Wednesday 30 June 2010

On Tuesday the 29Th June we went up to The Royal London for my post op check (5 wks 1 day since op) Christopher Green tried to programme my SCS so that it may help with my lower back pain but to no avail! My lower back pain is still as bad as before!
I knew that this wouldn't work but it was worth a try anyway! He did give me a better programme that goes down both legs which is a good sensation! I still have been walking with two sticks as the SCS makes me unstable.

I told him about the bad lead pain that I am getting and he said that it will take up to a year for things to settle as they have to push the wires from the spinal cord up down and around and into my tummy (the best way to described it is: like pushing a skewer through the incision and around) so no wonder I am in agony with it!! (sorry if it is a bit graphic)

We asked "what would happen if I lost my remote" basically I have got to guard it with my life as they will not give me another if I lose this one. So Hubby is going to insure it today! They cost a whopping £700. I am going to buy a white permanent marker and write my name and number on it just in case. We were thinking of buying a back up one but then that would have to be programmed in. I also have to buy my own charging pads which aren't too badly priced!
I will be able to drive if I want to but I am not allowed to have my stimulator on incase I have a surge and I have an accident.

Wednesday 23 June 2010

Medication

I am still taking all of my meds: Tramadol slow release, Amitryptlene, Diazepam, Bisacodyl, Paracetamol, Nitrofurantoin, Nexium and the lovely Lactulose but hopefully my Doctor will be able to reduce one or two of them in the near future.

Re-charging the SCS

I am at present recharging my SCS. you are given some self adhesive pads which you place on the battery (which you take off of the mains charger) you stick one onto the back of the battery then peel off the backing and Aline it to the SCS in your tummy! I do it when I am watching the television. You are given a special belt so you can charge it while on the move but I haven't done that yet.

4 weeks after scs implant

It has been four weeks two days since I had my spinal cord stimulator fitted.
This morning when I woke my lead pain in my back was unbearable (surely it should have started to subside now)
My Sciatica has come back a tiny bit but I can control that and nerve pain is being controlled really well!
I go to see my consultant next week and hopefully they can shed some light on the pain I am experiencing as it is getting me down quite a lot!
I have been wearing a soft bra for two days now with just a little discomfort which is good!

Tuesday 8 June 2010

my scars!

Lead wire scars
SCS Scar in my belly




Lead implant site
which run down my left side by my ribs (which you can feel from the outside) really weird!
and they run around my side into my SCS implant in my belly.


2 weeks since SCS inserted!

I cannot believe that it has been two weeks since I had the SCS put internally!
My Hubby took me to see my Doctor today She was so impressed with my Spinal Cord Stimulator!
Unfortunately she is leaving our practice which is a shame! we brought her a gift and a card, she has been my Dr for 12yrs ever since I hurt my back and has been such a support and got my appts to see the Neurosurgeon ect so I have so much to thank her for.
The outcome has been good because if it wasnt for her I would still have Sciatica and nerve pain!
So a "BIG THANK YOU TO DR G"

11 days after permanent SCS

Tried to wear my front fastening bra today wrong move! very very painful will try again soon!
still feeling very tender and sore around SCS site (belly) and where the wires were inserted in my back and around to the SCS!

Have been resting so much and still trying to get to grips with the remote controller!

Need to use both of my sticks as the SCS makes my balance a bit off and I feel wobbly!

Weds 2nd June 1wk 2days after permanent SCS

A Nurse came to take off my dressings today, they came off well and I could see my scars for the 1st time! pretty neat job and I am allowed to have a shower!!

Steve took me out to a coffee shop and the weather was lovely so we sat out in the sun! (a bit too hot wearing surgical stockings though)

I am still unable to wear tight clothing and cannot wear a bra as it rubs on my scars!

Felt pretty tired after today so early to bed!

3rd Day after permanent SCS

My word did I ache on waking this morning and my hair looked like "Jedward"!
Steve gave me a strip wash and washed my hair and dried it (boy did that feel good)
Dr Menon came out to visit today which was nice of him!

Monday 7 June 2010

Tuesday 25th May 2010 going home

Going home: Hubby was worried about me coming out of hospital as I was still in so much pain!
I call the new pain "new pain" which sounds silly but my new pain is where they have inserted the electrodes the wires and the SCS and of course all of the pain where I have been pushed and pulled about!
My "old pain" is from my backpain and groin pain that I knew that I would still have because they could only ease the nerve pain!

The Sister on the ward came around with the Dr and I was told that I was ok to be discharged but I did say to her that I wouldnt be able to go home by car so they arranged for me to go home by Ambulance.

My Hubby and my Mum came up to collect my things and my Mum was allowed to come with me in the Ambulance! The ambulance men (Joe and Steve) were so lovely and very helpful.
I had had a dose of Morphine to help me on the journey, which was good because it wasnt a very smooth journey! I felt a little sick a couple of times but Joe was on hand with what he called a "party hat" A sick bowl to you and me!!!! but luckily I didnt use it.

Thank goodness for Morphine!! Mon 24th cont

I knew that I was going to suffer quite alot of pain afterwards, but really it hasn't bothered me that much because I am just so pleased not to have that awful Sciatica and nerve pain! Plus I kept thinking to myself that my Dad would have been so very pleased that this has worked and I think that he would have said that I was very brave to go through all that I have been through!! Not only that, my wonderful Hubby wont have to keep rubbing my legs, feet and my back now!! So lots of positives

The Big Day implant put inside monday 24th May 10

Was awoken about 6am this morning! Mr Ellamushi came in on his day off to perform my operation for my Permanant Implant. He asked how I was feeling I said that "it felt as though a horse had stamped on my back" but apart from that I was looking forward to having the implant put in!

I did ask him if I could have the implant put in my tummy rather than my buttock and he said that as long as the leads are long enough that will be possible!

I went down for my operation at 9am and was down for approx 2-3 hours.

Again when I came around back in the ward the "Boston Scientific Man" was there ready to programme me in!! I am now officially "The Bionic Woman" He added another programme so I have 4 altogether now!

The Stimulator is implanted in my tummy and I have a Hand held remote, a battery charger and battery with a belt or I can use sticky pads so I can charge it when mobile!

my room

This was the room that they gave me, when I had my SCS put inside me. Afterwards I was moved to a bay with three other,
Patients so that they could keep a close eye on me!

I must Thank all of the Nurses and Doctors that I was under while I was in Hospital as they were outstanding (Special thanks goes to Mr Ellamushi and nurses: Janet, Aunty Rosie and also to the OT Nicky.








After the Trial Operation

The Trial Stimulator (which wasnt implanted but put in the holder that is around my neck) (see photo) The wires were running from the top of my left shoulderblade around to the trial stimulator box!
The trial stimulator that is in my left hand is grey and blue!
The one that is implanted inside my tummy is the one on the start of my Blog page (on the lower righthand corner)
When I came back to the ward I felt as if I had been kicked by a horse I was in agony! luckily they gave me Morphine to ease the pain and I had all of my normal medication as well!
Every way that I turned I was in agony, luckily I had a bed that was electric and had buttons that you could push to move your legs,upper body higher or lower!
I managed to get out of bed with help (but a struggle) and use the commode.

























Trial Procedure Friday 21st May 2010


We left for London at 5am and arrived at the Royal London Neuro Wing (AW4) at 6.30am.
(Oh I forgot I did attend a Pre-admission clinic the week before for blood tests, weight, heart ECG, and MRSA swabs too and saw a nurse and a Dr!

Mr Ellamushi (Brain Surgeon, SCS Neurosurgeon) came to see me and talk to me about my 2 procedures and also to get my consent signature. He explained that they will put in the electrodes and position them either side of my spine then a trial Stimulator will be positioned outside of my body then if the trial works (after approx 3days) then a permanent one will be inserted in my tummy.

I went down to the Theatre at 4pm ( a long wait as they had two emergencies come in) and the op took 4 Hours. When I went back to the ward after recovery my hubby was there and 2 people from Boston Scientific who were there to "programme me in" It sounds really weird, they said to me "we are going to start programming when you feel something please let us know" I was still quite drowsy and had an oxygen mask on but managed to tell them what I was feeling!

I just couldn't believe what I was feeling It was working! I was speechless and amazed and words failed me I had tears in my eyes because after 12 years of sciatica and pain it had gone and I was left with a lovely comfortable tingling sensation! They programmed 3 settings into the hand held remote control so that if I wanted to raise or reduce sensation I could do so!

Christmas 2009


My Dad was so pleased to know that I was going to have the procedure done and that I hopefully would be a little pain free! I had nothing to lose by trying this (after 12yrs of pain)
Dad was getting so poorly so they admitted him into Hospital on 16 December to have a "Stent" put in he was in agony bless him!
After a while he started to eat a little (not a lot really) but he did pick up and was sent home on Christmas Eve.
Christmas Day was nice we had mum and Dad down,our two boys and my brother for dinner and Dad managed to eat some Christmas Dinner which was good, although he was very tired and weak!
Boxing Day came and Dad was very poorly unfortunately Dad passed away the day after Boxing Day with Mum, Hubby and Me by his side (which was what he would have wanted)
The rest was just a blur really as we had lots to organise (I was given two dates for the SCS but said about our loss and they were so very understanding) Dads Funeral was on the 12th of January 2010.

2009 My Drs surgery appt and holiday & my Dad

In early 2009 I went to my Doctor just for a review of my medications and an overhaul!! my Sciatica was completely unbearable and to be quite honest I was very very down and depressed! For everyone who knows me I put on a smile but deep down inside I was a different me!!
My Sciatica had started to go down my right leg and into my knee, shin, foot and toes. My Dr referred me to my local hospital to have an MRI with Contrast Dye and it came very quickly (just before we were due to go on our holiday) The staff there were amazing and put me at ease! (Its funny I was nervous although I have had many previous procedures done)

We had a wonderful holiday in Florida although I really do suffer with the flights, journeys etc I have adapted to make myself as comfortable as possible examples : small Hot water bottle for my lower back (which the flight attendants don't mind filling) plenty of relaxing music, water, medications, cushions, pillows, vitamin C tablets, flight stockings and I make sure that I do exercises and move up and around as much as possible!
Also my Dr wrote a letter to say that I needed extra leg room, which is best so that hubby can rub my back gently for me when I stand!

Unfortunately when we arrived back from holiday we had a phone call from Mum she told us that Dad had had his results back from our hospital to say that my Dad had Cancer of the Oesophagus (we knew that he was suffering from indigestion and was having tests Dad was never ill) we just couldn't believe it!
We took Dad to his Appts in Canterbury and to the WHH and our Doctors where they said that the Tumour had grown outside of the Oesophagus and that they could only treat him with one week of strong Radiotherapy.
Our friends took Dad and Mum to Canterbury everyday for the week as I wasn't able to (which was so nice of them) Dad didn't like putting people out
Dad was finding it increasingly hard to eat and was really only able to eat soups and soft things. His weight was dropping off of him and it was so awful to see him losing so much weight!
The Radiotherapy didn't work and when we took him for his appt on the 6th October 2009 they only gave him 6 months to live!
On the 1st of Dec 09 I went for my SCS appt and we found out that I was a good candidate for the procedure! (part of me wanted the SCS but I couldn't really think about it as my mind was on my Dad constantly)

Getting a motorbility car!!

I applied for a Motorbility car (you can only have them if you have recieved DLA for 3yrs) We were so excited and finally recieved our brand new car! it was automatic and manual. My Husband really enjoyed driving it and it meant that we could get out and about. It had a low boot so Hubby was able to lift my wheelchair in and out easier!
Having a motorbility car is good as you pay a weekly amount but get your Insurance, MOT, and if anything needs replacing ( tyres, windscreen ect) it is all taken care of and the place where you got the car from will give you a courtesy car if available.
We are on our third one now!

Sunday 6 June 2010

Adaptations to our home 2001

We applied for a grant so that our house could become disabled friendly, our local council agreed to the grant and after quite a long period of me sleeping in a single bed downstairs they fitted a through floor lift into our bedroom from the living room it took 2 days but it is fantastic! and Spud really enjoyed showing people and demonstrating how it worked!

A different company came on a different occasion to adapt our bathroom (which is downstairs)
they raised the toilet seat, put in a smaller bath and built a walk in shower with a front opening low door and curtain at the top so hubby could reach in to wash me! (pictures to follow) not of me naked though!

2nd operation revisional S1 root decompression operation

After having numerous treatments none of which were working I was referred to Mr Gullan (a Neurosurgeon) who performed a Decompression operation which took approx 4hrs maybe more!
I was sent home after a week hardly able to walk and in lots of pain, relying on 2 crutches.
Medication that I was on were: Diclofenac, Amitriptyline 150mg at night, Dihydrocodeine, Bisocodyl, Lactulose, and fibrogel (lovely stuff)not!!!

The surgeon did tell me that there was so much scar tissue from my previous op that he couldnt do any more for me and that he tried to take away some of the scar tissue around the nerves but it was like a telephone wire all clogged and sticky! so I had nerve damage, a ruptured disc which causes me to have Sciatica and nerve pain in my left foot!

Chronic Pain Managment

After having my Discectomy instead of making things easier pain wise nothing changed and in fact made things worse! I couldnt sit for long periods of time,I used to lay down and from when my Disc prolapsed I couldnt lay on my left side and always had to have a pillow between my legs and pillows behind my back to support it! And even after twelve years I still had to sleep in this position!
I was so horrible to live with and I would just snap at everyone shout, cry, just miserable! not fair on anyone.
My Dad used to come down by bike to take my youngest to school (spud used to enjoy his rides morning and afternoon) Dad never drove so he made a special seat for him to sit on his bike!
Mum used to come down and help out. Hubby was and still is so supportive!

I was given an appt to see the local Pain Management team who listened to everything we had to say and were very helpful.
I even thought to myself that it was all in my mind and that I didnt have a bad back (apparently thats what people think)
We talked about the feelings that I felt and it is actually like when you lose someone, you go through a process of :Anger, Sadness, Grief, Depression, Hurt, Selfishness, Selflessness, all of these feelings they are so weird! But as time goes on these feelings do ease as I have learnt that life isnt just about me its about the whole family because it effects everyone!
No-one likes to see people in pain and if you wallow in self pity it doesnt help!

Meds

I was discharged from hospital Tabs: Dihydrocodeine, Amitriptyline,Diclofenac and Lactulose!

December 98 ct scan

I went under the help of Mr Lock. Early December 98 I had a CT Scan which showed that I had a lateral Disc prolapse region: L5 S1.
I went into Hospital and had a "caudal epidural injection" but this didnt have any effect on my back or pain!
I went to Physiotherapy at the Hospital but still suffered a great deal of pain and couldnt sit down for long periods of time!
I had Hydrotherapy, Accupuncture both didnt help.
In May of 1999 I went into hospital to have a discectomy which went ok!

Final straw 1998

On the ninth of October 1998 I lifted up my little Nephew he was only a toddler then I felt a little pain in my lower back but didnt think much of this and carried on as normal. I drove my car Picked up my mum and went food shopping.
On returning home I lifted the shopping from the boot of the car and on doing so felt an awful pain shoot from my lower back and down my left leg!
I managed to get indoors and get down onto the floor but I just couldnt move an inch! Every little movement even breathing really hurt!
My Husband phoned for my Doctor and luckily she came out on a home visit (I was her first patient as she had only just started working for the practice) She prescribed strong painkillers and said to rest up and only get up to use the toilet if possible Dr G came to visit me all the time and was very supportive!
I laid on the floor for approx 9weeks (which was really far too long) I was so depressed and was constantly crying, this affected me mentally and physically especially when I had to rely on other people to do so much for me! and because of not being mobile I was so constipated and to sit on the toilet for so long too didnt help one bit!

Back to work yet again Jan 1993

After having time off of work I went back and at this time I had been made a "Line Leader" in charge of upto 10 woman on production. Lifting was still involved,although we had training on how to lift boxes ect the damage to my lower back was still weak and I had two more episodes where I had trouble sitting,walking, standing for long periods of time so more time off of work! with very little money coming in and really only my husbands money could be relied on.
I fell pregnant and had a good pregnancy and went to full term. I am sure that the Epidural injections didnt help my back in the slightest!
Stu (my eldest) was such a lovely boy and was quite helpful especially bathtimes with his little brother ( we call my youngest Spud because when he was toddling he decided to tip out and play with a sack of Spuds hence Spud)
As Spud got older I went back to work part time again. We had a nurse at work who was obviously for first aid but my back went yet again, the company didnt like the fact that I was having so much time off of work (believe me it wasnt through choice) So again back to work, still in agony, made to lift heavy weights yet again!

Problems yet again!!

I continued to work part time at the same firm, while working there my first marriage was breaking down, I was bringing up my son, housekeeping and working with hardly any support from my husband, we finally split in 1990 and sold the house and I moved in with my very supportive parents with my son.

I was so happy and started to live my life again going to nightclubs with my friends, going to keepfit!
Then I met my wonderful Husband in a nightclub and fell in love straight away! Everything happened so quickly- we met, went on holiday, got engaged,brought a house, I passed my driving test and I fell pregnant! We got married (only a small registry office) but that was what we wanted! Then one evening after getting out of the shower I slipped on the kitchen floor and landed right on my cocyx causing excruitiating pain!
CHRISTMAS EVE 1992. I ended up at our hospital and had had a miscarriage!

My Backpain!

My Back problem started when I was in my late teens.
In 1983 I worked at a makeup factory as a lipstick moulder (making lipsticks) which included the job of lifting heavy trays of lipsticks after I had moulded them. I found that I frequently had periods of low backpain which did ease with laying on a flat surface (either hard floor or firm settee) It became increasingly difficult to get up after laying down and I had to roll onto my right side then struggle to stand!
After having my first Son in 1987 the Backpain would return frequently due to lifting him,bathing him ect. I returned to work in the evenings Where again heavy lifting was involved!

The pain was in my Lumber region "L5 S1" My Doctor prescribed medicines to ease the pain and I was told not to lift anything heavy and to return to my job but only do light duties! On returning to work they put me onto jobs that required lifting so I had to do it (I did complain) but they still made me do them! I was in tears with the pain and the Company I felt didnt believe me about my Backpain!