What would you do?

[Sandyeggo]

Hey guys hope you’re all well and good. I’m researching my latest and greatest problem and am interested in your opinions, knowledge or first hand experience would be fantastic. Besides my laundry list of respiratory issues I’m left hemiplegic from stroke in 90, due to this I’ve overused the right side of my body to the point of some semi major breakdowns muscle skeletal mostly because I play hard now but was an extremest in my younger days. My C5&6 are slipped, herniated and the nerve root is compressed ( basically my spinal cord is is being smashed/pinched). I’ve done all the conservative treatments: PT, Chiropractor, accupuncture, spinal epidurals, nerve blocks that haven’t given enough substantial relief so I was referred by a few of my medical team to go see the spine surgeon. I’ve always sworn I’d never have any kind of back surgery or anything close to my spine. I met the surgeon the other day he was cool an everything and told me I was an excellent candidate for mobi c disc replacement, he felt confident he could get rid of my pain. But there are too many things to consider I’m mind blown I can’t think straight. The pain doc that sent me to this surgeon said my MRI said I was at risk of becoming paralyzed from neck down but then surgeon said it will take a “long time” for that to happen. Uh hello exactly what is a long time? He said my right arm hand and shoulder would get weaker and weaker eventually leading to no longer working and I already get a taste of that from time to time zapping down my arm & hand. Do any of you guys know about this and/or what would you do? Sorry this got long but thanks for any help

[HungryHufflepuff]

That's a lot to think about. I don't know anything about any of it. But, when considering surgery this is what I think about:

Do the risks outweigh the benefits

Is there a less invasive alternative

Would I regret not giving it a go even if it doesn't work

Like you asked, how long is a long time? Even when it feels like a long time away you get there sooner than you'd think

What is your quality of life like now

None of these are easy questions and none have easy answers. In fact I just realized this is not a helpful reply! I'm sure someone will know about it and have better ideas 😄

[sassy59]

Hello, all I can say is that Pete has back problems as well as lung and heart disease. He had various treatments which didn’t work but eventually saw a specialist at Southampton to have a spinal cord stimulator fitted. This was done under an epidural as he cannot be put under general anaesthetic. All went well but it never worked for long.

Some 4 operations later and Pete still has the stimulator but doesn’t turn it on as it brings no pain relief. He is in lots of pain everyday and we are trying to find ways to manage that.

Please think long and hard before you have surgery and do your research. I wish you well. Xxxxx

[knitter]

I can't help with your decision, but I do have some idea of the pain you are in as I fractured two of my vertebra some time ago, and I have arthritis in my spine also.

Mindfulness and meditation have helped me to relax my back muscles and ease tension and pain.

In particular a book called Mindfulness for Health by Vidyamala Burch and Dr Danny Penman. There are links to free spoken meditations.

My copy is from I books....you can try out a free sample first. There is a moving meditation but that may not be suitable for your condition, it may be best to skip that one.

Best wishes whatever decision you choose.

[Caspiana]

Hello Sandyeggo .

What a terrible predicament! I really don't have any first hand experience with anything as severe as that, but I do know that after the birth of my second baby, I had the most awful back pain ever. It went on for about a year almost. I remember not being out of pain no matter if I was standing or lying down. And I remember that I would have done anything to be rid of that pain. I have Rheumatoid Arthritis , and so am no stranger to pain, but back pain is in a league of it's own. So, I truly sympathize.

I was wondering, if you go ahead , I assume you will be under general anaesthetic? Would that be safe for you? Or would that be a risk? I have to ask because the only time they would give me a general, is when I get a transplant. I am too high risk as my lungs are too weak.

If it were me, and I was I was in constant pain and have exhausted all the possible treatments, I think I would be very tempted to consider the operation. You could also get a second opinion I think. Always helpful to hear another perspective.

Please let us know how things go.

Sending very best wishes.

Cas xx 🌿🍃

[SORRELHIPPO]

I agree with HungryHufflepuff, you need to get the surgeon to spell out the risks and the % likelyhood of them happening, then the benefits, and the likely hood of you having/not having these benefits. You need this to make an informed decision. Very difficult all the best.

[Gigi71]

Hi Sandyeggo. I am mostly on the NRAS forum as I have Erosive Rheumatoid Arthritis. I do have many other health issues too. I recently had an MRI scan on my lumber spine 27th October. I was told I had osteo arthritis 2 1/2 years and given physio and exercise classes, many meds for RA but can't take opiate drugs. Had an X-ray on the spine in March showing as abnormal with many problems, referred to Pain Management took 9 long months to be seen. Very good consultant, very concerned man. Booked me for the MRI, that took a month to come through, all this when in dreadful pain. Letter yesterday, I have a grade 2 anterolisthesis of L4 on L5 with severe canal stenosis my case referred to Complex Spine MDT, which I was told their meeting was last Friday. I now wonder what they will offer me as I have always been against back ops, with friends/family not having much success. I also have osteoporosis. Walking has become a nightmare. I also have a CT scan booked for Wednesday on my lungs to check my lung scaring. I really empathise with you, I feel desperate but don't want to make matters worst. All the best to you X

[mellyme]

No ideas, but you are in my thoughts.

[Ergendl]

Wishing you all the best, whichever option you decide is the best for you.

[santisuk]

I have that exact same problem at the moment. I have been pretty much immobile for the last 30 days from pains that shoot down my left leg, aggresive tingling, cramping, stiffening of the calf and partial numbness in my calf and foot. All that happens when I stand up or otherwise extend my spine. I can only walk a max of 20-50 metres (depending on time of day and only with a walking stick). I move around the house garden and swimming pool using a makeshift wheelchair.

When I suddenly collapsed into this state I thought it was my osteoarthritic hips and so I lost 15 days thinking it would get better before deciding to drive the 535km (335 miles) to a Bangkok private hospital (pain was only in my left leg and I drive an automatic SUV that almost drives itself). An orthopaedic joint surgeon at a large private Bangkok private hospital told me without doing any scans that my symptoms and my lack of pain when he flexed either of my legs with some aggression were nothing to do with my hips but were classic signs of lower back disc pains. He sent me upstairs to his spine surgeon who X-Rayed me and said I had a degenerated lower spine and would probably need surgery. I made my excuses and left because I needed to consider which was the best hospital for spine surgery and this guy struck me as a lone operator (their ortho dept there was very big on joints and muscles but not spines).

I then consulted SE Asia's largest private hospital (in Bangkok) that has a big Spine Center and plenty of spine/neuro surgeons who also have had US training. The surgeon on day-clinic duty ran an MRI and, having said pre-MRI that most problems of the type that my symptoms portrayed were fixable without surgery, post-MRI he said that my L5-S1 disc was badly prolapsed and the detritus was pressing against nerve roots. Surgery was his recommended solution - endoscopic microdiscectomy which is done through a hole in the back with telescopic micro cameras and tools, rather than opening up a long stretch of tissue in the lumbar region. Apparently I can 'walk-out accompanied' the day after such an op.

I am now pursuing a further opinion from a UK spine surgeon, partly because I need my own advice and someone to question about risks and rewards who is not self-interested in selling the operation. I have had bad experience with 'cutters who want to cut' in Thailand and good experience with UK second opinions on my hips - I'm a Brit expat living with Thai wife and family living in the boondocks of Thailand. I may also need the UK opinion to convince my UK Insurance company to cough up for at least a decent chunk of the cost - but I'll pay the whole 13,000 dollars myself if I have to and if the risk/reward equation works.

Once I have discussed all this with my UK surgeon I might have further info for you on my thoughts in similar circumstances. For now my thoughts are that I cannot foresee living like this with my present pain and mobility levels and it will take a reasonably high possibility of something going wrong in surgery (say non-success probability over 1 or 2% and paralysis risk of over 0.5 to 1%) to persuade me to suffer through an extended period of alternative non-surgical procedures, which might not work anyway. Even at 67 I am fit and I cannot tolerate the prospect of not being able to walk freely for say 7-8km per day and I can't wait months to get this capability back if surgery can get it back relatively quickly. I need regular exercise to maintain my osteoarthritis and a lung condition at their presently mild/controllable levels. I don't think I can do that with purely resistance upper-body exercises and need to walk and swim freely.

I'm not a fan of long term painkillers and have restricted my pain management to one week of experimenting - firstly with ibuprofen or 'Celebrex' at minimal doses for 10 days. Neither had the faintest beneficial effect and my local Thai doctor commented that Celebrex was less effective at normal daily max doses than ibuprofen. He tried some steroid injections and low dose steroid tabs, but they had no effect either. I slightly relaxed my approach the next 10 days and took 2 x 400mg ibuprofen a day, which, when raised to 3 a day. 3 a day gave me stomach bloating, gas/farting and clay-coloured poo. I researched cause and found that this was a classic side-effect of longer term use of ibuprofen, particularly in older people. So for the last 5 days I have been taking a normal one-a-day dose of 250mg Celebrex and for the first time I can get some noticeable reduction in pain through til mid-afternoon at least. Although it has given some relief from pain at rest and from short bursts of short length walking it hasn't really improved my mobility range or the pain that emerges after say 25 metres with stick.

In addition one 300 mg capsule of Gabapentin has got me through the night (prescribed by that first lone wolf surgeon) which had been a painful and disturbed experience without such in the first 15 days. Nonetheless, my first hour of wakening is groggy and chemical-effected in feeling. So, I'm not inclined to take any more than that or take any opioids - the one saving grace is that I can drive around to see friends and keep some normality for the family and I shouldn't be driving on higher impact painkillers.

So that's the story so far. I'll post on here if/when I have further observations that might be useful to you or others. For now good wishes and good luck.

[peter06 in reply to santisuk]

Interesting facts

beta.nhs.uk/medicines/gabap...

[santisuk in reply to peter06]

Yes Peter 06 - I'm an avid reader of the internet before I take any new-to-me drug and I did read this or something very much like it. Made me reluctant to take it at anything like it's full dose but it's probably low risk at 300mg overnight just to see you get some sleep and I find it pretty good at that. I'm naturally a 6am waker, but in the last week, (now 15 days since starting it) I have very unusually overslept by an hour most days - must have some increasingly cumulative effect as the NHS analysis mentions. I don't begrudge its 1 hr post-waking hangover (actually that hasn't been as bad in recent days as at first), but wouldn't want to be driving with 900mg a day swilling around in me. Can understand why someone who has a low pain threshold relying on it though if they get a slipped disc, pinched/trapped sciatic nerve.

[Burbagegran]

Sorry, I have no knowledge of this so I can't help you, but I wish you luck with your problem and hope your pain gets resolved.