mon1
New Member
Posts: 2
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Post by mon1 on Aug 24, 2015 6:09:57 GMT -6
Hello. I was diagnosed with a spinal cord Tumor on Tuesday all I know that it is my lower spine. However I wasn't given any real information on what type I have. But I need surgery in the next two weeks so have set a date for the 10th of September. However I had a baby 13 weeks ago and cannot find any child care for her as it is to short notice and most of my family members have taken their holidays already. However I've been informed that I can discharge 24 hours after surgery and have a district nurse also home help. Has anyone had any experience of recovery at home so soon after surgery? By the way I am only 19 and I have started suffering from panic attacks that can last for hours at a time!
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Post by billanschell on Aug 25, 2015 11:36:23 GMT -6
If you'd like helpful advice at this point you need to find out what kind of tumor it is and its exact location. If it's inside the spinal cord, 24 hour release from the hospital is unlikely (though not unheard of). If it's outside the spinal cord you're likely to have a quicker and more complete recovery. If you find that out, then read through the stories on this site, be sure to find the stories that match your tumor type and location. Since it's in your lower spine it shouldn't be affecting your breathing, so it's not likely to be physically involved in the panic attacks.
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Post by Rajan on Aug 26, 2015 21:53:58 GMT -6
Hello,
My suggestion is not to jump in to surgery. Please please take second or third or fourth opinion. I was diagnosed with intramedulLary tumor at C7 - T1 last year in Nov and first surgeon I met wanted to do a surgery right away with in one week. Then I did some research and drove all the way to Baltimore to see Dr. Jallo who advised wait and watch as I was not having much symptoms. So now I am in watch and wait mode and as per my third MRI on Aug 11th there is no growth since last November. Dr. Jallo has advised for another MRI after one year and no action item till then.
I think these rumors are so rare that's why many neurosurgeons get excited and want to do surgery right away....probably to get experience.
Please send your MRI to Dr. Jallo as he's the best when it comes to SCT.
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Post by Tamera on Sept 6, 2015 22:43:42 GMT -6
I do not have a spinal cord tumor, but my husband did (had surgery 6/2015). Please select your doctor carefully and don't hesitate to get a second opinion. Surgery on these tumors is very serious, so it is important to understand everything you can about your condition, the possible outcomes, and to know the experience and qualifications of your doctor regarding removal of this type of tumor (i.e., how many times has he/she performed this particular type of surgery and what were the outcomes). Believe me, this is no ordinary surgery. I don't want to sound alarming or scary, but the more knowledge you gain, the better will be your decision about what to do and when. You are so young...do you have someone who can help you sort through this or research information?
This site has a wealth of information. One thread I read recently that might be helpful is as follows: Look under the section "Intramedullary Spinal Cord Tumors", then look under the Board "Ependymoma", read the thread called "anyone out there" started by jaimee. There are helpful replies to her request for info when this person was diagnosed with a spinal cord tumor. Also, the post above mine mentions Dr. Jallo - I have read his name on this website numerous times and everyone seems to have had a good experience with him. He is at Johns Hopkins hospital and I read on this site he sometimes looks at MRIs for people for free. There aren't very many experienced doctors with this sort of thing (because it is so rare), so I really want to stress how important is to find the right doc! Outcomes can go well, or can create life-changing challenges. Some might say that is the case for any surgery, but spinal cord tumors - especially if inside the cord - are in a much different category for risk. My husband's surgery actually went pretty well, but he was in the hospital 2 1/2 wks, so to be out in 24 hrs sounds unlikely. Go to websites for MD Anderson, Johns Hopkins, or Mayo Clinic and look up information about your type of tumor - should be in the neurosurgery dept sections of those hospital sites. Last, there is someone on this site named Dawn who has a thread that is helpful. She is seeing a doctor at MD Anderson. Again, just try to get all the info you can, and prepare yourself as much as possible. I wish you the best!!
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