ken
Junior Member
Posts: 6
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Post by ken on Dec 31, 2015 13:52:19 GMT -6
Hey, I am new to this board and have a similar story to others. I am looking for help and willing to help others. I think working as a team with the most information possible can help us beat this. I am a 23 year old male from Los Angeles. About a year and a half ago I had a burning sensation in between my shoulder blades. I went to a chiropractor and got massages thinking I maybe pulled a muscle. Last March, I finally got an MRI. I was diagnosed with an spinal intramedullary tumor. About a week later my doctor called excited to tell me that they now believe I have a Spinal AVM. I was relieved because an angiogram is a permanent fix. I had the angiogram a couple weeks later and wake up to find out they did not find an AVM. I have been treated by Dr. Neil Martin at UCLA. Since the procedure, it has been the wait and see approach, where as time has passed the doctor's at UCLA have finally ruled out transverse myelitis and are very sure it is between an astrocytoma and ependymoma. Over the last year my pain in my back has not gotten worse but I have had slight tingling in my right hand depending on the position I sit. The tumor has only grown slightly and the doctors say it is not measurable growth, it just looks a little more plump than the first scan back in March. YThe tumor is at C5-C6.. I have a couple questions for you all since you seem to be very knowledgable about the condition. I tried to attach a picture on this put was not able to.
My first question is whether I should contact Dr. Jallo. I have seen a lot of posts about him so it seems he has operated on many of these rare tumors. My surgeon Dr. Martin is a top surgeon at UCLA but I do not believe he specializes in these rare tumors. Other names . He trained under Dr. Spetzler at the Barrow institute in Phoenix which I know is a top institute and Spetzler is highly respected. Do you know of other top surgeons that specialize in these tumors? I have heard is Dr. McCormick at Columbia University. I have also heard of Dr. Brotchi in Belgium who has recently retired
My second question is when I look up MRI scans of ependymomas and astrocytomas, they look very different. Unfortunately my scan looks a lot more like the astrocytoma MRI that I pull up which is why the doctor's believe it is an astrocytoma. Do you know how sure you can be off of an MRI scan? Also, if has hardly grown in six months could it be grade I?
I want to thank you for your time and helping me and other people out on this forum. My prayers are out for all of us during this tough time. I truly hope that you and others can fully recover. You are in my prayers. Ken
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Post by dmdgood on Dec 31, 2015 17:59:21 GMT -6
Dear Ken. I have a similar experience to yours in that I have a tumor and I don't know what it is. I actually think that's the case with a lot of people, unless they've had surgery (or a biopsy - generally not recommended). Hardly any tumors look 'text book' on a scan. I have come to the conclusion myself that it really doesn't matter what it is. What matters is what it does and how you feel in the meantime. What I mean is how fast it grows (yours seems to be slow), and also how it affects you (pain, sensory and/ or motor dysfunction, which seem to also not be debilitating for you if I am understanding correctly). But unfortunately, given your age, if it is indeed a tumor, it most probably has to come out surgically within your life time. I'm a bit older (47), but I think that this is the case for me too. So the biggest issue for me now is how to live with this, not knowing what it is and what the outcome will be. I've struggled with it for a year now, and I'm in a much better state of mind than I was initially, but some days it does get me down a lot. One thing that helps me is that most people have good outcomes from surgery. There are many examples on this forum. There is good technology and good neurosurgeons, and the knowledge about the best time to operate and also about getting the best recovery is improving all the time. You seem to be doing all of the things that I've learned off this forum, which are: 1. Don't rush into it. Take your time to think about when you might go in for surgery. It may not be justified (in terms of how it affects you day to day) for years. 2. Find a good surgeon. I have had an opinion from Dr Jallo. It is worthwhile getting one from him. When you do find the surgeon that you feel right about, build a good relationship with him/her. This will help in dealing with the surgery - the decision is overwhelming I've been told and you need to trust your surgeon 1000%. You also need to trust that they will do the best that they can, but that this might not mean cure, because a lot of the equation is to do with the positioning of the tumor in addition to the type. And often the residual symptoms seem to be person-dependent rather than anything that the surgeon does.
Thank you for your thoughts, and I wish you all the best with this. It's not an easy road. Although I would rather not have ever had a tumor, it has had some positives, like sorting out what's important to me in life and being grateful for every day (I now no longer complain about cold or rainy days - I love all conditions, because I'm alive and I can experience them all). DM
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Post by peaceandlove on Jan 2, 2016 7:27:26 GMT -6
Dear Ken,
I am sorry for you. For me too.... You can never know what is the kind of your tumor until pathology. I was keep on asking many different opinions and was confused before my surgery if it is Astrocytoma or Ependymoma, and no doctor can confirm but they keep on saying whether this or that & finally after my surgery it was not ependymoma neither astrosytoma. It was a ganglioglioma grade 1 very begin one. So don't rely on doctors expectations and experience.
Regarding doctor Gallo , he is a good doctor not denying that, and I advise many people on forum for his help, but it is not the only " one man show ", with my respect to him, many others doctor can do these surgeries. The only condition is that the doctor will operate you under neuromonitoring devise and to have experience in the field that's it. Don't make it risky and tragedy as doctor shows you the high risks. Actually they do this to protect themselves if they do any mistake. But the neuromonitoring devise will prevent this. Please keep me update about your case, I will pray for you and you pray for us.... God can do miracles, just believe in him...
Peace and love....
Best Regards.
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ken
Junior Member
Posts: 6
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Post by ken on Jan 2, 2016 13:25:52 GMT -6
Thank you dmdgood and peaceandlove for your responses. It feels good having people to talk to. Every major update I have in my case I will update it on this forum. Have a great 2016.
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mac
Junior Member
Posts: 10
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Post by mac on Jan 2, 2016 14:22:34 GMT -6
Ken, Your story seems a lot like mine. I had a hip pain 3/15, then 6/15 shoulder pain. Tried my Chiropractor and it did not help. I woke up one night with my hands burning and then I saw a Neurosurgeon thinking i had a pinched nerve. He had me get an MRI(same day) and found a tumor at C5-C7. 3 days later I had an appointment with a Neurosurgeon at RUSH University hospital in Chicago. 7 days later had surgery to remove(laminoplasty/Laminectomy). My tumor is a Grade II Intramedulary Astrocytoma and they could only remove 95%. Two months later I started TOMO (IMRT) radiation therapy for 28 days. I am now waiting to get my post-op/radiation MRI(1/20/16). If you have any questions let me know, If i can help I will.
mac
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Post by dmdgood on Jan 2, 2016 15:29:41 GMT -6
Thanks for sharing that Mac. I know it couldn't have been easy, but it seems like a good outcome with 95% of the tumor removed at surgery. I hope that all the residual is gone with the radiotherapy. How are you after all of that? I hope you are able to function 'normally' (as normal as you can get following surgery as traumatic as one to remove a tumor inside the spinal cord).
Ken, yes, please keep us posted. I'd be very interested in your next steps and outcomes. I wish you all the best.
DM
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mac
Junior Member
Posts: 10
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Post by mac on Jan 3, 2016 21:50:38 GMT -6
DM, My recovery seems better than most I've read about. I had surgery on 8-10-15 and returned to work(driving myself) as a construction project manager on 9-7-15. I was in O.T and P.T 3 times a week then and i still go once a week now. I have numbness from the waist down but i can still use my legs as somewhat normal. The radiation caused swelling in the spinal cord which brought on a whole new bunch of new pains. According to my Oncologist the swelling and pain should start going away any day now and i cant wait. To be real for a minute i do know that an Astrocytoma has "fingers" that extend out from the tumor and that 100% of my tumor will never be removed. The plan is for the radiation to keep what is left of the tumor from growing. According to my Oncologist when the tumor does start growing again(0-15 years) it will be an aggressive growing stage III malignant Astrocytoma. I will keep reading and learning all i can about this tumor. The most important thing to me is getting my MRI's and keeping an eye on this tumor. I will never let this tumor beat me and i will keep fighting. I have a very supportive family and that really helps me stay positive. Hopefully sharing experiences will help us all.If anyone has a question feel free to ask.
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Post by dmdgood on Jan 4, 2016 4:21:07 GMT -6
Hi Mac. That is an amazing recovery to be well enough to work within such a short time frame. I didn't know that about astrocytomas, that is, that they're likely to come back more aggressive. One thing that I keep reminding myself of is that statistics are for populations, and not for individuals. You have already beat the odds in having an almost total resection, and without substantial deficits. I hope that you can continue on that path. Another thing that helps me is that technologies/ treatments are improving all the time. Who knows, they may have something that might help us not too long from now.
Your positivity is inspiring. Thank you.
DM
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Post by dmdgood on Jan 4, 2016 13:06:12 GMT -6
Mac, I also wanted to add that I found this post from a person with a grade III astrocytoma, who was still alive after 33 years: spinalcordtumor.proboards.com/thread/1885/intramedullary-astrocytoma-surgeryHe describes some deficits, but one has to keep in mind that his surgery and radiotherapy were in the 80s, and things have improved a lot in both areas in recent years. As I said before, I keep reminding myself that statistics are for populations, not for individuals, so there's every chance that you'll be going strong in 30, 40 or more years. In the meantime, I hope that you get relief from the symptoms of the radiotherapy soon. DM
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mac
Junior Member
Posts: 10
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Post by mac on Jan 5, 2016 7:20:59 GMT -6
DM, Thank you. You have a very positive attitude and I appreciate that. I live my life by the "plan for the worst but expect the best" philosophy. I am 42yo. have two wonderful children and I plan on collecting social security checks one day. Being positive is definitely the key to beating anything. I have not followed the link that you attached above but I could not imagine fighting this tumor without the use of the internet. The information available on the internet helps me understand my condition and what to expect. Also, being able to speak with people anywhere in the world and being able to share our experiences to help each other is fantastic. My new life life with with this tumor began at a very fast pace. Finding the tumor and having it removed a week later did not give me time to research anything. I have learned a lot so far and will share everything i can that may help others dealing with a similar diagnosis. I am anxiously awaiting my MRI on the 25th and finding out my plan for my future. I know you are on a watch and wait plan and that has to be hard also. I wish you the very best and hope everything works out for you.
MAC
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