View Full Version : Very, very scared.

12th October 2005, 06:21 AM
Hi everyone. I'm completely new to this site but I think it's exactly what I've been looking for. I have never known anyone else to have this problem. I can't believe there are so many of us!
A little about myself; I am a 36 year old mother of 2 who has a hyperkyphosis of 32 and a hyperlordosis of 30. My kyphosis is way lower on the thoracic level than normal people and more compact.l I have suffered from this for 20 years now and have exhausted all noninvasive therapies . . pt, massage therapy, exercise, medications. I am being fitted with a custom brace on Thursday. My back is so nuts that they have to cast me to get the correct fit. I am having another MRI on Friday and a follow-up with a spinal surgeon next Wednesday. I can't begin to tell you all of the pain, I know you know so well. Sciatic pain, pinched nerves, numbness, burning. When I stand I feel like my back is collapsing. I am now using a cane. In addition to what I have told you, my Dr. is also suggesting that I have saggital imbalance, meaning my head is not centered correctly over my body, it is more forward. Has anyone had this problem as well? Once I find out what type of surgery I need I am thinking of going to the Cleveland Clinic in Ohio to have it done. I live in Ohio by the way. I am so scared. Not only for me but for what this will mean for the family. I'm also wondering how long the hospital stay is and how difficult it is getting home. If I decide to have the surgery in Cleveland that is about 4-5 hours away from our house. Anyway, sorry this is so long, it's just been so many years. I'm really looking forward to getting to know everyone here! Lisa

12th October 2005, 11:06 AM
Welcome to SSO! :welcome2:
I know exactly what you mean about finding this site. I'm 39 and had surgery for scoliosis when I was 13 but it is only through this site that I have been able to get to know other people with scoliosis/kyphosis. It's terrific that you will be able to get surgery done - hopefully this will relieve the pain. We'll look forward to hearing how it goes.
What ages are your children? I have a girl who will be six in December.

12th October 2005, 11:12 AM
Hello, and welcome to SSO!!
Sorry to hear you're in such pain. :-( I hope the surgery will alleviate this for a great deal. We have quite a few members with kyphosis here, and you're not the only mother. John is having his kyphosis correction next week. I hope you stick around this fab place. Take care,

12th October 2005, 11:14 AM
:welcome: to the site
It rocks here

Im Lizzie 15, had surgery for a double scoliosis 4 months ago. Hospital stay is usually between 7 and 14 days, although some people are home on the 3 day post op... dont rush yourself though.

I have a 3 hour drive to my hospital, and its not all smooth motorways either! I was fine getting home, but tired when i got there. They wont let you leave until they are sure your ready so dont worry about getting home, your not aloud to drive, but if you cant get yourself a chofer they'll get you a cab or take you back in a minibus or something :-D

The imbalance thing, i had that but my head was over 2 inces off of the center of my hips, to one side.

Any questions PM me or E-mail me or whatever and ill get back to you


12th October 2005, 11:24 AM
welcome to SSO lisa, i'm glad you're not alone anymore. i had surgery earlier this year and am fusing T11-L3. you should be ok with getting home if you stuff the car with pillows, i had a three hour journey back from the hospital.

i think all of us who have had surgery were scared beforehand but what some of us try to think of is what life will be like afterwards - you say you walk with a cane and so on, and i can imagine this impacts on your family life and it's obviously getting you down too, but if you have confidence in your surgeon and let them do the best for you, then your life may be totally different and hopefully you can throw away your cane.

we're here to answer questions and offer support, there's nearly always someone else online :squeeze:

12th October 2005, 11:42 AM
The longer you spend on this forum, reading about the good results people have had from surgery, and how happy they are now, the better you will feel about the whole thing.
Surgery for scoliosis has come a long way in a short amount of time, it's amazing what they can do now *Just check out the member galleries*
You'll realise in time it's nothing to worry about. If you have fears about not being able to look after your family for a while. It is a small price to pay for being straightened up, hopefully relieveing a good deal of pain, and allowing you to continue in a more normal and accescible way. Without your came perhaps?
I haven't had surgery yet so cant offer you any comments on what it is like getting home.
But so many ppl have had surgery, and as u have already seen they were able to give u good reports. :)
I am looking forward to hearning more from u. x
By the way I am Emily (20) x

12th October 2005, 01:41 PM

Welcome to SSO

My name is Claire. I am 35 years old and a mum of two . My children are aged 11 and 6.
I had surgery 11 weeks ago.
Feel free to ask me anything , I know what its like coping with surgery and a family.
Trying to reassure young children that mummy will be ok is difficult.
Hope everything will work out for you soon.

Claire xx

12th October 2005, 10:46 PM
By Jove, all these Kyphosis peeps. I feel overwhelmed. Welcome!

12th October 2005, 11:10 PM
Yes therss afew of us around now Phil we soon be over taking the Scoli's. Hi Isbarr welcome to the site i'm another with Kyphosis. You should find mos of your answers here you'll also find were a friendly, if not slightly bonkers bunch of people

Take care


12th October 2005, 11:44 PM
Hi Lisa! :welcome2:
I know what you mean when you say you feel relieved that you have found us! I was excatly the same! This place is like a rock, such supportive and friendly people!

Abbi x :-)

13th October 2005, 09:54 AM
:welcome: Hi Lisa,

Welcome to sso, glad you've found us at last! As you're about to find out this is a complete "madhouse", so mix with us at your peril! We're here for you whenever you need us - truly!

My name is John,36 from Ayrshire in Scotland. I have Kyphosis of 80 degrees with a respectable scoliosis of 70 degrees. I am having my correction next week at QMC in Nottingham which is 5 hours away from where we live! My partner & I are basically upheaving our lives for the next month!

Incredibly, I hold the crown for "scared of surgery"! & beleive me when I say the guys on this forum have played a major part in boosting my confidence enough to go through it! My partner obviously is "chief supporter", however sso has just pushed me forward enough!

By the time I've had my surgery everyone will need a holiday :lol:

Some people here have had surgery & are all very positive about it & some havent had or need surgery & are still positive. So no matter what your back throws at you, you'll get through it & we'll help.

Welcome again,


13th October 2005, 12:54 PM
It's true we will need a holiday! Nah it's been good John, we are looking forward to see you saying "I'm soooo sorry I was such a wimp about nothing" :D. x
Anyways i'm runner up to steal your corwn prolly.

13th October 2005, 01:09 PM
Originally posted by zerodegrees@Oct 13 2005, 07:54 AM
By the time I've had my surgery everyone will need a holiday :lol:

Well you work for the right people John, is'nt your job just one big holiday :glee:

14th October 2005, 12:31 AM
Welcome to SSO Lisa :wave:

Sorry I'm late... I'm 17, and had surgery for scoliosis with considerable kyphosis and lordosis last July and this March. There's not much left unsaid, just that don't be surprised that you've got a custom brace - practice here in the UK is to give everyone a custom cast brace. I rarely hear of people who are given stock off-the-shelf braces.

14th October 2005, 01:01 AM
Hi Lisa, welcome to SSO! I'm glad that you've found us :D

I'm Toni, I'm 30 and was diagnosed with Infantile Idiopathic Scoliosis when I was 6 months old. Looking forward to hearing more from you :-)

14th October 2005, 01:12 AM
Wow ur 30! YOu look like 22 in ur pics. x I thought u were about 22.

14th October 2005, 01:35 PM
Originally posted by RocketQueen@Oct 13 2005, 11:12 PM
Wow ur 30! YOu look like 22 in ur pics. x I thought u were about 22.
Toni has a very good surgeon ;-)

&thats me of my heals again*

14th October 2005, 01:44 PM
yes mark, she had a very good SPINAL surgeon, she doesn't need any kind of plastic surgery :P

Little Ali
28th October 2005, 09:07 PM

I'm Ali,24 and have Kyphoscoliosis. I had a spinal fusion 12 years ago which has now fallen aprt and it looks like I'll be having at least 1 op in the not so distant future.

It's great you found us here. It's a brilliant site and the people really are very helpful and supportive!

Amazed Jean
29th October 2005, 04:36 AM
Hello, Hey I am 54 and have kyphoscoliosis with three curves - 150-88-55 (they think) Nothing is positive. I have never had surgery or braces etc. I don't reccomend following in my footsteps. I would love to visit with you anytime. There aren't as many active people on this side of the pond. Both sides are wonky - spines and minds. Welcome.

31st October 2005, 01:02 AM
Hi again everyone! :wave: Gosh, I'm sorry I haven't been back on the site in a while. I can't believe all of the responses! This is so great! Here is a little news from me: I saw the surgen 2 weeks ago, I do not have sagittal imbalance. That is great news! I do however, have 2 thoracic disks that have ruptured and are pushing into my spinal cord. The surgeon suggested that I have a diskectomy with decompression as soon as possible and then a spinal fusion to fix the kyphosis. I'm at this point waiting on the Cleveland clinic to get back with me for an appointment time with the surgeon. In addition to using my cane, I now have a wheelchair for whenever I can go anywhere. Tomorrow I have an appointment with a pain specialist. Have any of you guys ever see one? I have taken so many pain pills over the last few months, nothing is working anymore. I'm thinking of asking for the Duragesic patch. Anyone used it? My custom brace is in, finally. I'm getting it on Thursday! Yeah.

31st October 2005, 01:08 AM
oni (Tonibunny) has been going to a pain clinic in Sheffield, England and has just had a corsett made to help manage her pain. I think they may be a thread in the general forum from her.

Sorry I don't know anything about the patches someone else on the site may though.

Take care and i hope you can find someway of relieving your pain


31st October 2005, 01:14 AM
Thanks, Mark, I'll check it out!

31st October 2005, 01:18 AM
Toni's post (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2263)

31st October 2005, 01:26 AM
Another post you may find interesting (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2069)

31st October 2005, 01:36 AM
I just been looking for it and i can't find it maybe if you drop hr a pm she may have some good tips and advice for you

take care

31st October 2005, 11:23 AM
mark i think it's been moved to the new bracing forum perhaps, when the SSO refit happened? :D