My Mum went into WHH with a suspected blood clot and my Hubby took me up to visit. While we were in there mum said that a lady was due to have an SCS put in in Nov so I went and talked to her about mine. I was so pleased that I could talk to her about the operations,the implant and about my experience with her!
It is so nice to help someone and as I didnt have anyone to really talk to about my implant. I am glad to have put her mind at rest. Although there are risks with every operation and this is the last resort hopefully it will give Debbie even a little pain relief will be better than what she has suffered like me for so long! I wish her all the luck in the world. xxx
Sunday, 10 October 2010
Where has the time gone!
I cannot believe that it is October already where has the time gone? 12th year this yr!
I was meant to give my physio therapist a ring after my follow up, but I still havent done so (as so many things have been going on) I must do it soon and hopefully he will be able to give me some exercises to strengthen my left foot, leg and lower back! or to help me to move a little easier than I am now. I am just a little worried about him touching my left side ect as I am still very tender.
My feet are still always cold due to the nerve damage which is a nuisance! oh the joys of "Failed Back Surgery Syndrome!
I was meant to give my physio therapist a ring after my follow up, but I still havent done so (as so many things have been going on) I must do it soon and hopefully he will be able to give me some exercises to strengthen my left foot, leg and lower back! or to help me to move a little easier than I am now. I am just a little worried about him touching my left side ect as I am still very tender.
My feet are still always cold due to the nerve damage which is a nuisance! oh the joys of "Failed Back Surgery Syndrome!
Monday, 23 August 2010
Lead pain still
Still unable to wear wired bras as the lead pain is still there and I dont like the pain, Didnt realize that I would still get it (got rid of one pain and then get another!!!) The surgeon did describe it as "its like pushing a skewer through chicken" very graphic but I thought that I should be honest on here!
Saturday, 21 August 2010
Three months since SCS implant
It has now been 3 months since I had my SCS put in I am managing it quite well now, I am in control of my Sciatica and the programmes really work well! (not on my lower back pain though)
I went to my Nephews wedding just over a week ago and my hubby brought me a lovely backless dress to wear, it made me feel really good but I had to wear a strapless bra which was very tight and as I have only been able to wear a light support bra without wires, unfortunately I am still suffering quite badly after the bra dug into the lead area and im in agony as a result!
I didnt realize that I would suffer lead pain but the consultant did say that it could take a long time to heal as they had to push the wires in and then around to the front of my belly.
I went to my Nephews wedding just over a week ago and my hubby brought me a lovely backless dress to wear, it made me feel really good but I had to wear a strapless bra which was very tight and as I have only been able to wear a light support bra without wires, unfortunately I am still suffering quite badly after the bra dug into the lead area and im in agony as a result!
I didnt realize that I would suffer lead pain but the consultant did say that it could take a long time to heal as they had to push the wires in and then around to the front of my belly.
Thursday, 1 July 2010
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.
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!
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 sitewhich 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"
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!
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!
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!
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.
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!
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.
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!
(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!
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