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Old 11-01-2012, 10:00 AM   #1
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Exclamation spinal lesions

Please help. Im a worried mess. A few years ago i was going through testing and they found lesions on my spine they did bloodwork then sent me to a lupus specialist which said i dont have lupus. The dr then said it was just how my spine grew. Now just a few months ago i had a scan which showed even more lesions. And by what she said there is ALOT of them. She is unsure what it could be and did a bone scan and lab work the scan came back fine no sign of cancer but still waiting on the results and probably more testing. My whole life feels like i been at the dr or hospital. I was diagnosed with ulcerative colitis right before my dr found the lesions the first time. I had my gullbladder removed from having stones. I have multiple bladder and kidney infections. Im always tired and back always hurts. I have numbing and tingling in the tips of my toes and fingers it comes and goes. At one point it did last for about 6 months but then went away and is just off and on. Constant headaches and little aches and pains all over my body mostly in the joints. What should i do? What could it be?

 
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Old 11-01-2012, 11:36 AM   #2
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Re: spinal lesions

Welcome to the board. Are you defining a spinal lesions as any abnormal tissue growth on the spine?

Do you have any symptoms of multiple schlerosis?

 
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Old 11-01-2012, 12:18 PM   #3
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Re: spinal lesions

Im not sure what type of lesions they are amd im not sure about the ms symptoms.

 
Old 11-02-2012, 10:05 AM   #4
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Re: spinal lesions

if you do not yet have your very own copy of that last, and any other MRIs done along with ALL bloodwork result copies, get them now so you can read thru them yourself and more importantly, give a much better defined explanation OF those 'lesions' per the word for word way the interpretting radiologist saw them initially(the actual wording used by that inital radiologist who makes that report can reveal alot depending on "how' any finding gets explained in the reports). you can post the summary pages at the very end of your reports right here so the people here can also get the best understanding of what you are talking about and possibly dealing with.

you can simply request to obtain ALL of your medical records from the referring docs, or for just the MRI report, you can also go directly to the facility that did your MRIs and they can pop out a copy for you too. it is simply a matter of signing a release of information form and they would do this for you on the spot since it is all inside thier system.

it seriously does help to ALWAYS obtain every copy of any and all testing types of documents just for your very own medical files you can keep on yourself at home. i have been doing this for me and my son since 99. and trust me, it also helps if you should have to make a run to any ER for problems. you just grab that folder of YOUR stuff and go. it really does help any doc to better understand, even before "they' do any testing, to simply already know at least somewhat what they are dealing with.

knowing more about just what these 'lesions' are stated to be made up of in the MRI reports would help as well only because there can be many different 'types' of cord lesions. i have had one that was actually made up of just strictly blood vessels called a cavernous hemangioma, actually IN my cord.

have they ever done ANY type of MRI on your brain just to see if there are lesions in there too? if not, that should have already been done just to help to rule in or out certain conditions that 'present' with seeing lesions.

but really just knowing how that radiologist described your lesions, as i said, word for word would seriously help anyone here to try and give you the very best advice. hopefully it should not be a problem in simp0-ly obtaining what you DO have every right to have, all of your own medical reports/records. FB
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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.

 
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Old 11-06-2012, 09:21 AM   #5
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Re: spinal lesions

I just had another visit at the drs and the lab results came back normal. She described the lesions as not ms related and said they r just on the bone like a build up. But they arent in the spine just around the outside of it and there are alot of them spread from my pelvis the whole way up my spine. Im waiting for copies of my test results. She said they will just keep an eye on it cause she dont know what it is but its not cancer or anything major to worry about. But im a mother of two young kids and im going to worry cause something is causing them to form and appear on my spine and pelvis. What would happen once my spine and pelvis is completely covered. Will i be paralized will my spine grow together and be just a straight pole in my back. I want to be able to do things with my kids but the pain and worries of the future make it hard Please help. I hope this is enough info.

 
Old 11-06-2012, 10:43 AM   #6
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Re: spinal lesions

If the doctor doesn't know what they are or what is causing

them, I wouldn't know either. Sometimes doctors use non-medical terms, thinking it helps the patient to understand...but it makes it harder to know what is going on.

It is not uncommon to have little bone spurs growing on the vertebrae, but I don't think that's what you are talking about.

Did you have a MRI or CT scan of the spine? If so, maybe you could post the radiology report.

 
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Old 11-06-2012, 10:43 AM   #7
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Re: spinal lesions

just what "type' of actual drs are you seeing for this, as in specialists?

you do STILL NEED some BIG answers to questions that quite honestly 'they' either should know or they should be referring you to someone who just DOES know. you NEED to find all of the answers they could not give you for your own peace of mind. sometimes it unfortunely is up to ourselves to simply do some pushing with docs to get us to that "right' specialist who CAN give us what we need to know. and i DO really feel given what you were told, you have to do this for yourself and family too.

i ended up seeing three different neurosurgeons for what i had in my cord since i got two completely differing opinions on what MY cavernoma just even being IN my cord ment "for me'. i finally found that perfect and very knowledgable and more importantly really experienced NS when i went to the university of MN where i live. a really great teaching hospital.

the teaching type of hospitals are usually more prone to seeing the more rare, strange, and just plain wierd types of conditions at these facilitys. the uni hospitals are just whare more people go to when they cannot find answers at even really 'good' specialists. most NSs, like with most specialists out there kind of tend to have their own types of main 'specialties" where they know sooo much more about certain findings/conditions than others in that same group would have. if you go thru any uni teaching hosp, they will usually hook you up with who they feel would best be able to tell you the most about whatever a particular condition actually is and what this could mean for you, and anything else you simply DO NEED to also know too.

this would be what i would be doing if this were me. you also do need to try and get into some form of a good pain management facility where they can manage your pain while you continue to try and find real solid answers on what the heck these lesions consist of and if they even could spread upwards or downwards, or even inwards. the part i do not understand here is if you DID show actual high intensity or 'light up' WITHIN the bone marrow itself, something, tho i do not know what has to be generating that IN what appears to be an actual vertebrae?

the thing here is, it really appears to me that instead of knowing more after this MRI and consult with whatever type of doc you saw, you know much less than you seriously should. but it IS a matter of finding the best type of neurosurgeon who simply has dealt with what you happen to have before, and if they have treated someone with the very same thing, that means at least 'some' depth of real hands on experience/knowledge with that NS, ya know what i mean?

everyone just does deserve to know what it is they have going on inside their own body. sometimes it is an easy thing to tell, and sometimes not. but if they are just going to 'monitor' this because they simply do not KNOW even what these lesions consist of, or their tendencies, you DO need to move on til you can GET all of your questions properly answered. right now, as you mentioned above, you simply do NOT even know how this is going to play out because it would appear whoever you saw does not even have any real experience or real knowledge with what these are, and that does nothing for you. believe me, i have been down this same road and it does suck in not knowing what the future holds or what the capibilities just are OF the lesions themselves. if i had not kept pushing for answers and ending up with this amazing doc at the U of MN, i would more than likely be paralyzed from my chest on down by now. this glob had bled and was very 'active" by the time i got to what appeared to be like the only really knowledgable NS on what i needed. he was also head of neurosurgery there for well over 30 years and had pretty much seen it all.

if you simply do not feel you have the right, or enough solid info, just keep pushing til you CAN get to that 'right' NS for your situation. that truely is the very best advice i can give you. if there is a university teaching hosp anywhere even fairly close to you, ask any of the docs to refer you to it. if they say anything, all you have to tell/ask them is: can you tell me everything i need to/have to know right now? or can you tell me what these lesions actually are/consist of(and that one IS a biggie) and what they mean for ME and my future? if they say no to either one question, THAT ALONE justifies them referring you off to someone who CAN tell you, just like that. you NEED true information, it is that plain and simple hon.

hopefully they can get you to the 'right' NS for the job, and more than likely it would be a good teaching university too. they love taking on the rarer or "unnamed" types of cases there since they ARE trying to teach future NSs there too. you just need better and more experienced opinions than the very little you even got from these docs so far.

i do hope you can find a good NS who already can simply just look at your MRI and just 'know' what you have there. that particular NS IS out there, it is a matter of you getting to him or her. just do NOT give up til you get where you need to be. marcia just wondering if they did do that bone scan as recommended?
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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.

 
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Old 11-06-2012, 11:38 AM   #8
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Re: spinal lesions

I just uploaded pictures of the reports i hope you can see them but the lesions are described as schlerotic lesions and they have grown in size and number. I am seeing my Family doctor. Thank u for all the advice and help. Im very thankful. Also i am seeking a second opinion.

 
Old 11-06-2012, 11:52 AM   #9
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Re: spinal lesions

i just want to say thank you again your reaponse just gave me more strength and a mental say of push. And it makes me feel better to know im not alone or the only one going thru this. You sure have been thru alot.

 
Old 11-06-2012, 12:06 PM   #10
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Re: spinal lesions

I uploaded two picture of my results to my profile i hope you can see them im using my phone i dont have internet at home.

 
Old 11-06-2012, 08:30 PM   #11
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Re: spinal lesions

Does a bone scan rule out cancer?

 
Old 11-06-2012, 09:05 PM   #12
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Re: spinal lesions

Many bone cancers are diagnosed with X-ray. Then it is confirmed by MRI, CT scan or bone or PET scan. The bone scan will show if the cancer has spread to another area of bone.

 
Old 11-09-2012, 11:09 AM   #13
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Re: spinal lesions

sorry for the delay here in getting back to you ashley. but i was actually going thru the reports and tracking down certain terms used that quite honestly, i have never seen before, and i have had over 22? MRIs among other types of scans.

the one thing among others here that i am wondering is if there is ANY, and i mean any other family members who has had anything similar to what you have going on, even if the lesions are not in the very same places? this just could be something you were born with as in a "congenital' type of disease process which can be called 'autosomal dominant or recessive". i inherited a condition called polycystic kidney disease that i did NOT have a clue i was even born with until my then 12 yr old son, who ended up with some insane mutated version of that PKD gene, went into liver failure. did not know he was even sick, let alone THAT happen? but this not only impacts my kidneys, it has also impacted my liver, enlarged all my intrahepatic bile ducts and a few other strange things too. my problem is 'cysts' in both kidneys and my liver and they keep popping up in other places too. but just the fact that i had been born with this stupid diease,as well as my sister, and did not have a flippin clue since labs do not change til the cystic damage impacts overall areas of function, most people who have this too do not know they were born with it either. it really IS soo crazy in what any given person can actually have going on inside their own bodies and not have a flippin clue like we didn't.

just reading thru what you provided seriously 'sounds like' it has its own type of 'patterning out or 'set' course here in some ways?
there just are many many different types of disease processes,and or conditions that include the kidneys and also can impact the upper GI too where you definitely have also had certain issues pop in too. you also have some as of yet unexplanined 'free fluid' sitting in that renal pelvis too. have they mentioned the possible reasons for this?

you as of the date that MRI was done or CT actually have two 'inflammed' areas. one is in the lower pole of your R kidney, and the other is in the R ureter, which is also "thickening". also haveing pyelonephritis is an inflammatory type process(the definition of pyelonephritis is stated as being inflammation of kidney and renal pelvis) this is also where the majority of your lesions are too, right INSIDE that particular area. when it comes to just seeing certain 'terms' used, looking at the very end(suffix) or the very beginning(prefix) they can mean alot. for instance, the suffix 'itis' DOES mean whatever anything that is being mentioned(organs or areas of the body) DOES have inflammation, that IS what 'itis' means whenever you see it attached to the end of the word describing anything within, or even outside the body. you just DO appear to have alot of inflammed areas that are renal releated in particular ways, ALONG with what they refer to as 'sclerotic foci(lesions or hardened areas)'. the word sclerotic or sclerosis means "hardening of". the mere fact that these ARE increasing in number and some getting larger really does UP the absolute NEED for you to find out what this particular 'reason/condition and or disease process actually is and what the underlying generator is.

i noticed at the bottom of the one report that they mentioned who i am assuming you are referring to as your 'family doc'? this is 'only' an actual PA and not even an actual MD. you NEED to get to what i think now, in just seeing your reports would instead of bing an NS first, get to a good urologist or nephrologist just to really find out if this IS indeed some form of actual 'condition' instead of just a bunch of really in depth but random events.

as i mentioned before, if you live even close to at all, any type of actual teaching hospital, this would be the very BEST place for you to possibly find the answer, or at least much more than you do right nows. they just DO see more and know more about ALOT of things even outside type specialists do. it is only BECAUSE it is a teaching hospital at all. they also have access to very cool ways of diagnosing conditions and hook ups with some of the very best types of specialists as well.

this just really DOES sound like you may have been possibly born with this but you do not know it til it either shows itself in some ways or it shows up upon some type of scan for something else. but this is most certainly an 'active/ongoing" type of process that needs an appripriate Dx,so if there IS any treatment possibilities, they can be implemented asap. but DO try and get in to see that uro or neph as soon as you can first. whatever they decide will kind of dictate your next step. i do hope this helped some.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.

 
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Old 11-13-2012, 07:02 AM   #14
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Re: spinal lesions

Thank you so much. I am very greatful and i will be sure to see one of those types of drs. I am currently waiting for a call from a rhuematologist in pittsburgh, pa. Im waiting for a scheduled appt.with them. But no one else in my family has had any of these problems that i know of. We have alit of strokes heart attacks colon cancer mitrol valve prolapse but no bone lesions or chronic back pain

 
Old 11-13-2012, 07:14 AM   #15
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Re: spinal lesions

the doctor also didnt discuss the reasoning for fluid in my pelvis. But the time of the ct scan i had a kidney infection. Thats why they did the scan cause i went into the emergency room from the pain. I have always gotten uti's and bladder infections growing up as a kid and young adult and i never got symptoms so it would escalate to the kidneys. I also wet the bed till i was 18.

 
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