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Old 08-27-2003, 12:03 PM   #1
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Post Osteoblastoma

Hi, my name is Debi and I had surgery in 2001 to remove a Osteoblastoma in the L-5 area of my spine. It caused a bit of damage and I had a fusion too as the result. I felt great once I recovered! 2 1/2 years later all the symptoms came back, sure enough so did the Osteoblastoma, a "reoccurrance". I had it removed in June this year, this time they took out part of my vertebrae @ the same spot as last time (last time they just scrapped it out). My nurosurgeons said this was rare, and the reoccurrance rarer, I am just really curious to find someone else with this, did it come back for you? What were your symptoms and how are you now?...Thanx!

 
Old 10-02-2003, 01:43 PM   #2
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Dear Deby,

My name is Ana and I am from Bosnia. I had osteoblastoma L2 on my spine and i did the surgery in Vienna in 2000. I think they took away the damage part of my spine and they put some metal disks instead. Now I feel just fine, no seriose problems. I also heard its very rare tumor but it happens. Well i hope you will write back and ask for anything you would like to know about my expirience.
I hope you feel ok too.
Best regards, Ana
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Old 10-04-2003, 06:25 PM   #3
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Hi Ana! I am so very surprised to finally hear from someone, I sure wished we lived closer, I would love to talk to you over a cup of coffee! Yes, I too am doing well, I just have been so curious if any one else was out there. I am 44, married and have 3 beautiful teens, so I have always had lots of support. I know they tell me this is a slow growing tumor, so they believe I had the first one a long time. I have always been very physically active, so in my late 20's, when it started, I just thought I was having lots of aches and pains from gymnastics. I don't know what you felt, but my back would just "go out" on me a few times a year, then it would just ache, especially at night, till I finally went to a doctor and said I THINK something is really wrong. I too have had titanium nuts and bolts put in, after they scrapped the tumor out, they had to repair the damage. I felt so good when it was all over with, I recovered great! that was in 2001. Last Jan. everything came back, I was so in disbelief! I refused to believe anything could comeback, but, this time I had numbness and my legs would give out, along with that very familiar pain, aching all nite, so, I had to have it removed AGAIN, it was a 'reoccurrance". This time I feel great again, but, I have always been a fighter, and I think we can take charge of ourselves too. I found a very old post on a board that hasn't been used since 1999, from a guy who also had what we had, and he had a reoccurance too! I tried to email him, but, I knew it was probably to old, it just came back. I know this is probably very long winded, I am just so glad to hear from someone else, and to hear that you are ok too. I would love to know how you felt too, how long did it take for them to figure out what was bothering you? I also wanted to tell you I am from St. Louis, Missouri, and we have a huge Bosnian community here. Take Care.....Debi

 
Old 10-11-2003, 08:47 PM   #4
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Hi,
My daughter 12 years old had a osteoblastoma removed from her 9 vertbra Aug 1 she had back pain for a couple years and started developing scoliosis so I took her in to get treated for scolosis 2 doctors later we found the tumor.
She is doing great no pain they scraped it out. I am praying for no reacurrance!!! She started dancing again this week It is nice to hear from other people that have this wierd thing she has to wear a brace 24/7 untill she is done growing to keep her spine straight Hope to hear from anybody with this diease

 
Old 10-12-2003, 06:45 AM   #5
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Hi Dorene, I am happy to hear that your daughter is up and dancing! I had heard that this was primarily a juvenile disorder and went hand and hand with Scolosis. I think I was told it was due to the tumor is slow growing and "dissolves" the bone, resulting in the condition. I am glad they caught it in time that no fusion had to take place, and her brace will straighten her out just fine. As a Mom myself, hats off to you, it would have been way harder to watch my child go through this than for me to have it! I have to add, I am 44 and I am up and doing just great, so at 12, I am sure your daughter will sail right through her recovery, kids are so great at bouncing back. Take Care...Debi

 
Old 10-12-2003, 09:06 AM   #6
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Hi,
Glad to hear you are doing great now. My daughter is a real trouper. She ha a great atitude that is how I got through this. 1 week we waited to see if the test showed up as cancer that was the longest week of my life. How long was your surgery? Who was your doctor maybe my daughters doctor can get in touch with him to talk about this This is the first case he and other dr in our area have seen They have read about it but had never seen osteoblastmoa in a 12 year old. What type of incession did you have my daughters is from her right shoulder blade in a C shape to under her rib cage about 8 inches
I am still worried that this will come back. I noticed that you said 2 1/2 years but did you have any symptons before that if so what were they? Sorry about all of the questions but I have never talk to any body before that has had this weird diease THANKS!!! ofr all of the info DeDe


[This message has been edited by Dorene (edited 10-12-2003).]

 
Old 10-12-2003, 07:29 PM   #7
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I don't mind answering your questions. I had my 1st tumor quite a long time, I am a very physical person, gymnastics, weight training, along with a physical job (aircraft mech) that I attributed alot of it to "overdoing it". Had it been my daughter complaining, like you, I'd of been more aggressive in questioning my Doc, or going in for that matter. When I had my 1st surgery, Jan 2001, it had already caused alot of damage..in kids the scolosis can happen, mine was a very unstable spine. They scrapped it off and fused the area, which is the lower spine for me, to correct the damage done by the tumor. My back would 'give out" a few times a year with a "electric shock" feelings going thru it, but, this was probably from the damage from the tumor. My main complaint was a constant, specially at nite, dull throbbing pain. After my suregery,which left a nice 8inch inscion, my husband refers to as my now extra long butt crack, I recovered great and felt terrific! Seemed almost a miracle to me, that familiar dull ache now gone after all these years. 2 yrs later in Jan of 2003, it all came back, very sudden, very fast, this time with proggressive numbness, down my left leg, hip and side. My leg would give out, and of course that all familiar pain was back, but the nurological symptoms I really didn't have before were now there. It took till Mar. to get me to go in and find out it was back, and in June I had part of my vertebrae removed, at exactly the same spot they had scrapped it off the first time. Please, do not think for one minute that this could happen to your daughter! This was rare it came back to me, and I am not worried it will return. I am again recovering great! my doc's have given me 6 mos to return to work, so I am enjoying my time. (This is due to the extreme nature of my job) I live in St. Louis and will be happy to give you my 2 nurosurgeons name if you like ( I had one who handled the bone of the spine, the other watching out for my spinal cord, they are both terrific.) Let me ask them if it is ok to give out their name, I'm sure it would be Ok. One of them has handled a few cases as mine over his 30 yrs, but, he said very, very few. One question I am going to ask when I go back in for my next followup, is that I want a MRI done yearly for awhile, I have read about it as a followup on spinal cord tumor patients, and even though ours is a bone tumor, I think it is a wise thing to do for awhile, provided I guess if the insurance company agrees! I am curious what your daughters symptoms were, I had read it was years of it as well for her. I too, no that "week of waiting" to see if it was begnin, again, how hard it must have been to hear about your child! I knew in my heart both times that mine would be ok.

 
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