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Rare conditions

8318831 Posts: 3
edited 06/11/2012 - 9:02 AM in Chronic Pain
Hi All.

I am wondering if there may be anyone who has a similar or the same condition as I have on this site. I have a, well what I have been told is a rare condition so let me explain.

12 years ago I had a problem with my shoulder & a slight lump came up, after many visits to the Hospital with lots of scans all different. I was told that I had a tumor on the side of my nerves in the neck running to my spine. When they did the opp it turned out to be a lot worse than that, they found that the tumor was in the nerves c4 c5 c6 && that the tumor actually went into the nerves of my spine. Over the years the tumor has grown but not by much to both with but it has & does block the signals from the nerves through out my body to the brain & back again. I am in constant pain not knowing where the pain will be next & to what degree it will be. As I said I am in constant pain I have problems moving my limbs ( arms legs ) I also have muscle spasms some small others quite violent. I have problems walking sometimes through the pain other times through muscle problems, these plus many other problems.

I was told that they can not take out the tumor in my spine as they do not know enough yet so as not to kill me. So I have a tumor at the base of my lower brain & at the top of my spine that causes me a lot of bother to say the least. As this is the case I was told that this is rare & I am wondering if anyone on this forum suffers anything like this as I know no one else with this problem & it would be nice to be able to talk with someone about it. Someone who understands just what we go through & how bad it can get, I do hope that there is someone who has this & that we can talk. I will wait with hope.



  • I am sure everyone understands how hard it is dealing with such severe issue even if they dont have the same condition here, Sorry to hear there is not much they can do for you,

    Dont give up hope as many new things have come out and keep search for that 1 speciall dr who can posibly resolve the problem,, Its hard to find the right dr many times but you have to keep looking especialy because your case is more complicated then most,

    Good luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • If they can`t operate it then you may start lloking for alternatives,

    ozone has been used for cancer,

    one of the things they have done is inject tumors directly with ozone,

    look into it.
    Live to Pray
  • First let me say welcome to spine-health. Have a look around and you will find a few others whom have had tumors. One thing that i can suggest to you is to look into the special spinal cord injury hospitals. There are two in the country one in florida and the other in colorado. You might see about sending your images to them first and seeing if you can get a opinion before hand, as that is what they really need.

    Just thought I would stop by and welcome you to spine-health. Keep us posted on how you get along.
  • Hi Brian.

    Thanks for your kind reply, I have to say that I have been through so many alternatives with my specialist that it has now made me tired. I have asked about the Ozone possibility, but I was told that it was a no go for some reason. I do have another what you could call a problem & that is I am in the UK & not the USA. So I have to wait to be sent from one specialist to the other ( this has been done & I feel like I have been on merry go round ) I was also through this been medically retired & so I am on a small company pension & so getting to the states for treatment would be a no go. I will keep on fighting & searching for that one Dr.

    Thank you once again,

    PS, you have a very famous name there. :)
  • Hi TamTam.

    Thank you for your comment, I have to say though that I have now been through all the top specialists in this country. By the way I live in the UK & not the US, they do things a bit different over here. I do wish that I could see some of them in the USA but I am in the UK & on a small medical pension so it is way way out of my range. I will keep on searching & keeping up hope.

    thanks again for your comment

    Ps, Is your name Tamara by the way, as you call yourself TamTam. I was only wondering as I have a daughter called Tamara. :)
  • I am a newbie to forum also and have received so much info and realize I am not alone. First, I am so sorry about the problems you are having. I was curious as to if what you have is called a Schwannoma. I had a growth come up on my tonsil in 2010 and had to have my tonsils removed. When I went back for recheck I was informed that the biopsy was negative for cancer but I had a rare benign tumor that grew on the nerve of my tonsil, only 3 other people in world with this condition of tonsils. It was a tumor that only grows on the myelin sheath of nerve and is made up of Schwann cells. Even though they are rare once you have one they can happen again in different areas. Just wondered if maybe I found someone who experienced this. I hope everything turns out well for you:)
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