When is it OK to give up?

[Doc79316]

HI Farrah,

I will read you thread, all of it. I am interested in the SCS tyou've had. I have been offered it but have heard nothing positive about it from the 2 people I know personally wo have had it. You're only the third person I know now who has had this done.

What happened during the proceudre? Howlng were you in hospital? Is it beneficial? When you have the time, I'd appreciate it if you could tell me more about it. I don't fancy the 5" slice in my back though!

Take care,

Laura xx

[Clarkey]

HI Nick,

I think if your appt was going to arrive within th 4 weeks it would have by then. it may be worth a phone call to the appointments manager to see if you ahve an appointment. After all, your PT can't see whether your appointment is pending or not and he'll only know about it when you tell him about it yourself.

Sometimes these appointments can take longer if they're considered an in-house referral. Makes ure first that this isn't the case with you otherwise you could end up waiting a whole lot longer than a month.

Hi Laura,

Thanks for the reply the information you given has been very useful, today I arrived back from work and still not recieved a letter from the ROH. I hope it still comes tomorrow morning and if it still not come by Monday will phone up the PT at the ROH Alexander who dealing with my knee issues. Paul the other PT said to phone him up but will phone up Alexander to ask him if he got the refferal from Paul. If he has not got the refferal from Paul will ask Alexander to ring up Paul to re fax the refferal.

I had to wait over 3 months for my 1st PT appointment only to find out that they never got the refferal letter from my GP. So can understand why I am little concerned about not receaving a letter yet. 

I would say my knee problems are no where near as bad as other Members as I can work on the Golf Course ok. I limited in how fast I can walk and cant since October 2007. The pain is ok most of the time but when the pain does come can be intense pain, sometimes the pain goes from the knee up to my hip as if its a trapped nerve.

I found the posting that Sheila had to lock because of a certain Members where moaning about the thread saying its not knee related. I think its good to have a laugh with other Members online as it makes you forget your knee problems for a while.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=39732.120

Nick {2008}

[arkitect06]

Hi Laura, the SCS procedures were more difficult than I thought they would be for sure.  It is definitely a major surgery!!  I have had a great success with it.  My husband has heard lots of great things from people he knows with them too...no bad things heard by us. 

You will start with a spinal cord stimulator trial.  I was in a surgery center for several hours and then went home.  They started an IV and then I waited for the Medtronic rep to get there and explain the procedure to me.  She was in the OR the entire time helping the doctor get the wire in the right place and get good coverage over my RSD leg.  They first put me to sleep, then woke me up in the OR where I had to answer questions of where the tingling was.  The made a few adjustments throughout the procedure and it took 3 hrs.  I was then taken to the recovery area where I played with my new machine.  In the trial, they stick a wire in your spine in the same place they may want to do the permanent implant.  This wire is connected to an external generator that is bandaged to your back in the same place they will want to implant it.  Then a wire comes from this device to a controller to control the pulse width and the rate of which you feel tingling.  The tingling changes when you change positions, so it's important to be able to control it and change it.  Normally a trial is used for a minimum of 3 days to see how well it works.  I had some insurance issues, so only had it in on Tuesday (day of the procedure) through Thursday (day of the implant).  My insurance deductible was about to change and would owe another $3000 before I get full coverage.  So my PS worked with me on getting the procedure in before that happened. 

Thursday was the implant procedure.  My doctor had a family emergency, so they scheduled me with one of the other ones that I knew.  I arrived and they started an IV and began the antibiotics through it.  It went through very quickly.  My husband was with me during this part this time since it was surgery day.  At one point my bed was totally surrounded with nurses, doctors, and technicians talking to me about the procedure, my pain relief, etc.  They all really really cared.  This was in the surgery center again.  So they wheeled me towards the OR where one of the nurses put one of those stupid hair hats on my head.  The doctor and the Medtronic rep were both there to discuss the best route to begin the procedure without moving the wire and having to reposition it.  So I knew what was going to happen right when I got in there.  They took off all my bandages, took an x-ray of the placement of the wire, and then took all the trial stuff out.  They then put me to sleep to implant everything.  I chose to get the generator implanted just over my left hip.  I didn't want it on my right side since that is my bad back side.  I also didn't want it in my butt since they said it can be more visible and easier to feel there.  I basically had 4 choices in where to put it....OH, and in the pre op area, I chose between two devices to get implanted.  One was smaller, but had to be recharged every 4 days.  The other was larger and only needed charging every 2-3 weeks depending on how often you use it.  So I chose the larger one since I would feel the thing no matter what size it was.  Back to the OR, after implanted the wire, they woke me up and turned me on to make sure that I felt the tingling in the same place.  I did, so they put me back to sleep.  I woke up in the recovery room with 5" worth of staples and a huge bandage covering my entire low back.  I also had tons of post op back pain and soreness from Tuesday's procedure on top of that day's surgery!  The stimulator wasn't turned on, so the nurses were yelling for the Med Rep to turn it on so I could get some pain relief.  The nurses didn't want to keep giving me drugs.  Once she turned it on, I began to be able to control my breathing and the pain eased up in my leg.  Unfortunately, my back was still very very sore.  They doubled my morphine SIR breakthrough pain meds for as long as I needed them for PO pain.  I will not lie, the PO pain was horrible, but I am not sure if it was from having the two procedures so close together or if it was normal.  They have told me that the soreness can last 3-4 weeks.  I am definitely still very sore at just over a week out of surgery.  The pain relief in my RSD leg is great though! 

The PS can adjust my stimulator at any time I visit them for a follow up.  I had some issues with the bandages a few times this week, so had to go in twice this week.  Both times, the PA tried to adjust my stimulator b/c the 2nd setting wasn't working very well.  Well yesterday when I was getting my bloody bandage replaced, he wanted to fix me again.  Somehow it turned off and wouldn't go back on and the pain came back hard!  I had to wait for the Medtronic rep to come reset my programs and completely reset all my settings to get pain relief.  It took forever.  I will also tell you that you will not feel tingling only in your leg...you will feel it in your butt, your back, and one other place depending on your position.  They said that goes away after you have had it for a while.  Once everything sets over 6 weeks, problems diminish.  The wire doesn't move anymore and your position will not affect it as much. 

Ever since last week when I got the trial, my attitude has changed completely.  I am happier, less depressed, and in much less leg pain!  I have a long way to go to become healthy again though.  My PO pain and incision stinging needs to go away and i need to get my muscles stronger in my bad leg.  For 6 weeks, I am not allowed to move my upper body much.  No bending, twisting, reaching your arms up or sideways, or anything that can stretch the incision or move the wire.  After 6 weeks, you can go back to normal.  If you don't like the machine, they can easily just pull it out with minimal pain! 

It has been a difficult 1.5 weeks of soreness and PO pain, but well worth it for me.  The trial period is not difficult at all if you wanted to go see your pain doctor (I assume you have one by now) and get that done.  THey insert the wire through a needle and that's it.  The hardest part is making sure you feel tingling in the right places.  You can find more information at www.medtronic.com.  They have tons of explanations on there.  I don't know if that's the company you would have, but they are great if you do. They are so helpful whenever you have any problem.  When I got my stimulator fixed yesterday, he forgot to add control of the rate number.  I used that to adjust my stimulator at bed time.  So today, I e-mailed my Rep at 7:30am to tell her I didn't get any sleep without this number.  I got a call 5 minutes later to see what the problem was and by 9:30am met with one of her partner Reps to add this control to my remote!  So now it's all back to normal!  They really care about your pain relief and the medtronic people are great!  My grandfather several states up from me has a system inside him for a different purpose completely and loves his medtronic person. 

Well I know this is a lot of info, but it's for you and anyone else who may want to learn more about this procedure.  Remember...it's two parts.  First you get the trial, then you get the implant if the trial works out.  The trial is like getting an epidural steroid injection...nothing much at all, but soreness.  I hope you consider this b/c it has definitely given my life back.  I am sorry for those that it doesn't help!!!

If you want more info from me or have more questions, PM me. 

Farrah

[Doc79316]

Hi Nick,

I agree to a certain extent abou thte jokes. It's good to inject a littel humour but at the same time I can see the other side of the coin where Sheila has to moderate constantly, threads that aren't knee related when this is a knee board after all. It's a catch 22 situation unfortunately - just one of those instances whee neither side is ever going to be happy.

Keep on top of those appointments 'cos they'll disappear, not turn up or run away with you if you allow it. Keep callin gyour PT and OS's secretary to find out what's going on.

I don't agree with what you say about your knee problems. They are as bad to you as mine are to me, or someone else's are to them. If you're able to be reasonably mobile then great. If not then generally it's possible to find a different way of doing things. Tempting as it is to give up completely at times, i fyou have a stubborn streak as I do, you can achieve anything (it just may take a while with unorthodox methods that's all!).

Take care,

Laura xx

[arkitect06]

Hi Laura, my husband changed my dressing for me tonight for the first time and I saw my incisions in the mirror.  He took a picture for me and I will be happy to share it via e-mail if you (or anyone) are interested.  The incisions are different than what I thought I felt yesterday.  There is one vertical one 2.5-3" long and one horizontal one the same length.  I also have one incision down below these with some stitches.  There are also some stitches under the vertical incision.  The incisions aren't bleeding as bad as it looked with my bandage...that's good!  Anyway, let me know if you have any questions.  I have also had a radiofrequency lesioning procedure if that has ever been discussed also...it doesn't hurt to try it although it didn't do anything for me....waste of time off and some days of soreness.  Oh well...better than skipping straight to surgery. 

Have a good weekend!

Farrah

[Doc79316]

HI Farrah,

Thank you so much for giving me your info and telling me about the SCS. What puts me off to begin with was the lack of positive examples given by my pain doctor. My Pain Specialist referred me to a different hospital (about an hour away by car if there's no traffic!) because he didn't have the facilities to carry out the testing or procedure himself at the hospital I'm a patient at.

The hospital I was referred to is the regional centre for pain management/pain control. After 2 appointments with them they referred me (mistakenly in my opinion) back to my pain doctor at my usual hospital. He has now discharged me completely and told me that I have to go back to my GP and get another, separate referral (to the same doctor who saw me at the last referral appointment).
This will take approx 12 weeks before I'm even seen and then they go through all the same silly questions again. So Once they decide to put me forward for the SCS which they were prepared to do before (I think an admin error got me sent back to my usual doctor) I woul dhave to weait a couple of months just for the trials - which are a 3 day trial to begin with and a 5 day trial after that, before I get the stimulator.

Now, bear in mind I was diagnosed formally with RSD 2 1/2 years ago and until now hve had no treatment other than trying to control the pain which morphine. Yes, it's fantastic stuuf, but now I am effectively a junkie, addicted to the drugs I now take for pain and haven't been teated for the RSD.

Having said that, I got to the point many times where I would do ANYTHING to get some relief from pain. Even if it wasn't taken away compeltely - just a littel bit of relief would have been welcome.
I am prepared to accept the soreness (no problem) and PO pain (hopefully no problem) but I am a compelte coward generally when it comes to pain. And thethought of someone messing about with my spine terrifies me. So I'm stuck between a rock and a hard place - I will do anything to relieve the pain but am afraid of the procedure itself.

I'd love to see th e picture of your incision - then I knwo what I'll be letting myself in for. I've always been squeamish about having stitches taken out but I suppose if they were in my back and I couldn't see them, it wouldn't matter so much.

Thanks again for sharing.

Laura xx

[Clarkey]

Hi Laura,

Keep on top of those appointments 'cos they'll disappear, not turn up or run away with you if you allow it. Keep callin gyour PT and OS's secretary to find out what's going on.

I was hoping that the letter would arrive in the post this morning but never came so now thinking maybe they not had the refferal fax from Paul. Worse still the letter been lost in the sorting office which sometimes can happen. Not sure if you know I have asperger syndrome and can gey anxietys easily and now starting to worry about not getting an appointment now till the new year, was hoping to get the appointment before Christmas.

I will do as you say keep on top of the appointments and shall ring Alexander on Monday afternoon after I finished work. All I want to know is has he got my refferal from Paul yet and is it possible to be seen before Christmas at the knee triage clinic. I not seeing an OS yet but will be seeing Alexander again and he will then refer me to an OS called Dr Graham Brown he will be giving me a cortisone injection into my inflammed fat pad. Do you know anything about Dr Brown which might be a stupid question as there are so many OS's. Might have heard about him from other people as you live in the west midlands region. I know he be very good at his job and trust him 100%.

You information is reasuring and helful as usual and thank you for spending some time posting back.

Nick {2008}

[Doc79316]

Hi Nick,

Please don't worry. If you call on Monday then at least explain that you've waited long enough and you expect to be seen at the appropriate time as though they have received your referral. It shouldn't be too hard for them to give you an appointment before Christmas.

I've heard of Dr. Brown but I don't know him personally. He is very good apparently. I have a very good friend who runs the Radiology Dept at Solihull Hsopital and she knows almost all the main consultants in and around th emidlands - particularly the cardiology and orthpaedic consultants. She may know him.

Take care,

Laura xx

[arkitect06]

Laura, I am attaching the picture of my back here.  Since we haven't exchanged personal e-mails or anything, I have no other way of showing it to you.  So here it is.  I hope others don't get too grossed out by it. 

I understand being terrified of having a doctor mess around your spinal cord.  I did a lot of research before going through with the procedure.  I also trusted my doctors 100% b/c I knew that they had done it many times.  In fact, they do one every week.  Since I developed RSD, nothing else really scares me so much.  That's just me though...I have a lot of trust in my doctors. 

I can't believe that you have never really been treated for RSD!  That's horrible!  How have you been dealing with that for 2.5yrs??  Pain meds NEVER took away enough of my pain to be able to live through it.  I work as an architect and could hardly make it through days sometimes b/c of my pain.  So I never hestitated for new RSD treatments.  Before the SCS, you should definitely try the lumbar sympathetic blocks.  Since you have had it for 2.5yrs, chances are pretty slim that you will get lasting pain relief from them, but it's worth a shot.  I met someone at my pain doctor that was on his 41st lumbar symp nerve block to avoid surgery.  He's there every 3-4 mos!  I couldn't imagine doing that forever.  Obviously they help for that long though.  Anyway, you can only do what you feel you can handle physically and mentally.  For me, it has been well worth it!!!!  I went from being in constant pain, not sleeping, hardly able to work, difficult to drive, on crutches to walking normally!  I have hardly any constant pain now unless I accidentally turn the stimulator down and forget to turn it back up...my knee definitely reminds me of that.  I sleep through the entire night even though I still take Ambien to help.  I used to continue to wake up despite taking ambien...b/c of pain.  I am a happier person and feel like I am slowly getting my life back!!  It has been a life saver for me.  In fact, tomorrow I am planning on baking some cookies for the first time since my knee surgery.  I am taking the cookies to the surgery center on Monday when I get my stitches and staples out.  I just want them to know how much they have helped me and how much better I am feeling. 

If you do decided to go with the procedure no matter when it is, I will be here supporting you.  I definitely suggest finding a skilled doctor who does this procedure a lot and knows all about it.  Just think about getting your life back...being able to walk the dogs without pain meds or a wheel chair.  I can't wait for that as soon as mid-december comes around.  That's when my movement limitations are over. 

Well I hope you start going after some RSD treatment.  It has saved me!!!!  Good luck with it.

Farrah

[Doc79316]

Hi Farrah,

I used to work for the lcoal Planning Department and now as a PLanning Consultant so it's not so bad an more, but try to imagine making a site visit to measure a proposed extension on uneven ground, on a cold rainy day with no pain meds! That's the worst it ever was and after that I thought I could find a way (somehow) to continue to do the things I want to.

I can't remember what normal is and just canot see how I could ever walk normally again, although I knwo it can happen. The problme here is partly the NHS and partly one hell o f a lack of communication between doctors - including the odd admin error that nobody is prepared to own up to. All this has left me with being untreated and having to live with it, regardless of how bad it is. As you know the pain never leaves but doctors here just see numbers, not people.

My OS is trying to sort out the pain management issue also now as my pain doctor has all but given up on me. I think he's just trying to redeem himself as he hasn't managed to fix the mechanical side of my knee problems.

Are there likely to be further problems if I was to have more surgery in the future after having a SCS?

Thanx for your support.

Laura xx

[arkitect06]

Hi Laura, I forgot to post the picture. 

The limitations you will have with SCS are no MRIs, you will have to show proof of implantation at the airport security, you can't use certain medical machines like ultra sound, and other things.  You can have surgery, but they will have to know about SCS and it depends on where the surgery is.  I don't know how old you are, but they told me I'd have to go through a high risk OB to get through a pregnancy.  I'm just happy to know that I can have babies now!  My husband and I are mentally ready whenever I am physically prepared.  So there are limitations with the machine inside you, but for me they are worth it.  I wonder what kind of pain your PS has treated with the SCS in the past and not had success.  My research has shown that it's very helpful in RSD patients versus other types of pain. 

Well it's time for me to eat lunch.  I can answer other questions any time. 

Farrah

[Doc79316]

Hi Farrah,

Thanks for the picture. it looks really sore.

I'm pleased you can have babies now when you're ready. When you do, they'll completely turn your life upside down but that's the best part.

i think I'll do more of my own research on the SCS and not rely quite so heavily on doctors' opinions.

Laura xx

[Cynthia1982]

Hi Laura,

Just letting you know i bad in the land of the living. I replied to your post on my thread.
I hope you get your pain management sorted out, it's not much fun going around with no help dealing with the amount of pain your feeling.

Hope your keeping well,

Take care

Cynthia

[Doc79316]

HI,

Cynthia,

Have PM'd ya. You should be asleep!

Laura xx

[Cynthia1982]

Hi Laura,

Thanks for the PM.
Your right i should be asleep. All i've done since i got in here is sleep.
I'm going to try and sleep now though the lungs are getting a bit tired.

Take care

Cynthia