spinal tumour

Hey guys,

I dont know the right place to put this down, but i thought i would write my thoughts,

I am a 33 year old male living in australia, very active climbing and doing all sorts of sports,

recently well today i was given the news i have a spinal tumor in my T1 area its all mumbo jumbo to me right now but i just wanted to share my feelings and what has happened in case someone else is feeling like i did..

So anyway about 2-3 years ago out of no where i started feeling tingling in my right upper thigh area.. i started feeling a bit funny in the leg so i started getting masages, then my toes started to go cold well thats what i thought it was but they are Numb, then it started my knees were cold(Numb) pins and needles, then after having massages and then seeing a pysio they said it could be from your sports, i was super fit , but after 6-8 months of this i started feeling tingling around my rightside waist,

a few months passed and it was started to make me angry i thought is this ever gonna go, i went to a acupunturist and they said i may have nerve damage, 6 visits and nothing, went to a chiropractor he said i have sciatica problems.

after 2-3 years of putting up with cold legs and trying to sleep. the last 3 months it transferred to my left side, where my left leg was week and i occasionally stubbed my toe and my work boot on the left was always scrubbing out..when i had trouble lifting my leg into the car to drive i knew something bad was happening.. 3 weeks ago i went to a doctor who said you may have a spinal injury but i thought how?? i was never in a massive crash or like!! he referred me to a neurosurgeon who sent me for a MRI telling me i could have MS or a brain tumour or tumour in the spine..

meanwhile i was running into walls walking up my home staircase, hard to bend over.. vertigo falling over a real problem.. trouble going to the toilet to piss..

yesterday i had a MRI today i was told by the doctor that i have a tumour in my sphine around mid to upper back its the size of a golfball and is pressing on my nerves,,

If this is happening to any of you go and see a doc and ask for a MRI i have been going through 2-3 years of not feeling my legs thinking my so called nerve damage will come back, and not realising that a tumour is pushing on my spinal chord..

now i wait for a hospital appointment and go and get it removed,its operatable but not sure what i have..

if that has helped anyone then i am glad my bad luck has helped anyone out there...

i have been feeling alone, helpless and mentally going crazy, me being a 33 year fit young man and believing i am invicinble does not help.. but i guess i now know i aint..

Off for an operation soon i hope..

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Mine is L4 much lower, I also climb and i have not let it stop me from doing anything, i just ignore the pain easier said than done. I suggest seeing a neurologist and a neurosurgeon, as NF has other complications. I have high blood pressure caused by a high level of adrenaline, i hadn't been doing anything that would put it up high for a few weeks due the weather and work commitments. The renal physician i saw for my blood pressure was worried about my resting blood pressure 170/90. i would love to have taken a pic of her face when i told her some times i feel my heart beating like it wants to escape my chest due to the adrenaline rush im getting

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Oh, I know!

The two I had in C1 and C2 (total of 4) removed in 2007 are 50% back and can't be removed. Nor can the ones in C-3, C-5, T-2, T-7, T-9, L-3, L-4, L-5 ....

"Not a happy story," as my neurologist puts it.

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@ youngbutfeelold,
First off, God Bless you. I hope that they can do something about it.
Second, please note that this is not to start anything too much of a political argument, but I need to ask, does Australia have a national health care system? If it were me having those symptoms here in the U.S.A., it would not take 3 years for the doctors to decide that I need an MRI.

@ the U.S.A. residents reading this, his response could help us in our upcoming elections. We NFrs need to be sure that any kind of health care reform is going to be beneficial to us.

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@PVA --

I'm NOT voting for Obama, BUT there is at least one part to his health INSURANCE reform [not "health care"] that I like. I can no longer be denied treatment because my NF is a pre-existing condition, and if, God forbid, I develop cancer, the insurance carrier can no longer cut me off because they can't make a huge profit off me.

Health care in Australia is provided by both private and government institutions. The Minister for Health and Ageing, currently Tanya Plibersek, administers national health policy, elements of which (such as the operation of hospitals) are overseen by individual states.

In Australia the current system, known as Medicare, was instituted in 1984. It coexists with a private health system. Medicare is funded partly by a 1.5% income tax levy (with exceptions for low-income earners), but mostly out of general revenue. An additional levy of 1% is imposed on high-income earners without private health insurance. As well as Medicare, there is a separate Pharmaceutical Benefits Scheme that heavily subsidizes prescription medications. In 2007-08, Australia spent 9.1% of GDP on health care, or A$4874 per capita.

In an international comparative study of the health care systems in six countries (Australia, Canada, Germany, New Zealand and the United States), found that "Australia ranks highest on healthy lives, scoring first or second on all of the indicators", although its overall ranking in the study was below the UK and Germany systems, tied with New Zealand's and above those of Canada and the U.S.

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The US health system has been broken for a long time with astronomical prices trying to balance the care given to those who are underinsured or not insured and can't pay. I'm also not an Obama fan because I am fiscally conservative, but I strongly support a fairer medical system that makes it possible for everyone to have access to the care they need. Like any insurance, you shouldn't complain if your pay into a system and never get anything back. You should be grateful that others are using that money to get the care they need and that you remain healthy. For example, most people hope that they don't get to cash in on their life insurance :).

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hi i am facing dumbell tumour removal in september on c1. i am not looking forward to it but my surgeon is confident. i WILL be back in the gym!

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I too have a tumor in my chest /back fluid filled,(dural ectasia) Spinal fluid I guess . It is huge in likeness to a cantaloupe.I am having surgery to reduce the size by having a shunt placed to drain some of the fluid. CRAZY... I have had many Drs pass me on saying they did not want to operate. Do to how serious it could be to me to remove it. So now we will try to make it smaller instead. Quite not sure what to think, but onward we go, hoping the , praying too for the Drs magical hands to do the right thing. My surgery is March 20. coming up fast.

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Hey Thanks for the responses,

Not too worried about reading political stuff,

As it was stated above we have medicare and private health cover..

I went to doctor and it was free i booked in and saw him in under a week, walked in and walked out no payment, just showed my medicare card, then was refered to a neurosurgeon, the full payment was 400 bucks but i pay 180 and medicare pay the rest . so my trip for that was 180 and i waited a week from doctor to neurosurgeon,

Then the MRI was booked for a week later and it costs 480 , i only paid 150 and medicare is billed the rest

i am glad i dont live in the states its a shame you guys are getting shit deals....

My doctor is calling around looking for a surgeon to complete my surgery and he said give him a week or two and i should be going under the knife..

Thanks for any feedback from others guys much appreciated..

I cant wait to feel my feet and legs again and stop having vertigo and running into walls..

its gonna be a long road to recovery i would expect as its with the sphine...

maybe even learning to walk..

can others please tell me how long before they feel functionable again to go swimming or walking running again!!!!!!!

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For future advice try and find out if your local hospital has a neuro, i see both the neurologist and neurosurgeon at my local hospital. Its free but the lead time to your initial appointment may be some time its all covered by medicare thou so you can spend the money saved on what ever you want/need.

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Holy Overcharge, Batman! 480 for a MRI?? 480 Australian Dollars = 509.90 US Dollars! Here we can be charged in the thousands for an MRI. Under my old plan, (the HMO system instituted under 1996's "Contract With America") my CO-PAY was about $1,000!

Praise Jesus that I am now covered under my wife's union (a branch of The Teamsters). We're both fully covered (including vision, dental, etc.) for a whopping $36 a month in union dues. My last set of MRI's cost $8,950. NO CO-PAY. Paid in full.

Anyway, when I had the 4 removed from C-1 and 2, it took about 5 months before I could walk without a walker. Right after the operation, I was actually WORSE than before for roughly 6 weeks, which was VERY scary. Then slowly got better.

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Artie given how sue happy you Americans appear to be, is it little wonder with such things as medical related stuff the prices are so high

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i am shocked at the expenses for your surgeries and scans, i am fortunate to live in England with the NHS even if it is in a rather bad state of repair.

I am very scared about the tumour removal. i know they cannot go in and remove all of it, just debaulk. i have a horror of paralysis and my surgeon suggests that maybe i will go to the spinal injuries unit at the royal hallamshire hospital for physio but i want to get back to the gym. i was advised to stop going by my surgeon when the dumbell tumour was discovered.

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I actually had HORRIBLE back pain for a few months, to the point where sometimes I would almost want to scream getting up from a sitting position. Saw an acupuncturist and it helped, but kept coming back. Around this time I had a small (peasize) tumor around my knee. Dermatologist took about 3 minutes to remove it and boom, back pain was COMPLETELY gone.

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any others willing to share there re cooperating periods as i really wanna know how long and what i will be feeling after the op..

will i be lying in bed on my stomach or side for months will it be key hole surgery or will it be a huge slice in my back ,

the tumour is halway down my back in on the spine..

Let me know guys thanks

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You make a vaild point, Tripper. About 40% of malpractice cases are friviolus. Of course, when one goes in for a galbladder operation and wakes up missing a leg ... that's a legt issue. When a doctor berates a patient -- my mother -- for repeatedly asking for a referal to a breast speciaist because she feels she has cancer, and the "doctor" insists it's merely a minor infection, and two years later she's dead from breast cancer ... THAT is a legit issue as well.

But I think an equally significant factor is medicine has transformed into BIG BUSINESS, where massive multi-million dollar profits are generated, taking preferece over patent care.

Hospital Corporation of America (HCA) is the largest private operator of health care facilities in the world and was founded by the grandfather of former Republican Senator Bill Frist. The "family business" earned 9 billion in 2008. Sen. Frist was a huge advocate for ending malpractice lawsuits.

Select Medical was co-founded in 1996 by Rocco Ortenzio and Robert Ortenzio. Its parent company is Select Medical Holdings, which is listed on the New York Stock Exchange. It earned 7.4 billion for it's stockholders.

But we're getting way off topic .... sorry. I'll let it go.

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Interesting thread to read.
I'm actually from UK and I have a BUPA cover which is only doing very little to help me much. Whilst it is a major private medical insurance provider in UK, it does not cover any medical help for chronic illness you're already diagnosed with or anything that you are known to have. Also, once you have another new diagnosis then it will be automatically excluded for any subsequent treatment. (maybe, I'm not expressing this quite well but..) We have been paying literally thousands over the year for this stu** insurance cover which seems to keep telling me "you can't do this or you can't do that" etc.

I do know private insurance in the US work quite differently and you pay so much each month but knowing how much my H is paying in his tax which goes to our national health service (NHS), I personally think it's nowhere near perfect (as we know). It is known NHS is only viable when you're about to die, not when you have some pulse going. Yes, I hate NHS.

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I had 2 dumbbell tumors removed from C2 in December. I feel really great! I haven't run yet as I have never been a runner, but I feel like I could. I've been hesitant because I'm pretty sure a tumor on my sciatic nerve would cause me too much pain to run, still not completely sure though. I had an excellent surgeon at an excellent hospital. He removed some bone from my spine, took out the tumors, and was able to put the bone back. I was on my feet the next day and got rid of the walker the day after that. I honestly am still amazed at how much has improved. I can turn my neck without pain, I can lift my legs (and not just a couple of inches, high!), and all of these crazy reflexes to temperature and reflexes to texture and stuff for my feet are gone. My balance is back too! Other than some numbness now in the back of my head, everything has improved and is up to par with others my age.

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Just an updat i have surgery in a few days , i cant wait to get this over with.. and get healthy again,, i will write here how i am after i get out of hospital in a few days

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I suggest you join this online NF2 Group here in Australia. We all share experiences, stories and advice about NF2.

Oh, and we're a good mob to know as well!!


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Finally home guys,

after a few days in hospital...now i cant move my neck and pretty much laid in bed, its pretty bad to feel like a person who cant do anything and have to reliy on others but the drugs are good..

My next question is its only been 4 days since surgery and i am at home resting and tired, last night i stopped taking the big drug to see if the pain went away. well last night i had the best night sleep, found a good comfy position..

anyway real question,

when is it to fast to start moving my spine around, i have been taking small steps to toilet and feel dizzy and nausea, but i know soon i need to start walking around more and more..

thanks for any help from others who have been here and understand what i am going through..

i have a heap of old 50/s movies i am gonna sit down and watch,, they go for hours and have atleast a storyline i can follwo


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