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Post by Natosha on Nov 28, 2011 9:43:23 GMT -6
Hello, I am almost one month out of surgery. Sadly, I'm 25 and haven't had any real surgery experience and no idea what to ask during my consultations. I felt VERY uneducated by my drs and surgeons. I'm in severe pain everyday, none of my friends or family understand what I'm going through. I've been off any kind of narcotic medication for a little more than a week now. I'm not suicidal, however I do sometimes wish I never made it out of surgery because the pain is so severe. They did a Thoracotomy,-(sp?) Through my right side. The way my surgeon explained it, which was NOT very detailed or too helpful was that it had grown from my spine into my chest. The was it was found was I was in ICU in july of this year for an unrelated incident, During my stay I had daily chest xrays which had shown the mass, the biopsy said it was schwannoma. They initially did the biopsy on my right lung, then said it was on my spine.. I don't really EVER recommend going to st. johns in Springfield to ANYONE. IF ANYONE has ANY helpful recommendations on how to manage my pain PLEASE HELP!!!! I keep hearing how staying off narcotics is what is best for me, but I'm barely 4 weeks out of surgery and I TRULY can't face this pain much longer. I DON"T KNOW WHAT TO DO, PLEASE HELP!!!!
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Post by rick81 on Nov 28, 2011 22:02:39 GMT -6
Hi Natosha im sorry you had to find this board. Im so sorry you had to go through this grueling surgery at such a young age. I had my thoractomy for a schwannoma on my 30th bday nearly 6 months ago. Am i getting this straight that your not on any pain meds and your only 4 weeks out. I was on dilaudid for 5 months after surgery. Im assuming your surgery was done by a neuro and thoracic team, you need to contact one of your surgeons and get the pain meds you need. Its perfectly normal to be in tremendous pain after this surgery we were slit open like turkeys on thanksgiving for god sakes. Apart from pain meds what is coming through big for me is the drug Lyrica. It works on all the numbness you have through your back and side. Make sure you get a strong opiate like dialudid or oxycodone and lyrica the combo will make things much more bearable for you. Stay calm things will only get better for you. Things got much better for me around 3 months or so.
How long is your incision? Did they need to fuse your spine? Were your ribs damaged at all? IM sure you feel like a belt tied tightly around your chest? That was the worst part for me it will go away after a few months. Do your breathing exercises, walk and stretch as much as you can, and get a strong pain killer and Lyrica. Wish you the best im here if you have any questions or just wanna talk.
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Post by Midge on Dec 16, 2011 22:32:42 GMT -6
I am 72 years old and had a schwannoma removed a year ago. I had no symptoms and it was discovered when I had an ultrasound of my kidney. I had the surgery in Dec. 2010 and they removed a 20 pound tumor. I still have no idea why I didn't have any symptoms from something so large. My doctor felt that it had been growing for about 30 years. They went in through the back and removed portions of two ribs and spred the other two. I ended up with a large bulge on my left side which I was told would go away once the nerve started to heal. Well here I am a year later and the bulge has not gone down and now my nerosurgeon tells me that the nerve has been destroyed and will not make the muscles work. The size of the bulge has caused me severe back pain and now I have to walk with a walker and for the most part, I can not stand up straight. I'm being told that nothing can be done which is very depressing. There has to be something to fix this. Any ideas ot thoughts?
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Post by alisa on Jan 21, 2012 14:47:11 GMT -6
Hi, my mom was just diagnosed with schwannoma at T11. She has had horrible back pain for almost a year and her MD just did the first MRI. She is complaining of numbness/tingling in her feet. She will have surgery next week. I am just looking for any advice and what we can expect in the weeks to come. How can I be of the best help to her? She is in otherwise perfect health. thanks Alisa
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Post by bowtruckle on Jan 22, 2012 10:31:17 GMT -6
Hi Alisa,
Sorry - I haven't had my surgery yet, so can't really offer any advice for your mom. If you post your questions on the general forum, I'm sure you'll get more responses.
The people here have a wealth of information to share, and I know that I have found this site to be invaluable.
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Post by proxyii on Jan 24, 2012 10:47:20 GMT -6
Hey Alisa,
I'm sorry to hear about your Mom. I have an S1 Nerve Root Schwannoma. I had surgery November of 2010, and was on the table for over 8hrs only to wake up and find that they couldn't remove it. The tumor is so intertwined with my nerve root that if they take it out, I'd loose all function in my leg.
Immediately after Surgery I was in horrible pain, and couldn't even sit up by myself (30yrs old). When they open you up in the lower back, all the muscles get screwed up. I could walk slowly 3days after surgery. If your Mom is on pain meds now, make sure her NS gets the hospitals pain service engaged prior to surgery if at all possible. I was on HIGH dosages, and even after explaining that to my NS several times before surgery, he perscribed me the bare minimum immediately waking up from surgery that was no where near what I was taking normally. I was in so much pain, finally got the hospitals pain service there and got the appropriate amount of pain control. At the hospital you'll just want to help your Mom get up and walk around when she is ready to do so. Don't be surprised if she sleeps A LOT. I had an 2 1/2 drive home 3 days after surgery which was horrible. Finally we pulled over and I laid down in the back of the SUV. So that may be something to consider if you have a long commute to and from hospital. Other than that, having someone on hand to help get ice packs, medications (and keep track of them for her), food, drink. Encourage her to walk as much as possible. I'd say 5-7 days after my surgery I could have been self-sufficient if I needed to. I was fortunate to have more help than that. If the pain meds are not covering the pain for your Mom, call the doctor and tell them that. It is their job to keep the patients comfortable, and if you can't rest your healing will be slowed.
Good Luck!
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Post by bowtruckle on Jan 26, 2012 7:16:20 GMT -6
Hi Proxyii,
I also have a nerve sheath tumor (possibly Schwannoma) at S1. I'm amazed you were out of hospital so quickly - especially given the pain you were in. Do you have any other low back-specific advice to offer for coping after surgery? My tumor is bilateral at S1 (dumbell shaped), and has moved upwards to L5. I'm trying to arm myself with as much information as I can.
Where did you have your surgery? I take it your symptoms and pain were quite severe before you were diagnosed and had your operation. Since they couldn't get it all out, how often do you have to have follow-up MRIs? You're the second person that I've read about on this board with a tumor in the S1-L5 area where the NS couldn't remove it all without causing significant motor nerve damage. Has your pain improved in the year or so since your operation?
Thanks in advance & sorry Alisa for crashing your question! I hope that all is going ok with your mom.
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Post by sara on Feb 27, 2012 3:11:14 GMT -6
Hi. I'm so glad i found this forum.
Should I see a neurologist or a neurosurgeon for schwannoma? I do have 2 past MRIs and will be getting another one soon, which i asked my new family physician to order for me since we've moved to a new area. Should I actually consult a neurologist or neurosurgeon first before getting another MRI?
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Post by ctbludevil on Mar 2, 2012 7:46:14 GMT -6
You can see a neurologist or neurosurgeon depending on where the schwannoma is, I have had three removed and have an appointment today with a neurosurgeon for one a T-11. I had one removed form my spinal cord at C-4, one in my hand and one in my back. In addition to the one at T-11, I have one in my forearm.. Start with neurologist if not sure. He/she will order MRI depending on where pain and will probably ask the MRI be done with and without contrast.
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sarahn
Junior Member
Posts: 11
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Post by sarahn on Mar 5, 2012 0:38:14 GMT -6
Hi, I am so glad to have found this forum. Im 31 yr old mother of 3 a 6yr, 4yr and 2yr old. I have just had surgery 3 weeks ago ( Feb 10th 2012) top remove schwannoma tumor from C 4. I am doing ok, Im on oxycodone and panadol for the pain but I am finding it is improving each day. I finally had the best night sleep Ive had in 3 weeks 2 days ago.
I am numb on my left collarbone/shoulder/arm area. The nuerosurgeon couldnt remove the entire tumor though because it was too close to nerve that controld diaphragm ( if it was all removed I wouldnt have been able to breathe by myself)
I am lucky he did the surgery now as he said within 12 months I would have had paralysis. It was flattening my spinal cord.
I am not sure what will happen now that some has been left but I have an appoimtment with him in April for follow up but an MRI booked for 3rd July to see growth etc.
Does anyone know whether in time Schwannoma's can turn cancerous or they stay benign forever? Ive just been wondering as I now will have to live with this slow growing tumor for life which is a very frightening thought.
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