Bah! No, I'm not joining the gym as we are in the middle of the month nearly. I am utterly confused taking morphine.

I have a breast screening on 11th .. Then my pre op on the 17th .. I think .. Looks at paper, yes, the 17th. It's my birthday on the 18th and on the 25th I have my hysterectomy .. So no point really wasting money we dont have on the gym.

Up until end of April I was allowed to get ESA which is called Employment Support dunno what the A is for .. Asses probably. Now that has run out we have lost £400 a month in income.

As I said before, am seriously contemplating returning Tootle which as I claim Disability Benefit would give me £208 spare .. That is taken up for the car at the moment. It if I give it up I,will get it in cash.

I LOVE my little Tootle Two but perhaps it's not so good in winter. We will see how we go.

Saffy
 

May all be well with your outcome; besides, feeling better with medical issues you now experience, other than the nerve pain which brought even us guy folk here in the first place. I know my wife and niece, sisters-in-law, and friends have felt better with the Hysterectomy done and out of the way. Yes, I realize it is quite an invasion and a personal assault, but the person you are is set between your ears, and she is the friend we all cherish.

Tootle, well, were it me, I would also be considering the release of the little car if it would replenish coffers and restore cash to the bank rather than making payments. Cash is King or Queen, however one looks at it [economically speaking].

Prayers for you in all things,
Mark56:hug:z

Mark,
 

A couple of things. Number One:
Not sure you saw my post previously sent to you regarding my going into" false" labor (that what it was called back then) three weeks before my baby was due.

Oddly, my baby was due May 20th and on May 20th, she did arrive. When I had gone into early labor (5 min. apart) three weeks earlier, I called the doctor, he told me to stay put because he felt it was "false" labor pains. I'm glad he did that because the pains eventually subsided some; but when May 20th arrived....Did we ever have to get to the hospital quick. I had started preparing dinner and finish; but whoooo.....I knew I better get out quick. Made it to the hospital in time, but My doctor didn't. I don't know who delivered her because my doctor's name was put on the certificate and I was awake the whole time and knew when he came it. It was all over. Mother and baby were fine.

Number Two:
Thank you for trying to help me put the dash in Sinead's name. I really have never pasted and have no idea what pasting is about. So, at this point, Siinead still does not have the dash above her name. I hope she does not mind.

I can understand your daughter-in-law's concern. It sounds like your daughter-in-law is in the hospital all this time.

Praying for healthy, beautiful, happy delivery,

Gerry

Thank you Gerry
 

I do understand your post regarding the false labor scenario, and despite the doc having said to DIL get to the base hospital on Ft Bragg a week ago Monday, nothing happened. Dilation stopped at 4cm. She was sent home with a tired hubby, and my wife at 2:30 the next morn. She remains at home, with my wife attending doc appts with her. I believe you when false labor is indicated, for that must be exactly what she experienced. She is due 20 May. Not so long from now, true?

Yup, we sit and wait, and I will return home Saturday, as my vacation time is over then.

Now as to Sinéad I tried the ctrl alt e maneuver she proposed, and on my pc based laptop, that did not call up the required e, so just type her name knowing she respects your attempt.

Blessings on all,
Praying,
Mark56:grouphug:

Mark....
Commented to hubby about using the cursor and pasting Sinéad. He was able to show me how it is done. Thanks to both of you....success !!!

I was so very surprised when you mentioned the date...May 20th, and the circumstances being much the same.

Still prayin

Gerry

Sinéad
 

[QUOTE=Sophie_;877676]Hi Gerry,
Thank you for such kind words and I think Karen will be pleased with the sound advice you posted earlier.
I'm to meet a surgeon next week to discuss my options. I have tons of pain at the Sacro iliac joint, lower back into my bum, my hips hurt like hell and my left leg burns and throbs and is numb in places. For a long time they couldn't find what was causing my pain until the last MRI Scan I had which showed at least two disc protrusions and a whole lot of scar tissue pressing on the S1 nerve root and it is this scar tissue that next to get sorted. I'm desperately praying that the surgeon will agree to help me in some way as many have said no. Of course I had to have my SCS removed so I could have MRI and other tests but I imagine my pain Dr will agree to put another in. I still have the battery in from the last one.

How about your status, you've probably posted it already like me but I missed it. I hope your pain is manageable, I'm on so many strong meds and I hate them.

************************************************** *****************************************


Sinéad....I did it...Yea !!!!!

I had spinal fusion, badly crushed nerve, and a laminectomy about 5 1/2 years ago. Still had considerable amount of pain. Eventually went to Pain Specialist. Of course, one of the big side effects is constipation. Didn't realize a woman who had a complete hysterectomy could push bladder out. This required Cystocele Surgery (bladder put in mesh sling) (in 2008 FDA warned doctors not to use mesh in that area for women). Within two weeks after surgery, developed severe swelling, edema of legs, ankles and feet. Take meds daily to control. Also at that time, my ankles, then feet started discoloration and lesions under the skin. Found out that is Statis Dermatatis. Those lesions can become ulcereated. This stops at the knees. So far, i am up to the knees. With all of this, periphereal neuropathy, from the waist to the toes developed. Much pain in the legs, feet and ankles, a lot of burning.

Then to top it off, when the bladder is placed elsewhere, the small bowel comes down causing a Rectocele. Had that surgery done as well. Three urogynocologist said this should not have been necessary. First, my urologist, who did the Cystocele should never have used mesh, then second...the wall should have been reinforced so as to prevent a Rectocele from happening. Rectoceles have a tendency to return. With my using such a high dose of narcotics, it has already started to return.

But getting back to your S1 scar issues. My Pain Specialist did many procedures in day care and the last being a precedure to remove any scar tissue in the S1 area. Unfortunately, this was not the problem for my pain and did nothing in my case. The procedure was next to painless. Just hope this can be of help for you.

Take care and glad we're friends,:hug:
ASAP (Always Say A Prayer) for you,

Gerry

Hi Gerry,

You've certainly been put through the mill with all of your procedures, it has hard to imagine that constipation could cause all of those problems. I'm sorry to hear that some of those problems are recurring. What levels was your fusion? I'd like to avoid that one although it has been discussed on several occasions.

Ill keep in touch when I meet the surgeon and please say a rpayer for me that he will agree to help in someway.

Sinéad :) :hug:

Fusion/laminectomy
 

I had fusion/laminectomy surgery about 5 1/2 years ago. It was at the L4-5 level with a badly crushed nerve (surgeon said he had never seen such a red angry nerve like that before) My spinal cord was also in need of some of the covering removed (laminectomy) to allow a little more room. Still areas that are not good; but this being the worst.

The main reason the narcotics causing the constipation and awful straining enabled the bladder to come almost out was because of something I had never known or been told about. When a woman has a complete hysterectomy (I had several years ago) the bladder, with extreme straining was able to to be pushed out enough to be visable. A few other methods were used to try to push the bladder up did not work and the need for the surgery was the only way to keep it in place. The bladder was put in a mesh sling (2008 FDA warned doctors mesh not to be used in this area because of eroding causing almost impossible removal and pain); but my urologist used the mesh in the sling, as well as closing the surgery. (within less than 2 weeks developed swelling of legs, ankles, feet - edema. Taking Lasix daily to keep swelling under control. Also, within two weeks developed Statsis Dermatatis;the discoloration and lesions under skin of ankles, feet and now up to knees .

When the bladder is moved to another position; it leaves space for the small/lower bowel to drop down. Had the urologist reinforced the vaginal wall; this would not have happened. Three urgynocoligst all said this should have been done because if not; the lower bowel will definitely come down. Also, all three said they would have never used mesh. A year after the Cystocele surgery, had to have the Rectocele surgery.

Hope this helps to be a warning to women who, as far as I know, are not even aware the bladder could be forced out like it was when you have undergone a complete hysterectomy.

Between the Fusion/crushed nerve and the Cystocele surgery, developed the PN from the waist to the toes. Not nice. Had a failed trial stimulator done a couple of years ago. My Pain Specialist wanted me to do another; but now that there is a chance for additional Rectocele surgery, is not a good idea because having stim could be a problem should the need for surgery arise.

Well, you sure have opened a lot of doors. As Mark said it well....you had a good idea in starting this thread; sharing info that many of us are in one way or another experiencing.

Gerry

I really don't think they know half of what they are doing over here in the UK. I feel like a Guinea pig. One thing I am going to do now .. This minute .. Is right the pain clinic and ask Donna my nurse, if there is some form of corrective surgery for that lump.. I'd rather have a ten inch scar than this deformed body, will let you know ...

A good thing to pursue
 

Disfigurement at the hand of a surgeon is actionable in the US even IF the scarring was produced in the body of the patient, thus surgeons are ever proud when they provide ultimate results with a minimalistic scar, for thus disfigurement is not an end result. Toss the word disfigurement over the net to the performing surgeon and discover whether it engenders any interest. Can't hurt.

Yup,
a simple country comic with naught but a laugh and a smile, but no brain,
I must follow Dorothy to OZ,
Mark56:eek:

amen gerry
thank you for telling it like it is
i am sure you have helped someone
you know
someone who cares

To my friends. I have come to the conclusion that this life I live is no life, and certainly no life for my family.

**

Basically it's either live a drugged up life or take less drugs and suffer pain. I've had enough.

Saffy my dear
 

Saffy let this cup pass from you, please please do not give up yet. I care about you. I too struggle with feelings of hopelessnes,pain and all the situations I have to live with. Life has good parts yet. Take the more medications to keep you comfortable. PM me, I have another suggestion I would say in private. This is important OK? PM me. There are other things that may help you. have faith, just for a minute in me. I am here for you this morning. ginnie:hug:

Hi Saffy
So sorry you are suffering this way :(
I have had to edit your post per our guidelines

Please do visit our SOS Forum as members there understand how you are feeling and can offer you support

http://neurotalk.psychcentral.com/forum29.html

here is also a very helpful website www.metanoia.org/suicide

Karen
 

Hi Karen,

Please don't suffer alone, call someone, I've just sent you a text message on your phone, will you answer me please Hun, I'll talk to you if you txt me a landline number.

This life and pain is the worst,it tortures and boy how often I've felt like giving up but I can't and wouldn't do that,


Love Sinéad xxxx

Thinking of you today Karen. Please speak with someone. You are not alone!

Jackie :hug:

Karen
 

Hi guys,

I sent Saffy/Karen a text message earlier and she has just replied, she's extremely low. I told her everyone on here is asking for her. I also asked her to get some help.

I was so afraid for her as we all are. I'm saying some prayers for her and I hope those who do too will join me.


Love and God bless,

Sinéad xxxx :grouphug: :grouphug:

Dear Sinéad
 

Thank you for following up with Saffy. I had sent her a PM this morning to which she has not replied. If you text her again, please do let her know I was inquiring about and worried regarding her.

Of course, I am praying,
Mark56

as i did as mark did
with no reply
way concerned
i'll be here with PC on
hoping to hear from you
someone who cares

Hi
 

Hi guys,

I was very relieved to hear from her too and my heart goes out to her, I hope she does decide to get some professional help not only for her but for husband and two daughters.

I'll text her again in the morning, those meds can cause people to think all sorts they aren't nice.L

Love and God bless to Karen and too who think they are suffering alone, they aren't.

Sinéad xxx :grouphug: :grouphug:

looking for Saffy
please join in
looking for Saffy

someone who care

I was so very touched to read all the messages and pm's. I'm ok.

It's my pre op this morning so I've at least got to get out of bed for that.

Am ok. Was having an awfully bad day. Roll on summer.

roll on!

glad to hear from you

be well

i need you

we need each other

Hi Karen
 

Hi Karen

How did you sleep last night? I was just thinking, do you have to have the surgery next week, maybe you can put it off until you're in a better frame of mind, what do you think? Perhaps it's just prolonging the inevitable.

Thinking of you today.


Sinéad :) :hug::hug:

And Prayin
 

Plus Saffy, if you are talking about rolling on in your Tootle-mobile, that may lift your spirits since you so enjoy driving Tootle.

Here for you,
Prayin too,
Mark56

Karen
 

Hi Hun,

I guess like me you can't drive with your meds, how about asking someone to take you for a drive, there is some gorgeous countryside to see in that part of the country, although it has been time since I was there I'd like to go back.

Did everything go okay for you today?

Thinking of you


Sinéad xxxx

dear saffy
 

Oh Saffy, please answer us. We are all behind you and care what happens. don't shut yourself off from us. Let us try to help you through this time. I get help here, I really do, and lots of encouragement to keep on going. Please come back, and be here with us. ASAP ginnie

Saffy
 

Hi Ginnie,

I've been in touch with Karen by phone, I sent her another message about an hour but I know she had a hospital appointment. She's very low and yep we are all worried about her. Hopefully she has surrounded herself with her husband and daughters. I'll post again if she replies to my text.

How are you getting on, okay I hope.

All the best

Sinéad xxxx :) :hug:

Saffy
 

Hi guys,


Karen has just replied, she was sleeping, I think we can stop panicking although I don't think we we won't worry about her

All the best

Sinéad xxx :)

thank you sinead
 

Thanks for the update with Karen. When any of us goes missing, it feels like part of our family is missing. I hope she will recover soon. I am OK, visiting my Surgeon today, to discuss the whole issue. Having lots of trouble with doctors. Not a good situation at all. Wish good thoughts at 2p.m. today. ginnie:hug:

WHat can I say but thank you .. your support and care for this "stranger" has given me a huge cuddle.

I had my pre op today ... am ready for the op.. I get a posh private room so willl have to take some pics for you. I guess I'll still have to wear paper knickers though/

Your support here has been humbling.

Thank you. xxxxxx

SCS for me again I hope!
 

Hi Ginnie,

How did you get on at your appointment today, I hope it went okay for you.

I too haven't had good experiences with doctors, my Pain Doc sent me for some neurosurgeon and orthopaedic consults to see if they could help me. I had a Medtronic SCS for a while but it was removed when it stopped working. I also had several MRI scans that showed a great deal of scare tissue wrapped around the S1 nerve root from my previous discectomy 16 years ago. It causes horrible pain and the worst sciatica.
Last Monday I met my last ortho doc and the*appointment didn't go well. He wont agree to anything. Even if it is possible to operate on top of the nerve root the the best he can offer me is only 2% success rate. He examined me and because that day there was no evidence of the nerve impingement he took the view that it didn't exist and part of my problem is psychological, i never heard such BS, how can anyone that is clearly in pain put an act on. Although I wasn't expecting a good outcome I was terribly upset. *
I met my Pain doc last Tuesday and he wants to put*two Nevro stimulators one for my *stback and one for my leg. Although I've just read that Nevro have brought out one SCS to cover both back and leg pain. My health insurance covered the first implant so I'm on the public list for this one. Even though I'm on the list over a year now God knows when I'll get called, I'm hoping it's soon as I desperately want to go back to work and go on a holiday and basically get my life back.
So that's the latest story in a longish nutshell. Remind me again is your problem your neck?


Chat soon,

Sinéad

Hi Sophie
 

Hi, and I am sorry you are being treated that way too. Me too. My orthopedic surgeon does not want to cover post op pain, and neither will my specialist. So now I have to litterally go find a new pain specialist that I trust. Fat chance. Very discusted. If I don't do the surgery, I will eventually loose my ability to walk. Torn tendon, ligaments, archilles. Been walking on this for 8 years, and the pain doc had the nerve to question me about how much pain I was in? Now I have the proof, and I am not pleased. Pain doc will treat for cronic pain, not surgery pain, so I start tomorrow looking. I feel like a ping pong ball. Surgeon today, said to call him if I cannot find anyone. I need four seperate procedures, and i do not intend to scream through it.

Sorry you have gone through so much with the SCS situation. I was turned down for a stim. Instead fused C3-7. Now I have more trouble in the spine as well. I have no idea about my future. So I pray and come back here to talk to you and others for support and comfort. It is hard for all of us on this site. Nobody is here because they have nothing better to do, we are all in pain and in trouble with some kind of medical issue. Sometimes I think I am loosing my mind, other times I seem to do OK.

Hope you are OK tonight. Do not let any doctor tell you it is all in your head. That is very unfair to do. Nobody I know fakes pain. Most folks who have no conditions are glad they don't! Pain specialist had my PCP beg him for more help for me, guess he didn't believe me either. Ticks me off to no end. MRI doesn't lie.

Have a good night. I hope you are able to sleep and have peace. I will keep you too in my prayers. ginnie:hug:

Ginnie

thinking of you too
take care of yourself
sweety

Karen....
 

I've been gone while you were going thru this very hard time. My heart truly sank when I saw that you've been suffering so.
You are like a sister to so many of us here. The one thing I know for sure about you, Karen, is that you DO have an inner strength and you rise above these attacks.
I mean really. Look at all you've been through these past several months.
Your body has been through in incredible amount of struggles, especially when that infection set in. And what this is doing to you emotionally. I'm so proud of you for coming here to share, because you know how much we all care. We need each other. Thank you for who you are, Karen. You have always brought us many smiles and chuckles, along with the sad times. Thank you for bringing us into your world and sharing it with us.

One by one you are getting these necessary surgeries out of the way.
You WILL feel like 'you' again. Please believe in that.

Caring so deeply,
Rae
:hug:

Sinead, thank you for keeping us posted along the way. :hug:
You are going through such a bad time too and I'm so fed up with Dr's who throw their hands in the air and say that these things are all in our head. I'm so sorry you've been made to feel this way.

How Glad
 

How glad am I to learn Saffy is handling her situation in goo stead even though the low time was experienced. It is so good Saffy to read you posting of your upcoming hospital visit with some mirth. Now, I have not had the pleasure, or....... :eek: displeasure of paper knickers, but I can well imagine, having had the displeasure of some good amount of hospital time and the finer details of elimination........

My special prayers are with you in the forthcoming work to be done so your needs will be appropriately and completely addressed so healing will begin, occur, and present you as a new person who is ready to face the fullness of life once more. I seem to remember you describing your beach attire for holiday. Get that trip brochure out and have a whee of a time pondering what to do next holiday.

Ginnie and Sinéad I continue to hope and pray you are at long last provided healing care so happiness might return to your lives. Yes, we all know what it is here to live the ick of chronic pain. I have surely known points of difficulty dealing with all of the years of pain, and you are encouraged to give God a BIG part in handling your needs. He is who has helped me stay the course, ultimately pointing the Way to the course of living Through pain which is beyond the reach of the stim. There are moments for me, and the Lord helps me bear up. May He who guides me bring you to peace.

Prayin,
Mark56

Sinéad ....I'm so sorry you will have to wait so long for an SCS...the only good side might be the Nevro may have the one that does both back and legs by then.

If you don't mind, may I ask what kind of meds you are on to help you get at least thru this painful time.? I know without the Oxycontin 60mg.s 4 x a day and Oxycondone (percocet) for breakthru pain; it would be almost impossible to get thru a day. Of course, without prayer; nothing can be accomplished.

(Gerry)

Saffy/Karen, you are one upbeat lady....don't every convince yourself you are not. Saying things in such a way that only you can. Remember; beauty is only skin deep (I have to remind myself of that frequently when looking into the mirror). You are beautiful beyond any mirror. We all love and care for and about you very very much.

(Gerry)

gerry

as you are needed
please don't go to far
no mirror necessary
you have to feel it
Amen

Hello my friends
 

Its great to have Karen posting again, we missed you and you are in someways like a sister and that's why we all care about and your hubby/partner (are you married, not that it makes any difference).

I do survive on a ton of meds, about 156 a week my hubby counted and they really don't work, they take the edge off, the side effects as we discussed in the other thread are horrible and if I wasn't on these meds I could probably drive and thus go back to work but then the pain would have me screaming with pain or at least I think they would and were all the same... Aren't we?
Here's a list of my meds and note that I hate every single one of them. As for the moderators I hope they don't remove them, not everyone should or needs to take them and we know that, we're not that stupid;

Cymbalta 120mg * *1 in morning, 1 at night,*
Matrifen 75mg * * * * Every 3 days or 72hrs, this is a narcotic patch
Oxynorm 20mg. * * *Every 4-6hrs*as required
Oxycontin 40mg: * *1 in morning, 1 at night,*
Zimovane 7.5mg * *1 in the evening @ 19:00hrs sleeping tablet,
Lyrica 300mg * * * * *1 in morning, 1 at night,*
Rivotril/Clonazepam * * 5mg *at night, * *anti twitching drug
Vimovo * * * * * * * * * 1 to be taken twice daily - useless drug for me, dunno why I take it?!
Xyzal 5mg * *1 per day antihistamine

I've tried Neurontin - hated it,
Tapentadol, the same thing
Butrans burned my skin
Zydol and Tylex for a longtime but my body just got used to them and I've discovered that the proper branded drugs work better that heir cheaper versions I got in some hospitals because they were rubbish an refused point blank. They wanted to give me a cheaper patch, seriously wtf I'd in withdrawal in no time!

That's all from me, any questions queries you know where to find me,I'm also on Skype I ya fancy a chat!

Night night

Sinéad xxx :)