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Post by ctbludevil on Mar 5, 2012 16:25:05 GMT -6
From what I know, schwannoma's are almost never canceruse. I took alot of vitamins B's to help with nerve regeneration
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sarahn
Junior Member
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Post by sarahn on Mar 7, 2012 0:45:43 GMT -6
Thankyou , I know my schwannoma is benign I just wonder if there is any guarantee that it will stay like this forever now that surgery has been done and the entire tumour couldnt be removed.
Thanks I will look into the Vitamin B :-)
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Post by bowtruckle on Mar 7, 2012 7:12:05 GMT -6
Hi Sarah,
A fellow Aussie here (and possibly a fellow schwannoma victim) - so I just wanted to say hello.
I have read that if they can't remove the entire tumor, there is a possibility that it will start growing again. Whether or not it could turn cancerous is another matter. The NS I met with told me that most spinal cord tumors are benign, and the chances that mine were malignant was pretty slim.
I would definitely ask your NS when you go to your next appointment, and ask what your options would be if the tumor comes back. Do you know how much was left behind? I imagine you'll have to have fairly regular MRIs to check for any re-growth.
Do you mind me asking, where did you have your surgery? My husband is American, (we're currently living in Bahrain) and we looked into both Australia and the US for a second opinion and future surgery. We ended up opting for the US for a whole host of reasons. We fly out in a few weeks time.
Hope you're healing and not in too much pain.
~ Kirsty
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sarahn
Junior Member
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Post by sarahn on Mar 7, 2012 23:57:14 GMT -6
Hi Kirsty, Nice to meet you, I live in Victoria and I had my surgery in Melbourne at the Royal Melbourne Hospital. My Nuerosurgeon is wonderful, Im so amazed at the delicate work he had to do and I am so very lucky that he did a wonderful job.
Mine is a benign Schwannoma , I just wonder if in time down the track it could turn cancerous. Il have to ask NS. I dont know exactly how much was left. I see him on April 23rd and then I have an MRI booked for 3rd July and Il see NS on the same day to see exactly how much is left.
Il def ask what options I have if it continues to grow again , which he did tell me it will more than likely do. Im afraid of what will happen if it grows as big as it was, hoping some sort of treatment can prevent that from happening.
I have been very lucky with my NS, it is great that you had the option of the US and a second opinion. Why did you choose the US?
I am getting there slowly, I am improving with the pain. Ive noticed some new symptoms that I didnt have before the surgery so Il need to ask about that. The left side of my left hand and my little finger just goes numb and pins and needle type feeling. Its happened three times over the day today.
I see in your signature that you are being seen my the mayo clinic in April, Can you tell me what that is?
How is your pain?
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Post by bowtruckle on Mar 8, 2012 0:13:37 GMT -6
Hi Sarah,
I'm also originally from Victoria. I've been living overseas for the last ten years, but I was home in December/January for Christmas.
I am no longer covered by medicare in Australia, and our health insurance is American. Our co-pay doubles if I see doctors/surgeons who are not part of our Health Insurance's provider network. There was only one neurosurgeon listed in Melbourne in their network, and he didn't list spinal cord tumours as one of his main clinical areas. The Mayo Clinic in Rochester Minnesota has a very good reputation, and my husband is from Minnesota (we have a place to stay there), so that is why we opted for the States rather than Australia.
My pain isn't too bad at the moment. I have hip/buttock pain in my right leg, sometimes sciatica/shooting pain that travels down my leg and pins and needles in the sole of my right foot. I have a weird "cold" patch on the back of my left calf. It used to drive me nuts, but I'm more or less used to it now. In the scheme of things, it's very manageable.
But both of the tumours at S1-L5 have an extradural component. On the right side, the extradural portion of the tumour is approximately 5cm x 4 cm x 4cm - extending into the pre-sacral space. It is already squishing things, and if it gets too large, I'll likely lose bowel and bladder function. The NS I saw here thinks it is responsible for abdominal pain I've had on my right hand side as well. The tumour at T1 is much smaller, so I'm hoping to leave it be for now.
The new pain you are experiencing is probably related to your nerves healing. I guess people who've already had surgery can better advise you there.
Hang in there!
~ Kirsty
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sarahn
Junior Member
Posts: 11
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Post by sarahn on Mar 10, 2012 17:48:25 GMT -6
Hi Kirsty, I understand that it must be difficult with the now longer being covered by medicare in Australia and your network only having the 1 NS in Melbourne. What was his name? My NS is fabulous, Im so happy and feel very lucky that I was able to have the surgery so quickly and that although I havent had another MRI or anything as yet and as unfortunate it is that he couldnt remove the entire tumour and I now have to live with it he did a wonderful job. I dont have PHI so I was able to have a fantastic NS who did the surgery at Royal Melbourne Hospital under medicare with no cost.
I do have to pay for my MRI in July which will be about 500 dollars and then to see the NS as he is a private specialist but I am happy with that. A friend of mine's mum needed spinal surgery and she went as a Private patient and had to pay $ 35,000. Not something I have right now with my 3 young children 2yr, 4yr and 6yr old.
Im glad your pain is manageable at the moment. I hope that your appointment at Mayo Clinic goes well and you are able to have the tumour removed asap. It sounds as though its a fantastic reputation and you will be in great hands.
My little finger is on left hand and left little finger is numb, its a bit strange that this only happened just shy of 4 weeks after surgery but as you say its prob due to nerves healing etc. I will be asking my NS on Tuesday however when they open again. Monday is a public holiday here.
I hope your appointment goes well with the Mayo Clinic, make sure you update us on how you go.
Take Care Sarah
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Post by justbadluck on Mar 13, 2012 17:02:04 GMT -6
i had this tumors ever since was a teenager..! but did not know what it was..! went to all kind of doctor but they not know what it was..! the older i got the more these tumors showing up..! i was like all great...! a few years pass i was told i have MS...! ok..! 5 month pass..! finally i found out i have NF1..! but i also have 2 kids..! a boy thats seven...! and a little girl that is six years old..! but when she was born she had these spot on her body..! thats when i found out aboyt NF1..! doc told me to keep a eye on her..! but these tumors came early for her..! now i found out that she might have tumors in her head..! doc order a MRI but she so small and if they put her to sleep and she might not wake up..! all i do is pray..! for me theirs nothin that can be done..! i tell the doctor save my baby and forget about me..! i live for my kids..! i die for my kids..!
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Post by bowtruckle on Mar 14, 2012 8:28:07 GMT -6
Dear justbadluck,
I'm so sorry to hear that about your diagnosis, and that your daughter also has NF1.
Have you looked at the Children's Tumor Foundation web site? They have a lot of good information about Neurofibromatosis (www.ctf.org). They have discussion boards, so it would probably be a good place to get some advice and would provide an understanding, sympathetic sounding board for both yourself, and your daughter. They also have listing of neurofibromatosis clinics within the US. If you are outside of the US, the discussion boards may be a good place to ask about doctors knowledgeable about NF in your country.
Wishing you and your family all the very best. I hope that you are able to find the best care available.
~ Kirsty
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Post by ctbludevil on Mar 30, 2012 10:01:46 GMT -6
On March 14, 2012 I had a tumor removed from mt spinal cord at T-11, Surgery was supposed to be about 2-3 hrs ended up being more like 7.5. Nerves were wrapped around tumor which made surgery longer. Just over two weeks post op and I am back in the office a few hrs a day, driving and trying to get back to normal.
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mcb82
New Member
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Post by mcb82 on Mar 31, 2012 23:24:26 GMT -6
To: JustBadLuck, #66- Sorry to hear about you and your daughter having NF1. We live in the Los Angeles area and my son is being followed at Children's Hospital of Los Angeles (CHLA.org), following his surgery for L2-L3 schwannoma, in Jan, 2009. His neurologist at CHLA is Dr. Tena Rosser. She specializes in Neurofibromatosis. They also have an excellent oncology team and neurosurgical team. Our son had his surgery at UCLA, then transitioned to CHLA after a change in our health insurance. I wish we would have gotten a 2nd opinion from CHLA before his surgery, but he was having extreme pain and we felt we were short on time. The docs at CHLA are very parent friendly and supportive. Please see if you can get your daughter a consultation. If you need help with arrangements, try calling their social services office for information. Please keep trying!
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