It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Spinal Cord Disorders Message Board

  • Scheuermans w/hemangioma

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 03-20-2016, 11:31 AM   #1
    Sinkingship99
    Newbie
    (female)
     
    Join Date: Mar 2016
    Location: Philadelphia PA USA
    Posts: 6
    Sinkingship99 HB User
    Scheuermans w/hemangioma

    I have been diagnosed with Scheuermans keyphosis ( with cervical and lumbar lordosis) L5 is completely dehydrated with symptoms of weakness and severe pain after walking small distances.
    Also, lately I believe I've been having a symptomatic hemangioma (rare) and the doctor or PA treating me refuses to accept I have a bone disease on top of trying to reduce medicines.
    Saw rheumatologist who said I have A painful degenerative bone disease that the pain needs to be treated. As of late my ribs and torso have been feeling what they call the " MS hug" but I don't "think" I have MS. Ibe tried to see over 20 doctors Ortho, neuro, to pain management they all either refuse treatment because I have something that effects .01 of population. I feel like the hemangioma is either growing or I'm having a heart attack. I feel these symptoms because I'm small 5'4 120 pounds there's very little room for a hemangioma to grow without me feeling it or possibly causing another fracture in my spine. I'm losing hope and if my meds are reduced again I think my life will be in danger. I'm scared, I'm going to university of Maryland but I have little hope they will give me my life back. I have extreme neuro symptoms. Burning hips, numbness and tingling and woke up the other morning not recognizing my own arm because the nerve was pinched so much it was without feeling and I couldn't move it only with my left hand to get it started again. I'm in health trouble and what I read about an active hemangioma I need help in southeast PA. I need my life back regardless of this disease. These docs tell me the hemangioma is nothing to worry about when I feel something soooooooo wrong

     
    The following user gives a hug of support to Sinkingship99:
    Triestina (03-20-2016)
    Sponsors Lightbulb
       
    Old 03-21-2016, 06:55 AM   #2
    teteri66
    Senior Veteran
    (female)
     
    Join Date: Nov 2010
    Location: USA
    Posts: 9,198
    teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
    Re: Scheuermans w/hemangioma

    Welcome to the board. You don't indicate your age. Did you develop Scheuerman's disease in your teens? How severe is the curve? Are you currently under the care of an orthopedic spine or neuro surgeon?

     
    Old 03-21-2016, 10:29 AM   #3
    Sinkingship99
    Newbie
    (female)
     
    Join Date: Mar 2016
    Location: Philadelphia PA USA
    Posts: 6
    Sinkingship99 HB User
    Re: Scheuermans w/hemangioma

    I have had Scheuemamns all my life left undiagnosed till now. I had signs and symptoms in my teens and twentys however it was never to the extent that it is now. As far as the hemangioma it was discovered recently and lately I've been feeling like its growing but yet again I'm dismissed by the medical community.
    Surgery on spine can't be an option unless hemangioma is addressed. I have impeccable insurance but as of late this new " fax your records and we will decide if we will see you" is all I get which means nothing .....no call backs I thought we had a right to see any doctor we want especially if it's the right doctor.

     
    Old 03-21-2016, 10:30 AM   #4
    Sinkingship99
    Newbie
    (female)
     
    Join Date: Mar 2016
    Location: Philadelphia PA USA
    Posts: 6
    Sinkingship99 HB User
    Re: Scheuermans w/hemangioma

    To further answer the curve gets more severe each week.....I can't get under the care of an Ortho or surgeon.

     
    Old 03-21-2016, 08:13 PM   #5
    teteri66
    Senior Veteran
    (female)
     
    Join Date: Nov 2010
    Location: USA
    Posts: 9,198
    teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
    Re: Scheuermans w/hemangioma

    Would you mind explaining why you cannot see an orthopedic spine surgeon? I would think the condition of your spine would warrant it.

    Is there more than one hemangioma and is it in the thoracic spine? Have you had a bone scan?

    Last edited by teteri66; 03-21-2016 at 08:24 PM.

     
    Old 03-23-2016, 07:49 AM   #6
    Sinkingship99
    Newbie
    (female)
     
    Join Date: Mar 2016
    Location: Philadelphia PA USA
    Posts: 6
    Sinkingship99 HB User
    Re: Scheuermans w/hemangioma

    Would you mind explaining why you cannot see an orthopedic spine surgeon? I would think the condition of your spine would warrant it.

    ABSOLUTELY!!! here in Philadelphia Area you have to fax your records to staff of physician then they may " call you back " if they determine you see the doctor. I have over 50 pages of MRI, CT, X-rays and a dexa scan. One And only one doctor spent the time with me a rheumatologist who said I have vertebral abnormalities my entire spine unfortunately he sent me off to people who could help but same thing happens as explained above. My right to health care Or to be seen by any doctor is being squashed by a non medical receptionist I fax my records to every time over 50 times, the people I do see refuse the diagnosis when I found 3 doctors who will back me up but can't help. Cardio, rheumatologist And a hand surgeon. My own primary care I found out wrote notes about my visits to her and the pain meds I am on she has made a determination I have a drug problem...........they keep weaning me off meds with a degenerative bone disease and I can barely walk I'm gradually losing any quality of life because they want to do injunctions near a hemangioma I won't let happen nor I can afford since injections are not all FDA approved for back pain. At least not approved for bone pain. Off label use is happening every day but it's dangerous and not approved but because it gives some people relief......so no one fights the broken system. Till someone gets a blood clot for screwing around a hemangioma.

    Is there more than one hemangioma and is it in the thoracic spine? Have you had a bone scan?
    I'm not sure if there is more than one hemangioma however I am having increasing chest pain I have to wonder if hemangioma is growing.

    Btw - I was referred to physical therapy and got a call that I was having my appt cancelled there was nothing they can do for me and I'm a waste of their time, as told to me.

    There's more........its appaling

     
    Old 03-24-2016, 02:19 PM   #7
    teteri66
    Senior Veteran
    (female)
     
    Join Date: Nov 2010
    Location: USA
    Posts: 9,198
    teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
    Re: Scheuermans w/hemangioma

    I can only imagine how frustrated you are. I don't understand the inability to get an appointment in Philadelphia. At least from my experience, that is an oddity. I probably saw a total of 15 specialists in three states and in only one case did I have to submit my records and they decided if they could help me or not. I know it is common at some hospitals like Hospital for Special Surgery in NYC, but I thought it was far from routine.

    I wonder if there is something in your records that is keeping you from getting an appointment? Are you in possession of the records and you fax them yourself?

    You refer several times to a degenerative bone disease. Who diagnosed that? What is it called? (More soon...)

     
    Old 04-04-2016, 11:01 AM   #8
    Sinkingship99
    Newbie
    (female)
     
    Join Date: Mar 2016
    Location: Philadelphia PA USA
    Posts: 6
    Sinkingship99 HB User
    Re: Scheuermans w/hemangioma

    There is nothing in my records other than my age (42) and as one professional told me I have Scheuermanns with a hemangioma and I am a woman NOT in menopause. I fall into a rare .01% of the population. There will be no appointments for me because all physicians see is a disease they DO NOT KNOW how to treat and as scientific and robotic and SELFISH as doctors can be they treat me incorrectly they think my other hand is on the malpractice wagon. I am well aware this scares everyone and ME for that matter and I am prepared for a little trial and error.
    I was diagnosed quickly by a top spin surgeon as a favor to my cardiologist however he is that a surgeon. I have the non surgical kyphosis thoracic to lumbar in the subcategory of scheuermanns. I was diagnosed at the university of Maryland however the philly docs wont even look at the papers its like if they look at UMM's suggestions their corneas will burn. On top of the people currently treating me DO NOT WANT TO HEAR ABOUT IT because I went over their heads.[U][B]

    This is where I was sent I see a doc in may but I hope I can hold off or convince the pain clinic that I go to ( they have me on some detox plan and want to start injecting me at the site of the hemangioma.......im told 1. I am most certainly in pain and it is not subjective its real. 2. They want to start injecting crap at T10 to put me in more pain and take away meds to leave me in pain. 3. Yes I am to get mobility shots in the facet joints in hopes to stand up not start at t10 more like start at t1. 4. These people are idiots. They just took me cold turkey off soma and put me on a Extended release flexeril........that has norepinephrine in it and serotonin.......in 1 day I thought my heart was going to blow out of my chest. With cardiac issues serotonin and norepinephrine are off my list. Plus I am not depressed I am frustrated)

    Last edited by Administrator; 04-07-2016 at 12:38 AM.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 06:07 PM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!