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    Old 07-26-2005, 08:58 PM   #1
    grower
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    spinal tumor surgery

    I just found out that I have a tumor on my spine at T11 and T12, and need surgery. Have any of you had to go through this experience? I'm having a hard time finding a neurosurgeon who's qualified to do the surgery, because this apparently is pretty rare.


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    Old 07-26-2005, 08:59 PM   #2
    grower
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    Unhappy Re: spinal tumor surgery

    [QUOTE=grower]I just found out that I have a tumor on my spine at T11 and T12, and need surgery. Have any of you had to go through this experience? I'm having a hard time finding a neurosurgeon who's qualified to do the surgery, because this apparently is pretty rare.

     
    Old 07-27-2005, 12:37 PM   #3
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    Re: spinal tumor surgery

    Grower,
    I'm in the same boat as you but my tumor (most likely either ependymoma or nerve sheath, but we are not certain yet) is from L4 - S2.
    I would just ensure that you find a specialist or neurosurgeon who has done more than the standard spine surgeries, if you can. It is very rare to have this, so it's tough to feel comfortable. I'm getting a second opinion on my options tomorrow, as I know some places are using cyberknife surgery, and I want to see if that would be an option for me (after a biopsy of the tumor). Luckily, you didn't end up like me...my original pain started back in 2003 and I was mis-diagnosed as having great spinal stenosis and had a laminectomy. That wasn't my problem, it turns out the tumor has been growing all along . So, I'm a little nervous about having another laminectomy along with them cutting into the dura to get at the tumor. I have a top surgeon this time, but I want to be sure I'm not eliminating any other options.
    One thing to make certain is that they have a neurosurgeon monitoring nerve function the entire tiime, especially if you have encased nerves within the tumor, which it looks like I might.
    Best of luck to you, as it's definitely a tough situation to be in.

     
    Old 07-28-2005, 05:07 AM   #4
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    Re: spinal tumor surgery

    Just what kind of tumor is this?do they even know?i had/have a cavernous hemangioma removed from my c spine area almost two years ago.it wasn't pretty.I think you really really need to seek out a good neurosurgeon and no one else.They are the only type of surgeon I would let even touch my spinal cord.unless you can find some sort of spinal surgeon who specializes in spinal cord surgery.Depending on just what type of tumor or lesion you have will determine just how much will have to be removed.You need someone with lots of experience.Do you happen to live fairly close to any sort of university hospital?this is where i ended up going for my surgery as this surgeon was the head of neurosurgery there and had like thirty years of experience.These hospitals are also up on the latest techniques both surgical and treatments.Did they tell you that it had to come out or do you have the option of just monitoring it for changes.What type of symptoms are you having right now?If this is not any form of cancer and it is not causing you any major problems you may have the option of just observing it,at least for awhile anyway.Having someone digging around inside of your spinal cord is NOT something you want to jump into if there are other options.I really wish I had had that choice but unfortunetly in my case things were not going well and it had to be removed leaving behind some major damage to nerves and spinal tracts.I hope you have some options.do surgery only if there are absolutely no other options.If you have to do it, research the heck out of your surgical options before doing anything else.Some are not quite as invasive as others.The type of tumor will determine the course of action.I wish you lots of luck for a good outcome in whatever you have to do.marcia
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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 07-28-2005, 07:37 PM   #5
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    Re: spinal tumor surgery

    In terms of my situation, it's a little bit serious, because the tumor is 5.5 cm long from bottom of L4-S2 and width wise it spans the entire spinal canal. No room for nerves at all, so they are probably encapsulated within the tumor. My symptoms all along have been low back pain that radiates to the butt and backs of thighs. Periodic pins and needles, numbness, some nausea. Probably not uncommon symptoms, yet mine obviously didn't respond to the first misdiagnosed surgery, never responded to any treatment at all, didn't respond to drugs, are constant and get much worse at night and in supine position.

    I would say both of the neuros I have seen this week were quite surprised at the size of the tumor, I could see it in their faces (the doc today I asked if that it a normal sized tumor and he said oh no, that's quite large). Not something they probably run into very often.

    Each gave a little bit different treatment protocol, but both said it HAD to come out (as did the spine specialist referring me to the neurosurgeons) They both said it's pretty critical to get it out as soon as possible.

    The first neuro has been listed as the top neurosurgeon in the Bay Area (San Francisco) and was a little more conservative in terms of the amount of cutting of spinal bone. Laminectomy, and then cutting thru the dura to get at the tumor. Whatever he couldn't get he would followup with radiation (if he was unable to get it all). He was more conservative about preserving the integrity of my spine, and felt he could get most if not all of the tumor with a laminectomy and if absolutely necessary followup with radiation.

    The second one I saw at University of California San Francisco today. He was much more aggressive in terms of the actual surgery to get at the tumor, cuz he said it was so large, and he needed as much access as possible to ensure nerve integrity. So he would do a laminectomy, remove the facet joints, and remove all bone and spinous processes to have full access to the tumor, and then fuse my back...I forget how many levels he said would be needed, either 1 or 2 but maybe 3? He said it was way too large for the cyberknife treatment they have at the University. YIKES.
    He said probably a 10% chance of being weaker after the surgery - since I'm a runner and cyclist and trying to make a career change so this all kinda sucks . He said probably not permanent changes tho. I am not a big fan of fusions...I read of too many failures where the back gets bad again later on.

    Decisions Decisions. Neither surgery is a piece of cake, and there's a good amount of risk. Because it's such an aggressive growth, we aren't 100% certain it's benign, yet it's rare for primary tumors to be malignant (altho even benign happen 1 in 100,000).

    blah. so, I have to figure out what I want to do, and pretty quickly.
    Sorry for the novel, just trying to contribute and help others.

     
    Old 07-28-2005, 08:09 PM   #6
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    Re: spinal tumor surgery

    Marcia,
    thanks for sharing about your surgery. Every spine specialist, neurosurgeon I've seen has said because of the size it HAS to come out. It seems to have grown fast, but I don't know what they consider to be a fast or slow growing tumor.

     
    Old 07-29-2005, 04:55 AM   #7
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    Re: spinal tumor surgery

    Is this a form of cancer or something else?Marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 07-29-2005, 07:03 AM   #8
    cabikerchick
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    Re: spinal tumor surgery

    They don't know yet. It's suspected to be an ependymoma of nerve sheath tumor. Once it's out pathology will say what it is exactly, and whether it is benign or malignant. Because it's so large, and because I am so symptomatic it has to come out. Because it's in the lumbar and sacral region, they won't need to touch my spinal cord, so I am lucky. It's grown just within the canal.

    What type of surgery did you have, and how long was your recovery? Was yours a primary or met tumor? What is your prognosis, do they know? What about the damage you talk about, how extensive is it and is there anything they can do for you?

    I am happy to see you are doing relatively okay, and appreciate your advice. I am leaning more towards the first doctor and preserving my spine. I don't think I want anyone to fuse my back unless there is absolutely no other choice, and the first doc thought it wasn't necessary to remove so much bone.

     
    Old 07-31-2005, 07:48 PM   #9
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    Re: spinal tumor surgery

    My gosh, Marcia. Thanks for the advice. I would love to have that list you referred to. My email address is [i] [ please read and follow the posting rules - no emails ] [/i] The sooner the better. Thanks so much.


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    Old 07-31-2005, 07:52 PM   #10
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    Re: spinal tumor surgery

    I'm dealing with a similar situation. They don't think the tumor is cancer, but can't be certain. They really haven't gone into detail about risks, recovery, pain, or anything. Got any information to share on that?

    Thanks

     
    Old 07-31-2005, 09:26 PM   #11
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    Re: spinal tumor surgery

    Hi grower.
    who have you seen so far regarding the tumor? I guess if it's benign, that is good news because it means it's not spreading.
    Have any of your doctors suggested surgery, and if so what type?
    From what I have been told so far, there are pretty good neurological risks because the tumor often encases nerves. One neurosurgeon at the spine center told me there's a 10% chance I'll come out weaker, but it might not be permanant. He said he generally tells people 1% for other types of spine surgery.
    Also, you have to be careful if it's within the dural space, because they have to cut through that and then put a "patch" and sew it up and seal it very tight. I was told I wouldn't be able to move for two days because there's the risk of CSF (Cerebral Spinal Fluid) leaking out if it tears and then there's a terrible head aches.
    If there's a fusion necessary, that's always a rough surgery w/o the complexities of a tumor. Is yours a large tumor? If so, it might mean you have no choice but a fusion because they have to cut so much bone to get at the tumor so I have been told :-(.
    There are some good sites on the web that talk about spinal tumors. If you google for it, you'll find some good info. Are you still finding it difficult to find a spine specialist neurosurgeon? Can you travel to find someone?
    Hopefully, if you have surgery they can get it all, and you'll never have another. I wish you much success, you are in my thoughts.

     
    Old 08-01-2005, 12:01 AM   #12
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    Wink Re: spinal tumor surgery

    where r u from Grower?I just went to the doc last thursday and there was a lady sitting in the waiting area with my wife and I and she had the same problem,but she had the surgey and she and the doc seem to think she is doing just fine .
    the docs name is doctor keith smith at the university at st.louis mo.he is a neurosurgeon. hope this helps with youre situation
    I'll be praying for you're recovery
    pipefitter100 out..

     
    Old 08-02-2005, 08:54 PM   #13
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    Re: spinal tumor surgery

    I have been to several Doctors to fix multiple complications at 3 levels in the lumbar region.I have what they beleive are 2 bilateral tarlov cysts in april they were 4.1 cm and in may they're 5.5cm growing at a quick rate.These are attatched to the L5-S1 nerve roots,but can't find a doc to remove them.
    I've noticed rapid loss of the legs the severe pain and constant sick to my stomache ,which are side of effects of these cysts when growing.
    Goodluck and my prayers will be with you.
    Toni

     
    Old 08-17-2005, 09:55 AM   #14
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    Re: spinal tumor surgery

    Grower, I am curious as to whether you have found a specialist to deal with your tumor? I just recently underwent surgery to have mine removed. Still waiting on pathology for the results to identify what the tumor was and check the cerebral spinal fluid for cancerous cells.
    BTW: Tumors are much different than cysts. Cysts often don't require surgery, and can sometimes just be drained. In most circumstances, tumors have to be excised.
    Grower, I hope you have been successful in finding a good neurosurgeon to help you.

     
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