nancy
Junior Member
Posts: 6
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Post by nancy on Feb 27, 2009 15:15:40 GMT -6
Mary - I've been reading the thread and as a parent of two teenage boys, I can't imagine what you have been experiencing. I cared for my sister and was overwhelmed in many ways... so focused in others. What I've learned is my sister taught me so much about resiliency and it took her a long time before she could drive again!
I'm thrilled for Brian. What an accomplishment to begin reclaiming his life. I hope you can see what you have learned by watching him. Our children teach us so much too. Maybe at some point you can share this. My sister and I became very close as we shared what the experience taught us both.
I hope you are able to nourish yourself. I found I needed more support and absorbed more stress than I realized. Decompressing was a word I used often and doing so without guilt (a tough one.) I would still recommend continued learning and support from this group. SCTA is amazing and one I still look to!
Our best to Brian and your husband too. Nancy
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mary
Junior Member
Posts: 9
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Post by mary on Mar 18, 2009 10:01:07 GMT -6
We just returned from seeing one of Brian's neurosurgeons for a check-up. The pathology report from the Mayo Clinic was back and he took some time to explain it to us. All good news, well I guess I should say, the best news we could have if you have a partially removed spinal cord tumor. But, then I know you all can understand that after only 2 months since my son's diagnosis I am still wishing that he had never had this tumor.
Anyway, they have diagnosed his tumor as a Grade 1 intramedullary pilocytic astrocytoma. The doctor told us that this tumor could have been there since birth or from very early childhood. He said that it was the best news we could get as they consider it non-cancerous and slow growing. He said it does not spread to other areas and that if it did grow back it would be in the same area. He also said that there are times where once this tumor is cut into it will regress and that Brian's next MRI may not only show no growth in what is left of his tumor, but possibly some regression. Certainly that is our prayer for now. They anticipate doing an MRI at about 6 months out from his surgery. They said that they will not be doing any radiation for this tumor either, another piece of good news.
The doctor was pleased with Brian's progress since his surgery. It will be 8 weeks tomorrow. Brian still has numbness in his torso and the doctor said that will not go away, but that Brian will get used to it being, as you all have described, his new "normal". He also still has some weakness in his right arm and more so in his right hand. I see him improving a little all the time and watched today as he signed his name, a bit messy, but still something he could not do before. Brian has not been on this site, so I do not think he can appreciate just how blessed he has been in the outcome of his surgery. I read about how many of you are still dealing with many deficits from your surgeries and often much pain. Brian has some complaint of pain when he has put in a full day and still has some trouble sleeping, but compared to what I have read here, his must be minimal. He has not even used up the first prescription for pain relief that he got post surgery. I was a bit surprised that he seemed to have more pain later in his recovery, as opposed to earlier. Have I correctly read that for some of you the pain did come on after a period of time and not immediately after your surgery? I am going to try to stay positive and not expect him to get worse, but just was curious to know it that has been the case for any of you.
The doctor we met with today is not the one who did his surgery but the one we consulted with before. I worked at the hospital when this man came and always heard wonderful things about his skill and caring. Everyone said that we were so lucky to have him come to our town back then. He suffered a horrible injury after coming here and had to fight back to where he is today. He uses a wheel chair and still does surgery, but does not handle extensive surgeries like our son's. He is the one who said that he would put his own life in the hands of the man who did preform our son's surgery. Today he told us that although he knew how skilled this other doctor was, that seeing Brian's post surgery MRI and his physical outcome, that his opinion of the other doctor has even increased. I was so concerned that we could have made a wrong decision in our choice of doctors but it seems like we did have a skilled surgeon and have so much to be thankful for. I have requested Brian's reports and MRIs to keep for the future as so many of your suggested. I will keep all the information and any future tests in case this tumor does not act as they expect and begins to grow back. I think we would send them on to Dr. Jallo before making any decision in the future now that I have found this site and have the knowledge of him. Of course I will keep praying that we never need to do that!
After leaving the doctors office today I felt like I took a deeper breath than I have in a long time. It was like a weight had been lifted and I could really believe that our son would have a future to look forward to. The diagnosis of a SCT sure can knock the wind out of you and allow panic to set in, especially when you had no idea anything was wrong and there were no symptoms. I imagine part of the reason that Brian IS doing so well post surgery is that he did not have any real symptoms before the surgery. They have said they do not think the headache that took him to the ER was related to the tumor. They Even told my husband that for some unknown reason the CAT scan that was preformed when our son first went to the ER was done differently than usual. They said if it had not been done that way, they probably would not have seen the tumor. The one surgeon told us that if this tumor had not been found it would have been possible that our son could have just stopped breathing one day as his was at the C1 -C3 level. Makes you believe that God certainly had a hand in the miracle that has come about here.
I want to thank all of you for the support, information, and caring you have all shown me. I will be forever in your debt. I plan to keep coming to the site to keep up with all of you and your progress and to keep abreast of all the new information and treatments in the event we need them. I pray that God continues to bless each of you with continued healing and also with His peace.
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mary
Junior Member
Posts: 9
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Post by mary on Sept 1, 2009 22:29:51 GMT -6
Hi! I have not been on here much lately. My life has been a bit hectic with the activities and needs of our 5 kids, 3 in laws, and 4 grandchildren. Never a dull moment it seems. But that is good!
Brian has been doing well. Working 2 jobs this summer and moving to the college town nearby with some friends. He has been going back to the doctor for monthly check ups and x-rays. The doctor has been concerned about his head coming forward and has been keeping a close eye on it. He has sent Brian back to rehab to try to strengthen the muscles enough to compensate for the weakness in his spine from the surgery.
The doctor has explainded to Brian and us that if this continues to worsen that he will be recommending more surgery to stabilize his neck. Brian is not a bit happy about that prospect needless to say. He has just started the fall semester at college and does not want to interrupt his studies again. We did talk about waiting till the end of this semester to do the surgery if necessary, but doing it before the end of the year since Brian has met all his deductibles for this year. Brian has not been very receptive to the thought of surgery understandably, but I imagine if the doctor feels it needs to be done that he will agree to it. I have told him that in the scope of his lifetime, one more semester is not a big deal, but at 23, having already had to sit out one semester, it seems like it to him. Then too, he would have to go through the pain again, move home while he recuperates and face the fact that this surgery would at the least limit the movement of his head from side to side.
If any of you have had this surgery, I would appreciate hearing from you. I would like any information or suggestions that you have about the surgery, recuperation and living with the limited motion.
Brian goes this Thursday for more x-rays and for his first MRI since the one right after surgery. We will meet with the neurosurgeon on next Tuesday then for the results. I know that they have told us that the tumor Brian has is normally slow growing or may not grow back at all, but I have to admit that this next week will be a hard one while we wait. I recently met a woman who has a son about Brian's age who also has a spinal cord tumor. She wrote me this week and said she calls it "scanxiety". I good word to describe how I feel. I am sure many of you know that feeling.
Please keep Brian in your prayers this next week. I know that although he does not talk about it much that this will be hard on him physically and emotionally. He still has a fair amount of pain and the MRI and x-rays will wear on him a bit I imagine. I tried to get him to take the day off work to give himself a break, but I am not sure he listened. I am glad he has gotten back to living his life but as a mom I worry that he pushes a bit too much with his school and jobs. Guess he will always be my little boy and I will always worry.
I will let you know the results after we get them back. Thanks to all of you for this site. Even though I do not get on as often as I would like I know you are all here with your support and information if we need it. God bless you all.
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Post by Todd on Sept 17, 2009 10:27:41 GMT -6
I had a 1in tumor removed from C7 6months ago. I now have severe head forward posture (the first link in my signature below will take you to my MRI scans before and after, they pretty clearly show the change in my spine) I am currently doing muscle strengthening exercises to see if I can pull my head back up.
If your son doesn't currently have head forward posture but is starting to get it, then it sounds like strengthening the muscles should do the trick. You should seek out a PT who has skills in working with muscle development in this area and who has helped correct head forward posture. may not be a PT, you might have to see another doc, like a chiropractor or a phsiatrist (google this term, i spelled it correctly).
my diagnosis came because of tingling in my fingers which, it turns out, was not being caused by the tumor but from a protruding disc. If I hadn't had that protruding disc, I might not have gotten the MRI that found the tumor, so, I understand about intervention from a higher authority.
oh, and my docs say it can take up to a year to get sensation back and folks on this board have indicated it can take longer, so, your sons loss of sensation in the torso may still come back over time. I went into the surgery completely intact and came out numb from the chest down on my left side. I walk just fine but I am hoping that my sensation comes back over time.
take care and always get a second opinion when it comes to any surgery suggested by a surgeon. most surgeons feel that surgery is the best option, it's what they do.
todd
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Post by itsallgood on Apr 12, 2012 18:30:17 GMT -6
I was 22 as well when I got hit, more like slammed, by the SCT freight train, neigh, the SCT aircraft carrier, nope...not good enough. Ultimately it emotionally and physically felt like the Death Star fell upon me. There's no way around it, but he is going to feel absolutely crushed by this experience during diagnosis and recovery.
As a parent, just be there for him. Set forth little challenges/encouragement and discreetly document his progression in a journal. It might help you and eventually him! Take photos of the people helping him to get through (PT, NS, Nurses, etc.... as time passes he may want to reach them and just say "Thanks!"). Get some recordings of his experience and save it. Dont show it to him until a few years later after he makes progression. Its going to take a long time to recover emotionally, physically and psychologically.
Get him plugged in with his friends. He'll need them to make him smile, laugh, listen, release upon and motivate him. I dig it that he's already setting out plans to make a life with this situation not a escape from it. Thats awesome. Give him attention and give him space to get through this hurdle.
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