Incision Healing

Hi George,

Thanks for your reply. It's just nice to speak to someone who has been through the same thing & also puts my mind at rest that it can be normal for the scabs to take a long time to heal up. Because it's our back that has been cut it just makes it hard when you sit & lie down because it's always against something so there is pressure on it all the time.I'm seeing my GP on Tuesday for a check up & get a sick note so will get him to take a look at the scabs then, see what he thinks. I don't get to see my surgeon til the 4th of February & that's my first post op appointment which has seemed like ages & I find there is no one to ask what I should or shouldn't be doing in between time.

I knew this op was going to be a long recovery but it seems even longer now as it's quite slow. I'm improving each week but it's slow. My pain isn't too bad, it's just the cuts that are sore & I know I will feel alot better once they are healed. My other concern is my left leg & foot has been numb since surgery, the surgeon said it's normal & should come back in time. Did you have any issues like that.

I'm trying to look to the future & hoping life will be great in a year's time.

Hope you are doing ok after your surgery.

Tracey (UK)

Hi Tracey

Please don't take my story as a bad omen.

I have had major problems with my recovery, long story short I have had further damage in my spine but also had bad problems with legs and feet, I have been on so many pain killers and I am due to have a spinal cord stimulator inserted, it's attached to the spinal cord and sends / stops signals to the brain to say your in pain, they hope this will fix it all.

I know what you mean that it feels like a life time before first follow up. I found for the discomfort I got a v shape pillow and a memory foam pillow and this helped by keeping the spine off my firm mattress.

Please keep me updated or ask anything else if you feel the need, but I do hope you recovery goes well.

George :-)

Hi George,

I'm so sorry to hear you have had those problems since your surgery, I do hope the spinal cord stimulator will help you. I do have sympathy for you, I don't think anyone can understand what we are going through unless it's happening to them. I have a wonderful partner who has been fantastic looking after me since surgery but even he can't totally understand how I feel. He tries to make me positive about everything but it's not always possible as sometimes all I want to do is scream. I hope he is right & that we will be able to do all sorts together when I'm better but some days I wish I hadn't had it done but it's too late now.

I'm only taking paracetamol & gabapentin for pain so I guess that's good. I was on crutches when I came home but since Monday I've been walking around without them indoors.I'm not ready to go out walking yet as I feel vulnerable & also our weather hasn't been brilliant has it.

I had my surgery done in Salisbury, where did you have yours done?

When do you think you will be having the stimulator fitted? Does that mean major surgery again? I do so hope it's a success for you.

Keep in touch.

Tracey 😊

Hi Tracey

Thanks for your kind words.

I had mine done at Frimley Park, Surrey. Surgeon was ok but had to fight a bit to get what I needed as they just take forever to make a decision, not sure how you found things??.

The weather has been poor hasn't it, it took me quiet a while to get courage to go out on my own, especially being wet I was so worried about falling and making things worse, just do little and often but listen to your body it takes everyone a different speed.

I have been suffering with the leg pain a fair bit, and was referred to the pain team which has eventually got me to where I am today, they are looking at doing the operation in the next 4-6 weeks, it's apparently not that complicated but you have to go for a 2 week In stay to get trained up, see nurses, phycolagist before they finally inset it. But I know this will all be for greater good.

My wife is Great too but she has never had to deal with anything like I am going through and has found it very frustrating. But your right It's hard to actually feel your being understood. I have found this forum good even just to vent sometimes.

If you do have to see a pain team and they play with your meds please please please steer clear of pre gablin, I had put on 25 kg and they didn't warn me this was the drug, it was only seeing the team in London they took me off it and within 2 weeks I lost most of that weight gain, the drug helped but isn't worth the risk of side effects.

Regards

George xx

Hi George,

Thank you for your message. I had mine done at Salisbury District Hospital in Wiltshire, I have been under the orthopaedic team since I was 26 which is now 26 years ago & I have just been having injections annually & I also had rhyziolysis twice but it got to the point where any relief was short-lived so my surgeon said that we had come to the point where surgery was the only option so I had to decide whether I wanted that or not but I felt I had no choice but to try.it's been harder than I thought though.

My partner took me out for a drive out last weekend but I had to ask him to turn round after abit as I didn't feel comfortable sitting in the car & felt vulnerable out & about, although the days are long at home I feel safe there.

I hope your ok goes well when you have it done in a few weeks & fingers crossed you get some relief from the pain as it doesn't seem fair to go through all this & still suffer after.

We are lucky to have good people in our lives but it's the same here that my partner is in good health & can get around with no problems so doesn't totally understand how I feel sometimes. This forum is great if you find the right person to chat to.

If I have to see anyone about meds I will be careful what I take, thanks for telling me about your experience, it's good to know.

Take care & best wishes.

Tracey x

Hi Tracey

I saw what you said about your partner.  My boyfriend is fit as a fiddle.  He works out 3-4 times a week, twice a week with a personal trainer.  He is very buff.  He had back surgery years ago, but it was minor and it worked.  He has a problem with his shoulder, like a torn muscle, but he just does not understand my pain either.  I' pretty much housebound.  I go out every Friday with him to have dinner. I would prefer not to.  And then there's the nightmare of weekly grocery shopping trips.  I use a grocery cart to lean on. He tries to be understanding, but unless you are a chronic pain patient, you just don't understand.  Be careful with the meds, it is very easy to rely on them. But, also, if you need them, you need them.

Take care,

Linda

Hi Tracey

I am 37, and had to give up work about 6 months ago, I had a great job and been with the company since I was 17 so was hard for me to give up, I have a 2 young children 3 yr old boy and 6 yr old girl. The hardest thing for me is I can't play like a daddy should be able to.

Compared to you and Linda ( we have spoken in chats before ) i haven't lived with this for many years but what I have had has been awful and hope I can sympathise with you both in similar ways.

I had L4/L5 and S1 done, shortly after it failed amd the surgeon confirmed it was failed surgery. I just hoping as I said the spinal cord stimulator works. I was very reluctant to have the operation in the first place but I thought having a 60% chance seemed better than what I had, so many people I speak to all have said the risks far out wayed the pain there and then.

As Linda says, take the meds you need to, i have been on so much and for me Diazapam and Amertriptiline helped with some of the leg pain but have a lot of side effects, I haven't found a drug that doesn't and I am sure we all tolerate them differently. At one stage they even gave me Ketermine infusions which as you know in the UK is used to put horses to sleep, so is rarely used.

I hope that as time goes on you will be one of the lucky ones on here, but I think as its our backs we all dare I say have been, are and even still scared about what might happen. Just remember we are all here for the same reason and talking to people outside the family network as they have little or no clue what we are going through can be a blessing in disguise, if that makes sense?.

Please feel free to contact me when ever even just to touch base and I hope we both have better news.

Enjoy the weekend.

G x

G xx

That's a good way to say it.  We are here outside of the family network.  Not to say we don't love them or get support from them, but they can't possibly understand where we are coming from.  Just like, thank God, we don't understand, really understand, what people who have lost a child are going through.  Everybody has their problems.  It is nice to find a group who understands you, and will listen to you.

I'm afraid once your back or neck is screwed up, these doctors can't really put back together what God created.

 

Yeah George ,i also have experienced worse pain in BOTH legs now ,whereas before it was always the left side ,quite a bit of numbness in my arms and hands too ,which wasnt there before the fusion op ,mine was done  2014 and i am now back on the morphine patchs ,Gabapentin to the tune of 2,400 mgs a day ,plus the usual Baclofen etc ,i was referred to the pain clinic in Jan 2015  and  am still waiting on my six month review ,the increased Gabapentin done naff all for the pain ,so i remain in their incompetant hands ,i also have been forced into ill health retirement because of this ,after 38 yrs of working i am reduced to this ,pain constanly only to be told there are no more options ,nice !!!! isnt it .

Hi TomasJoe

Gaberpentin i found never ever worked, I ended up on a whole concoction of medication and even that just eased things. I will put a list at end.

Giving up work at any age is truly awful, I was hoping to go back one day, but I have been told the spinal cord stimulator will only ever easy the pain to come off some meds but I'm the consultants 35 yrs of experience he said I will never return to a full and active job if any, I will take the option of the s.c.s and that it works in 60 % of people as my one option that might give me time back with my children before they grow up and I regret things.

Are you in UK as many people from all over so what we have in UK would probably be more available in the USA for example??

Sorry to here a further person having trouble

George

George, I would be interested to hear about your concoction of meds for neuropathy.  I've been using lidoderm patches, but recently found that lidocaine cream may be better.

Sorry I did say I would put list up 😀

Cocodomol 30/500 2 x 4 times a day

Diazapam 15mg 1 x 3 times a day

Amertriptiline 75 mg 1 x 3times a day

Duloxetine 400 mg 1 x 2 times a day

Pregablin 300 mg 1 x 4 times a day

Oxymorm ( quick release morphin) 30 mg 1 x 6 times a day

Lanzoprozol 1 x 200 mg

I was on morphin patches slow release 150mg and changes patches every 3 days but I was very drowsy all the time. I have a friend who is a Dr and they told me to ask the pain team to put me on something called targinact 40/20 mg I take 1 every 12 hrs. The amazing thing about this drug is it has the antidote for side effects constipation, drowsiness, anti sickness all the side effects you get, it's not offered on the NHS as a drug very often but they can give it but I had to practically beg for it.

Not sure how that matches with others 😀

They have told me the spinal cord stimulator will stop all the leg pain but not the back pain, I hate the pain I get in legs and feet it's so hard and I wonder if you have the same? I get burning sensation to both knees, then electrical pains to the feet, the biggest pain I get and it happens all the time is like someone is sticking hot pins all down me, but my two big toes are just awful.

Hey Buggsy,

I have a name for the burning in the toes "Great Toes of Fire!"  I get that too.  My legs are so achy and my pain meds don't help with that.  I'm on oxycodone, lidoderm patches, lidocaine creme, gabapentin.  I'm on 15 mg of oxycodone 5 x a day.  I was on 6 a day but my new pain med doctors had a cow and want to cut me down to 3 a day. I was on oxycontin for night, but they took that away, so now I'm awake all night.  I'm in the US.  They are very strick on pain meds here. We have too many drug seekers I think.  Althought they all seem to believe I have severe pain, they've seen the scars on my back- one of them says it looks like I've been butchered!  But they don't seem to care.  They want me to get the Nevro, and it is supposed to help with back pain as well as leg pain but I have my doubts.

Good l uck to you.  So, you're not drowsy all the time? Thats an amazing trick about the targinact. 

I was on 80 mg x2 per day of oxycontin

10 mg every 4 hrs of               oxynorm

300 mg of Gabapentin x 9 per day

20 mg Baclofen x2 

Mirtazapine 30 mg x 1 at night ,thankfully they have stopped the oxycontin and oxynorm after i became aware of the danger of prolonged use ,they now use the 50 mg per hour Mezolar patch which is much easier on the stomach ,and does work instantly but does not last 3 days as they said it would ,i get about a day and a half with medium pain and the other day and a half is constant pain ,i am in the uk , and i do hear of better results from sufferers in the USA for example , but i do think its down to how long before they actually diagnose the problem ,mine was drawn out for months before a triage nurse in physio actuallly caught on what it was and only then was the MRI scan done !!!!! ,

 

Hi I was on the Fentanyl patch (same as mezolar patch) and I had 2 problems with it.  One is that the patch wouldn't stick, so I never go even dosing.  Two, I wo uld wake up at night gasping for air.  One of the side effects is repressed breathing, and I had a bad side effect of not being able to breathe!  So I'm stuck with the lidoderm patch and lidocaine creme.  I also take a lot of ibuprofen, gabapenting, and tizanidine. The tizanidine puts me to sleep sometimes. Good luck with your treatment.  It can be tricky to get the right treatment.

Hi ,well mezolar definitly stick lol too much actually lol,i have been having more problems with the gabapentin ,cant eat ,and iron levels have plummetted dangerously low ,causing liver problems !!! ,its guinea pig time i think  with these Drs ,try this ,try that and meanwhile the pain gets worse ,too the point of falling when these leg spasams ,like electicshocks come ,worse in the left leg but also the right (since the fusion) i resign myself to the fact ,that this is as good as its going to get ,losing all faith in the medical profession, rapidly.

N,Ireland George ,Musgrave is a notorious spinal hospital ,given the area its in ,but its seriously overwhelmed .

Boy you and me both. No faith in the medical profession. I've been dealing with my back injury for 13 years, and I've had so many doctors who have done nothing but make this worse. Wish I had never had any of my back surgeries - I've had 5. All seem to have made me worse in some way. I din't know gabapentin lowered your iron.  Maybe that's why my iron is low. but I've been on ferrous sulfate for quite a while now. I get the leg spasms and the foot spasms and the electric shocks and the calf spasms too.  Have you tried taking potassium? If your potassium levels are low, you will get leg and foot spasms.  Although I know the fusion makesk things worse too because of pinched nerves and nerve damage.  Surgeons seem to be the worst, but pain management doctors are bad too.  I take potassium and magnesium which have helped somewhat. Maybe it could help you a little too.  I know my spasms get worse if I don't take my potassium.

Take care,

Linda