Six years since having SCS inserted!

Well where have those six years gone!! Apologies for not adding to my blog! I am managing ok still using my SCS. charging lately has been a bit hit and miss as apparently the charging box in your tummy can shift making it a little hard to place the charger in the right position outside, meaning that I sometimes have to charge it for a while then do it again sometime later until it is fully charged. I Also noticed that it gets quite hot against my belly for some reason, this is why your not meant to charge up in bed.
As I have mentioned before the stimulator only works for my nerve pain and sciatica going down into my legs and not for my lower back spinal stenosis. I have failed back surgery syndrome and have been in chronic pain now for eighteen years.
At present I still take lots of medication: Tramadol SR. 50mg twice a day, paracetamol and now have been prescribed nortryptlene two at night for sleep and to help with constant migraines, they seem to be helping with the migraines and I don't get a dry mouth with these like I did with Amitryptline 150mg!
I have good days and bad days and am looking into fibromyalgia as I have many symptoms of this chronic condition,apparently it is very hard to diagnose.
I have been on a chronic pain management course which I found very helpful as they cover an awful lot of aspects on the course.
I also go to tai chi once a week when able which helps me relax and put into practice breathing.

I have joined a local chronic pain group which is run by a lovely lady and her mum who also suffer chronic pain, I have met some truly amazing people there once every month when able to go.
Would love to hear from people who have similar conditions or if they need help or advice, I am not medically trained and can only really advise and speak about my own experiences but would like to help people. As someone wrote I haven't put down my email address so here it is for anyone who wishes to contact me : suesanfan@yahoo.com
Thank you Sue. X

keeping your hand control away from water!!!!

A few weeks ago when going to the bathroom I managed to ruin my hand controller by getting it wet. Luckily we had it insured.
When it got damaged I wasnt able to turn the stimulator up or down, on or off so spent two nights propped up in bed and I couldnt sleep properly as when you lay down the stimulation gets really strong and intense.
The company who had fitted my SCS sent out a new one as soon as possible and were amazing, so too were my insurance company so a big big thank you to them!
I now leave my controller somewhere safe.

Physio

I still haven't brought myself to phone my Physiotherapist but the prospect of being pushed and pulled around just doesn't appeal to me at the moment, maybe I am afraid of what he will do! Will he help my muscles from being so tensed up?

I havent been able to lay on my left side for over fourteen years, it has just been too painful because of the nerve damage! I always lay on my right side and have a pillow between my legs we have a very good bed and good sprung mattress. If someone reads this maybe they could help with my questions I really dont know what to do!

plodding along!

I really hope that the weather will start to get nicer as the cold doesn't help my pain in the least!
I wrote to a lady on the backcare forum the other day and this is what I wrote: This are going on OK, I am still in a lot of pain with my lower back and still taking all of my meds.
I have been suffering with torn ligaments in my shoulder blade over Christmas ( not to do with my back at all) I don't know how this happened) My Dr gave me some cream to rub on the area.

Unfortunately a while back I was admitted to my hospital as I had a really bad Migraine and the Consultant said that it may have had something to do with my SCS, So I am a little worried that I may get these attacks regularly.
I will be having My Yearly check soon so I hope that they will be able to adjust my SCS a little bit better for me. I tend to keep it still on 24/7 normally on the same setting all of the time!

I still find it quite hard to cope with the fact that I have Failed Back Surgery syndrome and obviously I cannot do the things that I use to do, But I make the most of what I do have and try to take my mind off of my pain by card making and my Husband makes me laugh, we have fun and what I mustn't forget is my family suffer also, so I try to be jolly for them really!

New Year 2011

Just recieved my Pain Concern Magazine and it has a page on " Blogging" Which is brilliant as I want my blog to help people and tell them of my Journey, my experiences and hopefully they can contact me with questions and I will try to help as much as I can!

New friend

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

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!

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!

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.

Thursday 1st July 2010: 5 weeks 3 days since Spinal Cord Stimulator Implant.
Woke so early this morning in so much pain ( lead pain) driving me bananas took my usual medication plus a Diazepam trouble is I dont want to keep relying on the Diazepam as they are addictive!

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.

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!

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!

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.