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Thread: Just a long note on how things have been going...

  1. #1
    Join Date
    Jan 2011
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    122

    Just a long note on how things have been going...

    I'm sure people are sick of hearing about my problems. I honestly have come to believe I am just probably the surgery gone wrong story. The auto-immiune problem is still very difficult in my legs and so far still no answers as to whats causing it. After we asked my last RA questions on why she put me on a chemo drug and prednisone tabs for over 2 mosm as well as Pred 3 injections without having a diagnosis-and she still doesnt, and then upped my methorexate dosage, she has completely thrown me under the bus. My tongue was burnt, had a hard time talking, my hair was falling out, everything smelled burnt to me only, and everything tasted bad. These drugs side effects are bad, besides slowing healing and osteoporosis. She now stated in my recent med report from my last visit that she never saw any symptoms, and also falsely stated in my med report that (at my last visit when we asked the questions ) she feels "there is a psychiatric componant" and that she "suggested a psychiatrist but the patient feels she doesnt need it." She never said anything of the sort at this or any office visit. How can a dr get away with saying something like this when its completely untrue ? We were just devastated when we read this. Can a dr LIE and say whatever they want in your med report and get away with it? The visit was straight forward and polite but we asked questions she did not like. In turn she has worded her report of this visit so oddly that it sounds like I came to her ON the meds already, and she doesnt even acknowkege she put me on them. The report has other false statements. But what does a person do or make of this? I have had the WORST luck with drs I could ever imagine.
    The pain I had from the prior Shingles seemed to subside, but Ive still hd terrible pain where this bump Ive mentioned before is near my incision in the upper back area. From the CT I was told it appears it could be the screw irritating. This dr was a 2nd opinion. He said removal of the hardware at 6 mos might be a good idea if i have fusion. At 4 1/2 mos that appeared just 50% some areas not, and Im waiting on a bone growth stimulator if my ins approves it. This pain is so intense still and it feels like the screw, if thats what it is there, is tearing me apart with every move. I still have a phobia that its another unabsorbed suture. Every dr avoids that question and doesnt even mention it in my med reports that it was discussed.The only relief I have is laying down and I prop my left side up with a towel. It stings so bad. Laying on my sides is also very painful. Now in the past week and a half, the middle of my back feels like dagger is in me. It feels like the wind is kicked out of me all the time when Im up. I am having a very hard time standing up straight anymore. I measured 5' 5" at my last few other dr apts and after my scoli surgery I was 5' 7". I feel like I' going crazy. Am I ? Maybe the RA dr is right..My dr looked at me like I was probably imagining it, and didnt even measure me..He said my pain is probably nerve damage from the Shingles I had. That does make sense for some of it. The screw sticking out, nt shingles pain. The mid back pain is no where near where the shingles was. Its about where the end of the rod is. I feel like the hardware is hanging in me.. like somethings wrong. My surgeon said to just go to pain managment. My friend who comes with me to all my apts intervened and spoke up this time and now I'm getting another CT. ( Had one 3/18, but didnt have this new pain).My surgeon is a genius at talking without literally saying anything at all. I leave there absolutely lost..I think he feels its all in my head, or its like he has this ego and wont admit there could be ANYthing wrong after the surgery. Even the suture he told me to ignore for 7 weeks until it nearly popped out of my skin. I need a another surgeon. If you have a great surgeon from the SRS in Mn PLEASE let me know. I am a good person, I am honest, I do have pain, and I need help. I have had not so good drs, I am not crazy. I really want to get better and LIVE again.

  2. #2
    Join Date
    Jan 2011
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    122

    A GOOD thing.

    My family dr said she will write a letter to the Mayo Clinic and to my ins regarding the auto-immune disease so there is HOPE of getting in! ) I am praying.
    In the mean time I have some apts for allergy patch test for metal and sutures may
    16th.

  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Leanne, I'm so sorry. I feel your despair and distress. I suppose it's late at night there too, which always makes things seem worse. It seems some mistakes might have been made but nobody's taking responsibility, with your pain and mental anguish being the cost. I hope someone can point you in the direction of a better surgeon, one who does the right thing by you.

    I also hope you are able to get into Mayo, see some reputable doctors, and get some answers. I think you already have a fair idea of what's wrong but so far you haven't found the right doctors, with the experience, skill and integrity to see you right.

    I wish there was more I could do than send a cyber-hug and hope for the best. Don't ever think we're sick of hearing about your problems. I suspect most, like me, don't have the answers but this concerns us all, and every scoli patient into the future. We need to know about these possible outcomes, to make decisions. But most of all, we wish you well and hope for a rapid resolution of your problems. Let us know how you get on with getting into Mayo. Good luck!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  4. #4
    Join Date
    Jan 2006
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    near Philadelphia
    Posts
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    I'm very sorry you are going through this. I hope the Mayo Clinic will take your problems seriously.

    From what I've experienced and heard, I've found that scoliosis surgeons are NOT good at follow-up. They're so highly specialized that they have trouble seeing other issues that may or may not be related to the surgery. It's really difficult to find a surgeon that will look at the big picture.

    Best of luck to you and hang in there!
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  5. #5
    Join Date
    Jan 2008
    Location
    NC
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    I'm going to suggest that asking an orthopedic surgeon, even a top one, about complex issues that arise OUTSIDE of orthopedics is edging into "blood from a stone" territory.

    I agree it appears some mistakes were made. The problem is compounded further because they are not forthcoming with admitting this. I think that increases your mental burden and is unacceptable behavior.

    I am hoping Mayo takes you and throws a team of specialists onto your case. The complexity of your case requires a team it seems. Have detailed records and timelines of all symptoms in a clear format. That will be key. It's possible they can figure this out just from the records if they have seen complex cases like this.

    Good luck, Leanne. The answer is out there. You're doing a good job holding it together.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
    Join Date
    May 2010
    Location
    Indianapolis area
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    966
    Leanne,

    I'm sorry you are going through this.

    It sounds like you are experiencing a lot of anxiety. This is really not unusual following a major, life-disrupting surgery. It's possible you could benefit from some anxiety medication. It might help you stop worrying about the little things so you can really focus on the big issues and how to solve them. I have experienced major anxiety in the past and it can really throw you for a loop and make you think all kinds of life-threatening things are wrong with you, when really it's possible that the things wrong are very fixable.

    Also, I wanted to suggest you contact the Twin Cities Spine Center if you haven't already. Dr. Lonstein and Dr. Transfeldt have very good reputations (SRS docs). Maybe you could get some xrays to make sure you don't have a broken rod, given your recently reduced height.

    Also, are you sure you need another CT so soon? They carry a large dose of radiation.

    My heart goes out to you as I know what it feels like to be completely stressed about your health (and I haven't been through nearly what you've been through). I hope you get some answers soon and some relief from the anxiety.

    Best,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  7. #7
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
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    I am so sorry about all these!!!
    I can only tell you one thing... DO NOT GIVE UP!!
    Someone will care and listen. Some Doctors just simply don't know what you are going through or don't care... but someone will! Go see someone else!
    My thoughts are with you... I had rare complications from this surgery as well and I know how it feels like when they don't have an answer for your problem. You are not crazy!
    PILAR
    Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
    Now age 32
    Pre-op curves: C86-T98-L37
    Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
    Fused T2 to L5 with thoracoplasty.
    Post-op curves: C48-T47-L17
    Dr. Robert Pashman
    Cedars Sinai, Los Angeles, CA
    Before and after xrays :
    http://www.scoliosis.org/forum/attac...5&d=1292969215

  8. #8
    Join Date
    Nov 2010
    Location
    British Columbia
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    918
    Leanne, you are NOT crazy but you are going through an awful lot right now with trying to figure out your health issues which does naturally bring on anxiety as Evelyn mentioned. I too would suggest that for a while, while you're working hard to figure things out that you ask your GP for a prescription for antidepressants. Anti-anxiety medication is good too but they can be addicting and the effect wears off within a couple of hours unlike antidepressants. I've been on a few different ones myself and they worked wonders for me when I was completely overwhelmed with what was going on in my life. Paxil immediately brought me around 180* but the side effects were annoying. Celexa and Cipralex both worked great for me and I noticed no side effects.

    Keep updating. You will get this all figured out, I know it.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  9. #9
    Join Date
    Jan 2009
    Location
    Ames, Iowa
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    1,250
    Leanne--
    I'm sorry you are having such a terrible time with all of this and it seems no where to turn for help. There's some wonderful suggestions up thread. Twin Spine Centers is in your state and is a great one. I also think the anti-depressant is a great idea. How could you not have anxiety with all of this? Please ask your GP for that. It helps to be clear thinking when you have big decisions to make! Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  10. #10
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,702
    Leanne,
    You have every reason to complain. I hope you get an appointment soon with a good scoliosis surgeon.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  11. #11
    Join Date
    Jan 2011
    Posts
    122
    Thanks for everyones help. I will think about the meds. I hate to take even more meds. My brain is already effected by the chemo med and percocet and its hard concentrating focusing and remembering sometimes. My family physician suggested an anti-depressant a long time ago right after my surgery and I declined. I felt finding the source of the pain was better than taking a pill daily to make me happy.
    I am worried, and do have anxiety about my health, and I have lost alot of distrust now in the medical system. The reason I have not given up is because I have the will to find the answer and keeping my faith. I am afraid of meds that effect my brain. So far Nurontin and Lyrica were TERRIBLE for my mood and made me feel drunk, among other things. Some people arent effected by these brain thought altering meds as much and most handle them well. I dont and I am afraid to take them. The side effects of Methotrexate are bad, and will be in my system guess for quite sometime even after stopping it 4/1.
    I will try and find another surgeon. I did that once ( he was young and had 6 yrs experience but was NICE I had to go back to my surgeon and when he found out Id seen someone else for a 2nd opinion he seemed really unhappy. Now I feel like he is personally angry with me..
    I need to hear from people out there who have had surgery with ANY of the Drs on the SRS list in MN who are happy with their surgeons. the list is very long and would be hit or miss for me.
    May Clinic, still praying my family drs letter was good and I get a phone call.
    THANK YOU to all of you.
    Last edited by leannebr; 04-19-2011 at 01:04 AM.

  12. #12
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Hi Leanne,

    Sorry, I should have been more specific. I have used Lexapro for anxiety. It is not a narcotic and not addictive in the sense of Percocet, Xanax, and stuff like that. It's an SSRI--an antidepressant that also treats anxiety disorders.

    I don't know if it would be possible for you to get off the pain meds at this point, but if so, that could help as well. I have found the cycles of pain meds tend to cause even more anxiety.

    Call the two docs I mentioned at Twin Cities Spine. I have not had the surgery yet, but my ortho surgeon here, who is also an SRS member, recommended them for a second opinion and said they train many of the SRS scoliosis surgeons.

    Keep plugging away. This WILL get better!!!!!

    ,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  13. #13
    Join Date
    Aug 2007
    Location
    Bend OR
    Posts
    34
    Hi Leanne,

    Good luck to you. I can't stand to be at the computer too long so I'll keep this short, but please know kind thoughts are with you.

    One thing you may want to do is correct your medical records. Once you see errors, you are entitled to correct those errors. If they say that something was discussed that wasn't you should correct that, as well as add any information that was omitted. Contact the medical records department, they will probably have a form for you to fill out.

    Susan

  14. #14
    Join Date
    May 2009
    Posts
    3,745
    leanne, your private message inbox is full again...

    jess

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