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Thread: Other physical problems because of scoli.

  1. #1
    Join Date
    Dec 2007
    Location
    near the North Pole City in Alaska
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    19

    Talking Other physical problems because of scoli.

    Hi! I am 57yrs. had surgery 1965,Harrington rods+ fusion by Dr.Paul Harrington.I had a lamanectomy in 2002,and now prepairing to have surgery because my cervical and lumbar spine is shot. I have restrictive Lungs,Gerds,COPD,and migrane headache because my neck is so degenerated I can hold my head up with out support for no more than two hours before I get a bad headache. And is bad because am a very active person and now I live in my apartment in a chair I can recline in. Yp here we are limited on specialist so I am flying to Seattle,Wa. to see two different doctors who are going to work together in surgery. I have already met Dr.Hillard, a neurologist and on Jan.9-08 I will meet with Dr.Lee,bone and joint speciallist. I am on total disability and feel as I must settle for who I get. If any one is on total disability and was able to choose who they saw please let me know how you did it and if you have any trick to beat neck and head pain. I was wondering if one of those foam neck collars might help. I am going to have to go through surgery just me and the Lord because I live so far from my famliy and friends. In Alaska we can apply for a C.P.A. to help out when I am back at home. If yall have any suggestions let me know. Thanks for letting me read what yall have to say.
    Last edited by Alma in Alaska; 12-28-2007 at 10:15 PM.

  2. #2
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Exclamation

    Alma:

    I strongly suggest you see a scoliosis specialist with extensive experience with patients (like me) with prior scoliosis fusions. The problems you are describing could be related to flatback syndrome. If you see docs who just specialize in neurology or general orthopedics you might be trapped by their tunnel vision. By that I mean they might focus on a small portion of your spine without taking into account the whole spinal alignment, balance and function. A sure recipe for disaster.

    Search this forum for flatback syndrome as well as Harrington rods. Please save your time and money and don't see anyone until you find the right doc. If you are properly treated you might even get off disability.
    I am able to work after my revision at age 60 and avoided the inevitable disability by proper treatment--and I am pain free.
    Last edited by Karen Ocker; 01-11-2008 at 07:36 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  3. #3
    Join Date
    Apr 2007
    Location
    Federal Way, Washington thats near Seattle
    Posts
    3

    Smile

    Hi there.

    I live in Seattle and I have had surgery as a teenager. I have had problems for the last 7 years although not as severe as you. I still have had to deal with pain on a daily basis. I went from doctor to doctor and physical therapists etc. If you want the name of the Dr. I finally found who is a scoliosis specialist that the foundation gave to me, his name is Jeffrey Roh, Md. Orthopedics International. Kirkland 425-216-4220 or he is in downtown
    Seattle. He's wonderful. I don't see him now. He referred me to a Physical
    Medicine Dr. Hope this helps. Keep trying to find the right Dr. It took me awhile.

    I'd be happy to come see you while you are in town if you would like.

    Chris

  4. #4
    Join Date
    Dec 2007
    Location
    bucks county PA
    Posts
    156
    Alma, you have the BEST on your side, Prayer is powerful and I bet you have a lot of people praying, and God knows no distance or boundary.
    Sharon

  5. #5
    Join Date
    Dec 2007
    Location
    near the North Pole City in Alaska
    Posts
    19

    Talking other physical problems

    Hi! chrisL, and Sharshe thanks for your reply. Since my last note I found a specialist in Boise,ID. who is seeing me on Jan.25,08 and this is a special blessing from the Lord because my BEST friend lives there. They are more family than my real family. I feel really good about this doctor(Dr. Howard King)and my friends are excited they will be able to help me.The flight is about 5hr. and Medicaid makes you return the same day so that will be a very long day,pray I can do it with out to much pain.If anyone can answer a few questions-Does the doctor do all the surgery at one time or several sergery(I have degeneration in my cervical spine,a curve just below the top of my rods,my top curve is back and 49* the rods are bent but not broken,And my lumbar is degenerated L3-4,L4-5 and the next vertabre are stagered with each other)so I am look to total back surgery,Plus has anyone traveled that far just after surgery? Thanks Alma in Alaska
    Last edited by Alma in Alaska; 01-14-2008 at 09:46 PM.

  6. #6
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Quote Originally Posted by Alma in Alaska
    The flight is about 5hr. and Medicaid makes you return the same day so that will be a very long day,pray I can do it with out to much pain.
    I feel so concerned for you, Alma! Surely you don't mean you have to fly back to AK the same day as the surgery... I hope I am just confused. That's wonderful that you have your best friend there and will have a specialist doing the surgery. As far as how many surgeries may be needed, that depends on the doctor and what he determines. Contact him and find out! Yes, I'll be praying for you! Take care.
    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

  7. #7
    Join Date
    Dec 2007
    Location
    bucks county PA
    Posts
    156
    You will be in my Prayers.

  8. #8
    Join Date
    Dec 2007
    Location
    near the North Pole City in Alaska
    Posts
    19

    Talking other physical problems

    Hi! Ladies ,I have placed a call to the doctor so tomorrow hopefully they will return the call and I will know about the way things will happen. I hope I do not have to fly home the day I am released from the hospital ,but Medicaid is in to saving money.But I am very blessed that Medicaid is paying for any transportation.Thank you so much for your concern. Thanks Again !!

  9. #9
    Join Date
    Jan 2008
    Location
    Washington
    Posts
    3

    Smile Hi

    Hello, I also have the same issue you are having. i had the harrington rod placement in Dec of 1981. I have had serious problems with my back and neck. I live in seattle and have a wonderful doctor. His name is Dr. Nelson Hager. He specilizes in pain managment. I am currently on no pain meds, but I am using a tenz unit. Maybe it could help you. I swim to keep me strong spirtitul. I can get you his info if you would like it.

  10. #10
    Join Date
    Dec 2007
    Location
    bucks county PA
    Posts
    156
    Alma,
    I was just wondering how your appt. went. Please let us know.
    Sharon

  11. #11
    Join Date
    Dec 2007
    Location
    near the North Pole City in Alaska
    Posts
    19

    Cool Medicaid--EEK.

    They would not fly me on Jan.9th so on Jan29th they did the same. Now it is Feb19th with Dr.Lee in Seattle hopefully this will happen. The doctor in Boise,Id. fell through because of Medicaid. I have learned so much on the forum I will make sure before the doctor does any surgery he WILL agree to do my full spine what ever needs to be done and not just part(the neck). Sometimes I want to say just forget it but the pain keeps me going (that is kind of funny pain keeping you going). I am one of those people who if I think I am right about something nothing will stop me getting it done even if I have to go over someones head to the person incharge. Thanks for asking about me. I will be intouch. Alma in Alaska

  12. #12
    Join Date
    Dec 2007
    Location
    near the North Pole City in Alaska
    Posts
    19

    Talking other physical problems because: Feb.19 appointment.

    Hi!! Everyone I had to pay my way but I did get to the appointment. ya!! Dr.Lee is willing to do Harrington Rod revision,he said he would fuse c2-the end,he is going to be talking to the doctor who specializes in revisions to find out the best way.Dr. Lee also said we could talk E-mail so I would not have to fly to Seattle so often.Thanks for asking about me ,I will write more later.Alma in Alaska

  13. #13
    Join Date
    Apr 2008
    Location
    Baker FL
    Posts
    33

    Alma in Alaska

    Alma, I feel so very concerned about you. About transportation; Have you contacted Angel Flight or any of the other charity organizations about flying for free. These use small owner operated planes that volunteer to fly people to medical treatment. There are 1 or 2 larger comercial airlines that have medical treatement service that is free or a deep discount. You may do a word search on the internet "chairty medical travel" to see what you find or if you want you can contact me via e-mail @ taylor1200@embarqmail.com & I will tell you what little I know. I too am hoping to use them to travel to my surgery / followup. I have been disabled by this pain for the last 10 yrs. I also have degernative problems, hardware in my neck. The last Dr that operated on my neck only thought about the neck & not the entire spine of a scoli patient & left me in more pain then before we went into the OR. That is why it is so important to find a Dr that understands scoli & revision. Like you I did not know about revision or much about my scoli until I found this site. We are lucky to have found this. Please keep us posted. God Bless You!
    scoli appeared age 15
    untreated until age 30
    41* T & 72* L
    Harrington Rod T4 to L4
    33* T & 53* L
    neck instrumentation C3-4,C4-5,C6-7
    Revision coming up in Nov. 2012

  14. #14
    Join Date
    Jan 2008
    Posts
    111
    Hi Alma near the North Pole in Alaska! How are you??? We haven't heard from you for awhile. Hope everything is going O.K. The last we heard you were on your way to have surgery. Do let us know how you are doing. God bless.
    Rita

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