Cervical Spondylosis ruminations

[quote:29bb03ba1e]Hi Jas

I think you're so right to reserve your energy for those that deserve it. It's probably easier to focus on the negative reactions, but it's going nowhere unless it's challenged on the bigger social scale... not everyone's idea of how to best utilise their re-hab time. Hope the recovery is going as good as can be expected, it seems it's different for different people and probably difficult to assess if all is according to plan. Even more difficult when the plan itself doesn't define specific accurate expectations, Seems, from what I've browsed on the Web, that a bit of self assessment is the best way to assess the benefits and recovery time. Forgive my ignorance here, but the best I can do for a comparison here is whenever I've had to buy a 'new' secondhand car. For the first couple of weeks, I'm so sensitised to the fact that I might have bought a dud, I imagine everything malfunctioning. Until it all settles down and my mind is relaxed enough to accept I might have got a bargain....that is, until the next breakdown! I might have surpassed my own ignorance in even assuming that might be a reasonable comparison....just tell me off if I'm outta line. [/quote:29bb03ba1e]

Hiya Gerry..... :ok:

I have no objection whatsoever to being compared to a dud car.... :lol:

Its funny...Because straight after my Op, I had a very restrictive hard collar on, which made me feel very safe and secure....I knew that whilst wearing that damned collar, i couldn't hurt my neck at all....but 7 weeks later when it was removed, thats when i felt VERY vunerable...I was terrified (still am actually) of falling over and upsetting the healing process!!

Very interesting rumminations...... As i had worked in Disabilities for 24 years, I have heard lots of horror stories of people being locked away from society ....even as recently as the 1960's!!! I met a lady who was as 'normal' as you or I, but she had a mother with mental health issues...so she was sent to an institution for many, many years until someone finally realised she was not disabled at all...She went on to tell her story to anyone who would listen. :D

Normal is such a irritating word to me...what does it really mean???? Who decides what 'normal' is anyway??? :roll:

Anyway...sorry for my rant....Sometimes things you rummie about make me think a bit too much..... :wink:

I hope your thursday has been a good one this week!!!

Take care....and let us know if you are having the surgery or not....

Love Jassy..xx.. :fairy:

Hi Jas,

Sorry about the car analogy. I think I was trying to describe the over-sensitivity that uncertainty creates , and used a totally insensitive comparison. I've had 2 weeks to stew on that, so...my humblest apologies. Maybe a pre-posting sensitivity checker wouldn't go amiss. My only defense is that it was a Thursday and maybe the old engine was misfiring !

Your comments on the post op collar etc are interesting. I've got some questions below on that. You've been thru the process already so you might understand where I'm coming from.

Had my EMG tests on Monday. Electric pulses and needles in arm and hand. Moderate discomfort, just like they said. Everything was explained rationally to me...i.e the nerve problem is not local and most likely is neck based. I've experienced no queues, no waiting, no attitude, and I feel confident in how I'm being treated. Normal trust has been resumed. One more test to go - thats another MRI next Monday, and then to the consultation with the surgeon on June 6th. I find it easy to blank out my scepticism from past experiences when all the procedures are proper and make sense, despite the fact that it's all leading to eventually having to make a big decision. Of course, my final diagnosis might be that the c/s is too far advanced to justify surgery. I'm also prepared for this, but all the soundings so far have hinted at surgery.

Here's those questions:

Do they tell you, with any certainty, the long term prospects if you don't opt for surgery ?

Do they give you enough time to consider the options once they've decided their best way forward ?

I'm already aware of the contra-indications such as post op myleopathy, bowel/bladder problems etc, even post op infection requiring a second op, and that these need to be weighed up as risks. However, most info on the web seems to suggest successful outcomes and that, only in exceptional circumstances, will a collar be required. Do they tell you beforehand if they think a collar will be necessary ? I can't help but think that they talk up the recovery time, but, in reality, it more often than not takes longer.

There's also the problem that the op only really deals with the arm/hand situation, and if other symptoms kick in, headaches etc. it could make the recovery more difficult than they can anticipate.

I suppose it all comes down to how you are advised and how you feel at the time you make the decision for surgery and, as I haven't reached that point yet, it's impossible for me to know how I'll react. My only previous op was appendix removed, 30 years ago. There was no choice and it was quite painfull for a couple of weeks, and practically forgotten in 4/5 weeks. I think the current situation needs a bit more knowledge and planning.

One thing I forgot to ask, Jas, is, did you need assistance to do ordinary stuff, like shopping or cooking, after the op. I know about lifting weights etc. but I think they assume there is usually someone at home to help with normal stuff. I'd have to plan this.

A lot of questions, I know. Just ignore if you don't feel like dragging it up again. No problem.

Hope you're doing well. I can only imagine how tentative you feel , with the collar off, so...take care.

Gerry

[quote:8ca910a2e7]Hi Jas,

Sorry about the car analogy. I think I was trying to describe the over-sensitivity that uncertainty creates , and used a totally insensitive comparison. I've had 2 weeks to stew on that, so...my humblest apologies. Maybe a pre-posting sensitivity checker wouldn't go amiss. My only defense is that it was a Thursday and maybe the old engine was misfiring !

Your comments on the post op collar etc are interesting. I've got some questions below on that. You've been thru the process already so you might understand where I'm coming from.

Had my EMG tests on Monday. Electric pulses and needles in arm and hand. Moderate discomfort, just like they said. Everything was explained rationally to me...i.e the nerve problem is not local and most likely is neck based. I've experienced no queues, no waiting, no attitude, and I feel confident in how I'm being treated. Normal trust has been resumed. One more test to go - thats another MRI next Monday, and then to the consultation with the surgeon on June 6th. I find it easy to blank out my scepticism from past experiences when all the procedures are proper and make sense, despite the fact that it's all leading to eventually having to make a big decision. Of course, my final diagnosis might be that the c/s is too far advanced to justify surgery. I'm also prepared for this, but all the soundings so far have hinted at surgery.

Here's those questions:

Do they tell you, with any certainty, the long term prospects if you don't opt for surgery ?

Do they give you enough time to consider the options once they've decided their best way forward ?

I'm already aware of the contra-indications such as post op myleopathy, bowel/bladder problems etc, even post op infection requiring a second op, and that these need to be weighed up as risks. However, most info on the web seems to suggest successful outcomes and that, only in exceptional circumstances, will a collar be required. Do they tell you beforehand if they think a collar will be necessary ? I can't help but think that they talk up the recovery time, but, in reality, it more often than not takes longer.

There's also the problem that the op only really deals with the arm/hand situation, and if other symptoms kick in, headaches etc. it could make the recovery more difficult than they can anticipate.

I suppose it all comes down to how you are advised and how you feel at the time you make the decision for surgery and, as I haven't reached that point yet, it's impossible for me to know how I'll react. My only previous op was appendix removed, 30 years ago. There was no choice and it was quite painfull for a couple of weeks, and practically forgotten in 4/5 weeks. I think the current situation needs a bit more knowledge and planning.

One thing I forgot to ask, Jas, is, did you need assistance to do ordinary stuff, like shopping or cooking, after the op. I know about lifting weights etc. but I think they assume there is usually someone at home to help with normal stuff. I'd have to plan this.

A lot of questions, I know. Just ignore if you don't feel like dragging it up again. No problem.

Hope you're doing well. I can only imagine how tentative you feel , with the collar off, so...take care.

Gerry [/quote:8ca910a2e7]

Hiya Ger.... :ok:

Firstly...I was in no way offended by your car analogy, mate...!!! No apology needed.... :ok:

Now to answer your questions.... :D

1. [color=blue:8ca910a2e7]Do they tell you, with any certainty, the long term prospects if you don't opt for surgery ?[/color:8ca910a2e7]I think every surgeon would be different and it may even be different for me cos im in Aussieland... 8) My surgeon DID tell me the long term prognosis if i didn't have surgery... more deterioration of the neck, arms would eventually be paralysed, then legs would go, bladder and bowel after that!!!! Not a very hard decision for me to make!!!! GIVE ME SURGERY!!!!! :weird:

2. [colo

[quote:e376f0bc64]3. Do they tell you beforehand if they think a collar will be necessary ? Yes...well in my case they did, but it does depend on exactly what type of Op you are having.[color=red:e376f0bc64] If you are having an ACDF without mental plates screwed in as support, you don't usually need the collar 24/7, but they do suggest you use it when travelling in a car etc[/color:e376f0bc64]. I dont have metal plates, just the disc cages inserted so my neck needed the 7 weeks of the neck brace while it began to fuse. I think if its more that 2 levels (mine was C4/5 & C5/6) it is nessecary to have the plates screwed in as well...the reason why they avoid using the plates is to lessen the chance of complications with swallowing post op....I have a friend who had 2 levels done and also had plates and screws and she had minor issues with swallowing for a few weeks post op...so i guess that depends also. I hope this isn't to much info for you.....I don't want to scare you off having the Op!!!! If and when you decide about your surgery and if you need the hard collar, I will tell you MUCH more about it....but for now.... <<That was the closest emoticon to a zipped mouth!!! [/quote:e376f0bc64]

I was meant to type.... If you are having an ACDF [color=red:e376f0bc64]with[/color:e376f0bc64] mental plates screwed in as support, you don't usually need the collar 24/7, but they do suggest you use it when travelling in a car etc

ARRRRRRRRRRRRRRRRGGG...I must be tired.... [size=18:cc1dab56db][color=red:cc1dab56db]METAL PLATES...NOT MENTAL PLATES[/color:cc1dab56db][/size:cc1dab56db]

[size=7:cc1dab56db]Me thinks i am mental tonight[/size:cc1dab56db]... :lol:

Hi Jas,

Thanks for this. Just what I needed. Far from putting me off, it means I can go to them prepared. Most of the stuff I've looked at on web just mentions being careful at home after op. Your op seems to have been a bit more extensive and it's good to know the realities. I'm sure they're inclined to always quote their text book statistics in an attempt not to discourage...however, as we're unlikely to meet anyone with similar experiences to reassure ourselves ( except on this site, of course ) when expectations don't quite meet realities, I wonder if that approach is best . Some meat there for a future rant no doubt !

Had my MRI yesterday. Unlike you, I don't have a problem with it...almost fell asleep...that's the worrying bit! I see it as like going to a rave party ( not that I've ever been to one ) with really bad music. I go into a bit of a trance. Afterwards, I walked to the British Museum in Russell Square, close by, and spent an hour pouring over the looted treasures of the Empire. Couldn't find an Irish section (after 800 years you'd think they'd at least have one display case )....I suppose they were just glad to see the back of us ! I think we should take our Guinness and Jameson's back and leave them to their Pimms and Bitter.

Poms...eh?

Sorry to hear about your recent setback with aches etc, and I hope it.s only temporary. If it's mostly headaches, all I can suggest is the cerv pillow that Em recommended last year. I still use mine, and it really does seem to keep the headaches at bay...mostly. Money well spent. I remember you mentioned you used to use a water pillow. but I don't think it's the same thing.

Anyways, the best for now

Gerry

PS....

Mental Plates ....I think it's a \" Freudo Typo \" as opposed to a \" Freudian Slip\". Sub-consciously, it seems to fit ! :ok:

[quote:09f76ac6ec]PS....

Mental Plates ....I think it's a \" Freudo Typo \" as opposed to a \" Freudian Slip\". Sub-consciously, it seems to fit ! [/quote:09f76ac6ec]

I had a chuckle at this!!!! Thanks for that Ger... :lol: I needed that!!! :D

I'm glad i didn't scare you off with my experience with my Op.... I couldn't be anything but honest about it, as it's a serious decision you may need to make!!

I envy your relaxed state with the MRI....I loathe them soooo much!!! I have tried to go to my 'happy place' :wink: the first time i had one, but it didn't work...Maybe im not zen enough for that!!! :roll: :wink:

Let us know when you get your results....Take care...Love Jassy..xx.. :fairy:

Hi everyone.

No news yet. My consultation has been put back 8 days to 14th June. A little respite! It seems even neuosurgeons must have holidays. Maybe the volcanic ash disturbed a previous plan. Who knows!

This is just a little ongoing report on recent events for me. Last week I took on some work, just 3 days freshening up a flat due for sale. I haven't worked for some time, so it was a chance to guage exactly what effects it might have on hand / neck etc. I had been feeling generally ok, perhaps due to lay off, easy life...no pressure. Anyway, I found the work ok, physically, my hand seemed better at gripping brushes etc. There was no pain and maybe I've adjusted to the numbness somewhat. I did a little overhead work, very slowly, knowing the risks, just to see if anything had changed. The results of this kicked in 3 days later i.e. stiff neck / headaches...but no change to arm / shoulder /hand.

One thing I did notice was that, as the neck stiffened, my anxiety levels seemed to rise accordingly, hollow feeling in stomach, more negativity etc. This is what seems to happen if I don't know if it's going to get worse. Luckily, I know I've only aggravated it mildly, so my sensible head tells me it should pass in a few days. I'm sure I'll cope ok with this one, but it does help me understand that, in the past, when I wasn't looking at these aspects so closely, I was vulnerable to rising anxieties and plummeting self-confidence on a regular basis.

Obviously, I am still vulnerable, but, maybe by trying to view the thing a bit more professionally, understanding my emotional involvement with my own anxieties etc., I can more easily dismiss these unwelcome add-ons. These things only kick in when there is uncertainty about a situation deteriorating, so, having a less distracted understanding of what is likely to happen, should help me focus on what really needs doing i.e. relax the pain and allow to heal quickly. Obviously, we only ever get back to a more tolerable level...but that's c/s for you!

We usually rely on the reassurances of professionals and friends to help with this stuff. But, really, just how much do they know ? It's nice, but it doesn't necessarily hit the point. Maybe a little self understanding of the processes involved in the general ups and downs of c/s would go a long way in reassurring ourselves and help to keep the side effects of uncertainty at bay. For instance, just thinking about and posting my thoughts on these issues has lifted me a bit....so, thank you all for allowing me to post my rants publicly, in a meaningful forum. Bloody hell, I feel all emotional now!

Hope to be able to follow this one up in a few days with a final positive analysis.

Gerry

Hello Gerry:

I was in the same profession as you (decorating) You told me off a while back for saying that you was \"lucky\" that your CS is not that severe.

I'll tell you something, if I do any decorating now - I wouldn't be able to walk for days because of the pain that would generate throughout my body. I can barely lift my arms, and I have pains every single minute of every single day, and I now have vertabral pressing on arteries which makes me dizzy. I'll still say the same thing to you as I said before - you're very lucky mate to be even working with CS - but obviously not lucky that you've got it. Believe me I wish that I was out there working at decorating, because I really miss it, I know that you'll understand that.

All the best Alan

Hi Alan

I think I might have over-reacted to that \" lucky\" tag. Hope you can understand....no offence intended. I know I am probably lucky to be able to still have a go at the old decorating, unlike yourself. Don't know if it's relevant, but, over the years, I have had many phases where I've felt like packing in and nursing the problem....but I seem to need the challenge, despite often aggravating it. I know this is only particular to my levels of toleration and I'm not suggesting it would suit your circumstances, or anyone else's, for that matter. Of course, it's a relative thing, and I hope you can understand I can only talk about what I experience, even though it might sound a bit flippant to someone, like yourself, whose experiences have affected your life like yours have. What I would really hope for is that my investigations of my own experiences might help someone, who is new to c/s and it's confusions, to cope a little better by understanding some of the complications which will undoubtebly arise. Tall order, perhaps, but worth a shot. One thing for sure....anyone posting their experiences might be helpful to someone else...and that's what really matters.

I think it would be patronising of me , Alan, to suggest that I know exactly where your'e coming from. Your situation is obviously more difficult than mine. But I do wish you well....and I do read all your posts.

Regards

Gerry

Just following on from the previous thread, I'm still a bit stiff and sore. Am \" patient-ly\" awaiting symptoms to ease off, which I know they will. I suppose I've adopted a lifestyle which accommodates these downturns and I don't have to go into any dispute with myself or get too frustrated with a nuisance which I know will pass, given time, some painkillers and a bit of positive thinking.

I've gotten used to having two different modes of living....one accommodates trying to fit in with normal activities with others...and the other accommodates a stay clear of activities philosophy until I feel it's not going to bother me and hinder or disrupt my recovery, until I feel ok. One is a need to feel engaged generally, the other a necessary self - preservation ideal. I am better at switching between the two than I used to be, but I still know it can confuse people who aren't familiar with the complications I face. Very selfish of me, I know, but better than driving myself insane when I know I can't and don't want to compete and simply won't be able to meet my usual expectations ( restricted as they are, anyway ).

Since I've been off work, except for last week's adventure, I don't seem to have a need to wind myself up to a certain physcological level that would be required if a work challenge came my way. I was doing this a lot, when busy, and, probably, as part of the same equation, ignoring the fact that, a lot of the time, I really felt I should have been taking it easier and paying more attention to the real problem i.e. At all costs....Don't aggravate the neck !

Anyway, these are the habits I've slipped into, almost by default. I know that, unlike many others, my self employed status allows me to pick and choose what I do, when I feel able. Probably making that sound easier than it is, but it does allow me options that regular employment doesn't. Not forgetting, I am also frustrated self employed because I was never fit enough to build it up. There's an old saying...\" Your money stops when you hit the ground \" which fits metaphorically here. However, being self employed, I think, helps to highlight the decision making processes each time a new challenge arises, and that probably explains why I can seem more concerned with these aspects rather than the nuts and bolts of aches, pains and medications.

Of course, the real challenge always, is to try and find ways of coping better with c/s, and sometimes I find, a good questioning attitude can help distract me from a first port of call reliance on medication. No doubt I'll get some flak for comments like that....it's ok, I'm used to it now ! I'm not knocking or criticising anybody's choices, or non-choices as they may see it. All I'm saying is that my particular circumstances allow me to explore these options and, if anyone finds that offensive, there's really not a lot I can do about it.

Anyway, they're only ideas on a ruminations page.

If you ever read the small print attached to the advice of professionals, you might notice a \" caveat \" which states.... \" If that doesn't work, is it ok if we start seeing you as a hypochondriac ?\". Seems like all the cards are stacked in their favour, so why not think outside the box occassionally, just to see if anything has been overlooked.

Gerry

Hi everyone

I;ve just been doing some physco dabbling on the issue of how we percieve ourselves, in direct relation to what we consider ' normal '. Do I need to assume the status, because of my condition, of someone ' less than normal ' or ' more unfortunate than most ' in order to fit in. Or, is it just a comfort zone we create to accommodate our understandable lack of will to compete in a threatening environment. Just a question !

Imagine this. The Government has set up Ghetto's for people with specific health issues ( no need to remind anyone where something similar has happened in reality ). Each condition has it's own ghetto, ours is a c/s ghetto, with a five mile perimeter, and no one iis allowed to go outside this radius. Inside the ghetto, we will only encounter people, exactly like us, with the same condition, symptoms etc. Now, not knowing what it might be like to not have c/s, we might percieve ourselves as 'fortunate' that we are no different from anyone else. It seems our perception of how fortunate we are is in direct relation to what we encounter, rather than what we are.Unless, of course, we are unlucky enough to also have ME or MS or whatever, in which case we would always suspect we have been placed in the wrong ghetto, and would develop an attitude to accompany this injustice.

To me, having c/s is a bit like this, I feel I'm in the wrong ghetto, dealing with strangers who, thru no fault of their own, are unaware of my realities. Like the book says.... \" A Stranger in a Strange Land \".I'm not saying we should change our perception to a more 'fortunate ' overview. That would be impossible without a complete overhaul of all that makes us who we are. We have experienced being 'normal' i.e. not having a health issue, and we have then experienced having c/s, and our perceptions changed automatically, if reluctantly, to accommodate our new circumstances.

However, the mechanics of how we percieve ourselves are open to investigation.For instance, if I can convince myself that everyone I meet has a secret health issue, a bit like I see myself, then, perhaps that will create a level playing field where I won't feel the need to excuse myself as being a bit 'unfortunate' in my capacities. The comparisons, which in the back of my mind usually mark me down as not willing to compete with 'normal' expectations, become irrelevant. I'm free to engage without assuming some lower status in a pecking order of ableness.

There is something in the theory that how we view ourselves is dependant on how we view people who seem better off than us. A closer look at this theory exposes many weaknesses e.g. Why make comparisons ?, Why assume inferiority ? etc. etc.The magic word in there is \"seem \"........the assumption that others are better off is questionable, and yet, perhaps we allow this assumption to rule our perceptions.

Just a thought.Is that allowed....well yes it is....it's my bloody page!

Which you are all welcome to enter....of course........... \" where angels fear to THREAD \"

Hmmmmmm. 4 days. No response! No comments! Now it looks like I'm responding to my own postings !!!! Ya gotta help me here.

But seriously. Been up since 6.30 am. Thought it better ( from past experiences ) to just get up and face the music. Usually if I try to sleep on, I just get more achey. Inevitably, the early morning hours can be a bit vacuus, especially with no big plan for the day, so the old grey matter starts to veer towards a bit of c/s blogging. Of course, it's a fine line between posting something useful about c/s and just tackling, possibly irrelevant, side issues. Well, it's not actually a fine line, it's either useful or it's trash. So, let's deal with the trash first !

Just pondering if I have adopted 'comfort zone ' routines to acommodate the uncertainties that go with c/s. By uncertainties here, I mean, not knowing how I'm going to feel (physically) when I wake up tomorrow, and not knowing that, if I do something strenuous today, will it reap havoc tomorrow, or next week for that matter. I'm sure this is a pretty standard default setting for those of us dealing with c/s for many years.

The answer is, of course, Yes. I have adopted routines which are less likely to cause, or even add to, any worries about tomorrow's, or even next weeks, comfort. This is a luxury I can afford when I don't have physical committments at work, which must be completed, regardless of counter reactions. Last summer, I spent 3 months up ladders and scaffolding, all the time knowing that, once done, I would have to spend weeks nursing the aches away. I don't recommend it as good therapy for anyone with c/s. Accepted, i've still got the option where I can challenge the pain, until it beats me down. But I've never left anything unfinished. Heroic, isn't it ?

Back to adopted routines. Now that I've been given a badge of approval, with neuros and physios clambering all over me, I find it a lot easier to dismiss any sense of unease about how I spend my day. I am now entitled to feel precious about myself, and I'm not going to let that one slip by without extracting maximum comfort. It's like I've been given a licence to pander myself.

My empty day will be filled thus ( for those of you desperate to know !): start with some off-beat rumminations, have extended breakfast, perhaps upload some guitar tuition vids to Youtube ( also thinking of setting up Youtube site for C/S...will inform later ), sort out any outstanding paperwork, maybe a trip to supermarket to stock up and wind down to evening meal / tv / phonecalls / night cap, and then into the arms of Morpheus. My nightcap preference these days is a hot toddy i.e. whisky, lemon, sugar, honey, cloves and hot water. Nice .

All in all, with no surprises, should be a reasonably decent day. Compared to a working day, that is........Pressure, Pressure, Pressure, Pain, Pain, Exhaustion, Sleep it off. No comparison really. I still know that , if a reasonable work challenge comes my way, it's been slow this year, I'll rise to the occassion, despite my nagging caution. It puts better quality bread and wine on the table and accommodates my relentless vicious cycle of self-testing. Some may think I've got an easy option here, but I can assure you, the reality is not so. What can I say ?

So, yes, I've got the comfort zone routines but always, at the back of my mind, is the possibility of something more challenging. This helps to keep any lethargy at bay whilst , at the same time, I devise new routines to fill the day. It maybe, someday, I won't have the work option anymore, so I must prepare for long days with some positive ideas. No problem here really as long as any activities are meaningful and fulfilling and I'm not planning on languishing in a twilight zone of frustration and resentment at not being able to live as I'd want.

I don't think anyone else can recommend any best