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Post by nellie on Oct 17, 2011 9:42:56 GMT -6
Hi. I am new here, my name is Nellie and I am from Ontario, Canada. I am so glad that my daughter found this site for me.
I was diagnosed with a intradural tumor situated at the T10-T11 in December 2010. It was successfully removed by surgery in February 2011 and was confirmed that it was a schwannoma.
Before the surgery I experienced extremely painful muscle spasms in my lower back and hips. Thankfully I no longer have these but now I have a lot of discomfort in the mid back where I was operated on. This is brought on by doing light household chores and mild lifting. The only thing that brings relief is to take some pain medication and lie down.
Another thing that I struggle with are emotional lows that seem to come out of nowhere and last anywhere from a few to several days. I am having a hard time trying to figure out what is going on with this.
Has anyone else had any similiar expereinces with their recovery? Am I expecting too much too soon? I would love to read your comments.
Nellie
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Post by rick81 on Oct 17, 2011 11:12:21 GMT -6
Hey Nellie sorry you had to find this board but glad you did as well. Im a fellow canadian here, next door in montreal, and unfortunately we are 2 of the approximately 100 canadians to be diagnosed with a spinal schwannoma in 2011.
In terms of recovery its perfectly normal to be on an emotional rollercoaster. I go through many ups and downs day to day. Sometimes i feel like im making great progress painwise then I do the smallest thing and it feels like i took 2 steps back. Im 30 years old and i've always been the type that couldn't stay still and was always on the run, things changed quick. It sucks being home all the time, I try to be as positive as possible when im down and i focus on being back to work in january. My tumor was extradural not in the cord like most and was apparently growing for 20 or so years. Its tough talking to friends and family about my pains. I hear things like "your surgery was 4 months ago you cant still be in pain" or "isnt that was the meds are for?" Thats whats great about the forum people understand what your going through.
Goodluck with your recovery, spend as much time as possible with your daughter and loved ones, and you always have the board when you need to vent or your just feeling down.
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Post by nellie on Oct 17, 2011 11:51:04 GMT -6
Thanks Rick. Likewise, I am sorry to hear about you being in the same puddle. It does really help to be able to relate to others who have or are going through the same situation.
I am know what you mean about it being tough to talk to people about how you feel. I am sure they are sick to death of hearing me say, 'Wow, is my back every aching.'
I was 51 when a MRI revealed the tumor. I did used to be fairly active, enjoyed exercising, running with my dog while taking him for walks, some outdoor winter activity. Enough to keep fit.
Some of the lows come from frustrations of not being able to do these again, at least as of yet. Other times they just come out of nowhere. I also have to remind myself what the alternative would have been like if I hadn't have had the mass removed. Pre op when I was really suffering I had hoped that with what I was going through that somehow, somewhere I would be able to help somebody else. I didn't think that afterwards was going to be just about as tough.
Good luck to you too in your recovery and thanks again for your encouragement.
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Post by femmyreyn on Oct 27, 2011 10:01:14 GMT -6
I have no idea what my intramedullary tumor is. The doctors are baffled. I know my family is getting frustrated with the 6 months of my pain complaints. They are really good about it and I try not to complain too much. I have a best friend that can't be around me though. She gets teary just talking to me. I get that she is worried but a little disappointed that she isn't coming over much since I have been off work. Things are going to get worse before they get better. I have a biopsy Nov 16th. These are the things that make me crazy Glad you found the boards... I am glad I found them too.
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mike
Junior Member
Posts: 5
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Post by mike on Nov 17, 2011 21:34:52 GMT -6
does any one have opperation that turns out good. When I read all the posts I think I should Just not have the operation and take my chances. I dont have any problems now is my turmor small 15mmx12mmx14mm ,was everyone larger than that or does everyone have problems afterward
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Post by millelacskay on Nov 18, 2011 5:27:08 GMT -6
My tumor was 15mm x 12mm x 10mm, in L5 area, so very similar to yours and I had a very successful surgery. However, the NS was not able to remove it all and now it is continuing to grow so I am facing another surgery. I went to the Mayo Clinic this week and their recommendation was to just watch it and have another MRI in 6 months since I have minimal symptoms. The big questions for you are whether yours is growing and, if you don't have the surgery, can you just forget about it. Take your time with the decision and make sure that you are dealing with a NS who is VERY familiar with these tumors if you do decide to go for the surgery because this is definitely not a routine operation. I am sending you a message too Mike so look for it in your messages at the top of the page. Kay
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Post by abprops on Nov 29, 2011 14:28:10 GMT -6
Hi I have not posted for some months but had a schwannoma removed from my Thoracic spine Feb 2009. My initial recovery was excellent but similar though different symptoms returned in late June 2009 and have continued since. I discovered that a CSF Cyst or pseudogemingocele had appeared on the first post operation MRI but I was not informed until I obtained copies of those images in Nov 2009. The images show that my Dura is being compressed against the damaged nerves in my spinal cord but neurosurgeons in the UK refuse to accept that there is a problem. I have been prescribed tramodol since before the tumour was removed but managed to wean myself off that drug in March this year and as I suspected the side effects of that drug were causing me problems and I am better without. I take paracetamol as required up to the daily maximum does. A Prof. of Pain Management recommended Neurontin but as I do not recognise my problem as pain related I have refused to take that drug. When I asked the Prof. about the problems posed by the CSF Trust compressing my dura against the permanent nerves in my thoracic spine he said he had no information on a CSF cyst and had no access to the MRI scans and as the neurosurgeons had failed to mention that CSF cyst he could see no relevance!
I have used the services of a Chartered sports PT and though I found it impossible to improve on running/walking machines or cross trainer I made rapid progress on a stationary exercise bike and took to cycling. I now cycle between 6 and 20 miles a day weather permitting and have regularly managed between 30 and 50 plus miles per day. But walking more than 2 miles makes me feel ill. I also have problems sitting in a normal chair for any length of time and use a recliner.
I also do 30 minutes of Yoga each morning and as my strength improved I realised there were problems with my feet. The toes on my left the leg affected by the schwannoma and nerve damage tended to turn up making it difficult to use them effectively. My doctor said its the plantar warts and refered me to a Podiatrist. The plantar warts have been dealt with but when I mentioned my exercise regime the podiatrist warned that there could be problems with my Achiles Tendon and I should ensure I did stretching exercises. My doctor then referred me to an Orthodist to investigate the problem with my toes 'clawing'. The orthodist prescribed shoe inserts to support my arches and correct a slight difference in my leg length. He also to my surprise prescribed a 'Night Splint' which I seem to remember someone mentioning in the past. I wear the shoe inserts and the night splint and at first noticed some signs of improvement. But I became more aware of the night splint and the tendency for my foot to press downwards. A check on the web informed me that the problem was related to shrinkage of the plantar in my foot and as the Podiatrist had said the tendons in my leg. The recommendation was a regular regime of stretching exercises before and after exercise. The stretching exercises helped at first but this week the problem has become more obvious and is now affecting my foot, calf and thigh muscles. I had plantar facilitis problems a few years ago but experienced the first signs of plantar pain first thing this morning.
Does anyone else have such problems and can they provide any advice.
mileacsksay has given you very relevant advice. I assumed that a neurosurgeon would be able to deal with my tumour but I am not convinced that he was aware of the problems. I am considering the offer of surgery by a Prof of Neurosurgery in Germany to deal with the CSF cyst the UK neurosurgeon refuses to accept as a problem.
Regards
Morris
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Post by kansasmom on Dec 10, 2011 9:56:27 GMT -6
Morris, you might want to repost this in the general section, where more people will see it and reply. I know I don't check the tumor-specific forums often and I think the same is true of others here.
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Schwannoma
Jul 14, 2013 12:07:33 GMT -6
via mobile
Post by amber on Jul 14, 2013 12:07:33 GMT -6
My tumor is 10mm by 12 mm by 16 mm I went through surgery and still havent fully recovered im in severe pain around the incision sught and my spine radiates pain all through my body I find it hassling to even pick up my 5 month old daughter I would have rather just lived with tge pain prior to this
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kasey
New Member
Posts: 1
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Post by kasey on Oct 28, 2013 16:31:14 GMT -6
Hi to everyone, while finally trying to find some relief; I came across this site and am so happy to have found it. I had a 2.6cm Intradual Spinal tumor at the L4-L5 removed in May of 2009. I had been going to a chiropractor for 25 years for back pain and "locking up". In early 2009, the pain in my back was so intense I was going to the Chiro every day for relief. It was not a long term solution and I was not sleeping at all, because laying down was so painful. My Chiro finally said he couldn't seem to bring any relief and suggested I get an MRI to see if there was disk damage. I had the MRI, and from that they suggested a enhanced MRI with contrast. One week later I had surgery (7 hours) to remove the Schwannoma. From the beginning I felt wonderful, because the dibilitating pain was gone; and I'm still so grateful for that. However as days went by, then months, the nerve pain that I have from my right butt cheek down to my right foot is so awful some days. When I try to describe it to people, I say it's like that pain you have when you hit your "funny bone"; except that it's pretty much constant. It does lessen some days, and I have found it follows the same as my arthritis pain. When the weather is right for arthritis pain it is also right for the nerve pain to be over active. I have just recently seen ads for nuropathy treatment, and wondered if anyone here has tried that? I was prescribed Lyrica in 2010 to help relive some of the nerve pain, but when I read the 6 pages of side affects, I was too scared to take it. I also didn't realize these tumors could return, and my surgeon has never suggested a MRI follow up to see if it has. Do most follow up? I will be going in for my annual physical in November, and will be hoping to get a referral back to a neurologist to see what has changed treatment wise in the last two years. Looking for any suggestions for treatments or follow up conversations with they neurologist. Thanks for letting me ramble on.
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