52 replies to this topic

[pinkcloud]

Hi all

As mentioned in other posts, I'm deterioted somewhat.

Spasms so very very bad, extreme pain in buttock cheek and knees, rigid toes, loss of sensation.

Me lovely consultant suggested open thoracic operation, very risky and dangerous. I was against this. Anyway now its evolved that even this is not a possibility. A syrinx is also suspected but I'm not having a scan - even if they found it, nothing could be done and what I dont know will help me emotional health because whats not written in stone means I can pretend everythings ok.

My question is this. I have lots of calcified bone around the cord. Me consultant explained the more pain I get, the more me body will try and repair itself causing more bone growth, spasms etc as the body thinks i am in constant trauma. I really cant afford for more calcification. So if I lay down a lot and dont get much pain doing this, will this prevent more deteriration? The surgeons say they dont know the answer which I really respect as they are confident in themselves to admit this - not all of them do.

Any suggestions, positive stories and negative stories much appreciated, I got a big challenge on me hands and I be sure it wont beat me, me loved ones need me here and to know you guys have got thorough a lot worse than me predicament gives me much hope.

Cheers all

[Avocado Baby]

I don't know what to say, but I couldn't just read it and not reply.
I'm so sorry to hear you're in such a horrible situation. Thinking of you xx

[jules]

I have just answered your post in another thread, where I asked if you had a syrinx, why could nothing be done. A Syrinx can usually be treated by placing a shunt or by removing any scar tissue which is causing the cord to tether, did they tell you why your's cannot be treated, is it worth getting a second opinion?

I really don't know about the resting and laying down because I haven't got any experience of this type of complication I am sorry. Is it not possible to remove the bone by doing a laminectomy - I am just throwing some ideas out here that you could ask your consultant.

Sorry you are having such a rough time, if it is any consellation I am having a rough time at the moment too, mine is nothing to do with my SCI, I am struggling with my lung disease.

Sending you big hugs, sorry I can't offer any more, but it is certainly worth a 2nd opinion on the syrinx I would say.

[pinkcloud]

jules, on 20 April 2011 - 10:20 PM, said:

I have just answered your post in another thread, where I asked if you had a syrinx, why could nothing be done. A Syrinx can usually be treated by placing a shunt or by removing any scar tissue which is causing the cord to tether, did they tell you why your's cannot be treated, is it worth getting a second opinion?

I really don't know about the resting and laying down because I haven't got any experience of this type of complication I am sorry. Is it not possible to remove the bone by doing a laminectomy - I am just throwing some ideas out here that you could ask your consultant.

Sorry you are having such a rough time, if it is any consellation I am having a rough time at the moment too, mine is nothing to do with my SCI, I am struggling with my lung disease.

Sending you big hugs, sorry I can't offer any more, but it is certainly worth a 2nd opinion on the syrinx I would say.

Thanks Miss Avacado, I hope your troubles are getting sorted.

TThanks Jules, I have had the best in the business all saying nothing can be done. I'm not sure of the ins and out of things, I think its because of what was found when i had the discectomy, at the time they couldnt get their heads around why I could walk. They say its because disc prolapse in this area is hard because the cord is narrow, and they couldnt remove the whole disc because of too much bone around the cord, its too dangerous. I already have lots of trouble with breathing, blood pressure, ad etc and they said best thing is to live by by day and to remain positive because thats whats going to get me thorough it all.

Although it shocking to hear theres no help or me, in a way its a relief to know as I can just carry on, no longer desperate to try and discover a magic cure. There is none. Yet I am confident that in me hands i can do the best meself, which is good for the self esteem as to know I am getting thorough this on me own, means i must be strong.

I am sad to hear of your news about your lungs jules, how horrific. And still you find time to help others,i'm sure i speak for many others as well as meself to say thank you. Your time is precious and for you to spend it here on forum is extremly inspiring and kind. I so hope there is help for you out there

Edited by pinkcloud, 20 April 2011 - 11:09 PM.

[jules]

Sadly there is nothing that can be done for my lungs, the growths just find me far to tasty. I manage the disease as best as I can by keeping as fit as possible, but I know that it is killing me slowly, but also that I am at high risk of having a fatal haemorrhage into my lungs at any time.

At the moment I have got a secondary pneumonia, which means I am stuck in bed with my oxygen on, which I hate because being in bed alone is very bad for my lungs. So from that point of view I know how you feel when you say there is nothing that they can do.

What problems have you had with breathing, because as you can imagine having a chronic life limiting lung condition I know quite a bit about breathing problems and may be able to offer you some advice. I also suffer with very low blood pressure because the treatment that means that I no longer produce cortisol.

[Simba]

Jules you are such an admirable person and I tend to agree that in some cases pinkcloud there will be 'no cure' as such and then it needs to come down to management of the condition which kind of sounds like what you are aiming at to me. I'm surprised there is no mention about what the specialists have said in terms of which exercises will be beneficial for you to do as some things will likely be causing further aggravation (the pain is likely caused by nerve damage & compression on the disc and/or cord) you will need to ask them about the things that you can do to help maintain your function the best you can.

Concentrate on the tings that you are still able to do as this will keep you feeling good about yourself. As to the outcome know one will be able to tell you, the day by day approach is the best for difficult situations like yours.

You two are both extremely storng & positive individuals - I am sure I can not give any advice to you that you are not already putting into actions and using so I wish you both well and for the best possible time to come, find enjoyment where you can and know that you are an inspiration to many people on here.

[jules]

Simba I couldn't agree more about concentrating on what you can do rather than what you can't. As I said on another thread my local lung consultant puts far more pay on how I feel and what I can do rather than what my scans look like and what my bloods show. When I see the national "specialists" who don't know me as well they can never link the scan they see in front of them to the actual person sitting there with them. This is because my scan would suggest that I should be in bed on oxygen all of the time if here at all! I formulated my own treatment plan with my consultant, and my personal trainer and using my knowledge from work so we decided that if I could stay as fit as possible, the less damaged areas of my lungs would to a certain extent be able to compensate for the areas that have been completely destroyed.

Pinkcloud I feel for you so much, I think this would be your best way forward to, you seem to have utmost confidence in your consultant which is half the battle, so come up with a plan together, for any exercises that you can do.

Like I said before you mentioned that you have breathing difficulties, if you tell me what these are I might be able to help you with breathing techniques (you wouldn't believe how many there are)and also breathing and clearance exercises.

[pinkcloud]

Jules, luckily for me my breathing is no where near as bad as yours.

Me breathing muscle were cut and they had to bypass the lungs when they did the operation. I remember coming out of theatre screaming as i couldnt take a full breath. i felt as though i was suffocating.

Me physio taught me how to take a deep breathe, as she held frozen peas to the area. It was one of the hardest things i have ever done. The pain was ecxruciating. i only shallow breath now much i know is bad for pain levels too.

Because i have nerve damage and spasm in these breathing muscle, i never get a chance to rest them and botox was injected in them which helps so much. The pain i have is like having stitch after running a high marathon. Also me teeth hurt when i breathe in cold weather.

i do meself no favours at all because i smoke heavy. Although the doctors said i can carry on as to try and stop on top of all me problems would be too much. i am sorry to be an insult to your injury as you dont smoke and its not fair you suffer this.

Although the doctors cant help us, hold onto the thought that even when dr's know lots of things about common conditions, peoples health fails. i listen to audio books and radio plays - its easier than reading books or watching films and it does feel as though someone is in the room telling stories, plus it makes the brain work harder as we imagine the charactors. Its a good distraction from the health issues too

Edited by pinkcloud, 21 April 2011 - 12:34 AM.

[Edinburgh Colin]

Jules,

You are truly an amazing lady, an inspiration in how to mentally deal with the issues you do. You seem to be so at peace with where you are it is an example to us all, I hope you are rewarded with a lot of time and the opportunity to spend it as you wish and that you gain emotional fulfillment from that time too.

I hope you breathing improves soon and you are up and about again

All the best

EC

[Soryfam]

Hi Pink. I really don't have any answers for you. I wish I did. The thought that we can help ourselves by having a good attitude is a good one. Today I was at the dentisit and he asked me if I ever get depressed from everything. I thought of all of you here, and the one thing we absolutely have control of is our attitude. I told him about it and he had to agree. You all have gone through so much. I find it amazing that any of us can stay positive.

Best wishes.

Sandy

[Chel]

Hi pinkcloud and Jules,

I am so sorry you are going through these terrible trials and I am sending you all the best that can keep you comfortable and stable. I commend you both on the encouragement you share through posts. Wishing for you both all that is good and helpful. (hot cocoa in mugs)


Chel

[mellowgator]

dear pinkcloud,

i just googled syrinyx and it said that sometimes fluid can be drained or surgery can be done to releave pressure so further damage to the cord doesn't occur. it listed sypmtons that seemed very similar to yours. this is horrific and my heart goes out to you.

i just read your reply to jules that explained the dr.s view on this. pinkcloud i'm so sorry the prognosis seems so grimm.

i wish i could offer you more than my support.

kind regards,

mellowgator

Edited by mellowgator, 21 April 2011 - 03:23 AM.

[pinkcloud]

Hi all

Jules, re: blood pressure, before me bp used to sit at around 90/60 with pulse of 99 when resting. Now I read up on this and this is meant to not be very good combination, but all the doctors and cardiologist said its normal for me. Now it sits at 130/90 which is more normal yet to me body its not, so seems me body isnt 'normal' anyway so that means a good sign to me.Jules, how your coping is too amazing for me to put into words. Gave me a push because if you can do that, with this trauma you live with, I can certainly cope with this too as in my eyes, this is 1 out of 100 and yours is 100/100 difficult.Respect to you.

It took 2 years for surgeons to find my disc which was 3/4 squashed of cord squashed onto by then. It was because I looked too healthy and at the time of me accident was filmed on tv where they said it waw a miracle I had no damage - at that time I only had xrays.

I knew all of the surgeons and doctors who looked after me very well as I used to work for them. If I did not know them then they would never believed I had climbed mountains/drove/worked with this injury for a year and a half before diagnosis with only paracetamol to help me. Because I remained so happy and looked after me appearence I didnt look like a typical person in agony. Thats how we know something isnt right because I am more disabled now than when the disc was compressing so much.

Thats how they know how important attitude it - to remain happy and positive and listening to me body is best.Jules, you are amazing, as everyone here is. You, like meself have belief and hope in ourself and it sure counts for a lot.And thats because for me, because I ask people how they cope and take the advice on board - so in my case, its due to all the people I have met, especially on here, who can take much credit.

SSimba exercises, they never even recommended physio after surgery, its only becausse me friend is one, herself a recovered sci, that I had some. And even she is at a loss.And she is the best (qualifications and how many people i met who rate her as a miracle worker, which i say confirms this) and whom I trust 100 per cent. The nhs physios say they wont touch me - as just before i went into hospital paralyzed they were saying i am ok - its just stress, which made them rather red-faced with shame. Again I prefer them to say they cant help and be honest, than try to help and do more damage. All they could recommend is what to avoid - lifting and to stop when I hurt to much. I can never know too much how to cope and even the little-est things you all do and take for granted as it comes natural to you, is taken on board to me.

Draining a syrinx would be dangerous to because of where it is, and with my children, i cant afford to take the risk of surgery that may not even work. As long as I can be here for them is all that matters to me.And the reason why I push on thorough.This pain is hard for me but nothing compared to what me boys would feel if surgery went wrong.But in anyway, surgery isnt even an option now so to you lot I turn for coping ideas.

Thanks all for your time in reading the posts, even those who say they not sure what to do, helps as it helps me to know I am doing the best in a situation others would be unsure of what to do too.Thanks all

Edited by pinkcloud, 21 April 2011 - 04:43 AM.

[roo]

hi pink just read your post ,,sorry to hear you are going through a bad patch at the moment i have no advise but could not just read your post without sending my best wishes and hope you start to feel better very soon,,,you are in my prayers
Roo

[pinkcloud]

Thanks Roo

A few of me friends pray for me and this sure does help I reckon. Thanks for including me in your thoughts :-) God bless to you too

[hannibal]

Pink,

I would look for alt for the draining of the syrinx. I had mine drained about a year ago and it really did not help me at all. In fact I still got worse after mine was drained.

I do wish you the best of luck, and hope things come together.

[jenny407]

Pink and Jules,

I can only offer my sympathy. You both are in my thoughts a lot.

Hugs, Jenny

[pinkcloud]

Thanks Hanibel

I have heard this report about syrinx's too.

At least where I am now is bearable - the risk of getting worse, ahhh heck not worth thinking about. At least it will happen slowly if I can manage me symptoms well. Thing is with my level of injury, especially in this country, the doctors said it is so rare and there just are not enough people with it to justify spending research money on it.

My thinking is because sci is so individual, this may be normal course of action for an incomplete injury. After all, we wouldnt need this website if everything went well for us. As my original operating surgeon was not interested in my case at all post-op, how can things for others ever improve if on their books the operation is classed as success? He could do more operations like mine, thinking hes done a perfect job and people are left alone in the same mess I am in. Its only because of me knowledge of medical world I got referred on for help from mrmccelland and mr sell or else i would be left to me gp - and as much as i really like this gentleman, hes not a brain surgeon (neurologist) so hows he expected to help me, bless his heart.

if you could kindly give me more info of your symptoms and how you cope, this will help me so much. Thanks in advance for your help hanibel, your a star

Edited by pinkcloud, 21 April 2011 - 03:55 PM.

[hannibal]

It hasn't been easy like you my legs are often so tight that its sometimes painful. Baclofen seems to help me, my spasms range from bad to nothing. I do have pain in my torso ranging from severe for a couple days to nothing for a couple weeks.

I am having trouble with my spine, since its not fuszed my curviture is getting worse and worse.

what I try to do is stretches with my back or try to position my back in a certain way.

I wish I had better answers but it is not easy to deal with everyday. I just try to live my life and enjoy the small things.

[jules]

Pink, I was just thinking that although you do not want treatment it still might be worth having the scan so that they can monitor the syrinx. I am a T8 incomplete myself and I have a syrinx, however mine is stable and does not cause me any problems.

I am not sure what you mean by them bypassing your lungs during surgery, I realise that you mean that your intercostal muscles were cut during the surgery, but they should have healed by now. As for only taking shallow breaths this is really bad because it means that secretions and any bugs can get lodged in the small air passages of your lungs, and as a smoker this is also really bad. I would say that you would benefit from a certain type of breathing known as active cycle breathing, you can do this either lead on your side or sat up, it involves taking the deepest breath that you can and then actively forcing the air out, more like you are blowing up a balloon, so a slowish but powerful breath out. If this doesn't work for you there are many other breathing techniques out there, like I said before too it is very important that you don't take shallow breaths especially being a smoker.

Please re-think having your scan too, because monitoring it could become very important.

Jules
x

[pinkcloud]

[quote name='jules' timestamp='1303406544' post='222313']

Jules you are so wise intercoastal muscles - thats what they are called and I tried to explain them to you. Unfortunatley they are far from healed. My back is in major spasm - especially over them muscles. So much so that I needed botox in that area and sitting, standing, walking......are all agonizing because of this muscle and other major back spasms. Me pain management consultant said that its nerve damage and muscle damage and because the spine was being compressed so badly for a long time (when I say I was active, I mean very active and although it half killed me with pain, as a single mam I had to do lifting and activities some ab men cant do, for 2 years, before they found the herniation) thats why I have so much calcification around the cord now. And this is the reason why no operation will help me. How long I will last before the spine gives up, they dont know. What could they do for meif it does - they dont know.

I phoned up a few surgeons secretaries before finding these surgeons I am under now and they all said they would not go near a thoracic spine.If you know any surgeons who know more about t-spine please do let me know, although I am not one for doctor shopping and would rather stick with the ones I am with as the trust I hold in them is enormous - from both their reputation with other surgeons and patients alike, i would value your experience as afellow t-8 spiner. f accept from the doctors that Facts are facts and nothing can help me, so I would rather be left alone to get on with me life than keep being prodded around by medics - I'm so tired of it and just wish to rest in life peacefully now. I need a break from hospitals/doctors etc, for me own emotional health. My doctors know me well and agree with me decision. If they didnt believe I could handle it well they would push for an MRI, i have had soooo mant mris/ct scans/x-rays over the past 3 years I dont see the point of more rdiation when all they can do is give me medicine anyway and my symptoms are the best story to go on for that.

I will definatley try these breathing exercises. And I thank you so much for your kind help with this. I am too weak not to reply on nicotine crutches - I did stop for 3 years, starting again when sci appeared. Maybe one day I'll stop again. It would be nice for me. I dare not breathe deeply alone, it hurts so bad, I will ask me physio to help me with this one as I am sure deep breathing will help with pain levels too. I feel ashamed to say I am a smoker when your innocent lungs are poorly and I do apologise and thank youu for helping me, its much more than most non-smokers would do let alone anyone in your position. You are a very special kind of lady.

Edited by pinkcloud, 21 April 2011 - 06:17 PM.

[pinkcloud]

[
Hey hannibal, just this bit of information you shared has helped me lots, to know you are stll alive and going on, especially with your great attitude - has gave me hope I will be ok too - and theres not much more of a gift than hope because without it what do we have?

thank you

[Wheelsonfire]

It just goes to show that we who enter the chair have it easy at times, knowing straight away what we are to deal with, not waking up to find we have lost more, feel more pain, unknowing possibilities for our cards are dealt early in the game of life.

I wish you the best in these trying times and offer strength rather than prayers.

Take care, little one.

[pinkcloud]

Thanks wheels

Heck, I reckon you wheeling wounded get it all in one lot at the start, like the a more painful eqivalent of:

living in a world where false teeth dont exist

Getting all your teeth knocked out in one go without any anaesthetic

Having to eat crackers so all your gums get ripped to pieces before being offered the chance of living on a diet of soft foods, which is ok - but the option of eating crunchy foods aint there no more.

And not even having a chance ever again to try different foods - and the chance of never even being able to try again, being ripped away, that I would imagine to be one of the toughest parts to deal with.

Us walking wounded get a punch in the face, then the teeth slowly start falling out bit by bit - when we are told we would only ever loose two teeth - sometimes with the help of a dentist and anaesthetic - sometimes not.

At least we had the chance to find out walking isnt the be all its cracked up to be, and I feel fortunate at least we had the chance to find out the hard way. We had the freedom of at least being able to give it our best shot. Plus at least we get the aid of time to adjust.

Wheels, your injury was the equivalent of having your jaw broke into 100 pieces and loosing your teeth, Jules from what I gather yours is the eqivalent of both of the above plus something I cant even begin to describe with your lungs, as I cant even imagine what your going thorough.

One things for sure, if I can contine to be who I am and continue to grow into having such strength as you guys have and this deterioration is all I have to deal with, I will class meself as real fortunate.

Strength vibes greatly appreciated wheels, thank you

Edited by pinkcloud, 21 April 2011 - 08:37 PM.

[Snakeye]

I'm sending all the strength and endurence vibes I can muster your way as well....

[ClaraTaylor]

**hugs all round**

[jules]

Pink what you are going through is terrible at the moment and I am glad I am able to offer some help. Although I am not a walker I will help in any way that I can to help you get through this rough time.

One thing I will say is that Respiratory Physio is a very specialised area of physio so your "normal physio" may not be the best person to do it with, however of you are looked after at at Spinal Injury Unit they will have Respiratory Physios there. If not your local hospital will also have respiratory physios, it may also be worth getting a referral to your local respiratory team, they will be made up of a Medic (consultant) respiratory nurses and physios. The Physios may want you to use saline nebulisers because as you find it difficult to cough you won't be clearing any gunk in your lungs, again being a smoker you will have quite a lot of secretions and other gunk. Saline nebs are just salty water which will make it easier to move anything that is settling.

xx

[Wheelsonfire]

Oi, Pinky, your analogy is all over the place, so can I eat solids or not ?

[pinkcloud]

Hi jules

oooooooooooooooo I didnt know such physios existed. After this insight, I kind of put breathing to the back of the line, me pain was me dominating concern but after reading your post, I'll be asking.

I never had physio thorouh neuro-rehab. I live too far away for it to benefit me. And the only nhs physios I met were in me gp surgery and the ones at the general hospital I found meself in - they were not 'normal', more like 'empathy starved idiots whom nearly got black eyes because they treated me so badly - I had me zimmer frame and wasnt scared to use it on them'. My physio friend is neuro-rehab trained, was manager in private healthcare, ran own business and top nhs physio dealing with terminal patients and the only one I trust. I like the sound of the specialist ones you have met so I may just put me faith in them again.

Wheels

In a land of no false teeth, wheels you are the only one to get around this by having a set made out of wolf teeth because you are hard - so bad mean people who visit this site, beware - wheels is tough and has had more needles in him from major surgery than a pine tree forest has needles on its floor after a tornado and will chew you up nd spit you out with his tough teeth

Edited by pinkcloud, 22 April 2011 - 01:02 AM.

[goose]

glad your sense of humor is still in tact. i'm fairly new to this site but not to sci. i was injured in 1986 when i was 24.
people haven't a clue as what all we have to endure. some things physical some mental mainly both. i'm always told i have such a wonderful attitude- they just don't know how hard it can be. i've been thru breast cancer twice and i remember thinking isn't sci enough to deal with.
i'm sorry for all you are going thru and wish i had an answer or a solution for you. i know words have little meaning some times so i can only offer my prayers for you.