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  • New Here - Spinal Meningioma

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    Old 04-11-2013, 09:18 PM   #1
    SkyCam2020
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    Question New Here - Spinal Meningioma

    Hi Everyone - is there anyone out there who has or had a thoracic meningioma? Just found out yesterday that I have two of them. Monday could be another wild day, as my pain Dr says he may be "doing something." I think this means after he checks the second MRI with contrast, he will try to send me right on to a neurosurgeon if he can get me in Monday.
    He's already said I must have them removed. I know nothing about the recovery period! Does anyone know about this.
    Thanks and glad to have a place to ask questions

     
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    Old 04-12-2013, 11:14 AM   #2
    teteri66
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    Re: New Here - Spinal Meningioma

    Welcome to the forum. I usually post on the Back board, but happened to see your thread.

    Don't let them lead you to think that this is an emergency that must be dealt with immediately. Many people live for years with a meningioma. It all depends on its location and the extent to which it is impacting the spinal cord.

    Take time to find a neurosurgeon that is very experienced in the removal of thoracic tumors. Not every neurosurgeon is comfortable working on the thoracic area. Do not necessarily settle for the first surgeon you are referred to. You want to find the best trained, most experienced spine surgeon that is available to you...the selection of the surgeon can be a big factor in the success or failure of the surgery, so take your time and do your research.

    I can't give you a time frame for recovery. It all depends on how big are the cysts, their location, etc. These are questions for the spine surgeons you consult with.

    Good luck!

     
    Old 04-12-2013, 01:16 PM   #3
    SkyCam2020
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    Re: New Here - Spinal Meningioma

    Thanks SO MUCH! I have mobility issues and a great deal of pain, so am pretty excited about the possibility of at least some resolution. I was forced to retire early in 2010 due to disability!! I also have DDD, so I understand this is not a "cure all" but I am so hoping some of the pain will diminish and the stumbling will stop. Over the past 10 yrs have gone to several Drs (Pain Dr, 2 Neurologists, and a Neurosurgeon) and no one caught this as no one ordered a thoracic MRI...only a lumbar and cervical!
    Thank you for the warning regarding surgeons! This IS so important, as I used to be a surgical nurse and have seen firsthand the ones who KNOW and the ones who DONT! Pretty scary stuff at times! Fortunately, I know a neurosurgeon I used to work with who is tops. And to think, I've assisted in the removal of meningiomas!! But of course, after they rolled out of the operating room, I had no more knowledge of them.

     
    Old 04-12-2013, 05:38 PM   #4
    teteri66
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    Re: New Here - Spinal Meningioma

    I'm glad you understand the importance of finding an experienced surgeon. I always worry about those who are referred by a primary care doctor, go to that surgeon without consulting anyone else and are rushed into surgery.

    Hopefully this is the source of your pain. From what I have read, it certainly sounds like it could be. I have not had any spinal tumors so can't speak from personal experience. I hope the removal is not too complicated and that you will recover fairly quickly.

     
    Old 04-12-2013, 06:35 PM   #5
    SkyCam2020
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    Re: New Here - Spinal Meningioma

    Thanks so much...how kind of you! And keep posting to folks about the importance of checking out the Dr. It is such sound advice.

     
    Old 04-13-2013, 06:25 AM   #6
    teteri66
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    Re: New Here - Spinal Meningioma

    Please keep posting about your experiences. It will be helpful to those who may just be reading on here, but not yet participating. Also, you might want to check out the "Back Problems" board...although I don't think there is anyone currently on who has a similar issue. One woman has lumbar

     
    Old 04-13-2013, 06:53 AM   #7
    SkyCam2020
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    Re: New Here - Spinal Meningioma

    Teteri, again, really kind of you AND just last night I was looking around wondering where you usually post. So thanks for giving me the name of the board.
    Good idea and one I hadnt thought of...someone, someday, might have the same problem I do and I can be of some help. Taking your advise, I'll update here. Next adventure comes Monday...

     
    Old 04-15-2013, 08:34 AM   #8
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    Re: New Here - Spinal Meningioma

    Today is Monday. I will be curious to what happens at your appointment. Good luck.

    It is confusing what with two boards for "back" problems. Most people with lumbar issues post on the back problems board, while cervical problems are found here. Thoracic tends to go either place -- whichever the person sees first, I would imagine.

    I usually post on the back problems board but check this one on occasion...and if I feel I know something that might be of help, I add a comment here and there!

    Last edited by teteri66; 04-15-2013 at 08:37 AM.

     
    Old 04-15-2013, 01:10 PM   #9
    SkyCam2020
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    Re: New Here - Spinal Meningioma

    TeTeri....are you the BEST or what? Really!
    Again, was wandering around and couldnt decide a place for me, so thats what I'll do -- head to the Back board that deals with Lumbar since I have DDD in that area.
    WELL, as one with back problems, I'm sure you are accustomed to the flip flop. I can't even tell you if this is good or bad news! Since surgery would have eliminated PERHAPS a lot of my pain and "neuropathy", its a little confusing, so I think I will remain in the neutral position :-)
    The Pain Dr looked at the MRI with contrast this morning and although he was certain I had two meningiomas on Friday - he saw I had one, and then a "defect" which he doesnt know what it is. I respect that he refused to say anything about that one, since he said he didnt know what it was. AND, he said it was difficult to tell if the one meningima is actually pressing the cord. Since they are slow growing and surgery is tricky (but very very few bad oops), I should wait 6 months and have another one. Then he read over my chart and noted that I've been stumbling the past couple of months.
    SO, he said MAYbe it is pressing more than he can tell and I'm heading to the neurosurgeon on Friday morning. As Im sure you are used too...its a wait and wait some more situation.
    You are so very kind to remember to check back with me!!! I will do as you say, and continue to post here in case someone with a meningioma comes along - but it will be updates, depending on what in the world the Neuro Dr says on Friday. Otherwise I'll head over to the Back board that speaks of the lumbar area. Again, your concern is so warm hearted and I appreciate it. Certainly makes me feel as if I am not alone out there..... bless you

     
    Old 04-15-2013, 08:30 PM   #10
    teteri66
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    Re: New Here - Spinal Meningioma

    I'm glad you are going to see a neurosurgeon. Pain management doctors are usually anesthesiologists who take some additional training but it is generalized so they can prescribe for problems of various body parts. They do not have the specific training in the mechanics and diseases of the back and neck, spine. They know the basics but they do not have the knowledge the orthopedic spine surgeon or neurosurgeon has. For this reason, I think it is very important to go to a spine specialist for the initial diagnosis.

    Some spine surgeons do not want to see the patient if he/she doesn't require surgery, but that was not my experience. My surgeon set up a plan of treatment and managed my case all along....he decided when he wanted me to have a diagnostic nerve block or an ESI, etc. and then sent me to the specialist he was used to working with. Same for physical therapy.

    Who knows how things will be in a year or two...but for now, going to a neurosurgeon or an orthopedic spine surgeon is the best way to proceed. If the neurosurgeon feels you do not need surgery at this time, he will tell you so.

     
    Old 04-15-2013, 09:06 PM   #11
    SkyCam2020
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    Re: New Here - Spinal Meningioma

    So agree that getting the neurosurgeon's opinion is the best route. LOL...however, having worked with surgeons you do understand that that's how they make their money! Surgeons operate. Sounds like you have an exceptional one. I'm thankful for that. It's not easy to find a responsible Dr sometimes.
    I also agree when it comes to Pain Drs. I've been to three of them before this one, and what a mess! One clipped a nerve while doing a procedure (he was busy talking to an old friend of his who stopped by the O.R.), and I limped for almost a year! Another one made loads of money doing rhizotomies so although the procedure did not work after 1 1/2 yrs of several of them, he charted they were successful. When I filed for disability, this became an issue. The one I am seeing now, actually has a speciality in neurology. He is also pretty straight up...hence not wanting to name something he wasn't sure about. But, I agree...he's good for a Pain Dr and now it's time to head for to the neurosurgeon.
    Tricky thing is this neurosurgeon has already told me I need a fusion. I refuse to have it. He is a nice fellow, though, and said that was fine, "I'll be here waiting." Of course, still not going to get the fusion...especially if some of these symptoms could be caused by the meningioma. But, he's good and I believe I'll have a better idea whats going on.
    I hope he can help. I've felt myself going downhill the past several months -- wondered why the changes were coming so fast.

     
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