52 replies to this topic

[rue2you]

Pinkcloud - I'm so sorry that you are going through this. Wish I had something profound to say but I don't. I will be praying for you AND sending strength your way! Hang in there! ;)

[pinkcloud]

Snakeye,chel,clara,goose,rue2you

Words may not say it all, but the feelings behind them speak volumes - you all post wise, caring posts and I enjoy reading them all. You choosing to spend your time sharing your good news and sad news to help yourself - shows you care for yourself and I like it when people do this - you also post to help others, and in my book - who even needs to look deeply into words when what really matters - your care for others, shines out.

After all, I didnt get this positive and brave enough to share me true self on the internet by meself, if it wasnt for you lot, I would never had got this courage.

So thanks to you all :-)

[mellowgator]

here's a forum that deals with syrnix,




http://syringo.blogs...g-problems.html



hope this helps,

mellowgator

[Edinburgh Colin]

I have to say the strength of you ladies is amazing. Pink you sense of humour and writing style are refreshing and as a proponent of humour being a good medicine I love it. You have to make fun of it or you become lost. Jules likewise I just want to shower hugs, you girls are so strong and beautiful in the way you write about how you are coping and looking forward it's truly inspirational.

Jeanette is clearly suffering but I'm sure she is drawing strength from what you ladies post, and that will help her.

p.s. Woofy your beautiful too! (In you own unique way!!!)

I feel a good summer coming on and hope seems to be springing forth lets try and keep it going and I hope you ladies will blossom as the year progresses.

EC.

[Dillon]

I have no answer for you, except to wish you the best of luck with your health problems.
All I can suggest is that you get as many opinions and visit as many doctors who may be able to help relieve your pain and physical issues.
Good luck!

[Jeanette]

Pink,
god has blessed us with a wonderful friend who is so willing to help others. You will be in my prayers forever. may your pain lesson and hopefully you will feel better soon. I appreciate all the encouragement you have given me.
I hoe I will be as good a friend as you to all whom I meet here.
Thank you for caring and making me not feel alone.
Jeanette

[goose]

pink

hope you've had a good day. i'm from the south where all the bad weather happened last night. the last i heard over 200 were killed in my home state. saying all this,reminds me someone always has it worse.

i know when in pain it's easy to want to give up but you HAVE NOT. that says alot about you. your posts have always been helpful to me and others.

oh, with all these birthdays around here surely someone will share their cake with us.

will you be watching the wedding?

[greybeard]

Edinburgh Colin, on 28 April 2011 - 04:21 PM, said:

I have to say the strength of you ladies is amazing. Pink you sense of humour and writing style are refreshing and as a proponent of humour being a good medicine I love it. You have to make fun of it or you become lost. Jules likewise I just want to shower hugs, you girls are so strong and beautiful in the way you write about how you are coping and looking forward it's truly inspirational.

Jeanette is clearly suffering but I'm sure she is drawing strength from what you ladies post, and that will help her.

p.s. Woofy your beautiful too! (In you own unique way!!!)

I feel a good summer coming on and hope seems to be springing forth lets try and keep it going and I hope you ladies will blossom as the year progresses.

EC.

Got to say EC said it all. You ladies are amazing. Thanks for sharing your stories and your wonderful attitudes to life.

Not too sure I'd describe WOF as beautiful though! Unique? Oh yes!

[pinkcloud]

Thanks ec

I reckon our strength comes from the same place your strong hands do in supporting us ladies with bra dilemas (only joking mr cloud )

Jeanette, the love, pulls at me heart strings. I was listening to terry pratchett (famous author) on euthenasia and he said 'in order to beat the beast, first one has to seak the name of the beast out loud'. I think Jeanette sure has the confidence to deal with sci - its only her left guessing as to whether it is or not sci by the professionals thats holding her progress back. She schools her own children so never gets that rest, lay out and collapse time some of us have when our children are at school (me anyway) gets. Whow - just like you on here who have young kids or work. I just couldnt do it anymore, I'm too worn out I cant wait for her to finally get peace she deserves by getting a proper diagnosis, then god help sci - like all you lot on here do, it does not stand a chance of dominating your lifes
[/quote]

Thanks for the conpliment EC, altough I never think what i write/say is funny, lots of people in me life do. I think its because where some people have screw loose, i never had a screw in the first place I think its me frank honesty and that i never think before i speak or write that confuses people but hey, it aint done me no harm in life so i must be doing something right whereas you ec are a natural fuuny guy and always put a funny spin on things :-)

And Jules tis people like her that encourged me to be the person i am today, her attitude is infectious and shes a top lady thats for sure and goose if i ever get cancer, i'm coming to you for support, you are a brave lady :-)

Edited by pinkcloud, 29 April 2011 - 02:16 PM.

[pinkcloud]

Thnks for your thoughs Dhillon

Goood advice that, I'll carry on asking them best consultants every question i can think of and will share me knowledge learnt from them on here so it helps others too ;-)

[pinkcloud]

Oh heck Goose this is terrible news, I'll be praying it wont hit your area, you really dont need to have trouble like that after all you have been thorough already. I would want to be away from me kids just incase there was a disaster and i couldnt find them. Mind you, i would have to be real strong like you and not let that fear overtake me. You are brave living where you do. Yeah we sure are lucky not to be hit by such sudden disasters here in England and this i am real grateful for.You as a comminuty must be so strong to live with such natural disasters.

I have recorded the royal wedding. I already liked price william but when i learnt he is the pilot of the helicopters for mountain rescue and transporting hospital patients too - well, that was it. I now love him.

I may get slandered for this but that kate - she dont look kind enough for him. I suppose thats me being picky - (i wish i could say i was good enough for him but i'm not, i would never want to be ordered about and stick to timetables set by the royal world for a start) - put it this way, if she does turn out bad, william will get everone on his side i reckon. apart from that i love the romance and fluffness of it all, warms me heart and i true-ly hope she is nie really :-) and i am wrong

[pinkcloud]

Thnks mellow for taking yor time to find this.

I'll have a good read of it over the next few days.

Taking a quick glance of it, seems like the syrinx issues are not taken too seiously as cause of pain

Lucky for me, me doctors can 'see' me neurological signs and deterioration both on post-op mi with the amount of bone growth and the area which its in. Me new neurological deterioration symptoms could be bone growth or syrinx. Either way, no surgeon will now operate.

Still, i am feeling lucky at least because i am now labelled as such so making me comfortble is what they are trying to do. Plus I never know, I might get better now I'm resting.Medicine moves quickly. And theres lots of people out there with symptoms whom are not taken seriously and i would rather be in m position then theirs, thats heartbreaking to me.

[Wheelsonfire]

Me thinks unique is maybe too strong gentlemen,um,how about..... Unusual or slightly unorthodox in a quirky kinda way....although,beautiful sounds close,too!!

[Edinburgh Colin]

Wheelsonfire, on 29 April 2011 - 07:27 PM, said:

Me thinks unique is maybe too strong gentlemen,um,how about..... Unusual or slightly unorthodox in a quirky kinda way....although,beautiful sounds close,too!!

How does blowing your own trumpet sound!

[Wheelsonfire]

I prefer, beautiful,has a nice ring to it,don't ya think.....

Beautiful Woofy!!!!

[Jeanette]

To all my friends here!
I can not express in words what your support has meant to me since I found this group April 10
You have lifted me up and carried me when my legs gave out and when my hands stopped working. It is because of you all that I spoke with my pain doctor about a spinal cord evaluation
I can not express in words what this means to me EC and Pinkcloud and all of you. I will continue to soak in strength from all of you. I love working with my children and you are right pink I don't get the break that a non homeschooling mom does, but it is what I have been doing for five years. I would be lost without the job of teaching my children.
Little story, my youngest did Kindergarden and 1st grade at public school she was ot reading at end of 1st grade though the K teacher who tested to make sure she was ready for K, agree K it is. By the end of 1st grade the school had done nothing to help her read they ignored her fine motor skills that were very weak thus causing her printing to be like a 3 yr olds
I decided it was time to find another option for school. I found California Virtual academy it is a public charter school.
t is reading like crazy she is still below grade level by only 1 yr now. she is receiving special education services including OT and speech. She can now write in cursive. She struggles with spelling and it is very likely she is autistic mor Aspergers than traditional autism. She has blossomed and is doing well. It would break my heart to put her back in the brick and mortar school after all this progress. The joy she gets from reading and now taking care of me I can't take that away.
Yes it is stressful because certain things have to be done at certain time and I have had to depend on the kindness of others to get my kids to their weekly class.
I think homeschooling, Kevin's cancer, 3 yrs ago and two surgeries help prepare me for this challenge that I am currently enduring.
I would. Be less sane without my children here. I can't imagine going up and down the stairs without my son and daughters to make it safe for me. I can't imagine going up and down the stairs to get food or more to drink with them here. Shannonis autistic, if she was diagnosed at age 3 or under she would have been diagnosed with traditional autism but because she was eight, we were told at age 2 yr 8 months that she was mentally retarded because she was not talking she was co,pletely nonverbal at age 3 this is when we started therapy. she was never challenged in grade school or middle school. she has sored like an eagle since joining CAVA in 8th grade. sheis a senior but will be graduating next June because she had one year, her sophmore year where she had to repeat her classes . It was because of dad's cancer and how that affected her and her grades her sophomore year. But she will also be able to take some classes at the local college for both HS and college credit. She was privately tested and has an IQ is 121! amber is a freshman in HS and Bryan is in 7th grade he is also on the autism spectrum He did not talk until after he was 2 1/2 years old ( we caught it early and got him therapy earlier. )
Please keep writing
it is common to have multiple children with autism I am blessed with mine. Bryan was doing multiplication at age 3. taryn was doing complicated fraction problem in 2nd grade and she can write music in her head and play it on the piano and stil, remember the piece years after. Shannon can tell you what day of the week your birthdy is in what year.
I am blessed to have my kids home with me. They are my sanity. However, at the end of each quarter when samples are due it's super stress time.

The other thing I wanted to tell you about is that I have my degree in history and I minored in English. I was in the Air National .guard for 14 years. I owned my own professional photography business I specialized in on location baby and children photography. I did that for 5 years then my youngest daughter put me on bed rest for half the pregnancy so the busines went under.

Okay I think I have gloated about me for long enough.
Back to schoolwork,
Keep smiling and if any of you all think of a good nickname l
For me let me know.
Jeanette

Edited by Jeanette, 29 April 2011 - 09:27 PM.

[Jeanette]

Pink
What you have said makes sense. My neurologist told me beforee she told me I was 90% healed in January. That I need to take the Nerve medication neuron tin aat the time now CYMbalta because they work together.
Another thing I have been told by my pain doctor ( much smarter than neurologist,) was that sometimes the meds need to bee switched for a month or so in order to give the body a break. For instance going from Flexeril to another MR like Valuim for a bit so the body is not craving more and more of the meds to feel better.

There is one thing I believe in far above the doctors and the medication and that is the power of Prayer. since joining this group I have added all of you to my prayers. I will apologize if I offend anyone because I AM talking about my beliefs I mean no offense if yours are different. I know without a doubt that God answers prayers and HE only puts on our plate what He knows we can deal with. He also puts people in your path that are able to help you get through your trials. I believe so wrongly that I was supposed to find this group and all of you as I deal with my injury.

You have lifted me up when I felt I could go on no more. It reminds me of my favorite poem called "Footprints( in the sand) Through others, Jesus who knows our burdens, it carrying me along in the sand. And it is through this group that is helping him,

I can not express enough how thankful I am for you all helping me.
Do you have a tens unit Pink. It is a wonderful little gadget that helps me when the spasms in my legs get really bad. talk to your doctor about it. I believe it will help you if your spasms are anything like mine.
Jeanette

pinkcloud, on 20 April 2011 - 09:52 PM, said:

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

[qbounce]

pinkcloud, I've had quite the journey dealing with many different teams of Neurologists and Neurosurgeons to try figure out what's been causing my loss of sensation and function that began in 08, three years post injury. Let me first start off by saying, all the doctors I met were experts in their field, and they all had the right answers . . . . for them. The problem I had throughout this process is that none of them had the right answers for ME!

It's really up to you whether you want to accept their word as gospel, or whether you decide and get another objective opinion. I say objective because when a different doctor who has never done any surgery on you before, looks at your charts and sees a mistake, he's got nothing to loose by telling you this. But, when the doctors who have done surgery on you see a mistake, they obviously have much more to loose and may prefer to sweep things under the rug. This is just one reason I'd recommend getting a second opinion.

Another reason I suggest you get a second opinion is because, as I stated above, they all have the right answer. It may not bode well with any one of them to second guess their diagnosis . . . . . and that's just TOO BAD for THEM! Don't worry about their feelings getting hurt, or who you owe your allegiance to most, because that my dear, should be to yourself!

If you continue losing sensation/function, look elsewhere for help, and keep on looking until you get an answer that makes sense for your benefit. I believe in positive reinforcement too, but I don't think complacency in your condition is the only option.

[pinkcloud]

Thanks qbounce

Luckily for me I was a secretary to consultants, and ran their businesses, and because i'm not a medical proffessional so many patients spoke with me and I must have had hndreds of different people share their inner most fears and happy news with me (i am soft hearted and they could talk to me on a 'one of us level' because doctors and nurses are so 'professional - in a very good way I must add - but were thought of as being 'up there and professional' where i was thought to them as 'a friend'.

Me neurosurgeon who did me op called it a success. And, yes it was in sugeons view as I didnt die and i could walk. I didnt want to hurt his feelings and knew if I went to see others, he would hear about it and i made sure i got word to him it wasnt because i didnt trust him. You are right you picked up on i didnt want to hurt their feelings. Yet i expect no less as you are wise in me eyes. I did me research, found out who was the best in thought to professionals and what i heard from patients meself. None of the surgeons will touch me qbounce, I've done a years non-stop research. One will try for me but i'm told there is soooo much bone around the cord, to cut into it would collapse the spine. Plus I just dont have the bottle to have surgery thorough the front of me chest. Its so rare i am told, t7/8 in england. If i lived in america where theres been more cases of thoracics and so more surgerys have been done i may have thought about it.

I know it seems crazy for some that i'm accepting me decision to just accept, but i am sooo tired of searching, I really do trust me consultants and am so very grateful to them for looking after me. I know they will do all they can to help me and if any new news comes to them, they will help me. In me mind I keep telling meself 'me spinal cord is waking up so has a few problems re-building itself'. At least that way I can think positive in me mind. The reality is that it may not do but it stops me panicing when the weakness above injury starts a bad run of things - and if i can keep me head together when all else is failing, i got more of a chance of living the best out of life. In the meantime, I'll keep reading on here, listening out for new developments and remembering at least i can walk to the toilet and o out sometimes when people are with me. You are one of me inspirations and as long as i stay on this site, i'll do just fine

[pinkcloud]

EC and woffy

To all of us who have dared to get past the scary posts he writes and like woffy, heres a little tune to sum woffy up - not the marriage part of course - that part is for all the mrs woffys with dungeons on here - but the rest rings true for the rest of us gals and guys who 'live' with woffy in apparelyzed land :-) just he has cats not a big black dog



EC i'll find you a song for yoyu somwhere too

[pinkcloud]

Jeanette
footprints in the sand leona lewis - click on link below to see

Thanks for sharing such an honest lovely life story, me name suggestion for you, well its 'super sci mum' sounds just perfect for you I think. Nothing wrong with shouting from the rooftops of being a survivor of life, because if you wont shout it, i'll do it for you.

I too believe in Jesus and I am one to keep quiet on the subject, describing him as me imginary friend to anyone who asks - I'll mention her name again without taking the liberty of asking first, yet I mention Rue2you. For some heartwarming posts regarding God-ley thoughts, hers are ones to read. Click on her profile to view her posts

[qbounce]

pinkcloud, thanks for rephrasing to me why you've chosen to accept and hold strong the reasons why you won't consider, at this juncture, other options. I understand and respect your decision, especially in light of how more surgeries can easily lead to further loss of function. Be well!

[Wheelsonfire]

Oi, Pinky, ya must have got the moosic mixed up..

Now this is.....