WELCOME TO SPINE HEALTH

I am sorry to hear about your troubles. It sounds like you are about to embark on a BIG SCARY adventure. Try to stay positive, don't rush the recovery, take your meds around the clock as instructed and get as much help as you can from friends and family. It will be long road but it doesn't have to be aweful

This is a great place for support and information. Check out the surgery thread- it has a list of must haves for home (foam mattress pad, raised toilet seats, slip on shoes, long handle grabbers etc) just about anything that we discover works for post surgery we share...

I have been following the various Thoracic surgery patients on Spine Health since last summer when I was T-Boned and eventually discovered to have several T-Spine disc bulges as well as a couple pretty serious protrusions that are torn/leaking.

There are very few members who have had Thoracic Fusion it is very rare and most surgeons dont want to mess with them. Keep searching and you will find some information. I can email you some links with more information. PM me and I will get back to you. We are not allowed to discuss or share certain information on the boards- but you can PM it.

I have similar issues as you but I have just started getting stronger myelopathy in my lower half (numbness in my thigh, tripping, falling etc). I have another NS appointment in a few weeks and I am sure I will be going in for updated MRI's or CT scans to see if I am progressing....

Keep us posted on your schedule.

Julie

Oh no! It's great to meet you but I'm so sorry for the circumstances. I had herniations at both T8-9 and T9-10, both of which were compressing my spinal cord but certainly not as severe as yours. I developed numbness and tingling in my lower extremeties, as well as patchy numbness throughout my legs. I had a two-level thoracic discectomy done completely posteriorly 5 weeks ago. I was thankful to be able to avoid the anterior approach, as that scares the heck out of me. But it sounds like your situation is quite critical. Unfortunately for me, I have another disc acting up, and it's higher up, so the surgeon has warned me that it may need to be done anteriorly. I'm really hoping it doesn't come down to that.

In any event, I will definitely keep you in my thoughts and prayers. Please keep us posted on how things go for you, and do exactly as the surgeon says!

Hi
Thanks for replying, its nice (if thats the right phrase!) to know im not actually alone as this type of injury is pretty rare.
I am scared to death in all honesty and have a pre op on Monday at the Sheffield Royal Hallshire foe ECG/ chest xrays, blood tests etc the in again on wednesday overnight to thursday for an angiogram. I can only assume from this the operation is about to be in place - fingers crossed there are no complications from the results of these tests.

The steroids that I have been given for the fortnight have kicked in and although the legs are wobbly, the pain has eased. I have briefed them fully at work now as they are aware its not "just a slipped disc" as they felt thats what it was!
I gave the full brutal force of whats ahead and I think it worked. I am hoping the see that as a single mum they will continue paying me - one less thing to worry about!

I will keep posted as and when I can get on here, but if you want to contact me away from the board I can PM you my email address and add you to my update of friends.

Thank you so much for taking the time to reply

Caz
x

Caz,
I had this op in 2003 at T5/6 level at Oldchurch Hospital, Romford (now rebuilt and called Queens Hospital). Like you, the problem was identified at the emergency stage (legs giving way, drop foot, loss of bowel bladder control) so not to much time to worry about the surgery, which is probably a good thing.
It is big, brutal surgery and you will feel sore and uncomfortable for a some time. But hang on in there, it does get better and I made a good recovery, eventually. I wouldn't like to go through it again though!

You will be in my thoughts and prayers.

Mick

Any help would be appreciated. I am having pain on my left down to my feet also with numbing sensations. I am very scared. I have a thorasic hernation impinging the thecal sac for about 9 months now. I am tripping a lot and almost fell in my bath tub the other day. I have no health insurance and don't know what to do. I had surgery recently and thought that the problem was coming from my cervical spine at c5-6 so I was fused there but still having symptoms from before surgery. Alot of pain in my ribs and chest and left arm as well as left legs. I don't know what to do. I don't know if this could get better for a little is seemed to but then I had trigger point injections that have made the problem as bad as before.

Jewel are you anywhere near a teaching hospital?

Julie

Caz,
3 weeks post op?

If you are you will be feeling pretty uncomfortable right now.

I never felt any good until I was able to have my first shower. It was so blissful. One of the phillipino nurses gave me some orange fragrance soap (made a change from NHS soap) and I still have it to this day. Every now and then I unwrap it and sniff it and it takes me right back to the day I smiled again!

Hope to hear from you soon.

Mick

and wondering how you are getting on.
Hope that you will start to feel it was all worth it soon.

Hi all
Its been a long time but I finally got out of hospital after six long weeks.
Unfortunatley I had the op on the 5 sept and it was only 80% successful so I had to go through the whole things AGAIN ten days later.
The heart was moved, lungs collapsed and rib removed. On both operations I was given an epidural and a chest drain, which was the most uncomfortable thing I have ever felt and was pretty unpleasant. Initially he used the rib as graft but on the second op he took it out completely. The first op took 13 hours with 4 of those being the anasthetic, the second was 8 hours.
He did say that after the second op he had done all he could. I couldnt get any movement in my left leg but could push away with it which he said would come back. The right leg gained strength and although has numb sensation still, I think this is due to the severity of my condition and may/may not improve.
I spent four weeks in high dependency at name of facility removed and then two weeks in rehab at the name of facility removedHospital. With the help of physio I have progressed from being moved with a rotunda and getting from the bed to the chair, to being able to walk with a frame and now a stick. I am slowly getting movement back in the left leg but still struggle to lift the knee so limp a little. The surgeon has said that I may remain with a limp, which is better than total paralysis.
Having gone thro both operations I am getting on ok. The steroids and morphine have now stopped and I am on regular med/high pain killers. Can feel where the rib was removed and is a little sore. I have a nice scar across the side where they went in but its very neat and healing nicely. One of the chest drain holes has healed well but the second one is taking a bit of time and is a little sore.
I never want to go through the operation again and looking back, get tearful now and emotional when I think of the last six weeks. I remained positive throughout and tried not to think about the operation but reality has now kicked in and its scary how serious it was and the implications of it.
I am still feeling numbness round the tummy area which I am not sure is nerve damage whilst they were in the chest cavity or if it from the effects of the epidural which was kept in for a long time, and also twice.
I am hoping for a reasonable recovery and thank god I am alive and well in myself.
Thank you for the comments and posts, its nice (if thats the right thing?!) to know that although this disc herniation is rare, I am not alone.
Caz xx

Post edited by moderator haglandc

Caz,
Glad to see you you are on the road to recovery.
I spent 16 weeks in hospital thanks to MRSA and I can totally relate to your nightmare experience.

It might cheer you up to hear that I had no feeling or movement in either leg for many weeks but slowly but surely things got better. There were many weird sensations on the way as dead nerves and wasted muscles came back to life. Quite painful sometimes but some sensations were weird but actually quite nice. I had terrible pain in a toe in my left foot and it was discovered I had broken the toe at some point and hadn't known about it. It has reset itself at a funny angle.

I had to learn to walk again properly which I did thanks to a bullying physiotherapist. She explained that my brain and body had got used to my neurological deficits and had evolved alternative ways of coping such as walking from the hip to make up for the weakness in the knee and ankle muscles.

Even though the surgeon had mended me and movement and feeling was coming back to my legs, I still walked with a limp, because I had got used to walking that way. It takes a long time for wasted muscle to rebuild and if the physios had not intervened and forced me to try and walk "correctly" I would have carried on limping and the leg muscles would have remained weak. Or maybe they were just sadists and it would have come right in the end anyway,. Who can say?

Anyhow, I reckon it was a good 2 years before things were anything like normal and the soreness and tightness round the incision has never gone away completely, but how wonderful it was to feel things getting a little better each day rather than a little worse!

Wishing you well for the future,
Mick

Wow. Your stories scare the h3ll out of me. I am glad you are doing better.

Feel Better,

Julie

Just a thought Caz,
Keep an eye on that sore wound. I contracted MRSA through my chest drain wound. I'm not saying this to frighten you, but the chest drain incision is open for much longer than the main wound and there is much more oportunity for an infection to develop there. if it swells up, or the redness spreads or doesn't go away, or the wound starts to weep, get on the phone straight away or make your way to hospital to have it checked out.

Mick

I am so sorry that you had to go through all this. This is one of the most horrendous surgeries I have read about.

I am glad that you weathered the storm and are improving.

Take care of yourself, Caz, and let us know how things progress.

T

Hi my first comment here
I am 7 weeks post op from thoracotomy t-7 corpectomy fusion where they take out part of your vertabrae, then the two adjacent discs (on either side of t-7).

Problem is I felt better 1 week out from surgery than i do now due to the return of sensation in front of my abdomen and a significant reduction in pain medication.

I used to have a pretty great life, moderately social. Now all i do is wrap myself in a heating pad and pray that someday i will feel somewhere close to normal again.

My Questions are 1. what should be expected as far as when to start Pyhsical Therapy 2.what is a reasonable pain medication titration schedule and 3. when should i expect to feel closer to normal again?

I am distressed, and confused as what to do.

Your thoughts on this are MUCH appreciated.

Marine Dad,
I can only speak from my own experience and with no particular medical knowledge. Clearly everyone is diferent especially with the sort of surgery you have undergone.

There are two seperate issues.1/, Your recovery from the surgery and 2/,if and when you will regain normal neurological function.

Well the surgery is MASSIVE as you will appreciate and if my personal experience is anything to go by, you can expect to be feeling the effects for a very long time.

Regarding regaining your neurological function and repairing the damaged nerves, again expect a gradual recovery over months rather than days. I think there is a corelation between the time the nerves/cord was trapped and the time and extent of the recovery.

I came of meds very quickly because I was halucinating wildly, suffering panic attacks and not sleeping. Each attempt to change my meds seemed to present a new set of problems so I opted to stop them as soon as possible. Some, steroids for example, have to be withdrawn gradually while others can be discontinued straight away.

I started physical therapy practically straight away.I think the therapy is tailored to your particular circumstance. Like Caroline, I spent time in a rehab unit and each of the patients there was following their own programme following a consultation between the surgeon and the therapists.

I was not expected to make a full recovery and there were doubts as to whether I would ever work again, but I am happy to say I proved them wrong on both counts!

So hang in there, don't try to rush things. Work at your recovery, but be patient and don't do anything silly.

Good luck.

Mick

I am now two month post op and things are improving. I am having physio weekly and given exercises to do. Initially I couldnt lift the knee on the left leg or the foot so when i was walking upstairs it was being dragged behind. Im pleased to see that slowly the strength is coming back. Initially, the "good" leg that was workiing well, is proving to be a problem as I have no sensation of hot/cold feeling and it constantly feels cold even though when I touch with my hand it isnt. (bit of as bugger when getting in the bath with that leg first - ALWAYS check the temperature!!lol)
My chest drain Mick has now healed up and all three wounds are recovering well. I was severely allegic to the dressing they used on the second drain (never known before!) and it drove me crazy, thankfully, all sealed and healed and feels better. The rib removed and that area is still very painful and I have no feeling from the centre of my stomach/chest to the side where they worked - fingers crossed that comes back in time.
Normal day to day stuff is improving now and I am due to go back to work in ten days as I have no money coming in at a really bad time of year
I am still on Tramadol and Declofenac but think I may decrease these soon. Was glad to get off the morphine as I was the same, panic attacks, hallucinations etc - great pain relief but thought I was going mad!
I am determined that I will be walking again and will not accept any problems they feel I may have. Initially I was on a walking frame, then crutches and now I can get about without them , although I like the crutch as reassurance when out.
It really is a matter of time, exercise and determination.
Stick at it Marine Dad and stay positive, it really makes a difference getting you through things I promise.
Caz

Hey Caz!

I'm so pleased to see you are doing so well. You are making faster progress than I did at this stage.
You have a lovely positive attitude and I'm absolutely certain that counts for a lot.

I had the weird temperature thing. Mine changed from everything feeling cold to everything feeling really hot. One minute I was piling extra blankets over my legs, next minute I was reeling back in pain when luke warm water splashed on my feet in the shower!
I'm sure it's just nerves coming back to life and your brain trying to make sense of the messages it is receiving.

I had to go back to work long before I was supposed to for the same reason. I enjoyed my brief freedom but actually I was glad to get back to the rhythm of working again as it took my mind off things.

Take it easy at first, I'm sure you will.
Don't be surprised if you can't lift your arm very high on the side of the surgery. I couldn't then and I can't now, 8 years on.

I guess it is where tendons and things were cut to allow the surgeon to get down to work on the important stuff.
I would have let him cut my arm off and sow it back on again if he felt it would have helped him make me well again.

I'm rambling and choking up a bit recalling "those" days, happily now in the past but always with me.

Good luck with everything Caz.

Mick

Hey!
Wow how good do I feel after my appointment with my neurosurgeon last week! 9 weeks post op when they called me into the room - I got up and walked in using one crutch just for reassurance. The registrar who initially saw me was amazed. He had read the notes, the fact that I had been through thoracic surgery twice in two weeks - he was expecting me to be in a wheel chair and totally incontinent. He was more than impressed to see that I was walking, fit and happy (fit as I could be anyway!) and with no apparent problems with waterworks so to spk! My surgeon then came in to see me - apparently I am pretty special there! The calcified disc and double surgery was something he wasnt expecting, I had two neurosurgeons (one came in from holiday especially)to ensure they nailed it.
It made me more determined than ever to be walking with no aids and with no limp (which I am apparently going to always have?!) when I see him in six months.

So to anyone who is worried about surgery, I have to say, positive attitude really does make a difference. It's never going to be easy and yes, its scary, but believe you will get well and improve and you will - that I am convinced about!

Mick, the first shower? After convincing the nurses I could be unattached from my morphine drips to have a shower - Oh yes that was heaven! I wanted to stay in there all day after four weeks of bed baths! It was absolute heaven and I must have driven the nurses made by telling them how fantastic I felt!
I also have to say that after two weeks of not washing my hair, the nurse on high dependency washed and conditioned my hair from my bed - I cried I could have hugged her, it made me feel so much more normal! It's surprising how little things can seem like the best things in the world.

I just hope that these posts, which may seem a bit scary to some people facing surgery, offer some hope and reassurance that life goes on, a little slower to begin with but it makes you grateful for what you have and there is always someone out there who is a little worse off than you.

Caz xx

You have done so well. You are an inspiration to others. I'm sure that your fantastic positive attitude is part of the reason why you are doing so well.

Keep up the good healing:-)

Caz,
wow, you're doing great!
It took me two years before I could walk 100% normal, but it happened eventually so keep up the physiotherapy exercises.

I took up riding a bike. Ride in low gear for short distances at first and do stretching exercises after each ride. I ride about 12 miles a day now. I still have trouble getting on and off my bike to this day, so I don't expect I will ever be 100% cured. But compared with what "might have been" I have no complaints whatsoever.

Funny enough, because for the last 8 years, since the sugery, I have been exercising much more than most of my friends of my age (I am 61 in a couple of weeks), I'm actually a lot fitter than most of them and people who haven't seen me for a while always comment on how well I look.

So ironically, the horrible bit of my life has paid dividends in the end! (I still wouldn't like to go through it again, oh no)

Good luck with everything, Caz. Remember "slowly, slowly, catchy monkey" as they say up your way.

Mick

Well, took the plunge and went back to work this week. I did intend doing full time (I'm a PA 9 - 5.30pm) but after day one I was shattered, and pretty tearful. I spoke to my boss who said that up until the end of year he would let me do Mon, Wed & Fri (full days as I am relying on a staff member to drive me).
Today is Tues (the day after day one) and I have slept most of the morning! What a shock, I wasnt expecting to be so exhausted - its a case of the mind is willing but the body isnt so keen!
Hoping that working three days will allow me to build up to full time in the new year as sadly I am only getting paid what I work and cant live on that

I didnt do my physio yesterday as I was shattered but I know I need to do them and make sure I progress - its the only advice everyone gives "always do the physio exercises". I did however walk for 2 hours on Friday and concentrated on "how" to walk properly which was tiring, but its getting there.

I just wish I had known that after surgery things dont go back to normal straight away!

Reassuring to keep reading positive threads from everyone that there is light at the end of the tunnel.

Caz

Please don't beat yourself up about not going to physio or about struggling to get back into your full working hours. You have had a massive surgery there, and it will take a long time to get back to things.

Keep up the walking. My physiotherapist told me that if I do nothing else, the walking is very important and is the best thing I can do.

You can get back to all the other stuff later.

Look after yourself,

Caz,
Jellyhall is dead right about the big surgery.

I forgot how tired I used to get. When you're off work you can sort of pace yourself, have a nap etc., but when you are at work you are doing stuff at their pace, which is probably a bit too much right now.

Just as well you have an understanding boss.

Getting all those limbs and muscles working again is a mammoth effort. It's not just the ones that keep you moving, but also the static muscles that keep you balanced while you are standing upright. It's been a while and they've forgotten what they are supposed to do and how to do it.

It will all come back in time and this whole episode will be consigned to memory. One thing I am sure of is that it will change the way you feel about things forever.

Mick

Hi all
Managed three full days this week (Mon Wed & Fri) with loads of sleep on the days off! I kind of like being back at work, but am on an enotional rollercoaster and my confidence in myself and my job has taken a hit.
The hardest thing is relying on people to pick me up and drop me off for work. I really want to start driving again but not sure what to do about it! I feel like I'm a burden on the work colleagues as I live in the middle of no where and comments have been made to "how far out" and "have to leave 20 mins earlier" - maybe I am being too sensitive!

Have decided next week to leave off the knee brace, it seems to be more of a hinderance now and not allowing me to bend my knee as much so will see how it goes this weekend.

Thanks to you all for being at the other end of this, its reassuring that there are other people out there who know how it feels!

Caz
x

Caroline ,i have been following your story with a great deal of interest and have admired your outlook and perserverance
5 months ago i had disc removed and replaced T7
I have recovered well and returned to work as a plumber 1 month ago
i still have tingling sensations in my legs and feet but have no trouble walking (most of the time)
Does anyone know when the tingling stops??
Also i have developed pain in my right rib cage quite severe at times but not there all the time
Thanks for any advice received
Good health to you all

I was wondering how you were getting on, Caz.

I used to have a fold up walking stick which I had with me at all times for about two years till I realised I wasn't using it anymore.

Compared with me you seem to be doing very well at 5 months post op. The peculiar neuro-sensations do seem to last a long time.

8 years on I still have some burning in my left outer thigh, numbness in some toes and my balance isn't brilliant if I'm in the dark or have my eyes closed.
I can't lift my right arm above shoulder level and I'm still a little sore in the rib region, but 99% of the time I don't notice any of that stuff.

I think you will start feeling more like your old self when you've been off medication for a while, I did.

I never lost my hair after the surgery, probably because I had already lost it all years before!

Oh and I had a few sobs too when I was on my own and I don't mind admitting it even though I'm a man. You can't experience all that pain, anxiety and intense emotions and come out of it completely unscathed mentally.

I know it's a chore Caz, but try and keep up those physio exercises. It really does help get those muscles working again.

Good luck,Caz, keep smiling. It all takes time.

Mick.

I have a question for you both.

Did you try Epidural Steroid Injections on your thoracic spine before your surgery?

I have been told last week that I now have 2 discs in my thoracic spine that are compressing my cord. (It used to be just one.) The neurosurgeon said that is almost certainly what is causing the tightening band and spasms around my abdomen.

He said he is not suggesting surgery as it is a very difficult and painful surgery to recover from. He said that we could try ESIs to see if that helped. At the moment, I am managing with my symptoms, but am having them more frequently. The other day something made me jump slightly and it caused my abdomen/chest to go into a painful spasm for a few seconds. It is good to hear that there is something that we could try if I reach that point.

If you did have ESIs. Did they help?
The same neurosurgeon has suggested that I have a 2 level ACDF as I have increasing symptoms from the cord compression that I have there.

It is so good to read of people that have survived such a traumatic surgery.
Well done! and I wish you both every success in a complete recovery.

Things have improved a lot.
I have stopped taking all the pain relief (yay brave me!!)
The ribs hurt and there is pain across the chest and back at times, some days are better than others.
It feels like I have a corset around the middle of me constantly (thing is, it doesnt make me any slimmer!)

I have finally put together a blog of the whole episode, mainly to say that there is light at the end of the tunnel when being diagnosed with something so serious.

I dont know why my future will hold, right now things are improving and I am living life to the full as much as I can.

http://thoracicsurgery-backtolife.blogspot.com/2012/03/6-months-post-ops...

That's the link and if it gives just one person some hope and positivity then I will be pleased.

Caz xx

Things have improved a lot.
I have stopped taking all the pain relief (yay brave me!!)
The ribs hurt and there is pain across the chest and back at times, some days are better than others.
It feels like I have a corset around the middle of me constantly (thing is, it doesnt make me any slimmer!)

I have finally put together a blog of the whole episode, mainly to say that there is light at the end of the tunnel when being diagnosed with something so serious.

I dont know why my future will hold, right now things are improving and I am living life to the full as much as I can.

http://thoracicsurgery-backtolife.blogspot.com/2012/03/6-months-post-ops...

That's the link and if it gives just one person some hope and positivity then I will be pleased.

Caz xx

Things have improved a lot.
I have stopped taking all the pain relief (yay brave me!!)
The ribs hurt and there is pain across the chest and back at times, some days are better than others.
It feels like I have a corset around the middle of me constantly (thing is, it doesnt make me any slimmer!)

I have finally put together a blog of the whole episode, mainly to say that there is light at the end of the tunnel when being diagnosed with something so serious.

I dont know why my future will hold, right now things are improving and I am living life to the full as much as I can.

http://thoracicsurgery-backtolife.blogspot.com/2012/03/6-months-post-ops...

That's the link and if it gives just one person some hope and positivity then I will be pleased.

Caz xx

I have only read some of your blog and I really admire you. I will continue to read more over the next few days.

You are one strong woman and you really deserve to get your life back (or rather your new one with Mark).

It is so reassuring to read how you have coped with this enormous journey and gives me hope that I will be able to get through whatever my future holds for me.

I have just been told that I will need to have a 2 level fusion on my neck. (I had a lumbar fusion 2 years ago.) I also have problems in my thoracic spine, with 2 discs compressing my cord. I have osteophytes in my thoracic spine. I am coping at the moment, although I do have pain with a tightening band around my chest and frequent spasms, especially if I try to twist. I actually have enlarged muscles around my abdomen which a physiotherapist told me were due to me over exercising. I am not aware that I have done exercises to work those muscles. However, they are right where I get the frequent spasms and so I wonder if that is what is working the muscles! I have been told that we can try epidural injections if I feel it is necessary.

I hope that you will continue to heal and improve and I wish you a wonderful life ahead.
Take care

thank you for making your blog. i'm reading it now and it's nice to see how things happened over time. i've been reading a lot of different forums lately. most people just bounce from one post to another and you can't make sense of how they are getting on.

AM