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Old 07-29-2017, 08:29 PM   #241
ger715
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Pam,
Niggs (Nigel) posted on 7/27 sonnets 7, 8 & 9. Your interest delights him. For a change of pace; you may want to check them out. Hopefully brings thoughts away for even a short time from the hospital setting and all you are enduring.

Gerry
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Old 08-01-2017, 10:58 PM   #242
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Pam,
Have you heard anything about the bone cancer/infection issues?

It appears you were pretty much told you needed to have a L-3-4 fusion or thereabout. Is this something you think you would be up to? I think you had mentioned in the past having had a fusion in either the cervical or lumbar area.

I had L4-5, along with a laminectomy some years back but still needed a series of Epidurals a year or two later in that area, which didn't help. Also had a failed SCS trial.

Since my mamo over a year ago revealed a growth on the back wall which appears not to look cancerous; but will have to have continued mamos/ultrasound regarding the growth every 4 -6 months. Have my third testing middle of this month.

As you mentioned; it does get overwhelming. But as you are a "fighter" as well; you will not give in or give up.

Sending prayers your way "my dear friend" to cope with all you are dealing with.


Gerry
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Old 08-02-2017, 07:47 AM   #243
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Just got the scan results from my neuro earlier tonight. Good news - No to osteomyelitis and No to bone cancer. But I have got to keep an eye on the right breast tissue, you can see / feel it is denser than previously and the right nipple has started to invert ever so slightly. So much so I had to ask DB last year, has my nippple always looked like this - No! I've never had it before that I could recall and when they did the testing it was very sore to touch with the ultrasound. So I have to have 12 monthly checkups & if it turns in anymore or it looks to be turning a different colour, or I get a discharge of any kind, I have to go straight away to GP for referral. That's good news I think...

It does however seem I might have some sort of blood poisoning from the half titanium pedicle left behind in 1996 from the surgery in 1994. It may explain why my markers were so high (like really high) and why I keep throwing high white cell counts on and off for over the past 20 years. Now of course that has to be checked & needs to be done before Narula can proceed.

In the meantime L4/3/2 has disintegrated / deteriorated - which explains why I'm loosing height and the vertebrae needs to be removed preferably via an anterior procedure but because of many difficult stomach surgeries I've had and the difficulties they presented it is a real predicament for us all and so, and I absolutely must have a general surgeon present as well when they operate.

The not so good news ... If the titanium pedicle is in fact poisonous and a problem Narula will not do any procedure at all, so I simply must get that resolved first. If it's not a problem which I'm hoping for, they will leave it there inside L4 where it's been for the last 23 years and I can carry on. Truly it's not really caused any issues, the odd pain / awareness occasionally but in the main no real cause of any issue has been able to attributed directly to the "oh it's the 1/2 pedicle left behind" I do wonder if it has caused me pain on occasion, but the reality is it is more likely pain from where they took the bone from the laminectomies in 1978 & again in 1994. Laminectomy pain can last for 30 plus years I'm told....

I go home tomorow, I'm being discharged with yet more drugs of meds to be sure I will survive the next 3 weeks and not require hospitalisation or assistance for next 3 weeks so we can celebrate our anniversary. I will know more when I speak with neurosurgeon next week with my husband. The Neurosurgeon insists DB be there with me when we meet on account of the severity of the situation. To do nothing is not an answer either. My spine is crumbling at a rapid rate and my spinal cord will become compromised before long. Night xx

Quote:
Originally Posted by ger715 View Post
Pam,
Have you heard anything about the bone cancer/infection issues?

It appears you were pretty much told you needed to have a L-3-4 fusion or thereabout. Is this something you think you would be up to? I think you had mentioned in the past having had a fusion in either the cervical or lumbar area.

I had L4-5, along with a laminectomy some years back but still needed a series of Epidurals a year or two later in that area, which didn't help. Also had a failed SCS trial.

Since my mamo over a year ago revealed a growth on the back wall which appears not to look cancerous; but will have to have continued mamos/ultrasound regarding the growth every 4 -6 months. Have my third testing middle of this month.

As you mentioned; it does get overwhelming. But as you are a "fighter" as well; you will not give in or give up.

Sending prayers your way "my dear friend" to cope with all you are dealing with.


Gerry
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Last edited by PamelaJune; 08-02-2017 at 10:35 AM.
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Old 08-03-2017, 09:16 AM   #244
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Default Jeez

Your silent time may it be a most remarkable moment
It be a faith based moment
A moment of clarity if you will
You ability to mutuel when you need it most
You are an amazing being
How lucky he is
Your sincerity is so transparent
Your time of experiencing a touch from Heavenly Father
As you well know it comes in all manifestations
Your a inspiritatio who is real and is able to radiate that to another
Happiness be in you heart
To fell the joy you so deserve
To have the identical impression 1/2014
And because breast cancer loves bone it the most likely place to go
Hence when left alone in ones head
And to hear the possibility of the following
"Enhance the of lower lumbar better able bodies
Differential diagnosis includes osteomyelitis, metastatic disease"
All I wanted to know was why was it hurting as badly and progressing so quickly that all it where a cyst also active on my lower spine
And to be just sent to a doctor I went to three days ago only to tell me your at the wrong doctor
You need to see a vascular dr
I'm like are you kidding
To have to have money for a co-pay
Then for parking
All the wnergy to get to the doctor just said coming home
I'm not rushing
To say I don't know what you are thrown and to continue to put
One foot in front of the other
Is just who you are
As I so get it
You are gifted
And you have the answers
As you show over and over
For what may work for one will not work for another
And you can see that
Blessings to you and you faith that give you the strength
You go
Love
Me
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Old 08-04-2017, 03:55 AM   #245
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Eva, I don't know what to say to this, I'm lost for words and struggling to respond. What I want to say to you and Instead I'm lost and what comes out at the moment is gibberish. Fortunately you know I've been ill and are more patient than sim either, I have to go through and check every word I type. I can't believe they had you attend a doctor only for you to then be told sorry your in the wrong Place. Unbelievable!!!

Quote:
Originally Posted by eva5667faliure View Post
Your silent time may it be a most remarkable moment
It be a faith based moment
A moment of clarity if you will
You ability to mutuel when you need it most
You are an amazing being
How lucky he is
Your sincerity is so transparent
Your time of experiencing a touch from Heavenly Father
As you well know it comes in all manifestations
Your a inspiritatio who is real and is able to radiate that to another
Happiness be in you heart
To fell the joy you so deserve
To have the identical impression 1/2014
And because breast cancer loves bone it the most likely place to go
Hence when left alone in ones head
And to hear the possibility of the following
"Enhance the of lower lumbar better able bodies
Differential diagnosis includes osteomyelitis, metastatic disease"
All I wanted to know was why was it hurting as badly and progressing so quickly that all it where a cyst also active on my lower spine
And to be just sent to a doctor I went to three days ago only to tell me your at the wrong doctor
You need to see a vascular dr
I'm like are you kidding
To have to have money for a co-pay
Then for parking
All the wnergy to get to the doctor just said coming home
I'm not rushing
To say I don't know what you are thrown and to continue to put
One foot in front of the other
Is just who you are
As I so get it
You are gifted
And you have the answers
As you show over and over
For what may work for one will not work for another
And you can see that
Blessings to you and you faith that give you the strength
You go
Love
Me
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Old 08-09-2017, 05:58 PM   #246
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Surgeon consult Wednesday 16th at noon They have insisted my husband be present. Could they make it sound any scarier!!
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Old 08-09-2017, 10:59 PM   #247
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Quote:
Originally Posted by PamelaJune View Post
Surgeon consult Wednesday 16th at noon They have insisted my husband be present. Could they make it sound any scarier!!

Pam,
Awaiting your report on the Aug. 16th consultation.

Pray it is not as scary as you may fear.


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Old 10-14-2017, 11:07 PM   #248
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Quote:
Originally Posted by PamelaJune View Post
Surgeon consult Wednesday 16th at noon They have insisted my husband be present. Could they make it sound any scarier!!

It's good to have a supporting spouse present, it is also someone who can be a witness, and remember what you may not. I have my phone set on "Record', through an App I have and record every visit. The screen is off, and not one doctor has noticed it. This is so I can make sure I have the facts straight. I have found that I have in fact remembered some things wrong. God Bless you and I hope it all works out well.
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Old Yesterday, 05:30 AM   #249
eva5667faliure
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Quote:
Originally Posted by PamelaJune View Post
Went to work early this morning, I had awoke at 3am with acute lower spine pain, got there for 8 and worked nonstop until 1.30 when I had all that needed doing done & I was bought home by staff to DB, who together with the staff insisted on calling an ambulance despite me saying the hospital won't do anything. Taken to hospital and they did X-rays. I screamed every time I moved it was that bad, I haven't been in acute lower back pain like this in a very long time. X-rays show the remaining 1/2 pedicle embedded titanium screw (left over from fusion in 1994 when the plates and screws snapped & all had to be removed in 1996 but couldn't take the broken 1/2 pedicle out as embedded to deep in vertebrae) has moved a few millimetres and I have a 6mm spondylolisthesis L5.

ED said their aim is to reduce pain with medication and they can't do anything until I see a specialist as I don't have any obvious fractures. I asked if that meant she was saying I should go home, yes, so I'm discharged in agony. Nurses all in disbelief the young ED doctor discharging me. Twice they asked her and she snapped, yes all she needs is drugs. So DB came in to help me up and out, a nurse helped me dress & I'm still involuntarily screaming every time I move. DB, he is very disappointed and dare I say shocked I've been given the bums rush and so callously. I said to him now you know why I'm always reluctant to go to hospital via ED as I'm labelled a drug addict. In the 2 beds either side of me while in ED were ICE addicts and round the corner another addict screaming and shouting for methadone. The young ED doctor just couldn't care less, she said more than once ED job is to reduce & manage pain so patient can go home or if necessary be admitted if there is an obvious fracture. No fracture so I can go.

I'm glad to be out, I've had X-rays, I know what's wrong and I can manage it from home until I see my own doctor. Oh ironically the ED doctor told me I would need to take more drugs... the upper back pain I realise now is referred from the lower back, I just didn't realise yesterday or the day before my lower back was so bad. It's always hurting to some extent so I've just put the thought aside.

Post edit
So I'm Home, the pain is not even remotely under control, I'm crying and screaming in pain & DB lecturing me " I should have said I'm here because I can't manage the pain at home" I've told him to leave it go, he's not making me feel better, and while I know me in this obvious pain is unsettling for him he needs to suck it up just like I am.

I read my discharge letter, it says I deny the following;
Having fallen in recent months (not true told them the falls I've had)
Taking drugs or alcohol

It goes on to say;
I've experienced relief from 5mg oxynorm, (not true, I said it had made no difference)
I'm discharged with an IR for buprenorphine & oxynorm. (No only script for buprenorphine) I queried it saying it says you've given a script for oxynorm 5mg, you haven't, but if I need it on Monday my doctor won't give it because they will say I had a script today. Nurse came back & apologised, said she didn't know why the "young ED doctor" wrote that, and gave an amended discharge letter.
I'm to see a specialist on Monday - oh yes I'll get in that quickly....
To return in 48 hrs if no better.. no chance of that
OMG
IM SO ANGRY
What the f
I want to punch anyone who would try and test me like such ever again
I have had the only experiences
Never ever will I let anyone cut me open again
And to be deemed an addict
Oh PamelaJune
I cry for up you
I know the physical and mental pain and the disrespect disregard of the excruciating pain on suffers
Just the headaches alone from all the pain
As I sat in my oncologist office for my usual visit
Asked if I was okay
Not realizing that my pressure was being taken
My dear friend
Sitting in the waiting room waiting to be seen
My pain caused my pressure to go through the roof
Hearing what happened to my mother yesterday
Estranged I still wanted to step in and take charge of the horrific treatment she was getting
What is wrong with this world we live in
Please don’t take this the wrong way
After much time on NT I opted not to have a SCS
To hear the trouble you already experienced
I fear a power outage
Or the paddles shifting
Or the stupid device not charging
Until it was dropped
So sorry
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Old Yesterday, 06:54 AM   #250
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Default Had read all posts

You are amazing
In everyway
You have a mind and body only you know
The fear we go through
Not knowing
Having to wait
The doctors who just DO NOT GET IT IR GIVE A POOP
just an hour in my shoes I tell them
Just an hour having no relief
Just an hour nobody listening to them
Just an hour
Of being accused of being an addict
Just an hour of being alone
Just an hour not believing them
Just an hour begging begging just kill me
Just an hour
I have you in prayer
I have your back
I have a friend in you
You are dear to me
May I return my experience strength and hope
We are very very strong woman
We have tolerated more than most
And yet we still do do and do
We are not forgotten
May one day just one see what it takes to get up in the morning and ask Heavenly Father
Help me in this day
You matter in everyway
We may not understand why what and when it will all get easier
But like myself
I have but one who needs me
That be Eva
Today I take her to the dentist
A job her mother should be doing
I have given up on any hope of help
Just yesterday a very dear friend who is home for a short time before she travels back to her family in Florida
Says Eva your hair has gotten so long you look so good
I just cried
Thank you I said
And she understood
As she too has invisible pain
I haven’t been able to get my hair cut
I have given up and thaught it be easier to just let it grow out
A little lipstick
And that all I do
It isn’t that o want to look sick
It is the misunderstanding as it is all inside hidden from the naked eye
And I will never allow myself to look disheveled
For as long as I can take a shower and smell fresh
Have Heavenly Father in my heart and remember to keep it that way
To have a beautiful grandchild who needs my everlasting love
The few doctors who listen and know as they have been with me from the very beginning
There are a few very scary things going on and must be addressed
I am taking it slowly
Said to myself
What tha rush
Thinking of you as I go through it by myself
Love
Me
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