Hello From New Member

[Guest guest]

On Fri, 10 Jul 2009 17:49:26 -0000, you wrote:

>TSH - 0.87 (Range : 0.1 - 5.0)

>FT3 - 4.5 (Range : 3.5 - 6.5)

>FT4 - 12.4 (Range : 9.0 - 20.0)

That TSH is surprisingly low when you see how low the FT3 and FT4 are

in their ranges,

I wonder if there are Pituitary or Hypothalamus issues there??

More importantly what are your temperatures doing and what is your

resting pulse rate??

Nick

[Guest guest]

Hi Nick,Thanks for the response.I am monitoring my temperature and pulse as per Dr Rind, although it's pretty obvious from only several weeks' worth of data that my adrenals are going to need supporting. www.drrind.com/therapies/metabolic-temperature-graph I spent a week in bed feeling utterly atrocious and with very little tolerance to daylight in mid June. At one point I was lying in bed with shades on although a welder's mask would have been better! My temperature spiked around quite violently for that week varying from 37 (I usually feeling horribly warm when it gets this high as I am not used to it), down to 35.2 (not much lower than average to be honest). My pulse varies from 65 to 78. I monitored all this earlier in the year but then managed to end up mistakenly putting all the data into the recycling bin and only realised this when I came to enter it all into a certain well known spreadsheet application, which was most annoying because it was data from winter and early spring and, from what I recall, my basal temperature was floating around in the mid 35's. I must admit that I feel the cold something awful.In recent weeks my temperature has been climbing steadily and evenly, deemed by Dr Rind to be in an "Improving" pattern, although it spiked to 37 again after the exceptionally warm weather and I lost a couple of pounds over the course of 3 or 4 days. My pulse seems to bounce around from the mid-to-late 6o's to the early-to- mid 70's. I asked for a TSH test in January 2008 and it came back as "Normal" at 1.6 with the same range as that given above. At the time I didn't have the knowledge or the energy to go back and ask for further testing but in light of what's happened since October, I would like to live my life not just exist as I have done since my mid-teens, and have decided to take charge of my own health. I must admit that having made this decision and then being vindicated by the recent B12 result, life feels considerably less stressful and I feel strangely calm. I KNEW there was something wrong and I am going to do something about it.What sort of Pituitary or Hypothalamus issues do you think there could be? I have yet to absord Dr P's book so bear with me on any ignorance I am showing.Many thanks for your assistance.Del.> > >TSH - 0.87 (Range : 0.1 - 5.0)> >FT3 - 4.5 (Range : 3.5 - 6.5)> >FT4 - 12.4 (Range : 9.0 - 20.0)> > That TSH is surprisingly low when you see how low the FT3 and FT4 are> in their ranges,> > I wonder if there are Pituitary or Hypothalamus issues there??> > More importantly what are your temperatures doing and what is your> resting pulse rate??> > Nick>

[Guest guest]

Nick,

You wrote:

>

>

>

> On Fri, 10 Jul 2009 17:49:26 -0000, you wrote:

>

> >TSH - 0.87 (Range : 0.1 - 5.0)

> >FT3 - 4.5 (Range : 3.5 - 6.5)

> >FT4 - 12.4 (Range : 9.0 - 20.0)

>

> That TSH is surprisingly low when you see how low the FT3 and FT4 are

> in their ranges,

>

> I wonder if there are Pituitary or Hypothalamus issues there??

Actually, that is fairly typical for Armour. The T3 spike causes the TSH

to drop more than for an equivalent benefit from T4 only.

Chuck

[Guest guest]

---

> >

> > >TSH - 0.87 (Range : 0.1 - 5.0)

> > >FT3 - 4.5 (Range : 3.5 - 6.5)

> > >FT4 - 12.4 (Range : 9.0 - 20.0)

Hiya

I was wondering about Pit and hypothalamus too as I thought these were tested

prior to any treatment

?

lotsa luv

Dawnx

[Guest guest]

Hello All and thanks for the comments and info.

Just to let people know, I am not on ANY medication and taking nothing

other than Flaxseed Oil. I have not started taking anything so far as I

will be going back to get the Vitamin D3 checked out and don't want to

compromise any results at the moment.

When I said I was starting at the bottom, I meant right at the very

bottom!

Cheers!

Del.

>

> ---

> > >

> > > >TSH - 0.87 (Range : 0.1 - 5.0)

> > > >FT3 - 4.5 (Range : 3.5 - 6.5)

> > > >FT4 - 12.4 (Range : 9.0 - 20.0)

> Hiya

>

> I was wondering about Pit and hypothalamus too as I thought these were

tested prior to any treatment

> ?

>

> lotsa luv

> Dawnx

>

[Guest guest]

On Fri, 10 Jul 2009 21:46:31 -0000, you wrote:

>temperature spiked around quite violently for that week varying from 37

>(I usually feeling horribly warm when it gets this high as I am not used

>to it), down to 35.2 (not much lower than average to be honest).

>

>My pulse varies from 65 to 78. I monitored all this earlier in the year

Check Ferritin, support adrenals, and if temperatures are still low

once they are stable then start supporting thyroid.

Getting the FT3 to the top of the range is the target but it may by a

bumpy journey.

Have you done the 4 vial saliva test for Adrenals??

Nick

[Guest guest]

On Sat, 11 Jul 2009 01:50:55 -0000, you wrote:

>

>I was wondering about Pit and hypothalamus too as I thought these were tested

prior to any treatment

Normally only indirectly.

In the UK you are lucky if you can get more than a TSH test performed!

Nick

[Guest guest]

***Any feedback on the bloodwork would be helpful and if anybody could point me in the direction of the adrenal sister group I would be most grateful.

Hello Del,

Just wanted to say hi . You have such a refreshing way of writing and had me in stitches with your descriptions ... I'm wondering too about those people in shorts and tops in supermarkets.... before I realized I was hypothyroid, I thought all Brits were made of much sterner stuff than me (I'm German) - now I know that only the non-hypothyroid Brits are made of sterner stuff....

I am sorry to hear about the loss of so many of your friends and family - I am sure this has taken its toll on your adrenal function, but unfortunately low adrenal function is not taken into account by our NHS doctors, nor will they consider the possibility of malfunctioning thyroid as long as the thyroid parameters are in range - no matter *where-abouts* in the range.

Your TSH looks "normal" - but that proves nothing.

Your FT3 and FT4 are a bit on the low side - they should both be well above the half way inside the range .

As has said ... tests are a good servant but a bad master ... also - the TSH would not reflect any pituitary malfunctioning.

Your ferritin is low - you'll need iron supplementation - likewise, your B12 is much too low - you need some serious help there as well.... and you'd benefit for some extra Zinc. - Correcting those insufficiencies will help, but I don't think that's the end of the story. Although your thyroid test would pass as 'normal', to my mind your symptoms sound very 'adrenal' and very likely 'thyroid' too.

I guess you are currently riveted to Dr. P's book. I am sure you will find it a brilliant help. - Would you consider seeing Dr. P. privately? It would be worth every penny. The man should be nominated for an OBE for services rendered on NHS-neglected thyroid patients. Dr. P. diagnosed me 12 months before my lab results fell into the red. Clinical signs and symptoms very often precede a rise in TSH - sometimes by years. My own GP was just about to stick me into a luni-bin (well, not really, but he did suggest therapy for my "depression" and offered anti-depressants) when I was saved by the bell (namely a high TSH and high thyroid autoantibodies).

Dr. Skinner is likewise someone who could sort you out, if you could get a referral. - You've read his book - which is hilariously written. I've met Dr. Skinner at the Get-Together earlier this year, and he is every bit the character that comes over in his book. He's easily the most 'plain-sense' speaking person I have ever met in my life.

Interesting what you say about Nuun - it makes perfect sense that you feel good on it .... it replenishes your electrolytes (natrium & potassium <Na:K ratio> ) - and the fact that they need replenishing shows that your adrenal function is low.

You might find the following interview helpful http://www.thyroid-info.com/articles/david-derry.htm

It's not a new article, but non-the-less extremely eye-opening about the nonsense of diagnosing hypothyroidism by TSH alone.

Oh, and you asked for the adrenal sister group....

NaturalThyroidHormonesADRENALS/

very best wishes,

PS - another consideration - have you got any amalgam fillings?

[Guest guest]

Hi Dawn,

In your dreams............

Subject: Re: Hello From New Member

---

> >

> > >TSH - 0.87 (Range : 0.1 - 5.0)

> > >FT3 - 4.5 (Range : 3.5 - 6.5)

> > >FT4 - 12.4 (Range : 9.0 - 20.0)

Hiya

I was wondering about Pit and hypothalamus too as I thought these were

tested prior to any treatment

?

lotsa luv

Dawnx

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

Hello ,

Thanks for your comments, assistance and pointer to the adrenal group.

Apologies for not posting earlier - have been feeling monumentally

tired.

Yes, I do have amalgam fillings. At one point I had rather a lot but as

I have had a propensity for dental abcesses and have had lots of Root

Canal Work (Yum!), I have been ensuring that something slightly less

poisonous was used! At some stage (which will probably involve a non-UK

dentist and serious amounts of money), I shall have the remaining ones

replaced. I think I shall stick with my current smile although it could

be interesting to choose somebody else's as some people do when they go

for cosmetic surgery. Something along the lines of " Can I have

Aniston's eyes and J-Lo's buttocks, please? " . Possibly not,

methinks!

I have been putting together a shopping list of supplements and there

seems to be quite a lot. I haven't ruled out seeing Dr P but will see

how we go for the moment. I am currently waiting for the results of a

recent Blood Test taken for an AutoImmune Profile to determine

Pernicious Anaemia. We shall see whether the NHS will help me with that

but seeing as I was the one who asked for it to be tested thanks to

Sheila's suggestion, I'm not sure what happens next. I go back to see a

doctor on Monday and shall enquire further at that point. If all fails,

I can buy B12 shots online although I understand they are quite painful

to administer. Hopefully it won't come to that!

Again, many thanks.

Cheers!

Del.

>

> ***Any feedback on the bloodwork would be helpful and if anybody could

> point me in the direction of the adrenal sister group I would be most

> grateful.

Hello Del, Just wanted to say hi .

You have such a refreshing way of writing and had me in stitches with

your descriptions...

very best wishes,

PS - another consideration - have you got any amalgam fillings?

[Guest guest]

****Yes, I do have amalgam fillings. At one point I had rather a lot but asI have had a propensity for dental abcesses and have had lots of RootCanal Work (Yum!), I have been ensuring that something slightly lesspoisonous was used! At some stage (which will probably involve a non-UKdentist and serious amounts of money), I shall have the remaining onesreplaced.

Hi Del,

Oh dear - root canals - that brings back memories I had to endure 6 re-root canal drillings in my quest to become mercury-free... two of those teeth were stuffed from root to the brim with amalgam. Can you envisage the black mess the poor woman had to clear up for me? Crimes of past dentistry - Yum indeed !!

Just a tip about replacing your remaining amalgams.... you don't need to leave the country for it. It's not *that* expensive (my dentist charges about £ 100 - 150 per tooth), and if you happen live anywhere near the South-East of England, I can highly recommend my own 'mercury free' dentist in Farnham. It's worth travelling some distance to obtain his services. He is brilliant. I upped and left my previous dentist for him, even though I now have to drive for half an hour... he and his team are worth every minute. http://www.holisticdentalcentre.co.uk/

all the best,

[Guest guest]

I broke the amalgam filling in one of my back teeth a while ago and I've only

just got round to seeing the dentist. The quote she gave me for a white

composite filling was £115.00. Still expensive as far as I'm concerned but not

as bad as I expected.

I won't be having all mine replaced at once though as I just can't afford it,

what with having to get the hypo treated privately and everything. I'll just

have to get them replaced when they need it.

Unless I win the lottery :0)

Louise.

Hi Del, Oh dear - root canals - that brings back

> memories I had to endure 6 re-root canal drillings in my quest to

> become mercury-free... two of those teeth were stuffed from root to the

> brim with amalgam. Can you envisage the black mess the poor woman had to

> clear up for me? Crimes of past dentistry - Yum indeed !! Just a tip

> about replacing your remaining amalgams.... you don't need to leave the

> country for it. It's not *that* expensive (my dentist charges about £

> 100 - 150 per tooth), and if you happen live anywhere near the

> South-East of England, I can highly recommend my own 'mercury free'

> dentist in Farnham. It's worth travelling some distance to obtain his

> services. He is brilliant. I upped and left my previous dentist for him,

> even though I now have to drive for half an hour... he and his team are

> worth every minute. http://www.holisticdentalcentre.co.uk/

> <http://www.holisticdentalcentre.co.uk/> all the best,

>

[Guest guest]

Faith - the first thing you want to do is make sure an entire immunology workup

has been done. Has she had any vaccine titers done or response testing done?

Have they ran numbers on her B-cells, T-cells, NK and Complement levels? Is

this a pediatric immunologist?

Also since he has taken a wait/see approach has she been on any type of

treatment otherwise? Maintenance antibiotics? What other illnesses has she been

having?

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: techteacherpack <faithpack@...>

Sent: Fri, May 21, 2010 3:38:39 PM

Subject: Hello from new member

My name is Faith and I am mother to Laurel(CVID) age 5. She was first diagnosed

18 months ago with low IGG, IGA, IGM and IGE. Her immunologist thought that this

was an immune system maturity issue and that she would show improvement over

time. Yesterday, we were presented with her latest round of blood work results,

and all of her levels have decreased significanly (IGG went from 417 to

336)while the " normal " range for these have increased. So now we are faced with

a confirmed CVID diagnosis and a huge question of what do we do now?

We are scheduled for a CT scan on Monday since she is never " dry " in her

sinuses. She has already had her tonsils and adenoids removed - at 2 years of

age. She has been on daily antibiotics since the first round of blood work. Her

doctor has now recommended going straight to IVIG. My husband and I are looking

for alternatives to this.

Any insight from this group would definitely make us feel more informed about

what questions we need to be asking at this point.

[Guest guest]

Hello Laurel, I am sorry to hear that your daughter has been diagnosed with

CVID. What I would say is that you are fortunate to have had a doctor that was

willing to diagnose her an watch her closely. My son is 14 and he was diagnosed

at a little over a year and we waited and watched and put of IVIg until he was 3

and 1/2 and looking back I wish we had not. He lost a great deal of time

socially because he was so sick and still feels that his illness effected him

negatively as a little guy. We did IVIG for the first 6 years and then at the

age of 10 started him on SubQ and it has been FANTASTIC for us. You will find

that for each family it is different whether the IV or subQ route is best for

them. My son is healthier now than any time in his life and he actually has a

pretty normal life. I would encourage you to contact IDF and also go to their

website and download some materials if you have not already to educate yourself.

They have incredible materials

that will help you in this journey. Gamma Globulin has been a life saver for us

and I am very glad we started it and have given him a much more stable and happy

life. There are some very wonderful families on this group reach out and ask

questions and I hope you will find support to help your daughter to be the best

she can be. www.primareimmunedeficiency.com

BARBIE

________________________________

From: techteacherpack <faithpack@...>

Sent: Fri, May 21, 2010 12:38:39 PM

Subject: Hello from new member

My name is Faith and I am mother to Laurel(CVID) age 5. She was first diagnosed

18 months ago with low IGG, IGA, IGM and IGE. Her immunologist thought that this

was an immune system maturity issue and that she would show improvement over

time. Yesterday, we were presented with her latest round of blood work results,

and all of her levels have decreased significanly (IGG went from 417 to

336)while the " normal " range for these have increased. So now we are faced with

a confirmed CVID diagnosis and a huge question of what do we do now?

We are scheduled for a CT scan on Monday since she is never " dry " in her

sinuses. She has already had her tonsils and adenoids removed - at 2 years of

age. She has been on daily antibiotics since the first round of blood work. Her

doctor has now recommended going straight to IVIG. My husband and I are looking

for alternatives to this.

Any insight from this group would definitely make us feel more informed about

what questions we need to be asking at this point.

[Guest guest]

Hi Faith, Welcome...sorry you are here though because it means your child is

sick, but this is a very nice, helpful group of people....they have helped me

through a lot and have taught me so much. Welcome.

 

My son is diagnosed with CVID also....he has chronic neutropenia also and low

natural killer cells.

 

Most of his life he has spent with green and yellow junk coming from his nose,

ears, throat...he's had mastoiditis, chronic sinusitis, UTIs,sepsis, many

pneumonias.  He had no immunity to chicken pox even though he was vaccinated

twice..he got a terrible case of shingles. Infections dominated his live/our

life. He was always on antibiotics.....when one course ended, he'd get sick

withing days.   ...  that was all before the IVIG.....

 

No more junk pouring out of his nose constantly. Very rare infections, and when

he gets a cold, it'll last 4 days, and doesn't turn into pneumonia, or an ear

infection. 

 

Though he does still have many challenges, he has stubborn C diff in his

intestines, and MRSA...he has neutropenia too which requires three times a week

injections of Neupogen...I would say that the IVIG has greatly improved his

life.

 

I understand your apprehension, I was so scared for him to start the IVIG....but

now that I know how he can live without these constant horrible infections and

fevers, I would definitely not with-hold it because of my fear. It makes his

life better, and safer.

 

There are potential risks, and my son has developed aseptic meningitis with it

where he had to be hospitalized and was very ill......but the doctor changed it,

split the dose so he gets it every two weeks now, half doses.....he's doing

great with it now.

 

Make sure Laurel drinks a lot the day before the infusion and the day of the

IVIG so she is well-hydrated.....also make sure the nurse gives it slowly, our

nurse gives it over 5 hours, this reduces the chance for migraine and other side

effects.

 

Faith, I know it's scary, I felt what you are feeling now....but this will make

her life so much better. 

 

Go to the IDF website and order the free info, and to the Baxter website, they

have great stuff for kids to learn about IVIG according to their age level, and

even a cute cuddly bear to go to the infusion with her!

 

Call me if you'd like, ....504 400-1994    hugs, Sue in New Orleans

 

 

 

From: techteacherpack <faithpack@...>

Subject: Hello from new member

Date: Friday, May 21, 2010, 7:38 PM

 

My name is Faith and I am mother to Laurel(CVID) age 5. She was first diagnosed

18 months ago with low IGG, IGA, IGM and IGE. Her immunologist thought that this

was an immune system maturity issue and that she would show improvement over

time. Yesterday, we were presented with her latest round of blood work results,

and all of her levels have decreased significanly (IGG went from 417 to

336)while the " normal " range for these have increased. So now we are faced with

a confirmed CVID diagnosis and a huge question of what do we do now?

We are scheduled for a CT scan on Monday since she is never " dry " in her

sinuses. She has already had her tonsils and adenoids removed - at 2 years of

age. She has been on daily antibiotics since the first round of blood work. Her

doctor has now recommended going straight to IVIG. My husband and I are looking

for alternatives to this.

Any insight from this group would definitely make us feel more informed about

what questions we need to be asking at this point.

[Guest guest]

hi,

i have three kids with cvid and all are currently on ivig, I hated hated hated

it to begin with, it was very hard for me to make the decision to start it,

after a couple of yrs we trialed off, it was miserable and made me realize how

much better my kids were on it, I hope we never trial off again!! its not as bad

as you are thinking, you can get used to this, and it might help to look at it

like this: you already know what her life is like without ivig, and that is not

likely to change....you could always trial ivig and if it doesnt work, at least

you know...but maybe it would be a great thing for laurel.

:)valarie

>

> My name is Faith and I am mother to Laurel(CVID) age 5. She was first

diagnosed 18 months ago with low IGG, IGA, IGM and IGE. Her immunologist thought

that this was an immune system maturity issue and that she would show

improvement over time. Yesterday, we were presented with her latest round of

blood work results, and all of her levels have decreased significanly (IGG went

from 417 to 336)while the " normal " range for these have increased. So now we are

faced with a confirmed CVID diagnosis and a huge question of what do we do now?

>

> We are scheduled for a CT scan on Monday since she is never " dry " in her

sinuses. She has already had her tonsils and adenoids removed - at 2 years of

age. She has been on daily antibiotics since the first round of blood work. Her

doctor has now recommended going straight to IVIG. My husband and I are looking

for alternatives to this.

>

> Any insight from this group would definitely make us feel more informed about

what questions we need to be asking at this point.

>

[Guest guest]

 Hi Folks!

 Happy New Year to all!  I look forward to reading your posts, getting to know

some of you.  Thought I'd drop in and introduce myself.  My name is and

I'm from Melbourne, FL....originally from CT.

 I've had ongoing back problems since my mid 20's, now 57 y/o.  My back always

felt like it would " go out " and piriformis was always painful.  It's been

literally a pain.  I began w/years of PT with only minimal relief and

TENS...followed by chiropractic.  Then came pain management including epidurals,

radio-frequency and various inj's in SI joints and for hip bursitis.  I barely

tolerated a diskogram.  Yrs ago the MD's told me it was " just some arthritis "

only to learn later I had early DDD, herniated disks, stenosis,

spondylolisthesis and nerve impingement.

 In Feb '07 I was let go from my job (nurse) due to chronic back/sciatic pain

that resulted in immobility.  I don't know a nurse who doesn't have lumbar or

cervical pain.  I, out of desperation and pain, chose to undergo a spinal fusion

in 6/'07.  I am currently living on Soc Sec disability.  I'm unable to stand or

sit for any length of time, bend or twist my spine.  I never imagined at age 57

I'd be in such bad shape.  Never had any specific injury to my back however I

worked many years as a HHA, CNA then LPN.  Guess it did me in:-(

 I had a 4 level fusion, L2-S1 (anterior and posterior) w/rods, pedicle screws,

anterior fusion plate and laminectomy.  What a surgery!  However, I knew it

wouldn't be easy.  Two days post-op I blew a pulmonary embolism and

was terrified I was going to die right there in the hospital.  My 4 day hospital

stay extended into a 10 day nightmare.  I was pumped full of blood thinners and

for 9 months after I had to ingest rat poison (warfarin).  Recovery was

uneventful but long.  I felt better for a cpl yrs, not pain-free but better.  I

was able to walk w/o severe back &  leg pain.

 Two yrs post-op I began experiencing lumbar, SI joint &  hip pain.  Everything

felt " out of whack. "   Now, approx one yr later, I've been experiencing increased

back pain and bilateral nerve pain shooting down my buttocks, legs & down to my

feet.  It's much like before my surgery.  Feels like a hot poker inside stabbing

and twisting me.  Stepping on any uneven surface or twisting my trunk ever so

slightly is intolerable, I get wicked spasms and radiating pain.  When I am on

my feet after a while it feels like bones grinding together....seems I can

almost hear it!  I continued wearing my back brace, since my surgery, when

walking or doing housework.  I bought a reacher/grabber thing which has been a

blessing.

 Last month I had a myelogram.  OMG....I thought I was going to vomit, pass out

& die!  IMO, worse even than that diskogram!  A tech had to keep placing wet

washcloths on my head.  They had me in a prone position w/pelvis draped over a

hard foam wedge pillow, very uncomfortable.  No sedation, just my Lortab.  I had

to completely fast and d/c many of my Rx's including NSAID's, anti-anxiety meds,

etc.  The radiologist had a very difficult time inserting the needle into my

spinal column due to much scarring, he had to insert the stylus & needle 2x to

inject the contrast.  I felt like I was giving birth, with Dr ordering me to

bear down, hold breath, push, breathe, relax, push...you probably get the

picture, lol!  It was just HORRIBLE!  Then I had to remain there in the

hospital, flat on my back for 4 hrs with the entire bed placed in a 30 degree

position!  Now, that was weird!  Thank God, I never experienced the myelo

headache that some patients do.  I've had people tell me they think myelo's are

barbaric, I have to agree! 

*Below is what the myelo/CT revealed on examination.............

 

 Grade 1 retrospondylolisthesis of L1 relative to L2

 Contrast column significantly attenuated at the L1-L2 level

 Broad posterior disk herniation present at L1-L2

 Bilateral facet joint irregularity and spurring at L1-L2

 Canal narrowing and likely bilateral lateral recess narrowing at L1-L2

 Impression of the thecal sac at T11-T12 likely related to a small posterior

disk herniation

 Equivocal lateral recess narrowing at L4-L5 and L5-S1 bilaterally

I see the ortho surgeon on Monday, the Dr who performed my surgery in June '07. 

I want to know what my options are, if any.  I REALLY DON'T WANT to have another

surgery!!  Now I'm terrified of blood clots even though they took precautions

beforehand.  I inherited my grandmother's varicose veins, ty grandma:-(  I went

for a 2nd opinion prior to my '07 surgery and this MD wanted to START with

fusing L4-L5 and then work his way up as needed.  I thought, " You must

be crazy, I don't want multiple surgeries. "   I later learned this Dr is

notorious for performing repeat surgeries.

 Well, here I am again in the same boat.  I'm not very knowledgeable in this

field however I do know this is a common occurrence for what's directly above a

fusion to weaken and become unstable.  I've heard people say.... " I'm having my

4th, 5th, 6th, etc, back surgery " !  I don't want to be one of them!  I never

thought I'd be where I am today, it's so depressing.  I don't mentally feel my

age but my body is a mess.  I now have diabetes, oral pill/diet controlled, HPN,

GERD, depression, anxiety, etc, etc.  All except the last 2 were diagnosed since

my surgery.  If anyone has any comments, thoughts, etc I would like to hear

them, esp prior to my Mon appt.  *I am definately not interested in this

rolfing(?) massage therapy, ty!  I do however understand the concept &

importance of body mechanics, posture, core-strengthening, etc.  I do exercise

in my pool.  Thanks for listening to my L-O-N-G introduction.  Have a nice eve

and w/e everyone :>)   

 ~ ~

[Guest guest]

WOW it sounds like you have been experiencing an awful lot of pain.

Maybe caused by the surgery. It's my opinion and from someone who has had 5 back

surgeries and they were complete succes's. But I would go right out and hurt it

again. I was 20 when it all started the pain I mean. I would not reccommend any

one who wants to manipulate the spine. But some have had great sucess.

It sound to me like you have the disease called Arachnoiditis. Look it up on the

computer and see if you agree. In order to continue to walk you may have to have

another surgery.

Janice

Hello From New Member

Hi Folks!

Happy New Year to all! I look forward to reading your posts, getting to know

some of you. Thought I'd drop in and introduce myself. My name is

and

I'm from Melbourne, FL....originally from CT.

I've had ongoing back problems since my mid 20's, now 57 y/o. My back always

felt like it would " go out " and piriformis was always painful. It's been

literally a pain. I began w/years of PT with only minimal relief and

TENS...followed by chiropractic. Then came pain management including

epidurals,

radio-frequency and various inj's in SI joints and for hip bursitis. I barely

tolerated a diskogram. Yrs ago the MD's told me it was " just some arthritis "

only to learn later I had early DDD, herniated disks, stenosis,

spondylolisthesis and nerve impingement.

In Feb '07 I was let go from my job (nurse) due to chronic back/sciatic pain

that resulted in immobility. I don't know a nurse who doesn't have lumbar or

cervical pain. I, out of desperation and pain, chose to undergo a spinal

fusion

in 6/'07. I am currently living on Soc Sec disability. I'm unable to stand

or

sit for any length of time, bend or twist my spine. I never imagined at age

57

I'd be in such bad shape. Never had any specific injury to my back however I

worked many years as a HHA, CNA then LPN. Guess it did me in:-(

I had a 4 level fusion, L2-S1 (anterior and posterior) w/rods, pedicle

screws,

anterior fusion plate and laminectomy. What a surgery! However, I knew it

wouldn't be easy. Two days post-op I blew a pulmonary embolism and

was terrified I was going to die right there in the hospital. My 4 day

hospital

stay extended into a 10 day nightmare. I was pumped full of blood thinners

and

for 9 months after I had to ingest rat poison (warfarin). Recovery was

uneventful but long. I felt better for a cpl yrs, not pain-free but better.

I

was able to walk w/o severe back & leg pain.

Two yrs post-op I began experiencing lumbar, SI joint & hip pain. Everything

felt " out of whack. " Now, approx one yr later, I've been experiencing

increased

back pain and bilateral nerve pain shooting down my buttocks, legs & down to

my

feet. It's much like before my surgery. Feels like a hot poker inside

stabbing

and twisting me. Stepping on any uneven surface or twisting my trunk ever so

slightly is intolerable, I get wicked spasms and radiating pain. When I am on

my feet after a while it feels like bones grinding together....seems I can

almost hear it! I continued wearing my back brace, since my surgery, when

walking or doing housework. I bought a reacher/grabber thing which has been a

blessing.

Last month I had a myelogram. OMG....I thought I was going to vomit, pass

out

& die! IMO, worse even than that diskogram! A tech had to keep placing wet

washcloths on my head. They had me in a prone position w/pelvis draped over a

hard foam wedge pillow, very uncomfortable. No sedation, just my Lortab. I

had

to completely fast and d/c many of my Rx's including NSAID's, anti-anxiety

meds,

etc. The radiologist had a very difficult time inserting the needle into my

spinal column due to much scarring, he had to insert the stylus & needle 2x to

inject the contrast. I felt like I was giving birth, with Dr ordering me to

bear down, hold breath, push, breathe, relax, push...you probably get the

picture, lol! It was just HORRIBLE! Then I had to remain there in the

hospital, flat on my back for 4 hrs with the entire bed placed in a 30 degree

position! Now, that was weird! Thank God, I never experienced the myelo

headache that some patients do. I've had people tell me they think myelo's

are

barbaric, I have to agree!

*Below is what the myelo/CT revealed on examination.............

Grade 1 retrospondylolisthesis of L1 relative to L2

Contrast column significantly attenuated at the L1-L2 level

Broad posterior disk herniation present at L1-L2

Bilateral facet joint irregularity and spurring at L1-L2

Canal narrowing and likely bilateral lateral recess narrowing at L1-L2

Impression of the thecal sac at T11-T12 likely related to a small posterior

disk herniation

Equivocal lateral recess narrowing at L4-L5 and L5-S1 bilaterally

I see the ortho surgeon on Monday, the Dr who performed my surgery in June

'07.

I want to know what my options are, if any. I REALLY DON'T WANT to have

another

surgery!! Now I'm terrified of blood clots even though they took precautions

beforehand. I inherited my grandmother's varicose veins, ty grandma:-( I

went

for a 2nd opinion prior to my '07 surgery and this MD wanted to START with

fusing L4-L5 and then work his way up as needed. I thought, " You must

be crazy, I don't want multiple surgeries. " I later learned this Dr is

notorious for performing repeat surgeries.

Well, here I am again in the same boat. I'm not very knowledgeable in this

field however I do know this is a common occurrence for what's directly above

a

fusion to weaken and become unstable. I've heard people say.... " I'm having my

4th, 5th, 6th, etc, back surgery " ! I don't want to be one of them! I never

thought I'd be where I am today, it's so depressing. I don't mentally feel my

age but my body is a mess. I now have diabetes, oral pill/diet controlled,

HPN,

GERD, depression, anxiety, etc, etc. All except the last 2 were diagnosed

since

my surgery. If anyone has any comments, thoughts, etc I would like to hear

them, esp prior to my Mon appt. *I am definately not interested in this

rolfing(?) massage therapy, ty! I do however understand the concept &

importance of body mechanics, posture, core-strengthening, etc. I do exercise

in my pool. Thanks for listening to my L-O-N-G introduction. Have a nice eve

and w/e everyone :>)

~ ~

[Guest guest]

hello new member.

i have shared this with others and now with you and other new people.

i was diagnosed last january with scoliosis, severe spinal stenosis, and discs

that are bone on bone, and a bulging disc.

i have to have surgery, but it is not scheduled yet. i can still walk and since

the surgery is high risk, he wants to wait until i am worse.

listening to this meditation CD helps me a lot.

the name of the cd is Ease Pain. the site was created by belleruth naperstak. i

like her soothing voice. i have bought other cd's on her site, but i like hers

the best.

click on this site, then click on pain.

www.healthjourneys.com

(i am NOT connected to this site at all. i found it when i had my gastric bypass

surgery and bought the surgery meditation cd. it helped me so very much.i

listened to them when i had both of my knees replaced too.)

i understand your pain. and this really helps me. so thought i would share the

site again.

i do get quarterly steroid shots and take naproxen.

i usually can do a few things a day then i have to rest.

let me know if you get one of the meditation cd's and if it helps.

blessings to you the new member and to all.

E

________________________________

From: <piggytails53@...>

spinal problems

Sent: Fri, January 14, 2011 2:31:50 PM

Subject: Hello From New Member

 

 Hi Folks!

 Happy New Year to all!  I look forward to reading your posts, getting to know

some of you.  Thought I'd drop in and introduce myself.  My name is

and

I'm from Melbourne, FL....originally from CT.

 I've had ongoing back problems since my mid 20's, now 57 y/o.  My back

always

felt like it would " go out " and piriformis was always painful.  It's been

literally a pain.  I began w/years of PT with only minimal relief and

TENS...followed by chiropractic.  Then came pain management including

epidurals,

radio-frequency and various inj's in SI joints and for hip bursitis.  I

barely

tolerated a diskogram.  Yrs ago the MD's told me it was " just some arthritis "

only to learn later I had early DDD, herniated disks, stenosis,

spondylolisthesis and nerve impingement.

 In Feb '07 I was let go from my job (nurse) due to chronic back/sciatic

pain

that resulted in immobility.  I don't know a nurse who doesn't have lumbar or

cervical pain.  I, out of desperation and pain, chose to undergo a spinal

fusion

in 6/'07.  I am currently living on Soc Sec disability.  I'm unable to stand

or

sit for any length of time, bend or twist my spine.  I never imagined at age 57

I'd be in such bad shape.  Never had any specific injury to my back however I

worked many years as a HHA, CNA then LPN.  Guess it did me in:-(

 I had a 4 level fusion, L2-S1 (anterior and posterior) w/rods, pedicle

screws,

anterior fusion plate and laminectomy.  What a surgery!  However, I knew it

wouldn't be easy.  Two days post-op I blew a pulmonary embolism and

was terrified I was going to die right there in the hospital.  My 4 day

hospital

stay extended into a 10 day nightmare.  I was pumped full of blood

thinners and

for 9 months after I had to ingest rat poison (warfarin).  Recovery was

uneventful but long.  I felt better for a cpl yrs, not pain-free but

better.  I

was able to walk w/o severe back &  leg pain.

 Two yrs post-op I began experiencing lumbar, SI joint &  hip pain. 

Everything

felt " out of whack. "   Now, approx one yr later, I've been experiencing

increased

back pain and bilateral nerve pain shooting down my buttocks, legs & down to my

feet.  It's much like before my surgery.  Feels like a hot poker inside

stabbing

and twisting me.  Stepping on any uneven surface or twisting my trunk ever so

slightly is intolerable, I get wicked spasms and radiating pain.  When I am

on

my feet after a while it feels like bones grinding together....seems I can

almost hear it!  I continued wearing my back brace, since my surgery, when

walking or doing housework.  I bought a reacher/grabber thing which has been a

blessing.

 Last month I had a myelogram.  OMG....I thought I was going to vomit, pass

out

& die!  IMO, worse even than that diskogram!  A tech had to keep placing wet

washcloths on my head.  They had me in a prone position w/pelvis draped over a

hard foam wedge pillow, very uncomfortable.  No sedation, just my Lortab.  I

had

to completely fast and d/c many of my Rx's including NSAID's, anti-anxiety

meds,

etc.  The radiologist had a very difficult time inserting the needle into my

spinal column due to much scarring, he had to insert the stylus & needle 2x to

inject the contrast.  I felt like I was giving birth, with Dr ordering me to

bear down, hold breath, push, breathe, relax, push...you probably get the

picture, lol!  It was just HORRIBLE!  Then I had to remain there in the

hospital, flat on my back for 4 hrs with the entire bed placed in a 30 degree

position!  Now, that was weird!  Thank God, I never experienced the myelo

headache that some patients do.  I've had people tell me they think myelo's are

barbaric, I have to agree! 

*Below is what the myelo/CT revealed on examination.............

 

 Grade 1 retrospondylolisthesis of L1 relative to L2

 Contrast column significantly attenuated at the L1-L2 level

 Broad posterior disk herniation present at L1-L2

 Bilateral facet joint irregularity and spurring at L1-L2

 Canal narrowing and likely bilateral lateral recess narrowing at L1-L2

 Impression of the thecal sac at T11-T12 likely related to a small posterior

disk herniation

 Equivocal lateral recess narrowing at L4-L5 and L5-S1 bilaterally

I see the ortho surgeon on Monday, the Dr who performed my surgery in June

'07. 

I want to know what my options are, if any.  I REALLY DON'T WANT to have

another

surgery!!  Now I'm terrified of blood clots even though they took precautions

beforehand.  I inherited my grandmother's varicose veins, ty grandma:-(  I

went

for a 2nd opinion prior to my '07 surgery and this MD wanted to START with

fusing L4-L5 and then work his way up as needed.  I thought, " You must

be crazy, I don't want multiple surgeries. "   I later learned this Dr is

notorious for performing repeat surgeries.

 Well, here I am again in the same boat.  I'm not very knowledgeable in this

field however I do know this is a common occurrence for what's directly above a

fusion to weaken and become unstable.  I've heard people say.... " I'm having my

4th, 5th, 6th, etc, back surgery " !  I don't want to be one of them!  I never

thought I'd be where I am today, it's so depressing.  I don't mentally feel my

age but my body is a mess.  I now have diabetes, oral pill/diet controlled,

HPN,

GERD, depression, anxiety, etc, etc.  All except the last 2 were diagnosed

since

my surgery.  If anyone has any comments, thoughts, etc I would like to hear

them, esp prior to my Mon appt.  *I am definately not interested in this

rolfing(?) massage therapy, ty!  I do however understand the concept &

importance of body mechanics, posture, core-strengthening, etc.  I do exercise

in my pool.  Thanks for listening to my L-O-N-G introduction.  Have a nice eve

and w/e everyone :>)   

 ~ ~