View Full Version : I'm another newbie!
14th August 2004, 06:44 AM
Hi, my name is Melissa. I'm 27 years old. I had my first surgery in 1989 to correct a 57 degree double curvature with CD instrumentation. It's now corrected to around 30. In 1997 I had revision surgery and had all the hardware removed. Over the past 2 years, my pain and immobility has been increasing a lot. I have 5 bad discs now, above and below the fusion, facet joint syndrome, and a lot of nerve and tissue damage. Anyway....I'm just frustrated and looking for hope! :woe: I have an HMO, which makes it a little difficult to see any doc that I'd like to.
A little more about me, I live in Huntington Beach, CA. I am a newlywed of just 9 months :niceone: , and have an incredible husband. I love music, the outdoors, and children.
Anyway, I just wanted to introduce myself, and say "hello"! I actually "met" Titch on a forum last year, and remembered her name when I found this new one. =)
Looking forward to talking with you all! I welcome any suggestions or advice!!
14th August 2004, 07:32 AM
Hello Melissa! :niceone:
I understand you're frustrated... I'm 21, I live in Belgium and I had surgery on a 85°/50° scoliosis in 1999. I'm fused from T3 to L2 with Isola rods, the curves are 35°/30° now and I have no problems so far... I do fear the future after reading stories like yours. :-(
I'm sure you'll find here the support and advice you're looking for. You're always welcome if you need a hug or if you need to be cheered up. There are a few other Californians on this board! :-)
Oh, what is an HMO?
14th August 2004, 08:00 AM
WOOHOOO!!!!!! Another one form Cali!! hehe hey there my name is Kayla I am 14 andlive in San Diego California
14th August 2004, 09:16 AM
Welcome to the site
14th August 2004, 10:13 AM
Hi Melissa! Welcome to SSO. My case is so completely different from yours that I can't begin to offer suggestions, but there are some very knowledgable people here who will be able to help. And we'll all give you support.
A health maintenance organization (HMO) is a prepaid health plan. As an HMO member, you pay a monthly premium. In exchange, the HMO provides maintenance care for you and your family, including doctors' visits, hospital stays, emergency care, surgery, lab tests, x-rays, and therapy.
A health maintenance organization arranges for this care either directly in its own group practice and/or through doctors and other health care professionals under contract. Usually, your choices of therapy, diagnosis, doctors and hospitals are limited to those that have agreements with the HMO to provide care. However, exceptions are made in emergencies or when obviously medically necessary.
From wordIQ.com (http://www.wordiq.com/definition/Health_maintenance_organization)
14th August 2004, 10:38 AM
Ohh, thanks Kim! :niceone: So it's like an insurrance company but with a lot more limitations...
14th August 2004, 11:37 AM
Hi Melissa and welcome.
I'm 36 and have a post op curve of 110 degrees from my 1983 surgery.
My problem with discs seems to be above the level of the fusion and the right shoulder and neck causes some aches and pains.I can currently live with it and manage to keep my daily life on track.My x rays show degenerated discs below the fusion and no problems in the neck area which is weird as this is where it hurts and I've no explanation for it.
My insurance doesn't cover outpatient expenses where I need to go and I expect to have to pay for MRI scans out of my own pocket.I guess I'll just have to bite the bullet and see what's going on.I've seen your posts on the NSF forum and I noted your question about pregnancy.I have two children and so far they don't have scoliosis.
You're not on your own and we'll try to help in any way we can.
14th August 2004, 04:02 PM
Hi Melissa!*!*!*!*! WELCOME!*!*!
14th August 2004, 06:05 PM
Hi Melissa :-) I remember you too. Welcome to the forums here!
As you're in California, I know it's a large place, but is there any chance that seeing a doc at UCSF would be covered? There are some really great docs there.
I don't know whether she's still visiting the board, but HRod84 has recently had a successful low lumbar disc replacement surgery, and Pikey had a cervical disc replacement surgery earlier this year, so there is hope for help with disc degeneration. Also I see from Sins post that you're at the NSF forums - a woman who moderates there, Linda Racine, has had a lot of success in treating the symptoms of her degenerated lumbar disc with physiotherapy, specifically core strengthening so that she has good abdominal muscles to support the back and take pressure from the disc.
Anyway, again, :welcome2: :D
14th August 2004, 07:00 PM
welcome to sso , my name is denise i am 24 and i am from the uk
14th August 2004, 07:32 PM
Welcome Melissa!!!!! :welcome: :welcome2:
I'm 15 and have idiopathic scoliosis in a double-major curve 50/30, I live in Oklahoma, USA. Again, welcome!
15th August 2004, 07:33 AM
Wow, hello everyone! Thank you for all the greetings! You guys seem like a great bunch of people! It also sounds like you all have varying situations, from one end of the spectrum, to the other!
Titch: That's good to hear that some people are having success with disc replacemenmt. My doc doesn't want to go there yet, since I've got 5 of them...he wants to see more studies and cofirm that it would be a good option for me. As for UCSF...that would be wonderful...however my HMO will not cover it. But one of these days when we have enough money, I'm dying to go see someone who has much more expertise!
Sins: Wow, a 110 post-op. You're a professional at this! =) As for my pregnancy question, I was wondering more about the actual pregnancy....how it was to go through pregnancy with such a bad back.
Kayla: Hi! I actually just moved up here from Escondido 9 months ago....so I truly am a San Diegan at heart. = )
Everyone else: Thanks again for the welcome! I'd love to help in anyway I can, as well!
15th August 2004, 01:13 PM
Hi Melissa welcome to our family :wave:
My name is Leona, I'm 28 & I live in Scotland. I'm obsessed with books, chocolate and hockey. I support the Mighty Ducks but don't hold their Disney ownership against me :D
I hope to see you around the site and that you enjoy it here :squeeze:
15th August 2004, 01:31 PM
Hello Melissa welcome to SSO :welcome:
My name is Lieve, I'm 31 and live in Belgium.
15th August 2004, 06:48 PM
15th August 2004, 07:10 PM
Sorry I'm late, it's been a busy weekend :-)
Welcome, I'm Leen, 20y old and live in Belgium. I'm 6 weeks post-op from double curves.
16th August 2004, 01:40 PM
A bit late, but welcome Melissa. I'm a bit different from the others in that I'm the parent of a child diagnosed with infantile scoliosis - there aren't many of us. Erin is nearly 2 and is currently being treated with serial plaster casting. While I probably won' t be able to help with any questions you have, I thought I'd say hi.
17th August 2004, 03:44 AM
Nice to see you. Sorry to hear about your pain. I get the impression that decent health care in the US is only available to the rich, famous or well employed.
There are a couple of good threads here about pregnancy with bad scoliosis - I'm sure Titch or Sins will point them out to you.
17th August 2004, 03:47 AM
Hi! WELCOME! Sorry I am late.. just got back from holidays. Hope you enjoy the site!
17th August 2004, 04:23 AM
Thanks for the additional welcomes! Sounds like we have an international bunch, here! How cool! :-) I have an appointment with my doc tomorrow, I just can't handle the pain anymore. I'm just going to "lay it all out on the table" and ask him to help me. He's a great support, but I'm afraid his hands are basically tied right now. I have to either decide not to try to have a baby right now so I can go back on meds, or just tough it out. I'm really torn. Hope everyone is doing well!
17th August 2004, 08:00 AM
Welcome to the site.:welcome2: Sorry I haven't got around to welcoming you so far. :-)
I am 38 and had a spinal fusion (with Harrington Rod) in 1979. I had and have quite a severe thoracic curve (part of an S curve) of more than 100 degrees. I have very restricted lung capacity but suffer from little back pain. I had a baby nearly five years ago (Dec 1999) and experienced no major discomfort during the pregnancy. The ligaments do loosen up and it's amazing how the body accomodates this extra little load. :-)
There is a pregnancy thread here but it currently only includes stories from myself and Sinead, which isn't at all representative as both of us have 100 degree plus curves and have restricted lung capacity: http://www.scoliosis-support.org/modules/i...s=&showtopic=74 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=74)
I can only imagine your dilemma of having to decide between taking your meds or embarking on pregnancy. I guess you're the only one who can decide that? Perhaps a physio or yoga instructor could work with you to deal with your back pain in a med-free way during the pregnancy?
17th August 2004, 05:56 PM
Hi, Pauline. Thanks for your reply! I'm glad to hear that your pregnancy was n't bad. =) I'll bet that reduced lung capacity is tough, though? Thanks for your suggestions regarding the pregnancy. I'll talk more with my doc today and see what he has to say. I've tried physical therapists in the past, and all 3 of them were stumped by my condion and didn't know what else to do. I've just got to find the right one, I guess! =)
17th August 2004, 06:09 PM
Ok Melissa Baby decisions...........
I guess only you can make up your mind if the timing is right for you.
From my own experience pregnancy didn't make my pain any worse.I did have some upper back and lower neck aches and pains but nothing severe.I also took Folic acid supplements for several months before and for the few weeks of pregnancy to promote healthy spinal growth and help prevent neural tube defects.
My obs/gyn gave me the first appointment of the day in case I had pain.
From 28 weeks onwards I actually experienced better mobility in my neck due to the increase in fluid between the joints. I had some help an info from an obstetric physiotherapist and I'd highly recommend this if you become pregnant.
The first 28 weeks were easy as the abdominal muscles were tight and strong on a first pregnancy and shouldn't pull you to the front.From week 32 things feel a bit difficult but I got a nice reclining chair and put my feet up and that helped a lot.
If you do experience a lot of back pain, it will be difficult.A friend of mine was hospitalised with back pain during a difficult pregnancy and all she got was one pethidine injection to give her 4 hours sleep a night.She didn't look pretty by the end of it.
Noone can predict who will and who won't have severe back pain during pregnancy.It's a gamble we all take.If you can live with your pain now chances are it won't get too much worse.
I found that I did most "damage" to my neck after the pregnancy, incorrectly lifting and holding the baby during feeding.All this is avoidable.
If you have any more specific questions please ask and i'll do my best to answer them.
18th August 2004, 07:58 AM
Wow, thanks for the thorough information! You are totally right; no one can predict how one's pregnancy is going to be. I just am in so much pain right now that I can only imagine that it might get a certain amount worse. However, my doc also mentioned what you said, about the pregnancy hormones actually possibly helping my joints loosen up and feel better! :-) That's one occurrence that I'm certainly hoping for!
I have never heard of an obstetric physiotherapist. That's a great thing to know...and I will certainly keep that in mind! I was hoping that they had something like that out there.
After visiting with the doc today, I'm much more encouraged. Your post helped a lot, too. I know that having a child is worth it.....I have no doubt about that. I just want to be able to be healthy enough by the end that I can actually hold and care for my child! =)
Thanks again for your post.
18th August 2004, 01:17 PM
Hiya Melissa :wave: I'm 16 and in the UK, five or six weeks post-op, curves roughly 40/60 fused T12-L3 anterior T3-L3 posterior with Synergy instrumentation.
19th August 2004, 06:43 AM
Hi Jonny! Nice to "meet" you! How are you doing with your post-op??? I just met a teenage guy two weeks ago in my apartment complex who had a 90 degree curvature and was going into surgery the next Monday! It was so random that I met him in the hot tub...what a small world! Anyway...I'd like to go see how he is doing, but I don't know him and don't want barge in on his family's privacy! How many degrees were you pre-op??
19th August 2004, 09:30 AM
Hey Melissa, WeLcOmE tO SsO!i!i!i!
I'm glad you found your way into our little family, I think you will like it here, everyone is awesome!!
My name is Abbi, im 17 and from Ireland. You can read my experience with scoliosis on my website http://abbi1986.mysite.wanadoo-members.co.uk (http://abbi1986.mysite.wanasoo-members.co.uk) It's not that long as I have only been diagnosed in March.
I hope everything works out for you, and your back doesnt cause you any more trouble. :squeeze:
19th August 2004, 01:22 PM
Hiya - sorry, was really unhelpful by not saying 40/60 was pre-op and now I think I'm down to less than 15 (woohoo). I wouldn't worry about barging in on anyone's privacy in hospital - visitors are such a great boost however well you know them! :-)
19th August 2004, 05:51 PM
Hi, Abbi! I wasn't able to get through your link...but I think it's my computer that's having problems. Thanks for the warm welcome! I'm looking forward to getting to know everyone around here. =)
Thanks for the clarification! That's an awesome correction....glad to hear it! I will try and go see the guy I met, and see how he's doing. =) Thanks!!
19th August 2004, 06:16 PM
I'll know for sure what the curves are on the 13th of September - my first follow-up. I fixed Abbi's link and it should work now Melissa - it wasn't your computer!
19th August 2004, 08:05 PM
That is the right link....but when you click it is says wanasoo not wanadoo.....
Ok well the link is http://abbi1986.mysite.wanadoo-members.co.uk
If it doesnt work its ok.
19th August 2004, 09:04 PM
Correction: I tried to fix it and fixed the wrong thing. :nut: Sorry :oops:
19th August 2004, 09:40 PM
Nice try jonny
21st August 2004, 02:23 AM
Yeah, thanks guys! Now I can get through the link!! Except I have to leave right now to visit my family in San Diego. I will get back with you all on Monday! =)
I look forward to checking out your site, Abbi!
22nd August 2004, 09:09 PM
Welcome Melissa! I'm 15 from Chicago and was fused about a year ago. My curve was about 45 degrees and is now practically nonexistant.
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