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Thread: Severe Scoliosis curve over 100 degrees!!

  1. #1
    Join Date
    Jul 2006
    Location
    Iowa City, Iowa
    Posts
    13

    Severe Scoliosis curve over 100 degrees!!

    Please help me find other people who are around my age (24), But WITH SEVERE Scoliosis I NEED TO KNOW if there is anyone out there whom I can relate to my curve was last @ 100+ 1 year ago. I can't go on like this because I am unable to manage my pain. If you look at my other post. I am in the Pain Clinic, I am taking my meds, etc. My Meds used to work pretty well, but THIS Winter has been SOOO bad. I have fell on the ICE a few times. I live on my own I am still able to walk upright (with Crutches). I used to be able to not have to use my crutches inside my apt. But Lately anything I can do I try when I am at home, to relieve the pain. Last July I was hit almost head-On by a Drunk Driver. (all that I got was a broken Nose) But!! My back has not been the same since. The EMT said because I had extra pillows around me when I drive, that is what saved me from snapping my back in the wreck. I have tried the usual list of things that other people talk about from the Pain Clinic. I am unable to get up in the morning, I feel like puking when the pain gets really bad. I am not going to let myself get to the point where I have to use a wheelchair. I used one when I was in High school when I had my left leg removed below the knee. When I got better, to were I did not use a chair again. I told myself I don't want to get that bad again. My Muscles went down very fast and it was 100 times harder to do things when I became upright again. I know that if I looses my muscles I am going to be dealing with a LOT MORE PAIN!. I wont be able to get that far. My pain level even with my pain meds (methadone, oxycodone, Diazepam) and heat belt in a normal day is a 7 out of 10. When My back is at its worst 8 to 9.5 At one point after I first visited the Pain Clinic last year I remember my pain really was easy to deal with. Like at a 4 maybe 5 on a bad day!! I don't know why (I guess I had a tolerance built-up) but that low pain number did not last long. Even when they increased my pain meds, my PAIN SEEMED TO INCREASE TOO? Because I can't get back to that point. I had cancer when I was younger and I remember them giving me medication that was put in by a timer and the machine sat on the bed next to me and it was VERY loud and it shook the bed when it would turn on every once in a while or when I pressed the button. I was like 6 or 7 years old at the time. I know beyond a shadow of a doubt, My pain level NOW is no where ever even close to what I remember it being when I was younger. I just don't want to hurt like this anymore. I would Like to know what Specific (Please list, or whatever) I am going to take the notes to my DOC. next apt, and start asking about anything you all can come-up with that you have had positive results. I am on a cancellation list hopefully with any luck they will call me Today (Monday) and tell me to come in and they will fit me in. Other wise my scheduled isn’t until the end of April.
    Please remember, and I say this with ALL Respect to your situation but if you do not have SEVERE Scoliosis at least around 100 degrees, please let other people who have had the same condition. P.S. already tried injections of all sorts in my back already. If you can relate and there is nothing that you have found to help.. then let me know that too. Because I am sick in tired of listing to some doctors that Think that if they are not completely honest about how bad my (entire situation, not just Scoliosis) is So when I look for support I can't find people to relate to because they think if they don’t tell me how bad I am maybe I wont realize it on my own. My Point?? I have to go back to the Heart Clinic on wedsday, to do more studies (I was there 3 weeks ago) But I guess My heart is sitting sideways in my chest and is not showing much or very little difference between the time I am stressed, as sitting still. I did not know My heart was this way. My lungs are compressed THIS I can FEEL. So I have a TON of problems (there are other things too, but this is all that I am willing to share at this point), all I am looking for is to get back to a point where dealing with it is not AS BAD AS ... just deciding NOT to deal with this crap anymore!... I am not saying I wish to do this but, this is NOT living this is only sustaining for the moment.


    Thank You, (sorry for such a long post, but I am in desperate need of advice)


    ALSO even if there is a Hospital somewhere in the USA or Canada Mexico (I'll find a way to get there HELL OR HIGH WATER!! if the doctors know more than Stuart L Weinstein MD (who is my Orthopedic Surgeon) and Venkateswara Karuparthy, MD (who is my Pain Clinic Doctor) or are at least willing to go out a limb and try something unique.

    Thanks again,
    Kevin Oelrich
    Last edited by Koelrich; 02-18-2008 at 05:53 AM.

  2. #2
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Kevin, I don't have a 100° curve (I just had surgery on a mere 53° one 10 days ago), but I've got to ask you this anyway ...

    Why are you dealing with pain mgmt vs. surgery on a 100° curve?? I noticed you didn't mention surgery at all - past or planned. Is there some reason you *can't* have surgery?

    I realize Weinstein is the only SRS doc showing in Iowa City (and only 2 in the entire *state* ... remind me never to get sick there!), but bolting to another country to seek another opinion is a bit overkill. Looking at your age age (24, right?) and Weinstein's specialties (Adolescent, Juvenile/Infantile), I'd have to guess he's not the best doc for you even IF things weren't so urgent.

    Don't give up, kiddo; if status quo isn't working, YOU have to take control and try something new.

    Search MO, IL, MI and WI ... all easily within a day's drive. There are quite a few people on here I've seen mention Lenke, Bridwell and a few others in St. Louis - and I'm sure they'll speak up.

    Pick the doctors, make initial calls, explain the urgency (100° will *probably* garner accellerated scheduling), set your appointments (be sure to grab your films, medical records, reports, *everything* from IA City so you can tell your new consults what you already have to save time and money) and hit the road.

    Keep us posted, and best of luck!

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  3. #3
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    Pam,

    If you read his earlier posts, you will learn that this poor young man has already undergone two major back surgeries. And it's apparent from his post that he is dealing with many other physical impediments in addition to his scoliosis.

  4. #4
    Join Date
    Jan 2008
    Posts
    111
    Dear Kevin,

    I'm glad you reached out to let us know of your distress. I'm sorry you have to deal with such pain and have to cope with so much. I wish you the very best and keep up the good fight until you have your situation under control. While it appears you have many complex issues, there has to be help for your situation.
    I do not have the extent of issues you have. My primary high thoracic curve is 91 degrees, has severe restrictive lung disease, use a Bi-pap at night, have some pain but not uncontrollable, and I am flying out from Los Angeles to see Dr.Lawrence Lenke in St.Louis, Mo. this week. He has a lot of experience dealing with patients with severe scoliosis and also revision surgery. A consult with him might be worthwhile. Perhaps writing a letter to him explaining your complex medical and pain issues would be of help. You could discuss this with your orthopedist or primary care physician. I'm sure Dr.Weinstein and Dr.Lenke are colleagues and are familiar with each other's work. Perhaps your doctor could refer you to him or you could contact Dr.Lenke directly if you wished to do so. Or perhaps you might find another scoliosis expert to consult.
    As far as dealing with your pain, I can't offer much help.I can merely offer some suggestions for you. There must be a cause of this severe pain. Have they discovered the cause? Is an MRI in order? I think the pain is a symptom of an underlying cause that must be addressed. It appears that your are at a threshold of having severe difficulty coping with your pain. I hope you get in to see your doctor today. It seems that you are at a crisis point and must see a doctor right away. Go to the E.R. if you have to, get the appropriate intervention and have them make an appt. ASAP to the appropriate doctor. Other questions come to mind: 1) Do you have an internist or PCP (primary care provider) who is coordinating your care. Maybe you should see him to have a review of your total medical situation and medications. Sometimes care can get fragmented between a variety of specialists. Perhaps you could ask him for a Treatment Team Review where all the experts dealing with your case could meet and discuss your medical management and plan and coordinate a future course of care. I don't know if they do this, but I know there is such a thing as Treatment Team Meetings. There is always a first time, and you could insist on it and periodic ongoing Treatment Team Meetings. Sometimes the right hand does not know what the left hand is doing and at times the complete medical record does not always show up when it is supposed to. 2) Do you have family or social support in dealing with these issues or in emotionally supporting you or in offering you some physical help? This is alot for a young person to cope with. Yank on some chains is you have to. Yank on a lot of chains. Keep us informed of your progress. 3) There is a big emotional side to dealing with all of this and it is hard not to get depressed. In fact, I think it would be normal to get depressed at times or to have difficulty overcoming feeling down. If this is an issue for you, it is important to discuss this with your doctor and get help.
    This is all I can think of to offer you at this time. Keep up the good fight and be your own best advocate. I hope one day you'll look back and be able to say that most of this grief is in the past.

  5. #5
    Join Date
    Jul 2006
    Location
    Iowa City, Iowa
    Posts
    13
    Don't Fight I just want help! I am sorry PAM that I did not "tell my whole story" in every POST I have over 43 charts in my records just at the UHIC alone. So It is a very unreasonable for me to each time I ask for help to give a full review of my history. I am thankful to everyone who posts for all of your ideas of what I should do. I am seeking to go ANYWHERE, just to get relief. I am 100% sure that if you call ANY! of the Doctors or (Med students, lol) they will know who you are talking about. If ask them if they know who Kevin Oelrich is they wont have to "Check their records" to recall what my case was about. It is a mixed basket, on one hand all of the problems gives me a sort of "Celebrity" but This is not the kind of Fame that I wish to have. I plan on donating my body to Science, maybe someday they can find something form my many related/non-related problems that I have been dealing with all my life to help someone wayy before it gets to the point of no return. My doctors used to use "ME" to punish or teach the med students a lesson by reviewing my ENITIRE medical history. Even when I had 20 charts. Which means they would have to dig through ALL of my Charts. When a snotty Med student first comes in to where you can tell that they learn to respect you and in turn RESPECT ALLL patients from their on, because they look like a deer in the headlights when they are mulling through all my records.
    So, sometimes it is necessary to cross reference some of my posts if you are unclear about a certain point that I have made. Eventually you will get the whole story if you read all of my posts. But I still haven’t even came close to sharing all of my problems past/present. Like Prostate cancer when I was 4 ˝ years old.
    I am still playing the waiting game with my Pain Clinic. I was hoping to get in early this week So I am crossing my fingers. I’ll let you all know what they are going to do for me as soon as I am able to get in.

    Thank You,
    Kevin Oelrich

  6. #6
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    www.spinal-deformity-surgeon.com/

    Kevin

    I'm so sorry to hear of your situation. My daughter just had surgery with Dr. Lenke in St. Louis, I posted a link to his website above. There are before and after pictures/xrays of some of his patients who have curves >100 deg under "Patient stories". He does many complex revision surgeries, people travel from all over the country to see him. He does about 250 surgeries/year. Please take a few minutes to check him out. I hope you can post here someday with a success story. Best wishes to you.

  7. #7
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    As I've said since my first post on the topic, I hope you find the help you need.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  8. #8
    Join Date
    Jul 2006
    Location
    Iowa City, Iowa
    Posts
    13
    Quote Originally Posted by txmarinemom
    As I've said since my first post on the topic, I hope you find the help you need.

    I'm done posting; quite possibly for good. Without a doubt, I can do without *this*.
    I don't quite see what you are saying. But I guess the interpretation of the words can be a direct result of the situation that the individual is dealing with.
    I know I may have misunderstood your intentions, but I guess Everyone deals with the stress of their Scoliosis in their own unique way.
    PLEASE, POST ANYTHING YOU CAN THINK OF THAT MAY BE OF USE . I am taking the notes to my Doctor, as soon as I get in. I am going to share your tips with him and we are going to find something that I can do, or some other kind of medication that I can take to help me with this.


    THANK YOU, to everyone who has posted something of use. Please continue to do so I need all the help, hints, tips, or whatever you are willing to share about your situation.

    Kevin Oelrich

    P.S. Texas good luck with your recovery. I hope that you and EVERYONE else for that matter to get a handle on your Scoliosis before it gets out of hand.
    Last edited by Koelrich; 02-18-2008 at 09:09 PM.

  9. #9
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Kevin--I too want to wish you the best in your search for relief and help. There have been many good suggestions and it sounds like you have a plan. Please keep us posted on how things go--and above all, hang in there!

    I also sincerely believe txmm was not trying to be negative. She has been a help to so many on the forum. I hope you can see the positives about her sometime. That's said, I'm done for now on that subject. Let sleeping dogs lie...

    I'll be praying for you, Kevin. You've had quite a life--and the type of notoriety no one would wish for. Again, hang in there. It will get better.
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  10. #10
    Join Date
    Dec 2007
    Location
    minnesota
    Posts
    100
    hmm well kevin, i m truly sorry about any pain you have and sorry about how people have been fighting like this, ive had it happen recently as well...well anyways i actually agree to go get a 2nd opinion in the us, i wuld suggest minnesota as well, i live there and ive heard that theres som great surgeons, i read this one girl had 2nd bigget curve at 120 something and it got fixed at age two at gilettes childrens hoping for the best, and im really sorry about how much pain you have i hope you can get a good surgeon somewhere or some kind of medication to help you along , im praying for u
    Danielle
    14 Freshwoman
    December 1st got no head the boston brace
    Pre Brace Curves:18C 25T 30L
    In brace curves: (1/23/08) 16C 20T 22L
    In brace Curves: (5/21/08) 19C 19T 15L
    We're Bringing CURVY BACK

  11. #11
    Join Date
    Dec 2005
    Location
    new jersey
    Posts
    850
    Hi Kevin- I had a 95 degree curve which was reduced to 60 by Dr. Boachie in NYC. If you check on the Discovery Channel site, you will see
    he had done a young boy's surgery on "Surgery saved My Life "series. I believe his curve was more than 100, quite an extreme case. He is another surgeon that has experience with extreme cases.
    Lynne

    (fused T11-L5) Aug 2006

  12. #12
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290
    Kevin I do hope that you are able to get the help and pain relief that you need. That being said I feel like I need to defend TexasMM as well. She was not attacking you, and based on what I read in the first post I would have had no idea that you had prior surgery either. I also do not go researching posts from members to see if I can find out about their history. I believe she was trying to help and she was also protecting herself from someone that appeared to be trying to make her look stupid or uncaring for not doing said research. Please don't think I am attacking either. It would be a pity if we lose members from this board because they feel like their opinions are not welcome.
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

  13. #13
    Join Date
    Jul 2006
    Location
    Iowa City, Iowa
    Posts
    13
    Quote Originally Posted by Geish
    Kevin I do hope that you are able to get the help and pain relief that you need. That being said I feel like I need to defend TexasMM as well. She was not attacking you, and based on what I read in the first post I would have had no idea that you had prior surgery either. I also do not go researching posts from members to see if I can find out about their history. I believe she was trying to help and she was also protecting herself from someone that appeared to be trying to make her look stupid or uncaring for not doing said research. Please don't think I am attacking either. It would be a pity if we lose members from this board because they feel like their opinions are not welcome.
    I understand what you are saying I just thought what TexasMM said was kinda rude. In my case I have too many problems to list. So I guess I failed because I did not post everything every time I post anything.

    Thank You for you support though, I do appreciate it very much, please do misunderstand.

    Thank You,
    Kevin O

  14. #14
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Kevin, I know I was going to leave this alone, but need to say something more too. Sometimes when we read the written word, we don't quite take it the way it was meant. And sometimes when we're not feeling well (that would include many of us--you and TXmm who just had her surgery a little over a week ago), people can be overly sensitive. I think that's what went wrong today. You were asking for help and she was trying to give some. It's just you both were on different wave lengths. Pam did nothing wrong--she was trying to be helpful.

    I truly hope this works out. Maybe after everyone gets a good night's sleep it won't seem as big a deal. Everyone on the forum is here because they belong. We all have scoliosis and we all have needs to "talk" on this forum. The best thing about it is the sharing. Hopefully it is mostly sharing in a positive way and encouraging those that need it. It should also be a place where we can find acceptance. We all have enough going against us without finding it here too. I hope that you can understand what I'm trying to communicate. I'm not directing this just at you--but just in general-- let's try to find the positives and not dwell on the negatives when we read people's posts.

    Again, keep us posted on how it goes with yor doctor search and all.
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  15. #15
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290

    So well said...

    Susie*Bee I am so glad you are so much more eloquent than I am...your post is what I was trying to say. Thank you for the wonderful post.
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

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