Its been 7 months since my MVA and I

have NO quality of life like this. I can't work, I can't do any

housework for more than 10-15 minutes without being in terrible agony

the rest of the day, I can't even hold my macaws for more than a few

minutes due to the pain. I tried conservative treatments and nothing

even touched the pain. So I am willing to take the risk that the discs

above and below will go out because at worst it would be several years,

at best 10+ years so if I get 3-4 up to 10 years of relief then I will

be pleased.

And in any case, my discs look pretty good except the injured one so my

NS said the risk is slighter than if I had severe DDD or even moderate

DDD. He actually brought up that possibility without being prompted so

I feel pretty good about having the surgery.

and the gang -- jacdobe@...

Birds: Sadie (GW) Cookie (MMxBuffons) Jaderbug and Nissa (LJs) Sylvie

(RB2) ie (CAG)

Cats: Sully(DSH) Shadow(DMH) Sanouk & la(Siamese) Dogs: Skye

(Dobe/Husky) Reece (Dobe)

Bridge kids: Flirt, Tia, Munchkin, Jasmine, Chuckles, Angel, Indi,

Kayla, Sabien and our heart, Bubba.

Pics of the gang: http://community.webshots.com/user/jacdobe

Allparrots: http://pets./group/allparrots

The Coalition of PA Aviculturists: TCOPA

On 10/22/2010 10:10 AM, Me wrote:

> Just know that the disks above and below to weaken after this surgery and if

you do not absolutely have to have a surgery, don't!

[Guest guest]

Hi Dana,

 

I amsteve I been putting off a neck fusion at c5-6-7.  I;ve  been outting

off  because  I had  a back back fusion and have  all kinda priblem now 

from  the  back operations.  I was  assulted in the line  of  duty as a

Sgt. for  the  local hospital which is  the  dumping  ground  for  all

the  drunks and  srug addict  in  my  home  town I in  several fight  a

week  up  there  it  dangerouse place. I broke  my  back had  fusion,

tore  my shoulder  out  had  two operstion on  that, dange  the alner

nevre  to  my  left  hand had  one  opestion on  that  they told  me 

after  that  one  it  was  so badly damaged that  they  did  the 

best  they  could all these  where  done  in 12month time I never 

recover  for  one  than they  where  doing  another  operstion and  I 

delvope a  chronic  pain  problem  in  very injury site.  I walk  with

a  cane i can:t  walk  every far. 

MY pain dr. said  they never should  done that many  operation  so close 

together and that  part of the  problem which made  me  have  these 

problems. Well anyways was  fusion  worth  the  risk of that  kinda

operstion.  I  be  told by several surgeies that i to high of  a risk and

to  live  with it and only  do it  if I wake  up  and can;t move  or 

feel my  limbs.  well it  is  get  worse I was  just in  bed  for  two

week becuse  I  fell and  my  neck flared  up  bad. they  had  to 

give  me  a  80mg  dhot  of  predeninsone with 50 mg day for 5 day on

the  5th day i  start  to  feel better  but  still not  back to  where i

was  before  the fall and don " t think i will get  back there.  So i am

throw  the  thought  around  about  having it  done.  what  you  think

after  hearing  my  story Thanks  Steve

From: Me <ellijaygal@...>

Subject: Re: Hi New here

spinal problems

Date: Friday, October 22, 2010, 2:08 PM

 

Hi Dana,

Welcome to the group. I had a C5-6 Fusion with cadaver with hardware in June of

2007. My neuro doesn't believe in collars because she feels it makes the

surrounding muscles even weaker. My recuperation from the surgery went well even

without the collar. I felt great after surgery (because the pain prior to

surgery was a constant 7 or 8 even on medication) and was back to work around 4

or 5 weeks if I remember correctly. I think the norm is probably 6 weeks. I was

a paralegal and I had to sit for long periods of time, type constantly, pull on

boxes of files, etc. Like I mentioned before, the pain after the surgery was

nothing compared to the pain I was having prior to the fusion. I had pretty much

lost the use of my left hand and I was in excruciating pain from my neck (and

especially shoulder) all the way to my hand. It would hit and give me cold

chills it hurt so bad. While I was still groggy from the surgery I was thrilled

that I could actually lift my

hand over my head and make a fist!

One thing to remember is to be very careful of not overdoing anything those

first few weeks, and you generally aren't told that the disks above and below

fusions weaken because of the increased pressure on those disks. Just be careful

to follow your doctors orders regarding what you should NOT be doing even if you

think you feel better and think you can do things. You don't want to have to go

back and have it done again!!

I had a previous surgery in 2006 a lumbar laminectomy so that they could get to

my tethered spinal cord and another spinal CORD surgery again in June of last

year. The pain from the neck was minimal compared to those. It doesn't feel

good, but it could be much worse! The pain you are having now should be less

than the pain you had prior to the surgery, and at least a different type of

pain that will decrease. I hope it relieves your problem and you have no

additional issues to deal with.

I have kept (and keep) my weight off by being extremely careful about eating

carbs because of the inactivity you don't need a lot of them for energy. You do

need to eat balanced meals and 3 meals a day so your body can heal properly, but

carbs are NOT your friend when you are so sedentary for several weeks. So watch

out for the whites (potatoes, corn, bread, rice, etc.).

Good luck and try not to go stir crazy. Facebook - bejeweled blitz and farmville

saved me during those times after my surgeries. haha

Barb

>

> Hello All,

>

> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami J

brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>

> I guess some of you have had this type of surgery and I wanted to get feedback

about success/failure, pain after surgery, how to beat boredom! LOL, and how not

to gain weight for 6weeks of inactivity. Walking up the steps and out the

parking lot doesn't cut it.

>

> Also, I just started sleeping on my back. More comfy b/c I'd wake up with jaw

pain with the Miami J diggging into it.

>

> My follow up went well, got to see the xrays. My doc did a great job (Ratliff

at Jefferson, Philadelphia). It looks perfectly normal. Going back for more

xrays Nov 15. Doc's P.A. said it would get worse before it gets better. Left

seems fine but gettin pain on my right in my arm(C5 was the bone spur)

>

> Did anyone of you get word when you can go back to work. I work part-time at a

cafe and there's lotsa reaching, bending, etc. I'm also a petsitter and losing

lots of money. I just want to be back to normal again. I've had brain

tumors/cancer and those surgeries were nothing compared to this! Less nerves in

the brain, I'm sure.

>

> Any help and encouragement would be appreciated

>

> Dana:-)

>

[Guest guest]

they will get you out of bed within 24 hours you don't have to do

much more than stand up but it cuts down the risks of blood clots forming.

As you lay in the bed move those legs around as much as possible. Once your

home walk as much as you feel comfortable with. The more you walk the faster

you will heal with a minimum of scar tissue forming. I have a disease caused

by scar tissue it is called Arachnoiditis you can look it up in fact you

should look it up because anyone who has ever had spine surgery or epidurals

are subject to this disease. I got it from to many surgeries but it was

necessary for my health and sanity. I would hurt my back by doing something

dumb and have to have surgery. My fusion was a miracle to me it helped me so

much although the pain after the third operation was terrible this is how we

found the Arachnoiditis. Anyway walk as much as you can or lay flat don't do

not sit a lot it is bad for the fusion.

10 years ago I was walking 5 miles a day 7 days a week. I started slow and

worked up to it. I lost 100 pounds that I desperately needed to lose to many

years of inactivity poured on the weight. But I took it off and I have kept

it off and at 60 I dont' think I have to worry about it coming back. You

will be able to walk that mile it just takes time and patience. When you

feel like it walk a block or two and every few days or as you feel

comfortable walk a little further. You will be able to do that mile in no

time. Please stay in touch and keep me apprised of how things are going.

Janice

Hi New here

>>

>>

>>

>>

>>

>>

>> Hello All,

>>

>> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami

>> J brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>>

>> I guess some of you have had this type of surgery and I wanted to get

>> feedback about success/failure, pain after surgery, how to beat boredom!

>> LOL, and how not to gain weight for 6weeks of inactivity. Walking up the

>> steps and out the parking lot doesn't cut it.

>>

>> Also, I just started sleeping on my back. More comfy b/c I'd wake up with

>> jaw pain with the Miami J diggging into it.

>>

>> My follow up went well, got to see the xrays. My doc did a great job

>> (Ratliff at Jefferson, Philadelphia). It looks perfectly normal. Going

>> back for more xrays Nov 15. Doc's P.A. said it would get worse before it

>> gets better. Left seems fine but gettin pain on my right in my arm(C5 was

>> the bone spur)

>>

>> Did anyone of you get word when you can go back to work. I work part-time

>> at a cafe and there's lotsa reaching, bending, etc. I'm also a petsitter

>> and losing lots of money. I just want to be back to normal again. I've

>> had

>> brain tumors/cancer and those surgeries were nothing compared to this!

>> Less nerves in the brain, I'm sure.

>>

>> Any help and encouragement would be appreciated

>>

>> Dana:-)

>>

>>

>>

>>

>>

>>

[Guest guest]

i had a fusion of s1-l5 and i was lay up for about 4 week but was able

to walk a bit more but a mile will be awhile down the road total recovery

is several months. good luck steve

> From: Bunny <christina_bunny@...>

> Subject: RE: Hi New here

> spinal problems

> Date: Friday, October 22, 2010, 4:56 PM

>

> Thank you Janice...no I mean more in that first couple

> weeks.  I've got a spine fusion coming up end of

> Dec.  How soon do you think I'll be able to walk? 

> I hate to sit still to be honest and as soon as I am able go

> go without narcotics it will be hard to keep me in

> bed.  The TV is the only thing that works.  I keep

> hoping that I'll be able to work up to walks around a mile

> long lake...dont know if that is unrealistic.

>

> " Without rabbits a rabbits foot would be nothing

> but a disembodied hand full of unidentified toes. " -Pogo

>

>

>

>

>

> spinal problems

> From: faraway1@...

> Date: Thu, 21 Oct 2010 20:15:18 -0700

> Subject: Re: Hi New here

>

>

>  

>

>

>

> please be careful a lot of sitting is not good

> for you either. It

> promotes scar tissue to form the more active you can be (

> up to a point) The

> better off you are. I have had 5 back surgeries and each

> time except the

> fourth and fifth I couldn't do much walking because I was

> left in so much

> pain. Just do what you feel is comfortable to you but no

> matter what make

> time for a little walk each day if you can.

> Janice

> Hi New here

> >

> >

> >

> >

> >

> >

> > Hello All,

> >

> > Just had surgery on Oct 5. C6-7 fused and spur on C5.

> Still wearing Miami

> > J brace(awfully uncomfortable)24/7 and alternate

> Philadelphia.

> >

> > I guess some of you have had this type of surgery and

> I wanted to get

> > feedback about success/failure, pain after surgery,

> how to beat boredom!

> > LOL, and how not to gain weight for 6weeks of

> inactivity. Walking up the

> > steps and out the parking lot doesn't cut it.

> >

> > Also, I just started sleeping on my back. More comfy

> b/c I'd wake up with

> > jaw pain with the Miami J diggging into it.

> >

> > My follow up went well, got to see the xrays. My doc

> did a great job

> > (Ratliff at Jefferson, Philadelphia). It looks

> perfectly normal. Going

> > back for more xrays Nov 15. Doc's P.A. said it would

> get worse before it

> > gets better. Left seems fine but gettin pain on my

> right in my arm(C5 was

> > the bone spur)

> >

> > Did anyone of you get word when you can go back to

> work. I work part-time

> > at a cafe and there's lotsa reaching, bending, etc.

> I'm also a petsitter

> > and losing lots of money. I just want to be back to

> normal again. I've had

> > brain tumors/cancer and those surgeries were nothing

> compared to this!

> > Less nerves in the brain, I'm sure.

> >

> > Any help and encouragement would be appreciated

> >

> > Dana:-)

> >

> >

> >

> >

> >

> >

[Guest guest]

Each person is different some are up and at em right away while others take

months to get well enough to do much of anything. I have had 5 back surgeries

and I was up and around with in 24 hours but within a week I was always walking

a mile everyday. After my third back surgery I had to go back to work in 8 daysI

had to feed my 3 daughters. I was a waitress in a very large restaurant. I would

not have done that if didn't have to. It was very hard on my body.

Janice

Hi New here

> >

> >

> >

> >

> >

> >

> > Hello All,

> >

> > Just had surgery on Oct 5. C6-7 fused and spur on C5.

> Still wearing Miami

> > J brace(awfully uncomfortable)24/7 and alternate

> Philadelphia.

> >

> > I guess some of you have had this type of surgery and

> I wanted to get

> > feedback about success/failure, pain after surgery,

> how to beat boredom!

> > LOL, and how not to gain weight for 6weeks of

> inactivity. Walking up the

> > steps and out the parking lot doesn't cut it.

> >

> > Also, I just started sleeping on my back. More comfy

> b/c I'd wake up with

> > jaw pain with the Miami J diggging into it.

> >

> > My follow up went well, got to see the xrays. My doc

> did a great job

> > (Ratliff at Jefferson, Philadelphia). It looks

> perfectly normal. Going

> > back for more xrays Nov 15. Doc's P.A. said it would

> get worse before it

> > gets better. Left seems fine but gettin pain on my

> right in my arm(C5 was

> > the bone spur)

> >

> > Did anyone of you get word when you can go back to

> work. I work part-time

> > at a cafe and there's lotsa reaching, bending, etc.

> I'm also a petsitter

> > and losing lots of money. I just want to be back to

> normal again. I've had

> > brain tumors/cancer and those surgeries were nothing

> compared to this!

> > Less nerves in the brain, I'm sure.

> >

> > Any help and encouragement would be appreciated

> >

> > Dana:-)

> >

> >

> >

> >

> >

> >

[Guest guest]

That is soooooooooooooooooooooooooo funny because I think most of us or at

least I know I have been in the position of feeling the " sign me up " and don't

even let them finish saying what they want to do, just anything to make the pain

stop, including blasting my a$$ into outerspace! haha

> > Just know that the disks above and below to weaken after this surgery and if

you do not absolutely have to have a surgery, don't!

>