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Post by dolphintale on Sept 6, 2013 18:19:37 GMT -6
Cynthia -- Hoping all went well with your surgery, please keep us updated with your recovery.
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Post by Sinèad on Oct 30, 2013 22:38:22 GMT -6
Relatively new to this website so thought i would drop a comment.
I found out about the schwannoma tumour on my spine about two years ago. Constant pain 24/7 would be an understatement, I was a walking zombie living of painkillers, anti-inflammatorys etc.
However the reason I'm writing online now is that I'm tumour free as I had my operation last week, which removed the the tumour. The doctors etc said it was a successful operation, I can't even describe how I'm feeling - I'm overwhelmed with it all as the pain is finally gone. I can't remember a time when I wasn't in excoriating pain so it's strange but in a good way of course.
After the operation, I was so distressed as when I woke up I couldn't even lift my left leg, it was just 'dead' and uncomfortable. I was so worried that I had lost all power of my left leg . Now a week on, I'm walking on my own just about but this dead heavy leg still persists. Does anyone know how long my leg will be feeling like this? It's horrible and I'm still weary that it be a long term thing.
I'm 23 years old and I'm probably only being paranoid, and trying to rush back to health. Typical! But I'd really appreciate help and advice from you all, as I'm quite a worrier! Thank you all x
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robind
New Member
Just diagnosed with mass of Schwannoma at T 11 T 12,, live in Los Angeles in search of neurosurgeon
Posts: 3
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Post by robind on Nov 3, 2013 18:29:12 GMT -6
Hi, and thank you to all who post to this site to help us who are just beginning our journey into the world of Schwannomas. I am a 57 year old female in good health. I was just diagnosed and my MRI report reads as follows "T11 and T12 identified within the spinal canal, 2.4 x 1.3 cm, para centric to the left and displacing the distal cord and cauda equim anteriorly and to the right. They say it's difficult o determine whether the mass is intra dural extramedullary or intra dural. A definitive tail is not noted. With all of that medical jargon aside, I'm frightened but doing research to help educate myself and try to stay calm. I can now correlate prior symptoms from a few years ago to current symptoms, especially after reading everyone's here on this site. I would certainly welcome hearing about your outcomes. And who had had great experience with their neuro surgeon, I'm in Los Angeles. My email is : dzininglady@gmail.com. Thanks to everyone for sharing.
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bryang
Junior Member
Posts: 11
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Post by bryang on Nov 18, 2013 15:35:21 GMT -6
Hi - I just found this forum - also just found a possible Schwannoma on my spine. I say possible Schwannoma because I haven't had surgery yet. I don't have any pain, I went to he ER a few weeks ago because I was having shortness of breath and they found this thing on a chest X-Ray - they said its 4cm and they thought it was in my lung. The shortness of breath was likely incidental. A CT the following day showed its not in my lung, its on my thoracic spine t9-t10 (not in my canal), I immediately saw a local neurosurgeon who had me get an MRI, from the results he thought it looks like a benign schwannoma but he was concerned about what looks to be a hemorrhage inside of the tumor. I also told him that I have a chest xray of the same spot from back in 2009 from when I had pneumonia and it was definitely not there 4 years ago. He wanted to just monitor the growth. I didn't feel very settled so I had an appointment with a top NS from NYU Medical. He said that he is concerned that because he thinks its growing rapidly and he thinks the spot inside of it is a hemorrhage he's worried that although rare this could signify a transformation to a malignancy and that I should have immediate surgery. Doesn't sound like fun - he said he can do it arthroscopically but they have to deflate the lung and all that good stuff. Anyway - not the diagnosis I wanted to hear so I had a third opinion from a top guy at Sloan Kettering who completely disagreed with the second guy who he knows very well and speaks very highly of. He said that he doesn't think that its a hemorrhage inside of the tumor but he thinks its a cyst and a cyst inside a schwannoma is more common and doesn't signify anything. He said he was going to call the other guy and hash it out. Then I told him about the 2009 XRay showing that it wasn't there and that concerned him because he said the normal growth rate for these things is supposed to be 1-2mm per year and mine is 4cm so if it really wasn't there 4 years ago then its growing at 40 times the rate it should. Which in his mind still doesn't mean cancer it could just mean a very aggressively growing benign tumor. I have a follow up appointment with him tomorrow to get his determination. I also have a 4th opinion appointment in 3 days with a new guy. Maybe a 5th opinion is in order too. Is it a hemorrhage or a cyst on the tumor? Apparently the correct answer is pretty important and I guess there is know way to know besides biopsy or surgery.
I was wondering if anyone else presented with a hemorrhage or cyst inside of the tumor?
I'm also wondering what the recovery from the surgery is like. How long before one can get back to work? I run my own business but from mainly behind a desk.
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Post by Ritaw on Dec 5, 2013 14:39:01 GMT -6
So nice to read so many experiences. I am 49 years old. Found out 2 weeks ago that I have a tumor (golf-ball size) growing on my spine between L1 and L2. Had a myelogram to make sure that it isn't growing into my spine and the good news. It's not. I have lower back pain (3 months),. went through chiropractor (against my better judgement), physical therapy for 2 months (no success) and lots of muscle relaxers, Prednisone, etc - before my insurance company would finally approve the MRI. My Neurosurgeon thinks it is a benign schwannoma. I sure hope so. I have to say I'm worried. I also have a lot of pain in my upper left abdomen. Just at the bottom of my upper rib cage. This pain has been there off and on for over 2 years. Still there. I hope that it is also from this tumor.. I hope there's not another one on my rib cage - even though that thought has crossed my mind. From what I've read, pain normally travels from the tumor down your body. Not up your body? And this pain under my ribs is definitely higher up on my body than the tumor on my spine.. My surgery is scheduled for Dec. 13th. One more week.......
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Post by Leofwen on Dec 7, 2013 16:29:07 GMT -6
Hi Rita
Welcome to the forum! If that doesn't sound contradictory as you don't really want to be here.
I hope your surgery goes well on the 13 th. You mention pain above the tumour, this could be referred pain, or caused by altering your gait and the way you do things which causes all kinds of aches and pains elsewhere. Whilst the literature says that the pain will be below the tumour site, you will find from this site that none of us conform to the textbook and that these tumours are quirky to say the least. We are all different and have differing symptoms, even with tumours in the exact same place! Lol
Have you mentioned this pain in your upper abdo to the NS? What did they think?.
Good luck for Friday, I will hold you in my thoughts and hope you have a speedy recovery.
Sue x
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Post by Rita on Dec 11, 2013 9:19:04 GMT -6
thanks Sue.. I appreciate the quick feedback. I have only seen my NS one time - and was the initial consultation after the MRI. At that point, he said it was possible that it was malignant and I didn't hear anything after that. And I was so upset and in shock that I didn't even know what to ask. Of course, my emotions calmed considerably after the myelogram showed that it was growing into the spinal cord and the NS believes that it is a schwannoma. I'm worried that there are 2 of them.. One on my left bottom rib (that's where most of my pain is), and the one in my lower back that was seen on the MRI. I'm thinking I will get through this surgery and then if I still have the "rib" pain - I will pursue it with the NS. I may ask if they will do another MRI while I'm in the hospital. I'm very curious about the recovery time also. They told me probably only 1 night in hospital and I will be able to drive after 2 weeks. ?? I know everyone is different, but is it reasonable to think I can at least do housework (vacuuming, sweeping, mopping) after 2 weeks?
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Post by Leofwen on Dec 11, 2013 18:24:12 GMT -6
Hi Rita I would certainly be asking for n MRI before surgery to make sure you only have one schwannoma. I think for your recovery it will be important for you to know what is causing your rib pain. It would seem to me, a small thing for them to check whilst you are in hospital,anyway.
I was surprised at the timescales for you being in hospital. They seem overly ambitious, but it will depend on how invasive your surgery is. It will be great for you if those timescales are born out. The best thing to do is to write a list of questions for Friday to ask your NS and also confirm the timescales. I wish you well for Friday and a speedy recovery. Sue x
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Post by Sally on Dec 31, 2013 1:39:45 GMT -6
I had the Schwannoma Tumour wrapped around my T10. Was in terrible pain for about 5 weeks or more in the pelvic region and upper quads. Numerous Scans, Ultra Sounds, X-rays, Bloods and MRI.s showed nothing. I thought I was losing my mind! But they were looking in the lower back and pelvic region. I was in so much pain one night Feb 2013, I took myself to the local hospital around 3am. Another MRI was ordered. Higher up this time. They found it and within 12 hours I was in Surgery with Mr. Christopher Thien at St. Vincent's, Melbourne. Both the Surgeon and hospital were wonderful. Next came weeks of rehab at another hospital. Mr. Thien was astounded I was actually still able to walk prior to the surgery and also that I was still going to work. I had only one day off before it was discovered. Anyway, I went back to work in mid April. I am a Beautician and have to stand for my job, which is very lucky, as it is sitting that still hurts. A deep dull pain. I am off all pain medication. I have my 2nd MRI post surgery next Monday. So fingers crossed. I really just wanted to know if anyone on this Forum is in a similar situation. I have always, been so fit and active and now I am exhausted often. Yesterday was a great day, so I went a little crazy and today I am in trouble with the core of my back. It's always bearable, not acute, just a deep core heavy ache. Plus I just want to lay on a heat pack the minute I walk in the door from work. What can I do to strengthen my back? Any ideas or thoughts??? Happy New 2014 to all:)
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sally
New Member
Posts: 2
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Post by sally on Dec 31, 2013 2:14:35 GMT -6
So I have just joined The Forum as a Member. Same name.
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