I wasn't quite sure where to go with this so GENERAL I suppose will work. This could get long so bear with me. I'm trying to figure out if two things going on are related or completely different.
I have been having problems for about a month and a half now. I'm not sure how much is related to each other so I will just start from where I think is best.
I have been having some problems with vertigo/dizziness/i don't know what to call it, spinning, sensation of falling. I decided to take a few days off work, and see a dr. The dizziness itself didn't get worse, but it got to the point where it wasn't just while I was driving like it originally started. I have dizziness all through the day now. It isn't what I would consider a "normal" dizziness either. It is more of a spinning/losing balance issue. I get very lightheaded whenever I stand up, along with a feeling similar to if you have a leg fall asleep thru my whole body *the pins and needles* I have also been having periods of what I can best describe as a panic attack *??* My heart will start racing, I will feel very hot, my chest especially will feel extremely warm, very dizzy, and just overall weak. At night I will jerk awake several times before finally falling into a good sleep, with my heart racing and sweating, dizzy, etc. Nothing seems to be triggering it either. It doesn't just happen when I move my head or anything like that.
My Dr. suggested I see a neurologist, and took me off work in the meantime. I had a head MRI which came back "normal", along with a battery of blood work done, all which came back normal.
I noticed in the meantime my body felt/looked like it was off center. I asked my mom to look and she immediately said "your back has a bad curve". So I made another app with my regular dr. She did tell me I have scoliosis, never took x-rays, but kinda freaked about my having a "winged scapula". I am 22 years old and have never had anyone tell me I have scoliosis before, nor have I ever noticed by body feeling/looking off center. I did have a dr about 8 months ago tell me he thought my spine might have a slight curve, but it was a "questionable" thing at the time, where as now it's a very obvious thing. I had my mom take pictures so I could see for myself as well *since I can't see my own back* and it IS a very obvious curve...not what I would consider a "questionable" thing like when the Dr saw me last. I have pictures as well of me from two summers ago in a swimming suit *I happen to get in a shot of my daughter so it isn't like I just have people take pictures of my back LOL* and my back looked fine.
When I saw the neurologist and brought up the scoliosis and winged scapula, I mentioned I had been to a dr about 8 months previous who had done a chest x-ray because of rib pains I had been having. He looked at the write-up from the x-ray, and at that time it WAS noted that I had mild scoliosis and an osteochondroma on my left scapula. *I was never told these things but it was in the report...and conveniently that's the same side the winged scapula now appeared*
I have been having back pains now for over 2 months, mainly in the lower back but now is moving to my shoulder blades and along that whole side of my back. Every once in a while I will get a shooting pain down my arm as well. My shoulder blade is sticking out very far from my body in addition to the dizziness issues. As far as weakness, I haven't had much except when I get the "panic attack" feeling, but I do feel a lot of the time like my head is extremely heavy.
I feel like none of my dr's I have been seeing for these problems are listening to me. They are insisting that the scoliosis is something I have always had, and that the dizziness is not related to my winged scapula. I have asked them if for my OWN personal benefit they would take a new x-ray of my back and compare them to the ones back in Feb. to see if the scoliosis is getting worse considering no one had ever told me that before, nor noticed it, and their response to me is always "well adult scoliosis is so rare..." and not even bothering looking at my old x-rays or take new ones. Same with when I ask about the osteochondroma, and now all of a sudden having the winged scapula. I have even showed them the pictures of my back from a few years ago, and they keep insisting it's only noticed now because of my shoulder sticking out so far, but even ignoring the shoulder, it's obvious now where before it wasn't. I DO have eyes, and so do the other people I have shown these to. I do not feel at all this is just in my mind or that I am being paranoid.
Also as far as the dizziness, though I'm not a dr, I don't see it being too far fetched for whatever is wrong with my shoulder to be the root of ALL of the problems, and they tell me "dizziness either comes from the brain or the ear...nothing else" When I look online, I get something completely different than I am getting from them. I'm seeing all kinds of things that cause dizziness, including heart problems, so to me, to be told "it either comes from the brain or ear" is insane. I feel like I do all this research trying to maybe figure this out, and when I tell them "well I saw this online" they get almost get mad at me. They don't do anything to help me try to understand what might be going on, and the typical answer I always get is "well that would be SO rare..." ...and here I sit thinking "rare doesn't mean impossible".
I know I had problems with this health system with my daughter for a long time too because of their stance on "well that would be so rare". She had velopharyngeal insufficiency *soft palate too short* and even with x-rays, upper GI's, and a bunch of other tests, it took someone at a PUBLIC SCHOOL to say "this is what I think it might be" when she was 3 1/2 years old, when I had been going to the drs constantly for her since the day she was born. Turned out to be just that and she needed an operation to fix it. When I did confront her pediatrician on it, he said "well that was so rare, she is only the 3rd kid I have seen with that in my whole time working here".
Sorry that went way off topic. I do have an EMG scheduled to be done for the winged scaula, and an MRI of my shoulder, and also an ENG too determine of the dizziness is an inner ear problem. *can't get me in till December 21st for that one...GRRR*
ANy suggestions? Thoughts? Anyone else experiencing any of this? I know I'm hard to follow with some of this. It's getting hard to sort out even for myself! The doctors also aren't helping in my frustration which is why I am turning here.
see a good ortho doc for this or a neuroSURGEON.they would have a much better handle(in my personal experience,and i have had ALOT)they just seem probably much better geared to actually be a bit more invasive andhave a much better understanding of your situation.By the way?ALWAYS get copies of EVERYTHING that is being generated while you are dealing with ANY sort of an ongoing condition,always.If you had had your own copy of that original report to show to your docs,you would already be a bit ahead of the game.I mean doc notes from all doc visits any sort of testing that was done,just everything from anywhere you were seen for this.i have years of my medical records only because I have many seperate and direct spinal cord injuries that have been creating their own specific kind of hell for two years now.I started gathering allmy records right when this glob of blood vesels showed up inside my spinal cord and have them all up to date as of about three months ago,and am going to request the updates on all my doc visits here again very soon.all you do is just make a phone call to anywhere you were seen,and they will just send you out a forem to fill out,just sign it and send it back and your records will just show up in your mail box.you DO need to have all of this info,espescially when you are seeing different dos and also trying to obtain an actual Dx of something.this is really also great for you as you will be reading the actual clinic notes that all of your docs made after each visit?this gives you at least some idea as to what they are actually thinking.these really are vital.place all that stuff into like an expanding type of folder,and then bring it with you to every visit.I have had to go into this folder many times while seeing different docs as they don't always get that "important" info faxed over to them like someone said they would?then at least you have the info with you and wont be 'wasting" an appt that you have waited like a month or so for with a specialist.this really really needs to be done. now as far as you emg/I really don't see how doing that will really help your situation.it only will tell you if there is some sort of direct damage or compression to the nerves that run to the extremities.I really do think that your best bet here would be to get MRIs on that shoulder,and also the c spine area.a winged scapula can also be stemming from muscle inflammation under the blade itself that is actually comming from a problem inside the c or t spine,this could also be causing the curve in your spine.there are just sooo many different possibilities here that you need to see either a neurosurgeon(my personal favorite when dealing with any problem in the upper spne and above)or a good ortho.ask other peopl or your parents freinds about different speacialists they may have had to see for various problems.i am only saying your parents freinds as they are much more likely to have had to have 'something' done as they have gotten older.everything seems to start at around 30 and by 40,any big problems seem to actually just show up.don't know why,but this age thing really sucks.asking other people about thier specialists that they have had to see really helps alot when trying to find a really caring and good doc for your problems,really.their is nothing like a good reccomendations from someone who has had to use a particular doc for a surgery or something.this also lessens the chance that you will end up with an idiot or a very uncaring doc for your needs.do you know what I am saying?please seek out a fresh doc and gather those very important records.you will be rather suprised at all the info in them that your docs never bothered to tell you about.I was really really shocked at what was in some of mine,just the MRIs and what I was not ever told about.please keep us posted on what you find out,K? now get to work.FB
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.
I did have my thoughts running around requesting records for myself, especially after seeing what I did with the neurologist. I just don't understand how they find something to be significant enough to make a note of it, but not significant enough to tell people about it. Everything I read on scoliosis says it should at least be monitored, which it doesn't appear they have been doing considering I was never even TOLD about it. I think ANY kind of growth should be told to people if they are found, and not just blown off as nothing. That is a question I had as well, how do they know it was osteochondroma? I mean, how do they know a growth to be benign if they never took another look at it or a biopsy? I know people get growths and most of the time it IS just nothing, but considering they found this on my left scapula, and now all of a sudden I'm having this winging and the pain, am I out of line or irrational to think that it should be at least looked into? GRRRR...it's all so frustrating.
Also as far as the head MRI I had, when I was told about wanting to have it done to begin with I was told they wanted to do a head MRI with contrast. I had no idea what that meant. Went in, had the MRI, came home, thinking nothing of it. Well when I saw the neurologist I asked him what is the difference between just a normal MRI and one with contrast, and of course I was told about the dye. But then I was told "it really doesn't matter though which one you got" WELL THEN WHY SPECIFY?! "Well there really isn't too much of a difference between the two" is what he told me, which I find to be just absurd. They don't just inject people with dye for no reason. If there was no difference, they wouldn't do it!
It's really kinda sad that it has to come to that, in my opinion. You have to basically be a doctor for yourself, at least around here. I know they are smart people, but sometimes I wonder about them. The "urgent care" doctors seem to be the worst. I had one diagnose me with thrush once, which didn't make much sense to me, so I asked for a second *and thrird* opinion with a dentist AND another doctor, and they actually laughed and told me never to see him again because it was NOT thrush, but a severe infection and BURNS from bad dental work, and anyone who couldn't see that was an idiot. *that was their words lol*
I didn't want it to come to having to go somewhere else to see a different doctor, but unfortunately I think it is going to have to. We have only two clinics here, or clinic systems, the one I'm in now, and one that is linked to Mayo. I have never been to the one linked with Mayo, but I have not heard very good things about them either. So the asking family and friends, I understand what you are saying, but they have nothing good to say either! lol Their suggestion is always "get out of here, see someone somewhere else" which I'm afraid I might have to do.
It drives me nuts as well that everytime I have to see someone OTHER than a normal family doctor, I'm shipped somewhere at least an hour away. Small towns sure do suck for that. I would much rather live somewhere that when I needed to see a specialist for something, I'm right there, not having to drive an hour or 2 or 3. However, I guess if I'm constantly having to drive somewhere else anyway, why not make ALL my appointments in another town.
In the meantime with all of this I have lost my job. Well sort of, I am still employed but not the way I was. I had just been promoted and transfered to somewhere about an hour away, and was just making the drive everyday. Well since I now can't drive, I had to step back down, and go back to working only part time and take an over $3 an hour pay cut. I have to have someone drive me to work now, and pick me up which is an abosolute pain. Half the time when I am at work I'm completely miserable anyway, but unfortunately I can't NOT work. I need the money, especially having a 3 year old and having to make all these trips now to different doctors. Also if this is something that could possibly be an easy fix, I don't want to lose my spot at work by quitting and then having to start all over. Thats partially why I ran into problems to begin with because I had left for a while, and hadn't been back long enough for Family or Medical leave. I had only been back for 8 months, and the state law requires you to be back for a year. GRRR
Anyway, sorry about the rant. It's all so frustrating to me. Thank you for your advice. I'm going to request my records, and also look into switching to a different clinic. My MRI and EMG are next week so I will definately keep those, and request the reports.
I know absolutely NOTHING about winged scapula. They tell me nothing, gave me no idea of how I could have gotten this, nothing.
Would the winged scapula or the scoliosis cause there to be pain all the way down that side of me? My curve goes to the left, my winged scapula is on the left. The pain is down that entire side. It never used to hurt I know that. About 2 months ago I threw my back out, and on that side my LOWER back has hurt ever since, but the rest of the pain didn't come till recently.
What would have caused a winged scapula? From reading online I gather the most likely cause would be an injury, but how serious of an injury are we talking? I do not remember having any trauma whatsoever to my shoulder. Could it be something as simple as bumping into a wall which I wouldn't even necessarily think of as an injury, or does it have to be something more?
Also, how quickly would something like that develope? The only thing I could think of that I might have injured my shoulder and not noticed so much was two winters ago being rear ended. At the time my shoulder did not hurt though, and being two year ago, is that too long of a time for it to be caused by that? It wasn't a bad situation either, it was in a parking lot so it was a very low impact thing, had a stiff neck and that was about it. I just can't figure out what would have caused this????? *ANY of it for that matter....*
I have problems with dizziness and I did see a neurologist. I had an MRI done which came back normal. The neuro told me that he ruled out a problem with my brain, but he did say that your balance is controlled by the brain, eyes, ears, as well as spine!!! Oh, and I have scoliosis too. I was diagnosed with mine when I was 12 years old though. I also injured 3 discs in my back a few years ago too. I don't know if my dizziness issues are related to my back or not.
OK so your neuro told you the spine could cause dizziness? Just making sure I am following. Mine made a big point of telling me it was ear or brain, end of discussion. There is also a lot of mixed information I recieve between doctors. My regular Dr was going to check my SED level, and she said since my SED level came back fine that she wasn't going to run a Lymes test cuz if I had Lymes, my SED level would be high or something along those lines. Then I see the neuro, he tells me that's not true, so HE ran the Lymes test. Came back fine of course, but nothing like confusing the heck outta me! SO, it's confusing to hear from someone that its ear or brain only, and another say it could also be spine.
Perhaps I am over-reacting, but I wish someone could explain this to me better. I also wish someone would put themselves in my shoes for about 5 miutes. It's pretty hard to be 22 years old and feel like I'm back to being 12, having to get rides everywhere I go, and for the most part not going anywhere anyway because of how I feel. Work is a necessity, I have been off for almost a month now and Today is actually going to be my first day back. I do think I am capable of working, but I also know it's not going to be pleasant, and will be very wearing on me. Simply getting ready is the morning is wearing on me. When I constantly feel like I'm going to fall, grabbing onto things so I don't, the pain that is always there in my back and shoulder, I don't anticipate work being a very fun experience. Plus it only seems to be getting worse rather than better. So it's very frustrating to not have answers or even an attempt to explain possibilities to me.
Did you ever get an answer as to what is causing your dizziness, are they still checking, or did they just leave you hanging too?
I am still being checked out. My dizziness started a year and a half ago. It was so severe that I too had to be out of work. I couldn't drive. I couldn't even walk unassisted. It was horrible. It lasted for 6 weeks before I could tolerate it. But, after the 6 weeks, I never fully recovered from it. I had to stop dying my hair because having my head flipped over into the bathtub would make me start spinning, then it would be followed by vomitting. Every night when I lay down to go to bed, I spin for about 30 seconds before it stops. I had another flare up in March of this year (1 year after the first time) when it became really severe again.
I have had cat scans, and MRI, I have had my vision checked.........and none of those have shown anything. I have been told by a couple of different doctors that your balance is made up of multiple things.......brain, vision, ears and back.
I still have to have my ears and back checked out. I'm trying to find a good doctor that has dealt with vertigo problems so that I can hopefully find out what this is. So, believe me.........I feel your pain. I've had back problems for more than half of my life....so I know what back pain is all about too. It's not fun. Just hang in there. Hopefully someday soon, we'll both get the answers we need.
I have to admit that did not give me much encouragement! LOL I really don't want to do this for a year and a half and have no answers. Then again, I don't have much of a choice I suppose. NO ONE likes having something wrong with them. I am sure you aren't too thrilled being in the situation either. *sigh* Hopefully we WILL have answers soon.
Walking unassisted-I only get to that point if I am on my feet for a long period of time. If I go shopping or something, I have to have a cart or someone close to me. If someone walks away from me I have to follow to make sure I have an arm I can grab when I need it. Thankfully it's only after being on my feet for a while.
Does your dizziness seem to be brought on by anything? I know you said when you had your head flipped over you got dizzy, but are you dizzy when you just sit there as well? I can certainly make myself dizzy by moving my head, but even when I sit still I am dizzy. I know the doctors keep trying to pin point "well what brings on the dizziness" and I always have to answer nothing. It's just sort of there, and yes some things make it WORSE, but it's always there even doing nothing. Sometimes even things as simple as moving my eyes from looking at one thing to another will bring on a big dizzy rush. One thing different in your case, you said you had vomitting. I don't feel sick to my stomach nor vomit...yet anyway :0)~ Hopefully it won't come to that.
Did you ever get back to work? I went tonight for the first time since my doctor took me off. It was difficult. The whole left side of my body feels like one giant cramp...and for the last hour or so I pretty much stood in one spot so I wouldn't have to worry about moving and losing my balance.
Do you ever feel just spacey? I always seem to also have just a very spaced out feeling, not like I don't know what is going on, but like I am slow to react to what is going on. Like if someone asks me something I really need to sit there for a second and process it before I can answer. I am aware of what is going on, but just have a very spaced out feeling.
Maybe someone can help me with a question about the "osteochondroma" as well.....and I hope it doesn't sound like a stupid question but, from what I gather an osteochondroma is a benign bone tumor. My question is, without doing a biopsy of ANY kind of growth like that, how do they know it's benign? Do benign tumors and malignant tumors show up differently on x-rays? Or is it just one of those things that if they see them they just assume they are benign until they grow or change and THEN they biopsy to see if it's malignant? Also, if anyone else out there has a winged scapula, is it a possibility that the growth caused the winged scapula? Would it even be a possibility for the growth to have caused the scoliosis?
It would be hard for anybody to say if the osteochondroma caused any of your other problems without knowing exactly where it was in relation to other structures. It is possible that it could be compressing nerves, which would cause muscle weakness, which could result in both the winged scapula and scoliosis. The nerve that supplies the muscle that is usually responsible for a winged scapula runs down the side of the chest (armpit area). The nerves for most of the back muscles that control the spine start out from the spine and go directly to the muscles, so they are centrally located.
I don't know much about the diagnosis of osteochondromas, but I would assume that it must have a characteristic appearance on x-ray that would allow them to make the diagnosis without further testing. Otherwise, they would be leaving themselves open for a huge lawsuit if they saw a tumor and didn't test it if there was a possibility that it was malignant.
Is it possible for you to get another opinion from another neuro? I've heard some people say that generally neurosurgeons are better than neurologists (although that's just anecdotal). In the mean time, be sure to get copies of all of your medical records that pertain to this. Blood tests, test reports (from the MRI, radiology, etc)... That way, you can read through them and see if you think there's something that's not being put together. Also, if you decide to get another opinion you've got all the stuff ready to go. You have a right to copies of all of that stuff, so don't let them say no.
As far as I know, there is no reason that the osteochondroma or the winged scapula should be causing dizziness. The only way that I can think that the winged scapula could be linked to the dizziness is if they are both being caused by the same thing, but I have no clue what that would be.
Ditto on what kehorner just stated.get those reports and start your own searching,really.that is the only way I was able to start connecting 'the dots' from all of the gathered info.
i just wanted to mention that when i was in total agony from this horrid pain that was stemming from underneath my shoulder blade,and after having two seperate surgherys done on my c spine,the first two NSs that I saw and one neurologist all told me that the pain i was ha
ving was in no way related to the cavernoma inside of my spinal cord,well,I sought out what was going to be my very last opinion from the head of neurosuregry at the U of M,and even the resident who came in first to talk to me told me that he was pretty certain that the cavernoma WAS the cause of my problem,this was backed up completely by the head of neurosurgery when he came in.when I told him about the other opinions and what I was told,he actually drew me a picture of just how it was possible and that the pain under my shoulder blade could very well be related to the cav I had at the c 7 and T 1 levels.Thank god.i was going crazy.so you see, any opinions that you may be getting from any NSs or neurologists depend solely on their experience and what THEY actually are aware of or what they know.My NS has over thirty years of experience and is a teaching doc and the head professor(up til recently as he is getting ready to retire now,oh bummer,really)but just keep pushing things and getting as much info as you can before throwing in the towel.you really just never know.for like decades.those of us unfortunate souls who had cavernomas and AVMs were being told by almost evey NS and neurologist that these just do not cause any pain even when they are pushing against nerves and other structures???well they know now that they DO cause pain,and in some people horrid godawful pain.just keep pushing things and don't give up,I know its frustrating,but you have to just keep pluggin along til someone has the right answers for you.they ARE out there,unfortunetly,they wont come to you,you have to seek them out through your own research and the opinions of those so called "experts'.you WILL find the answers as long as you don't give up.i wish you luck.FB
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.
I'm definately going to request the records. I just need a day where I can sit down in the clinic and actually look thru the files and see what I can link together. It's so hard to know what MIGHT be in there connected to this. I didn't even know about the osteochondroma until I went to see the neurologist, and actually it was found back in February. At the time the x-ray was taken due to rib pains, and they took a chest x-ray to see if I had pneumonia or something wrong with my lungs. So I very well could find other things connected that I didn't even think about.
I went for my MRI today, and it was not what I expected. I was told/under the assumption I was having an MRI of the shoulder, and she started asking me all kinds of questions about my neck. I finally just asked her "are you doing an MRI of my neck or my shoulder" and she just looked at me REALLY funny and said "well, neck..." So me and the lady doing the MRI had a discussion about what was going on, and she told me take charge as well, ask for records, and push for what I want to be done. She asked me if I still wanted to do the MRI of the neck, and I said yes since, who knows it might show something, but she didn't really understand the link either. *shrugs* I'm not sure how much she knows, considering she probably just runs the machines, but she said my shoulder would not show up on the pictures, so I should request to have another one done specifically of my shoulder. I'm sure they won't be too pleased with me if/when I do. I really just think I need to go thru the files, and tell them look, I want this and this and this looked into, and if you're not willing to do it I will find someone else who is, and go somewhere else. SO frustrating.
You don't actually have to sit in the clinic to look at your records. You just request copies, and they are required to photocopy it for you and you go pick them up, and you can go through them in your own time at home. This can take a week or two, and you may have to sign a release.
Also, a lot of nerves do start out in the neck, so maybe you'll get something there.
Ok then here is a question. I was told I have to pay to get them. $10 for the forst 50 pages and 10 cents a page for every page after. I thought that was pretty normal, so I just said ok thank you. I kinda figured since I was paying for them and don't know how many pages are actually there, that I could sit down and look at them and pick and choose what I want. Am I supposed to be paying for them? I have had quite a bit of health issues since we have moved to this area, so my file I would imagine is pretty huge. I don't even know how far back I would want to go because I know there was a chest x-ray taken back in 2000 as well. The report for that was not in the file, but it was written on there that it was taken. So I would also like to see the report from then, since everyone keeps telling me these problems have always been there when I just know they haven't. I would hate to pay for all the records from 5 years ago till now, only to actually need a few. I just figured since I do have the time, it wouldn't hurt to just go ahead and sit down to look at them. HOWEVER, if I'm not supposed to have to pay for them, heck send them all then...it would be interesting to see some of the other things! LOL
I know when I called, just to ask how I go about doing it, the lady was sort of pushy with me about "well what do you want out of there"...."I'm not really sure yet, I'm just wanting to find out how I go about doing it" "Well if you don't know specifically what you want, how are we supposed to know?"....which I thought was just a rather rude question to ask. I didn't want to get into WHY I wanted to files with her cuz quite frankly that's none of her business. She did tell me that I could sit down and go thru the file though if I wanted.
I think I have pin-pointed the downfall in health issues to having my kid. It seems like ever since then, it has been a long battle with keeping myself feeling good. I have had problems with horrible migraines since then, headaches, ovarian cysts, WAY more colds and sinus infections, cervical problems, and just overall most of the time feeling like crud for one reason or another. I am still young, only 22, and I don't remember feeling like this when I was still in high school. In fact, cept of sprains or such or physicals, I hardly ever went to the doctor when I was in high school. Then I have the baby, and it's constant.
Check out your state medical board's website. You should be able to find information about how much they are allowed to charge. I suppose you could ask to look at them in the office and just copy the parts that you need to save money. You could always ask how many pages it is in total... If your doctor doesn't have the information from that chest x-ray, check with the facility where you got the x-ray taken.