PDA

View Full Version : Hello everyone!



BendyBill
02-23-2011, 01:08 PM
I'm new to the forum. I have been signed up and reading posts for 2 or 3 weeks now but it's taken time for me to be upgraded to being post-worthy. The wait is over!
My name is Billy and I'm a 23 year old male from London, UK. Was diagnosed with scoliosis at around 15 after noticing the lumps and bumps that we are all so familiar with and being whisked off to the Doctor. I was already at about a 40 degree Thoracic curve and a 30ish degree correctional Lumbar jobby which weren't giving me any grief. The doc said surgery wasn't necessary because it shouldn't progress but that I should come back every year or so to get it checked out. It was all good up until a couple of years ago when it started getting rather bad rather quick, and I'm now at 60deg T and 40ish L. I'm studying in my last year at music college at the moment, and have work booked over the summer so will probably be getting it sorted in September, giving me ample time to do my research!

I'm in some discomfort most days now which is affecting my work and mood. It's not really pain, just clicking and constantly not feeling straight (as obvious as that sounds), but I'm pulling it together with the thought that after September I'll be that little bit closer to becoming the Six Million Dollar Man - Which we all know is the reason we bent our spines out of shape in the first place.

Very much looking forward to meeting you all and thank you to Shari for helping me gain posting privileges!

Billy

Elisa
02-23-2011, 01:18 PM
Hello and welcome to the forum Billy. Your username is so cute and I can already tell that you have a wonderful sense of humour, lol.

Doodles
02-23-2011, 02:27 PM
Billy,
Welcome to the forum. You'll get lots of good info from those who have been there! Let the ?'s fly when you've got 'em. Janet

mbeckoff
02-23-2011, 04:12 PM
Welcome to the forum. Ask as many questions as you like. Someone will answer them

Melissa

kennedy
02-23-2011, 04:19 PM
welcome to the forum billy feel free to ask any qeustions. by the way cute username

BendyBill
02-24-2011, 06:18 AM
Thanks for all the hellos! Having trawled my way through the forum for the past couple of weeks, most of my questions have been answered already, but one does spring to mind. I have seen TiEd's wonderful video of him skiing but I'm a rather keen on snowboarding and surfing which I think involve a little more twisting. Is this doable? Does it depend on the person? If someone could reply with an inspirational post-op surfing story, that would be a great relief! If you don't have one, I'm open to something fictional :)

jrnyc
02-24-2011, 01:38 PM
welcome Bill
i do not have any stories for you...

but i do know that my surgeon told me exercise post healing depends on where one is fused...to a large degree...
fusion of complete lumbar region results in different restrictions...

although some of us just think TiEd may be a freak of nature...in a good way...as he seems to continue to defy all odds!
i wouldnt be able to keep up with his activity level on my best day, when i was in my 20's, and before my scoli, herniated discs, spinal stenosis, hypokyphosis, etc etc got so bad! not on my VERY best day!!

jess

BendyBill
02-24-2011, 02:00 PM
Hi Jess! Thanks for the response. My surgeon said the fusion will be going down to L3. He told me that after I heal properly and all fusion has done it's business etc.. I SHOULD be able to do anything I did before (apart from contact sports/bungee jumping/et al). Is this a realistic statement?

Also, looking more and more through the forum material, it seems as if scoliosis surgery without any hitches and/or post-op problems is quite rare... is this the case? Or is it just the nature of the forum, i.e people more regularly post about issues they have as opposed to the odd 'I'm doing great' thread?

Ordered the Wolpert book on scoliosis surgery and it arrived today! Looking forward to reading it and underlining the plethora of words I don't understand!! Any reviews from any of you guys?

Thanks for all help, again.

B

hdugger
02-24-2011, 02:39 PM
In general the younger you are, the fewer issues. I rarely see teenagers come back and post about problems after surgery. You're still young enough that I'd expect your after surgery experience to be more like the teenagers then like the older patients. So, I would say that you could reasonably expect a pretty uncomplicated recovery.

As far as activities, the only things I routinely hear being prohibited are things that pull your spine in two directions at once, like bungee jumping. Beyond that, I've seen young people do all kinds of crazy things after surgery.

The only long term complication I see on this forum is that scoliosis in your lumbar spine (whether you have surgery or not) may make you more prone to lower back problems as you age. Research on that is pretty hazy, and lower back problems are really common even in "normal" spines, but it might be worth asking your surgeon if he thinks that surgery will change that risk in either direction.

golfnut
02-24-2011, 04:26 PM
Welcome to the forum. Your user name is clever. I plan to get back into golf after a year which involves twisting, however, unless I do as well as Ti-Ed, I think I'll have to have a changed swing. You're young and that helps!

jrnyc
02-24-2011, 04:28 PM
hi Bill
i would write to people on forum who had their surgery to L 3 or 4...you should do great!!
you have youth...and a fusion that doesn't go to the pelvis...on your side!

jess

titaniumed
02-24-2011, 09:59 PM
Hi Bill
Glad you like the ski vid.... I used to surf years ago, and on my many trips to Hawaii, I just never had the guts. You just don’t go hop on pipeline and write home to mom, you will be in for a very big surprise. I didn’t feel like I could handle the “wash cycle” any more. LOL

Snowboarding is fine, there should be no reason why you couldn’t do it, many do. The one thing about it is the fact that snowboarders seem to be crashing all the time, which is something that you want to avoid. You can crash, it’s the hard crashes that can be scary. Been there, done that.

Welcome to the forum.

Jess
I sometimes feel like I have been blessed, and I have. There are times I feel bad here when people don’t do as well with their recoveries, and its hard for me to reply sometimes. I think that since I did pay my dues, the many years of brutal pain, that someone truly was watching over me. I was prepared for the absolute worst. Dr Menmuir is a genius, he truly is. I also have high praise for Dr Rembetski,(vascular) and Dr Halki,(scoli) they were the senior level surgical team. There was an army of Doctors there for me, I cannot list them all, its quite a few....
Ed

BendyBill
02-25-2011, 08:03 AM
Golfnut - Let us know how your swing progresses in the future!

Jess - Thank you for your words of encouragement. I've come to the conclusion that you are the Mother Goose of the forum. How does that sit with you?

Ed - Don't get me wrong, I'm pretty sure I won't be dropping any 15 footers and time soon but, at the same time, resigning myself to a surfing life of ankle snappers is something I don't like the sound of. I'm hoping I'll find a middle ground.
Also, Is there somewhere I can read your whole story? Having only been here a short while, I've only read the wonderful happy ending and would be very interested in hearing about the rest!

B

LaurieAnne
02-25-2011, 09:49 AM
Welcome BendyBill! The forum is a GREAT source of information and made all the difference in helping me get the information I needed to make an informed decision regarding surgery. You will get lots of help and support here with such a caring group of people. We've all been where you are so lets the questions roll! Take care.

BendyBill
02-25-2011, 11:52 AM
Aha! A proper question!
I have a muscle on my back that has been tense and protruding for years now. It's the one that runs next to, and parallel to the spine, from the top of the lumbar section into the thoracic (probably on the convex section of my lower curve). It has never given me any pain at all but I was just wondering, is this normal? Would this be my back trying to support the scoliosis or could it even have been something that caused it?

B

jrnyc
02-25-2011, 02:13 PM
hey Ed...i am so happy that you did, and continue, to do well! if anyone should...why not you..?!! you surely earned it...and no one knows why there are others who do not do as well...

Bill...i don't know about the Mother Goose of the forum...made me laugh...
i always think of Linda Racine, the moderator, as the "mamma" of the forum..maybe i am just the goose...hah!
i wish you the best...i am sure you will have an excellent outcome..

jess..and Sparky

http://i1085.photobucket.com/albums/j439/jrrnyc/sparky4cards.jpg

TitaniumGrrrl
02-25-2011, 03:17 PM
Bill, I don't see any reason why you couldn't snow board. I actually learned to snowboard *after* my fusion (Which is extensive - T2-L4), & I never had any issues with it. Well, other than a complete lack of coordination & falling down.

I also played contact sports (rugby) in college (4 years post op) & was perfectly fine. There are few things that this fusion has stopped me from doing!

muzzy80
02-25-2011, 03:41 PM
Hi Bill!

I saw that you were from London and someone that could me answer my question. Firstly are you having the surgery done on the NHS? If so how long from being referred to given a surgery date did you have to wait? I am also considering having surgery and wondered how long the whole process would take ( more or less).

Thanks in advance

BendyBill
02-26-2011, 09:15 AM
TitaniunGrrrl - Thanks for sharing, that is great to know! Any relation to Titaniumed, btw? :)

muzzy80 - Yeah, I'm having it done on the NHS. The Nuffield Orthopaedic in Oxford is NHS trust and is a great hospital with some great surgeons (Bowden, Fairbank). I wend to my GP to get a referral to Mr. Bowden for a further check up (I hadn't been for a while so was discharged) which I had to wait a couple of months for. I had my check up on the 16th Feb and had an email from his secretary after a week saying they had booked a pre-op consultation for the 7th April. They didn't give a specific date for the surgery but said it would be some time mid May. Hope this helps! Shoot if you have any more questions.

Anyone have any ideas about this tight, raised muscle on my back?

muzzy80
02-26-2011, 10:01 AM
Wow! I can't believe how quickly they were able to see you and give you an approximate surgery time. Am I right in thinking the whole process took about 6 months?
I am currently living abroad but going back soon to start this whole process myself. I had a private consultation with Dr Tucker who works at Stanmore. Apparently he is suppose to be very good... Am I right in thinking that you ask your GP to refer you to the surgeon you want to see? That is to say I would want to see Dr Tucker but I don't live anywhere near Middlesex when I move back....
I am in the same situation as you when it comes to scoliosis. I am have daily discomfort but nothing I can't handle but my curve is huge 70 Thoracic and 60 lumbar so have been recommended for surgery. I am scared though that I will be in more pain as a result of the surgery, I mean to say a year on from the surgery or so not straight after. This makes the decision more difficult as at the moment I have a good active life.
What do you think made you decide to have the surgery?

titaniumed
02-26-2011, 10:30 AM
Bill

Quite a few of us have upper right side rib humps, people that have “T” curves. This is seen by doing an “Adams bend” test, where you bend forward and spot from behind.

In my case, my lower curve produced a bump on my lower left side, and for years I thought it was a muscle and in fact it was my spine. It was about 10cm to the left of center pretty much at my waist line. I have seen this in many photos that have been posted here from time to time. It sounds like this is the case with you, go ahead and ask your surgeon next time you see him.

My whole story? Aww shucks... do you use that one in England? LOL No? Would be pretty funny with a British accent. I do have many threads and posts here. Start at my earliest thread, I explain many of the things I did through the years living with scoliosis. I never let it hold me back, and pretty much had a blast...I decided to wait, and waited 34 years for my surgeries. Extreme pain in my late 40s helped with my surgical decision.

Hi Muzzy. Welcome

Ed

Resilience
02-27-2011, 10:14 AM
Billy,

Welcome!

I have had the lumbar area muscle bump since my diagnosis as a teen. That was the presenting symptom and actually the "brilliant" first doctor I saw ordered an ultrasound of my kidney! But that was long ago and far away...

Many people do have a muscular protrusion in the lumbar area, I still have mine and the older I get the more I enjoy the benefits of stretching it! I have found insight from a book "Curves Twists and Bends" by Annette Wellings, an English Scoliosis patient and Pilates instructor. She describes the "bossy" muscle on the convex side of the curve as being strong, tight and overworked compared to the muscular counterparts on the concave side of the curve. Her book details stretches which have been very helpful for me.

Best Wishes!

titaniumed
02-27-2011, 11:37 AM
When I was 15, that was the first thing I noticed and wondered what it was? There was no pain at that stage, just this large thick mass...After I was in a car accident and couldn’t walk, x-rays were shot and I first heard the term “scoliosis”. I had twin 50 s

Stretching is crucial. I cannot overstate that, you can really end up super tight if you just let it be...I had a large exercise ball and would use that, it felt great. My pain started to be a problem when I was 27, and went through a few Chiropractors till I finally found a good one here in Reno. When he first adjusted me, he cracked every level up to about T5. It was such a relief since I was so tight from skiing so often. My Chiro delayed my surgeries for all those years and kept me walking and skiing.

I would sit in a chair, lock my feet around the legs, and pull myself with my arms and twist to get some of the levels to pop. I did that all the time through the years, it offered quite a bit of relief. I wonder how many here did that?

I was an early 1990 Copes patient, and he made a brace for me...Having a full fusion feels like being in a full brace, without the heat and pressure. I think this is the best way to explain what it feels like. You bend at the hips, just like wearing a brace.
Its kinda Tin mannish, only I can twist some, (see twisting thread in my sig) and I don’t need to carry an oil can for lubrication!
Ed

BendyBill
02-27-2011, 04:38 PM
Muzzy80 - yeah, 6 months seems about right. My GP is a family friend and someone I trust implicitly so left him to refer me to whoever he thought would be right. Mr. Bowden was his choice and a good one at that! I don't know much about other surgeons but I'm sure Dr. Tucker is perfectly fine and if you ever have any problems or queries, there will be information on the Internet. Or you could search posts on here as you'll almost certainly be able to find someone who has experience with him.
As for the surgery, I just think it's something that needs to be done. My progression has been fairly fast over the past couple of years and so has the increase in discomfort. Also, I know surgery is an inevitability and right now I am only 23 so should have a slightly faster recovery. However, just like you, I am worried about my quality of life afterwards; not so much about complications that could extend my recovery period but more about not being able to keep the active lifestyle I lead now.

Ed - are you happy with your decision to leave the surgery until so late? If you could go back would you do it all the same?
Thanks for the heads up about stretching that lumbar muscle. Don't want that to start giving me problems!
I also do a fair bit of twisting and clicking; One being AMAZINGLY satisfying by clicking a rib that eases some pain that is referred to my shoulder.
The tin man did alright if I remember rightly. I also think he was secretly a bad-ass. Seriously, Wolverine wouldn't know what hit him.

resilience - I'll be sure to get that book. Goodness me, by the time I have surgery I'll be able to open a scoliosis library!

B

BendyBill
03-03-2011, 06:50 AM
Hi Guys,

Quick question. If you get instrumentation from T2-L3, for example, do they fuse you from T2-L3 also? Does it depend on the patient? If not, and the only fuse a smaller section, which do they normally fuse?
Apologies for the banality of the question, I've been looking for the answer through research but for some reason cant find anything!!

B

kennedy
03-03-2011, 09:51 AM
well it normaly 10. but i have 11

BendyBill
03-03-2011, 11:25 AM
Kennedy - Your post reminded me of the amp scene in 'This is Spinal Tap'. Marvellous. Also, unfortunately (after reading your post, getting confused, and re-reading my post), I have reaslied my question is unclear, to say the least. Here we go again...

When you have the titanium/steel instrumentation whacked in your spine (hypothetical instrumentation from T2-L3), do you also get the same area fused with a bone graft (hypothetical fusion from T2-L3)? OR do you get smaller sections fused?

If this isn't understandable, I apologise!

B-Dog