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Old 04-12-2007, 12:35 AM   #1
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traumatic injury leading to other symptoms

several years ago I had a traumatic injury where I busted the tendon that goes from the nose to the top of the upper lip. I saw a doctor and was told nothing serious had happened, just let it heal. I didn't have insurance at the time or any money. I wanted some tests done but I didn't have a lot of options.

not long after the injury I started to get twitches on my neck and face, mostly on my neck. I then started to get twitches down my spine, on my arms, everywhere.

At first the twitches were once and awhile but as the years went by they became more frequent. I also started to notice that as the twitches became more frequent I started to experience body atrophy in those areas. At first it was minimal, almost to the point that I didn't believe it myself but after awhile it was obvious to me that there were major changes going on and I knew it all had to do with that initial injury. The atrophy effected everything from my face, to my back and torse to lower extremeties. I was pretty convinced that I had busted a nerve and that something was sending all the wrong signals throughout my body.

I didn't have a regular MD or a family doctor so I waited until I got insurance and then saw an MD. The first MD I saw I explained the situation to him. He seemed way more concerned with how many alchoholic beverages I drank a week and if I was eating a balanced diet than all the symptoms I had described to him. It must have taken 4 doctors visits going through the same textbook questions and meaningless(to me anyways) questions about my cholesterol or drinking/eating habits before I convinced him to refer me to a neurologist.

Once at the neurologist I was put through a couple of tests. I had an MRI and a Nerve Conduction Velocity Test (NCV). When both came up negative I was pretty upset. I was hoping that something would be found and that the ailments could be corrected.

I had subsequent visits with the neurologist and it became obvious to me that he didn't believe me. At one point he said "you're a perfectly healthy man" and slapped my knee.

It was one thing for me to notice the changes in my body but it was another to explain them to a doctor that had no history with me to compare the then and now. I went through 3 more doctors with the same results. It was a tedious process and it went nowhere. It was obvious that some of the docs I had seen were looking for a textbook name to this strange ailment when none existed. It was a routine of blood tests and waiting for the results.

I don't know why but I gave up. I wish I hadn't but I did. I guess I hadn't yet realized that the symptoms I was experiencing weren't going to stop.


Over the next 4 years I went about my life and the symptoms got worse, much worse. Over time the twitches became more frequent, the atrophy got much worse. It affected my face to the point that my features changed, it affected my head to the point that it got smaller , it affected every orifice of my body right down to my genitals. Everything. It's changed me so much I don't recognize myself.

After 4 years of letting this affliction continue to riddle my body I'm back seeking medical attention. Finding that understanding MD could make all the difference. I'm not looking for a magic pill. I never have been. I'm looking for anything that will stop this process so I can start to rebuild my life.

So I guess I need advice. Anything that can push me in the right direction whether it be the type of specialist I should see or certain tests I should demand. If you have any advice at all don't hesitate to respond or contact me. Or if you know of any health professionals I could contact and perhaps email I would appreciate that as well.

alex-

 
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Old 04-12-2007, 04:48 AM   #2
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Re: traumatic injury leading to other symptoms

First of all,just what was the manner of the initial trauma?what happened? this sounds more likely to be spinal related( C spine?) than anything within your actual face that is triggering anything below your face,tho anything is indeed possible.an EMG only gives a very limited amount of info.it will only show actual nerve compression and nerve damage that actually affects the nerve flow,nothing else.so you could possibly be having some sort of actual affectaion but it wouldn't actually show up on an EMG.you also done know for certain whether they even tested the appropriate nerves either.i cannot imagine showing actual signs of atrophy and these docs not seeing it or wondering why it was there,you know what i mean?

have you just been seeing neuologists for this or some other types of docs?a good knowledgable neurosurgeon or even a physical medicine doc like a physiatrist would be probably much more helpful to finding the cause of the atrophy.they just really do know so much more than a plain neuologist when it comes to this type of a Dx.i am also wondering just what showed up on your MRI and do you actually have acopy of those results in your possession?the only reason i ask is that in my experience with having around 16 MRIs for all of my c spine and other crappy conditions,the biggy here is that most specialists will only give you the info that they 'feel' is pertinent to the problem at hand and withold,at times,very important other findings.this is why you do need to see that report and also obtain a copy of your hard films which can be taken to another neurosurgeon or the physiatrist i mentioned so they can do their own reads.not everything that a person actually has wrong will actually even show up on any given MRI or any other type of test.the reasons for that are many but just because something you feel is actually going on does not actually show up on any MRI or other test,doesn't actually mean a whole lot sometimes.it could very well be there but is obscured from the pictures for some reason.the quality of the pics also come into play as well as the just the overall knowledge and experience of the rad who did the initial interpretations.same thing with actual specialists,if they do not have the experience or knowledge of any given type of condition or disease process,their overall knowledge of it will be very limited in actually trying to Dx it or even pick it up on films they read.

my very best advice to you would be to make an appt with one of the types of docs i mentioned and also just see for yourself what is actually contained within that report.obviously,something is not right within some level of your body that is reduced or even possibly stopped nerve flow which would indeed cause muscle atrophy after a period of time goes by.how long ago was that MRI done and was it also done with contrast?contrast just helps highlight things a bit better.they will usually do the first part of the MRI without it then inject it and do another set of pics.if you were not injected with anything at the time of your MRIthen you did not actually have a contrasted set of pics done.most specialists really do prefer that any films you bring in to them at your appt are no more than six months old.

the big thing here is if you are actually suffering very real atrophy in certain areas,there IS most definitely something amiss somewhere.it just kind of goes without saying,ya know?i wish you lots of luck with this.tho it can get very old very quickly,anytime you really do feel that something just is not right somewhere within any area of your body,don't let the docs get to you,you have to stay on track here and keep pushing til someone finally listens to you.believe me,i do know how that one goes myself.please keep me posted on how things are going,K? FB
__________________
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 04-25-2007, 06:39 PM   #3
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Re: traumatic injury leading to other symptoms

thanks for responding

i had an mri of the brain with no contrast but it was several years ago.

to add to my frustration i recently saw an internist and was all set to have an MRI of the c-spine but my insurance has denied me. Part of the reason they denied me is because the MD clearly didn't describe my symptoms properly. I asked them what symptoms they recieved from my MD and the insurance company said "neck stiffness and spasms" . I told the MD the whole story and that's all he wrote. I'm really getting nowhere again. I know if i can find that MD that is serious in finding answers I will get somewhere but i am not.

my head is literally smaller in size because of this atrophy, i can barely hold up my head at times because of how flimsy my neck is now.

ready to give up again.

 
Old 04-26-2007, 06:02 AM   #4
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Re: traumatic injury leading to other symptoms

wow,you most definitely need to find a much more caring doc who has YOUR best interest at heart here,really.they are out there.this is what a primary is just supposed to do and be like.they work FOR you.you need to just get the MRI done and see what may be or not be there for sure.tho any MRI will not always pick up on some pretty significant things either.i have personally experienced that one myself.it STILL needs to be done.if he had actually mentioned muscle atrophy,this would have been probably approved.its all in the presentation ya know?

I would seriously either sit down with your current doc and truley tell him about what your very obvious symptoms are and ask him to actually explain them to you and why they are there.if he cannot,tell him you HAVE TO have that MRI.if he will not do this one thing for you,move on.this is just ridiculous,really.to have obvious atrophy going on and any doc refusing to actually want to find out the casue,is really sick actually.this is his JOB.ask for a referral to a good neurosuregon,they would be able to probably help you the most here.they would WANT to find the cause for you.the thing is,you DO have some options to try and find the cause of this.sometimes you just have to really advocate for yourself and push things with some docs.espescially the ones with the biggest egos.i have had to do this for my son and for myself when no one wanted to listen to me but i knew without a doubt that something was just plain wrong.nothing like a little pat on the head and being sent on your way to get you really ****** off and want to prove something to get you motivated ya know?you just have to keep pushing this til somebody listens.unfortunetly,some docs are just uncaring idiots just like some in the rest of the population.the good ones ARE out there,you just have to find one.I wish you tons of luck with this and hope you can obtain this basic test in order to either rule out or in,the culprit for your medical problems.just keep pushing it and hang in there.please keep me posted,FB
__________________
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 04-26-2007, 09:25 AM   #5
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Re: traumatic injury leading to other symptoms

feelbad,

thanks for responding. You seem to be knowledgeable when it comes to MRI's.

Like i said, the c-spine was denied by my insurance but today i was notified that i have been approved for an mri of the brain. I'd much prefer to have the c-spine considering i had a mri of the brain already many years ago.

i have an appointment with a neurologist next week and I'm going to try again to get approval for c-spine mri since it was my MD's negligence that was responsible for my denial.

all i got out of my MD is that the mri of the brain scans the brain tissue. With my symptoms would anything come up on the mri of the brain? I guess i'll find out.

the only thing i'm worried about is if i go through with the mri of the brain it might hamper my chances of getting the c-spine mri. I don't know how insurance companies work but maybe they will only cover one of the procedures. I'd hate to waste my time on a brain mri when i really need the c-spine mri.

 
Old 04-26-2007, 10:07 AM   #6
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Re: traumatic injury leading to other symptoms

just happened to pop back on here for a quick second.the thing is,they should be able to do both at the same time actually.as long as you are stuck in the tube and already there,its just a matter of them doing that bit extra.part of your c spine will actually show up anyways when they do the brain MRI,so thats a plus.make certain that this is done WITH contrast,it just highlights certain areas much more clearly than without it.they will do a set without and then inject the dye and do another set with it just to compare what is and is not actually seen with both sets.like i said above,all your doc has to really do is tell them that you have atrophy from a possible c spine problem and the ins co should cover it.but like i said,part of your c spine WILL just naturally show up and if the tech actually sees something in another area other than the one he or she is scanning,in most cases,it would at the very least be mentioned in your report as an "incidental' finding.thats just what they do.i have had many "incidentals' occur thru all the 16 MRIs i have been forced to have becasue of many c spine and other issues.in most cases,if something shows up on film,it WILL be at least noted.but you really just do need that full look and eval at the c spine anyway.make sure that contrast is ordered.this will really highlight the arterial structures the best and could uncover some wierd vascular issue.i wish you luck and let me know what you find out,K? i am logging off now so if you respond i wont be able to read it til tomorrow morning,but i will be back then.FB
__________________
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 05-12-2007, 02:21 AM   #7
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Re: traumatic injury leading to other symptoms

Quote:
Originally Posted by feelbad View Post
just happened to pop back on here for a quick second.the thing is,they should be able to do both at the same time actually.as long as you are stuck in the tube and already there,its just a matter of them doing that bit extra.part of your c spine will actually show up anyways when they do the brain MRI,so thats a plus.make certain that this is done WITH contrast,it just highlights certain areas much more clearly than without it.they will do a set without and then inject the dye and do another set with it just to compare what is and is not actually seen with both sets.like i said above,all your doc has to really do is tell them that you have atrophy from a possible c spine problem and the ins co should cover it.but like i said,part of your c spine WILL just naturally show up and if the tech actually sees something in another area other than the one he or she is scanning,in most cases,it would at the very least be mentioned in your report as an "incidental' finding.thats just what they do.i have had many "incidentals' occur thru all the 16 MRIs i have been forced to have becasue of many c spine and other issues.in most cases,if something shows up on film,it WILL be at least noted.but you really just do need that full look and eval at the c spine anyway.make sure that contrast is ordered.this will really highlight the arterial structures the best and could uncover some wierd vascular issue.i wish you luck and let me know what you find out,K? i am logging off now so if you respond i wont be able to read it til tomorrow morning,but i will be back then.FB
feelbad,

i had the mri with contrast and was told it was normal. I also saw a neurologist who after telling him my symptoms suggested that It was all in my head and to see a psychiatrist! I wanted to deck him. For his "in my head theory" to be true it would mean my whole family would have to see psychiatrists as well considering they have noticed my symptoms and have encouraged medical help.

i've learned that muscle loss does not equal atrophy though . While i do have either muscle or some kind of tissue loss up my back and head and on my face i'm not sure if it is neurological. I had another nerve conduction test which they said was normal.

i dont know where to go next. i'm not happy with the doctors i have seen recently. Neither seemed to care . I think its going to take that one doc willing to listen and understand that these symptoms were started from traumatic injury and there is not a textbook name for what i have.

it's possible that the signals from my brain or neck that are not properly being sent throughout the body. I don't know what tests would reveal that though .Once the neuro said it was in my head, I ended the appointment and walked out.

 
Old 05-12-2007, 07:46 AM   #8
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Re: traumatic injury leading to other symptoms

number one,get that report and read thru it for yourself.you just really need to do this mostly because as i have learned(the hard way) over the course of years in having to obtain many MRIs.the docs,specialists,DO NOT actually even tell you everything that was really found on any given MRI.they just don't.only what THEY "feel' is pertinent to your situation.this doesn't mean that nothing was actually found,only that 'they' didn't happen to actually "feel' it was important enough to bring up to you.not til you read thru it for yourself and actually see,will you really know for certain.also obtain all and every medical record that has been generated by this situation from every doc you have seen and go thru those records for yourself as well.this just gives you a much clearer understanding of just what any particular docs impression of your case is.

the big thing here is the specialists level of actual experience and knowledge with any given situation/condition is actually what dictates whether or not something is an issue or not.if that doc has never actually dealt with alot of issues similar to yours he will not be picking up on what could have been a very significant finding.do you know what i mean?

you are very right about finding that one doc who will listen.they ARE out there believe me,you just have to seek them out.unfortunetly this is the reality when trying to reach any Dx of a particular madical problem.and when it is more obscure,well,it will just take a bit longer thats all.but it doesn't mean you wont eventually hit on the source of your problem.something is very obviously causing this to occur.have you been to any university type teaching hospitals at all for a consult with the head of neurosurgery?if you are lucky enough to live close to one,even within a couple of hours driving distance from you,honestly it would be well worth your while to go their and have this all evaluated by the "teams' of docs they have on all the cases there.they do things a bit differently at these types of teaching hospitals.this was the only neurosurgeon i had seen(he was my 3rd opinion)who actually really understood what i was really dealing with with reagrds to the cavernoma that i happened to have been born with that was bleeding inside of my spinal cord.none of the other NSs i had seen even told me that this sucker had even bled at all.two previous bleeds were noted in my report but i was never told.all i saw was the word "hemosiderin' but since i didn't have a freakin clue at that time just what that was,and they never told me either,i had no clue that i had bled even once before i hit this new NS,let alone bleed number two which actually was a new one.go figure.

this is what i mean about not knowing everything that was really in that report and why you need to obtain a copy along with the records.you need these for your own records too.you need to be seeing neurosurgeons not neurologists,trust me on that one.the neurologists just really are not as up on certain conditions or even the nerve to muscle connections within the smaller micro nerves and vessels and the overall impact they can have.they just have never really beein 'in' someones brain except at med school.they just cannot possibly have that same level of the more intricate structures and how this all comes together or the possible problems within them.they just do not have that experience at all.this is why you need to be seeing neurosurgeons instead.

i would start the ball rolling here about seeing a neurosurgeon for an eval on this and most importantly,get a copy of the MRI and read it for yourself.let me know what it states in that summary.and get those records too.you just really need the right level of expertise here in order to identify what is causeing your very real medical problem.something IS happeneing and you deserve to know what that is and why.sometimes you just have to keep hangin in there and get a bit pushy.you deserve answers.please keep me posted on how things are going,K? just hang in there Alex,i DO know how you feel,really.FB
__________________
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 05-12-2007, 07:13 PM   #9
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Cool Re: traumatic injury leading to other symptoms

[FONT="Georgia NT]

It is possible.

 
Old 05-14-2007, 09:35 PM   #10
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Re: traumatic injury leading to other symptoms

thanks for the tips feelbad.

i plan on getting all my records and moving on to another doctor.

i'm thinking of seeing a rhuematologist because the main problem is muscle deterioration that is happening everywhere. This all stemmed from the initial injury and the trauma from that injury that was never treated.

the neurologist i saw was also a neurosurgeon. He did a nerve conduction test and after that he basically said it was in my head.

i've found that if a doc doesn't believe you it's no use in continueing to waste your time going to them. My original md believed me but it was over his head. Still lost on what kind of specialist i should see if it's not neurological.

are there any specialists that deal with unusual symptoms?

 
Old 05-15-2007, 04:48 AM   #11
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Re: traumatic injury leading to other symptoms

Great move on your part Alex,really.you are very right about docs as to once they make up their minds about something,thats pretty much it for them and you need to move on.i am wondering if seeing a physiatrist(this is NOT a phsyc doc)would be much better than a rheumy.only because these types of docs actually deal with nerves/muscle type connections and determining whats been damaged type issues?this was my specialist at the rehab hosp i was sent to for acute rehab after my spinal cord surgery damaged too much stuff i had to rebuild in order to get use back.either a physiatrist or a plain old physical medicine doc would be useful,but i do think the physiatrist would be the absolute best choice.they are just trained to a much higher level than a physical med doc is.my physiatrist was extremely knowledgable on every nerve and muscle connection ,even the teeniest tinyist little connections.he could tell me what tiny little muscles were actually most likely damaged in my left hand without even doing the EMG first.i have eight lost fine motor muscles in my left hand now,thus the crappy typing.

i just think having an evaluation by one would at the very least,help you to find out what exactly has been damaged and lost and then you can go from there with him.this is simply just not in any way,with obvious atrophy,not 'just in your head".seeing this type of doc before attempting any other,well i just think it would be very helpful and benficial to you at this point espescially.you deserve to have answers.if you still want to,see the rhuemy after this doc.but right now,this is what i would do in your posistion anyway.hang in there alex,and as always,keep me posted,K?FB
__________________
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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