Showered upon and over you in buckets full,
you are surrounded by prayer that this will sort out
that all will be well
and that all manner of things, and hardships, and pains, and anger
will ultimately be overcome
AND that caregivers who instead of "doing first no harm" inflict it,
be taken to task by those who are meant to keep humanity safe
from poor practices.
Prayin,
Mark56

I'm so sorry to hear you're going through all this. Even with having two SCS's, I still have to go in for a double cervical fusion so can understand your frustration at things continuing to go on and on. We hope that we will finally come to the end of the road with our pain/suffering and when it doesn't happen it can be hard to deal with. And when your dr. says there's nothing more that can be done...well, I can only imagine the hopelessness you may be feeling. Please know that we are all praying for you!

I'd like to pass on a suggestion, if I may, in case you have to forego any more surgical intervention and simply rely on pain medication for pain management. Several years ago my PCP told me she could no longer be my dr. because I was too complicated of a patient for her (I have other medical issues other than spine problems). I searched and searched for a dr. who would accept me as a new patient to no avail. Too complicated, they all said. I finally came across a dr. (I know it was the Lord's intervention) who is actually a hospice dr. He is now my PCP. Although he works with hospice, he is great for me because he is compassionate (would have to be to work in hospice), but is also very educated on helping patients deal with pain issues and does not downplay one's pain but tries to find adequate pain relief. In fact, he'll be overseeing my pain mgmt. needs after this upcoming cervical fusion.

All that to say this, you may find help with pain mgmt. if you can link up with a hospice dr. that would be willing to work with you. My hospice dr. also sees non-hospice patients so maybe you could find a hospice dr. that also sees non-hospice patients. Would be worth looking into and if found, could offer much needed help for good pain mgmt.

God bless you and keep you

K. S. Fry
17 Nether Way
Darley Dale
Matlock
Derbyshire
DE4 2TS

April 12th 2013
Mr. Yiannis
Consultant Neurosurgeon
Sheffield Hallamshire Hospital
Glossop Road
SHEFFIELD
South Yorkshire

Dear Mr. Yiannis,

The reason I am writing to you is because I feel let down by the National Health Service and the treatment I have received at The Hallamshire Hospital.

I have to admit that when you asked me if I had any questions when I saw you last month, I indeed couldn't think of any. In fact, I think the term gob smacked, was what I was feeling.

I had recently spoken to Rob Atcheson who had mentioned the Dorsal Ganglion Stimulator, whose lead seemed seated nearer to the very lower part of my back, which led me therefore, to assume that this would not interfere with my lumbar region that had been operated on before and subsequently, this would have no need to be re-opened.

So I was a tad surprised to learn that this wasn't an option. Could you please explain why?

Could you please also explain why there is nothing available in the newer procedures being tried out that would be suitable for me?

Going back last year to February (I think) when I had the paddle lead inserted and when Donna switched it on, it was indeed giving stimulation not only down the correct leg, but after a tweak the following morning, was giving me the best pain distraction that I could ever have hoped for.

When I came home and had my stitches out .. and even before then, the wound was sore. Sorer than previous operations.

When I was admitted to Hospital a week or so after being discharged with paralysis in both legs for 20 minutes at a time, I initially assumed it was a spasm ... but this happened twice and the second time I called the Doctor who told me to go to Hospital at once.

I arrived by ambulance and had an x ray which showed the battery had moved a little, but not enough to cause problems and it was assumed that this was just the nerves settling down.

At that time I asked the Trainee Neurosurgeon at the time to please look at my back as it was hot, and very sore.

This was what the incision looked like .. and as you can see, each dot is a bubble of puss.

He replied that it was healing fine.

What haunts me is: If I had been kept in at that point and put straight on PIC Line anti biotics, would the infection have spread to the inside?

The Neurosurgeon at the time seemed to think this looked FINE ... I beg to differ and wish I had asked for a second opinion as this might have cost me my hopes for the paddle lead.
You asked when I saw you, if there was anything else the Pain Clinic could offer me? I don't know ... is there? Are there injections that completely numb you from the waist down for a time to allow for a respite in pain; there should be? I know many a person who would so very much appreciate this.

Your advice would be appreciated.

Your sincerely,

Karen
Hospital Number TH7066

c.c. Dr. I. Bendefy, Mr. R. Atcheson, Mr. J. Rowe




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


There you go folks, I've got it off my chest ... and I h ave c.c.'d those I think are appropriate in my treatment. I will let you know what goes down.

I've been keeping as low as I can on the morphine but boy have I needed it these last few days.

We have had a new kitchen, well we are in the middle of having a new kitchen, flooring, tiling done, and everything has been a mess. I have MADE myself close my eyes to the mess - I'm a bit of a cleaning freak.

It's all looking good and I am really looking forward to out finishing it all off probably next week sometime.

It's been hard these last few days as I have had to make a real effort to get out of bed and even though I'm not doing anything, it's hard enough getting dressed and I do need sleeps in the afternoon. So I am more than ready for a lie in tomorrow.

I am smiling ... we are promised sunshine. I have a new camera and I can upload my picsc straight to e mail, so if anyone wants me to e mail them pictures of where I live, please PM me your e mail address and I will do so. You can live my life through my eyes ...

Smiles and happy days ... summer is on it's way .. and it's nearly only 11 weeks till we go on holidays.

As far as your asking in your nicely worded letter if there were "injections that completely numb you from the waist down for a time to allow for a respite in pain", I wanted to pass on that I had temporary relief when I was given a nerve block of anesthesia. It was part of the process in seeing if they are targeting the right problem nerve when I go in for my upcoming cervical fusions. I experienced nice pain relief for approx. one week. Maybe if they know the nerve(s) that are causing your pain, if that is indeed the cause, you get get some nerve blocks with anesthesia? I know that they often add in a steroid with the anesthesia when they do regular nerve blocks.

I don't know if that would be an option for you. Just wanted to mention it in case it could offer you some relief, although it is temporary.

I am so so sorry to hear this! Many many virtual hugs to you!!!

I have been following your posts. I am so sorry you have had to go through all that, only to be told they cannot do more. Personally I don't believe that. Your letter was wonderful to the doctors involved in your care. I hope they will offer a re-evaluation, and can direct you to someone with the knowledge to help you.
I am wondering if you couldn't have an epidural, that is the kind they use for women in childbirth, that numbs from the waste down. I mention this as I had a friend with cancer of the bone. She was given a continous drip, and she had a great quality of life with no pain. There are also Ketamine infusions, which I have not heard you mention. This has been used in the states with good results, especially used in the military for injured vets.
Can you seek treatment in another location in your country? If this facility has written you off, I hope that you can still go forward in trying to find help.
You are very brave. I wish you all the best in your life. ginnie

Your address and all..... I am glad you feel good to have this off of your spirit and cast out there to the folks who think of themselves as professional. It is just, well, kinda unusual for one to be so very open about their very location.

I hope the letter opens windows, doors.... something, and I hope no one takes ill advantage of your data being out there.

Blessings and hugs,

I am going to book an appointment with my doctor. The o ly thing is, she is so popular you have to ring on the day as she is booked up till May but she does release some emergency appointments some mornings.

I sent her a copy of the letter as you know, so she and I can discuss where we go from here.

Xx

It's funny isn't it .. how, when you are needing someone, someone or something, steps into your life - for a reason.

I'd been to see the Doctor today. She told me that there was nothing else she could really give me and is writing to the Chronic Pain Clinic at Sheffield to ask them now that Dr. Atcheson (my previous specialist) has now left, to ask for someone to see me.

I read this letter on her computer and asked if she would run a copy of for me.

Basically, when I last saw my surgeon and he said that there was no operation he would give me and therefore there is little they can do at this point. This is the letter my Surgeon wrote to Mr. Atcheson, my Pain Specialist and anaesthetist. He is the one responsible for placing the leads in my spine.

Dear Rob,

I reviewed this lady in the clinic today who we have discussed on several occasions in previous MDT meetings. Unfortunately due to the epidural scar tissue she would no longer be a candidate for insertion of a dorsal column stimulator, whether lead or paddle, and as matters stand currently there are no other surgical options that would be appropriate for her. We have discussed other technologies such as dorsal root ganglion stimulation, but for the reasons we discussed pertaining to events from her previous admissions, I would not consider a candidate of this particularly as it is a completely new and untried technology in our hands.

Her operative would have healed well and as there is little further that I can do at this point in time I have discharged her from my follow up care. I wish her all the best.

Yours sincerely,

John Yiannis
Consultant Neurosurgeon

I was crying as I came our of the doctor's room, and there stood an old friend who opened his arms and held my whilst I cried buckets in the full surgery waiting room.

I felt his love and it soothed me ...

Derek, thank you .. wherever you are now.