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Post by Rita on Jan 2, 2014 13:52:25 GMT -6
So, As a followup to my earlier posts, my surgery was on 12/13/13. Yes - Friday the 13th. It took 4 1/2 hours. It was larger than a golf ball - but smaller than an orange on the left side of my spine at L1 and L2. I was in the hospital for 2 nights. I am at 3 weeks post-op tomorrow. I just drove my car today to an appointment. I am walking and off pain meds for 3 days now. Although I did take some ibuprofen today. All sounds great - but I am an emotional wreck. I just cry for no reason. I have a lot of numbness in my lower left abdomen and left upper thigh, and left hip. When I went to the Dr. to get staples out - the nurse said it was normal. But I must say I'm getting worried. And even though I can walk fairly well, I can't bend over or do any housework. I was supposed to start physical therapy today - but they said since it was considered outpatient that I would have to pay $250 per visit until my deductable was satisfied (which just started over yesterday - $2500 deductable) So - I'm not going. I owe the hospital $5000 from my surgery in December and just can't afford this. So, of course, more reason for tears.. I know it will get better and I'm going to walk at least 1/2 mile a day as my own therapy. I have a great husband who supports me 100% - so hopefully he can talk me through this emotional roller coaster while I continue to recover. It's nice to see that I'm not the only one going through this.. Although I am sorry for all of you that are on here. I wish it didn't exist..
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Post by samuridude on Jan 2, 2014 16:56:27 GMT -6
Hi Rita,
You should be jumping for joy, most of us were in a wheel chair at week 3. If you can walk 1/2 mile then I would forgo the $250 a day PT and sign up at a gym, get yourself a certified personal trainer. I did this myself and progressed a lot faster rate then I would have with a PT.
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Post by Scronti on Jan 10, 2014 10:52:20 GMT -6
Hi.
I had a schwanomma between L4 and 5, it was the size of a water melon when it was removed in 2012. Recovery has been slow, I have real issues with my hip, left leg and pains in my pelvis. I need some advice really, I have recently put on loads of weight in my abdomen again and am terrified its back. Im on a diet and nothings happening.
Nobody knows how long my last tumour was there or how quickly it grew.
Any advice would be appreciated as im terrified.
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sally
New Member
Posts: 2
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Post by sally on Jan 11, 2014 18:26:19 GMT -6
Hi Scronti, Get a check up. It could be something much more simple. Fibroids etc. We ALL get terrified that the bastard of a thing will return, but this is very rare. I know my mind makes me think crazy things occasionally, but I had my 2nd MRI Post Op last Monday and saw my N.S. Tuesday. My spine has started to straighten itself out and he was very pleased with my recovery. But up until then, I also was terrified. Cheers Sally.
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Post by RitaW on Jan 15, 2014 18:35:51 GMT -6
Hi Scronti, i would definitely get another MRI. I just had my tumor removed on 12/13/13 and my neurosurgeon suggests a followup MRI in 6 months and another one 6 months after that. I'll have to pay for them - since my deductable is 2500. But I'll figure out a way. I still have numbness in hip, upper left leg, and left lower abdomen and my tumor was a lot smaller. I get sharp pains occasionally too. Try not to worry until you can get it checked out. It is rare for them to grow back. Can you make an appointment with the Neurosurgeon that removed it? It probably looks like you've gained more weight than you have because your stomach muscles can hold up or hold in any weight. My stomach looks worse than ever. Good Luck...
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Post by samuridude on Jan 16, 2014 13:05:34 GMT -6
It probably looks like you've gained more weight than you have because your stomach muscles can hold up or hold in any weight. My stomach looks worse than ever. Good Luck... That's interesting you mention that, because my stomach looked like it belonged to someone else. It's kind of like having a stroke all over your body, as the nerves aren't keeping muscles tight. It was probably 3 months post until I could flex any of my muscles. I'm 6 months post, been doing intense exercising for the last 3 months and my muscles are just showing signs of growth.
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Post by kate123 on Jan 22, 2014 19:57:38 GMT -6
Hey guys,
I'm so glad I found this group, It's so comforting to find others who are going through/went through the same thing. I'm 19 years old and I was to the point where I thought I was just going to have back problems for the rest of my life with no relief.. until I recently found out I have a schwannoma on my spine between C-2 and C-3 on the right side. I have had upper back and neck pain for over 3 years and have been told everything in the book.. until finally an MRI confirmed that I have what my doc told me was a rare spinal schwannoma. I have constant aching in my upper back and between my shoulder blades, as well as my right shoulder and neck. The pain has been getting increasingly worse, I am in school right now for pre-med and it's a struggle to just sit through a class.. by the end of the day the pain is so bad and I can't seem to find relief. It's so frustrating.. there is not a time when I don't have pain and it's hard for me to commit to school when i'm struggling with this on a daily basis.. and at this point I am willing to do anything to get relief.
I have visited 2 Neurosurgeons so far, the first one was of no help. She basically told me that my pain had nothing to do with my schwannoma, that it was all muscular and that she couldn't help me. I went for a second opinion and had a completely different experience. The Dr. was amazing, he has a great deal of experience with spinal nerve tumors and has done numerous schwannoma removal surgeries. He explained everything about my schwannoma and my symptoms to me in great detail.. and gave me options. He told me that I have had it for about 3 years because it is pushing on my foramen in my vertebrae. He told me that although schwannomas are slow-growing, as it grows it will eventually reach my vertebral artery which will be a much more serious matter. He told me that I could either wait, and have a follow-up MRI in 6 months to monitor the growth, or depending on my symptoms I could have it removed now. He prescribed me neurontin and valium for the pain, and scheduled a follow-up MRI in 6 months but to call if the symptoms worsened. He told me that my symptoms are without a doubt caused by the schwannoma, because my back muscles are constantly spasming and contracting. He told me that to my advantage, the nerve it's growing from is a "silent nerve", and post-surgery I would only experience a numb patch behind my right ear as well as some numbness on the top of my shoulder, possibly some muscle weakness in my shoulder as well. The bottom line is eventually I will have to get surgery, either now or later once the schwannoma has grown closer to my vertebral artery. My worry is why wait until the surgery could be more risky than it already is.
I am at a loss.. I am so sick of dealing with this pain and it is to the point where it has just become part of my life. My plans are to go to med school once I graduate, and I'm afraid I won't be able to pursue it with this holding me back. At this point I just want this thing out of me, I want to be able to feel normal and pain-free and rid myself of this burden. I have had to quit 2 jobs already because of my back and I just want to live my life the way a 19 year old girl should. I understand the surgery is very major, and I'm worried about the recovery, and also whether or not I will have relief. I have read stories about people who have had surgery and still experience pain sometimes worse symptoms such as tingling. If anyone has any input or advice I would GREATLY appreciate it. Any experiences post-surgery or who have been in similar situations.
Thank you so much
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Post by samuridude on Jan 23, 2014 11:32:55 GMT -6
Hi Kate,
How large is the tumor? Did anyone talk to you about shrinking the tumor with radiation? You're very young and have youth on your side.
-Good Health
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Post by Page Saxon on Feb 10, 2014 23:38:02 GMT -6
Hi. I'm was just diagnosed with a Schwannoma on my c4/c5. I'll be 28 in just a couple weeks and I've had pain in my left neck/shoulder all through my twenties... Possibly even since my late teens. I'm having surgery in 10 days and am just curious about recovery time. How long should I expect to be out of work? The neurosurgeon said up to 3 weeks, but I'm having a hard time believing I will be out for so long. I should also mention that the tumor has degenerated one of the vertebrae facets. Because of this I will also have my c4 and c5 vetertbraes fused together to prevent my spine from slipping out of place in the future. Anyone who's had a similar surgery please share your experiences with me.
Thanks so much.
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Post by MJJ on Feb 15, 2014 17:12:15 GMT -6
I (52 year old male; active and fit prior to surgery) just had a Schwannoma (that was likely present affecting my balance/coordination for a couple of years) successfully removed from my T11 spine region on February 6th, 2014. Other than occasional Tylonol I am no longer on any pain meds and am finishing up the NS prescribed drug regimen Sunday :-). I was in the hospital for 2-day, and walking with the assist of a walker the day after surgery. Today I walked for 3 miles and am regaining my balance and coordination very quickly.
After reading other posts it appears I am recovering extremely fast from the surgery. But during the MRI the doc saw 3 other small tumors that will be monitored. Getting through the one surgery was tough enough (yes I realize my experience was A typical, the doc says I was an A typical patient with an A typical procedure); I fear that I might be facing surgery again in the future. Has anyone looked at alternative options to surgery?
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