Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Just When I Thought The Specialists Couldn't Get Any Worse...

dharvellddharvell Posts: 98
edited 06/11/2012 - 8:27 AM in Neck Pain: Cervical
For those who aren't familiar with my story, I've been to 3 different specialists - 2 that have sent me out of their office because, according to them, I am "too young" to be having the problems that the MRI says that I have (explain THAT one...). The 3rd specialist, a NS, showed promise on the first visit. The NS actually mentioned surgery as an option!

Today was my follow-up visit. It was a disaster.

It started with me driving 2 hours (one way) to even GET to the appointment, as the city this doctor practices in is half-way across the state from where I live. When I arrived, I found out that, even though the MRI we were going to discuss was taken more than 1 1/2 months ago, he didn't bother getting the disc containing the MRI as we agreed he would do in our previous appointment. He, instead, based the appointment on the report. A report that seems to contain different information, depending on who reads it.

The person who read me the report, over the phone, said that the MRI shows that the arthritis in the C5-C7 region has notable change between March 2008 and December 2008 (the date the new MRI was taken). According to today's visit, the NS said that there is absolutely no change. Which is it???

To top the day off, the NS decided that he would not do surgery (because I AM TOO YOUNG!!!), but rather, I should do physical therapy. Something that I attempted to explain to him that I tried before with horrible results. PT actually aggravates the problem. However, he would not listen.

I also attempted to explain changes in symptoms and NEW symptoms to the NS, but he didn't appear to have time to listen to them. Never mind the fact that I seem to be losing the use of my arms at least 5 or 6 times a day. Never mind the fact that I wake up in the middle of the night with absolutely no idea where my legs are until I actually FEEL my legs with my hands. Never mind the fact that I get terrible headaches on a daily basis, now, with the root of the headache at the neck.

I have officially exhausted all of my options that are available to me in the state of Michigan.

I've attempted to work with the symptoms I have, but failed. It seems that after even 90 minutes of work, my body rebels. Because of this, I've been unemployed for most of 1 1/2 years. I am about to lose my house over my health. And my doctors won't even give me an ear, because I am "too young" to have these problems.

Anybody know if I have a legal case against these doctors? I am at the end of my rope...

... sorry to vent...



  • This is so awful. I feel bad reading about your experiences. Can I ask, are you in your 20's or 30's? I was in my early thirties when I had my first back surgery. I believe that if there is a problem, that it should be addressed. If the pain is impeding on your quality of life, something should be done, or you should be referred to a pain specialist where it can be treated aggressively. I have read so many stories here about people being refused treatment just because of their age and it's so unfair. Is there a possibility that you can see another neurosurgeon that isn't so far away? I'm sorry you drove all that way to have your time wasted. I know something must be done for you.
  • MEYDEY321 - First, thanks for lending an ear (or an eye, in this case?). I have actually seen a NS and a Neurologist that practice in the same town that I live in (or near it). Both turned me away based on my age. The only other NS in the state that would take my insurance was the one that I saw, just today. A total bust.

    I am 34. The problems started at age 30. It started as intense neck pain (I couldn't turn my head an inch either direction). After X-rays and MRIs, it was determined that I have DDD in the C5-C7 along with OA, stenosis, bone spurs, and spondylosis (spelling?). Over the past 2 years, I've started noticing lower back pain with some resulting side effects noticed in the legs (numbness, loss of sensation, etc). My doctors have flat out refused to hear about my lower back problems, as the want to "work on the neck, first". But yet, they DON'T work on my neck, because of my age. It's like a bad dream I can't wake up from.
  • I hope you can find someone who will listen to you. I have read that others found help at teaching hospitals, is there one in your area?
    I have been told that I am too young at 41 for the lumbar problems and that my ortho did not want to do surgery. But I have done all the other options and now we are looking at surgery.
    I had cervical C5/6 ACDF last March. With a good outcome. I hope you keep looking for the doctor that is going to help you, dont give up, the right person is out there.
    Keep us updated.
    Take Care.
  • POOLLADY - The nearest teaching hospital is U of M in Ann Arbor. I was supposed to go there, but was unable to, due to insurance limitations. The NS I saw today was the "plan B", since I was unable to go to the U of M hospital.

    I have an appointment with my PCP, tomorrow to lay it all on the line, for him. Basically, it's going to be a meeting where I tell him to do something, or I am replacing my entire medical care team with one who cares to do the job. No more playing! Time for business!
  • IMO you should be counting your blessings that some surgeon hasn't jumped at the chance to operate.

    Im aware that I'll win no popularity contests here,but that isn't my purpose so...to answer your question though.I don't think you would have a case against any of these Drs for not wanting to operate at this point.The Drs know that your pain is going to get worse with time,and that you are likely to need more surgery later in life if you start now.

    DDD,bone spurs,and even bulging discs are not uncommon at all,and in and of themselves are not a reason to operate.I have all of that and more,and have done extensive research to be sure that I was making the right decision in NOT having surgery.

    When you go to these Drs are you going in with the expectation of hearing surgery as your only answer? If so,that might be why you are feeling that it can't get any worse.There are other conservative treatments to discuss with the Dr besides PT (if that is too painful).

    I do understand frustration,and pain...but getting frustrated with Drs generally won't get you the help that you desire.On another note-you should take in the CD of your MRI and all other films that you can gather for your next appt.,it shows them that you are being responsible and proactive on your own behalf-besides,you saw what happened when you left it up to them.

    Do you have a Dr that you see on a regular basis that can treat you without surgery?
  • At the time I started my first post there was only your post there...so I missed some things as I was posting.Oftentimes I start posting and get delayed with a phone call or something.This time I missed a LOT.Sorry bout that.
  • I agree that increasing pain, alone, may not be reason to seek surgery. But, as I stated above, I am slowly losing functionality in my arms and legs as a result of these issues. If THAT isn't reason to seek surgery, then I don't know what is.

    My doctor has been fumbling through almost every "conservative" treatment in the book. They either are ineffective or make matters worse.

    What frustrates me is that they aren't LISTENING to what I tell them. You know... the "I'm the professional, here" attitude.

    It doesn't matter to me how many years they went to school to study their field, or how many years they have practiced. When they stop listening to the patient is when it's time to move on.

    If I don't get frustrated and jump down their throats, sideways, I will never get heard. And that is unacceptable.
  • ROBIN - Don't worry about it. I have satellite Internet (supposed to be faster than dial-up, but not really). I end up missing a lot, even though I'm always connected! heh heh
  • Sorry to hear your docs are being less than professional. Been there myself. I started pursuing my pain issue at 21. The docs were comfortable with all the conservative treatments, PT, chiro, etc. but didn't want to consider surgery. I was too young, the pain must all be in my head. Pain never went away despite 6+ PT attempts, 5+ chiropractors, etc.
    Unfortunately, docs aren't required to treat anyone. i don't think you could pursue anything legally. any chance that your primary care has "blacklisted" you so to speak?
    I got better results when I researched and found my own docs instead of leaning on my primary care. although sounds like your options are limited in MI, sorry bout that.
    I agree with Robin, I keep a copy of all my xray, ctscans, mri, bone scan films and reports. I carry them all when going to a new doc or all surgeon appts. it's come in handy many times.
    Curious, do they do discograms in the C5-C7 section? If so, if it tested positive, you would have more concrete evidence of pain that is more credible than your MRI's. Just a thought.
    Good luck. Don't give up. You are your own best advocate. It might take some time to find the right doc.
  • CT HIKER - I really should have known better to trust that doctor I saw, today, to follow through. I usually carry a "trust no one" motto, but for some reason, I totally expected this doctor to follow through. The agreement was that he would order the MRIs and have the films (or disc) and the report sent directly to his desk, since he is so far away. That way, he could review them before I came back for the follow-up. Sadly, it didn't go that way.

    As for the discograms, I'm not sure. I've never even heard of this, until today. I might have to do a little research on the topic and see if it's something to recommend to my doctor.

    The pain has been FAIRLY well controlled using medications, except for the increasing headaches I'm getting. What is beginning to bother me are the relatively new symptoms I'm getting (the twitching, the sudden jerking motion when I feel like I have a hot, metal blade being shoved into my spine, and the loss of sensation in the extremities, among other symptoms). It's just really irritating that, just as you experienced, they believe that just because you're young, there is no way the problem can exist... even when you have radiological proof that THEY diagnosed. It's just mind boggling. I guess one just needs a medical degree to understand that logic... ;)
  • I think these are excuses for doctors who don't want to operate. Your insuranace issues limit you and that is a shame. Age should have nothing to do with it. Both my surgeons said I need an operation fast because I was losing muscle mass, tone and strenght, had numbness and of course-the pain! Can you try orthopedic surgeons? They also do cervical operations. I found a wonderful chiropractor who helped with my pain until I could actually see a NS. But I did not let her mess with my neck-well,it was basically frozen from the bone spurs, so there was nothing she could do, but she helped with the pain and at least listened to me!

    As someone said-have all the records of tests with you and get respect by going in there well informed and prepared and questions on paper and ask them. I would take a second person with me and tell them it is because I needed someone without pain and a clear head to help me recall everything that is discussed. Good luck!

    PS My husband was getting numbness and loss of feeling in his leg due to a sport hernia-check it out and see if that might be an issue with you. Just a thought.
  • I also was blown off by the 2nd opinion Ortho. He couldn't even see anything on the MRI. I said but what about the Herniation. He said yeah a bulge. I said there was disc material in contact with the nerve and annular tear. He says I'm not a candidate for surgery. It can be frustrating I can relate. Even my PCP is getting upset for me asking to see Specialists as she has to refer me to them. Keep trying and I hope you mention any more symptoms to your PCP. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • TURTLE - And therein lies the trick... trying to get informed. I've asked my PCP and all specialists I've seen if I could get a full description of my what is in the reports. They tend to dance around the issue and they want to charge me for a transcript of my charts (which I can't afford, as I haven't worked in a long time, due to my neck). I have found out a lot of what the reports say from my disability attorney! What a bad way of finding things out...

    I see my PCP, today. It's going to be a Wild West showdown... I'm not leaving until I have everything I need... including peace of mind that somebody is going to make an attempt to take care of my issues.

    CHARRY - Incredible how different "specialists" tend to see different things from the same MRI. That is one thing that really frustrated me from yesterday's appointment. I had somebody from my PCP's office read my latest MRI report to me. It states, clearly, that the osteoarthritis between C5 and C7 had notable change between March of 2008 and December of 2008. When I went to the specialist, yesterday, he had the same report, but told me that there was absolutely no change between the 2 MRIs. When I attempted to protest that, he interrupted me as if he had better things to do with his time. He didn't want to listen to it. I see my PCP, this morning. We're going to go over all new symptoms, all symptoms that have changed, and my disappointment with the mishandling of my case. It's an appointment that I'm not really looking forward to... :)
  • There's no way your too young to have those problems,sounds like there using your age as an excuse.fortunately i never ran into that problem trying to get someone to operate on me i was your age when i found out i had stenosis,,spurs and herniations.mine was congenital.I had leg pain when i was very young in my early teens but didn't know why,i was constantly sent to orthopedic surgeons to find out why but they were just looking at my legs and never thought it was coming from my spine.Have you tried any orthopedic surgeons yet? maybe they could help you more than the NS. maybe you just need to refuse to leave there office until you get all the answers your there to get and are satisfied,i did that with one apt. i went to and really surprised the guy when he got up to escort me to the door and i didn't move.I hope you have more success with your next apt. good luck.
  • TAMMYC - I have tried an orthopedic surgeon. Some 70-year-old guy who also said my age is too young for him to consider surgery.

    I talked to my PCP, today, about it. I told him that I am beginning to drop things (including a full bottle of water when I was attempting to drink... that was fun!). That with the twitches, the loss of feeling in my legs when sleeping... I told him everything frustration I have with how things are being handled. He was rather shocked that nobody is willing to do a surgical procedure, for me. He said that the report is clear that my quality of life has been affected. I should be a candidate for surgery. Now, we just need to convince everybody else...
  • well at least you got him to listen to you ,did he have any other suggestions for you?why couldn't he call one of the many surgeons you've seen and talk to them about your condition.I know people that have had very quick results that way.
  • The only other thing he recommended was, if I get to the point to where I just can't take it, anymore, DEMAND surgery. That puts me at an interesting spot. I've already demanded a lot from these specialists - to the point to where I am sure I'm not their favorite person on earth. Do I really want people who are somewhat annoyed with me slicing into my neck? ;)

    I am definitely at that point, though, to where SOMETHING has to be done. My quality of life is such to where I can't even work, anymore. Yet, disability may not be a choice for me... again, because of my "young age". Nobody seems to understand that I'm a 34-year-old with the spine of an 80-year-old... :)
  • Is there a possibility that these specialists are getting cold feet because you have a disability lawyer? Maybe they are afraid of getting sued or something. I'm trying to figure out why they won't listen to you. One time when I had DDD symptoms and a disc bulges on C5-C7, my records were sent to a neurosurgeon and he said I wasn't a surgical candidate. I never have laid eyes on this doctor, and neither had he. After that I saw a psyiatrist and was told there was nothing he could do and PT was a waste of time. A couple of weeks later I blew out my L4-S1 discs.
    Please keep in mind that back surgery doesn't always work, it's a 50/50 gamble and I lost both times. It is always best to try the least invasive route first. Nowadays they have minimally invasive fusions and other technology, but they have their benefits and risks.
    Did you say you go to pain mgt? If you can't get surgery at this time, then maybe a pain doctor is good for you and they can adjust your medication or perform injections so you get better relief. Whatever happens, don't give up. There is help out there :)
  • MEYDEY321 - I don't think it's because of the disability lawyer. They've been excluding surgery as an option before I applied for disability. The only reason they have given me is age. They have said that I am certainly a candidate for surgery, because my nerves are being affected (causing me to drop things, lose track of my legs at night, etc). But, they said that, because of my age, they do not want to operate. I just can't figure it out.

    I have heard that surgery is 50/50 which has caused me to reconsider my desire for surgery. But, my things have gotten to the point to where I can't even do a 90-minute photography session without being knocked out of commission for 3 days afterward (the pain causes migraines, at this point). My quality of life is so affected that I think it would be worth a shot.

    I've gone through the pain clinic, but the local pain clinic is run by the same quack that immediately ejected me from his office (due to my age). The medical system in this area is terrible. Terrible!
  • dharvell,I feel your frustrations. I also had an incredibly frustrating journey to get diagnosed and treated. My NS who had done surgery on me last year insisted my new symptoms were not possible and dismissed every diagnostic test that i had. I was very limited in which Dr I could go to because I had an HMO. Their bottom line was the almighty dollar.I know your funds are limited but is there a way you could come up with 150.00 to pay for an independent opinion? Thats what i did and it was the best money spent. We went to a teaching hospital. I had all of my films on disc. Hospitals usually will not charge for this if you tell them you are getting another opinion. The NS at the University does not want to know what your other drs think.They took my films,asked me questions,examined me and had me in surgery within a week, When you tell them you want a second opinion,thats exactly what they give you,their opinion!
    I just wanted you to note also that the NS at the University explained that muscle weakness is a serious indication that something needs to be done. He stated that pain was not a RED FLAG like muscle weakness is.
    I wish you luck. Remember you are your own best health advocate. You are the boss and if you are not comfortable,move on. I am glad i did but because I had such a huge runaround.I will now be facing long rehab and the possibility that the strength may never return to normal.
    Don't give up.
  • Thanks for the reassuring words.

    Currently, I don't even have a dollar to my name (been unemployed for a little over a year and a half). The only way I can think of to make some income is photography (which I can't seem to do much, anyway) and a cool idea I had for a social networking web site for musicians (which I can only chip away at when I am able to sit for a length of time). I'm getting close to being done with the social networking site, so I hope that brings in some cash.

    If cash DOES start flowing in from my idea, I will absolutely take your advice and go to a teaching hospital. I would LOVE to do so.

    If muscle weakness is a red flag, then I've got some flags going off, everywhere. I can't seem to hold on to things, anymore (I dropped a bottle of water down the front of me, yesterday, while attempting to drink!). A few months ago, I attempted to walk and fell to the floor. When I stood back up, I just slumped back to the floor. I sat on the couch, lifted my left leg up to notice that my leg was having horrible tremors. I have a ton of weakness.

    Things have got to get better. If not for me, then for my family. I'm supposed to be the provider, but I can't provide in my current state. It's a rather helpless feeling... and I HATE that.
  • Have you had a Ct scan or EMG? An emg will at least show the nerve damage. Also a myelogram was very useful to the University surgeons
    I feel horrible for you. This should not be happening to you. Have you asked your insurance company for a second opinion? I was denied by my insurance for a 2nd opinion but was approved after I appealed it.
  • I'm getting ready to leave for now & not much time,but I have a few ideas about this situation.One of them (real quick) is that you mentioned photography..and falling,and tremors.Take some video if you can.Keep your vid with you at the ready at all times until you can catch this on film,and then show it to your Dr.Chances are they WILL take you seriously then.Since reading these posts today I have more thoughts,but no time as I'm moving a few boxes tonight,but will try to post to you later.

    PS~I posted this so that I wouldn't forget-lol.TAKE CARE!!

  • That is a wonderful idea that Robin has. It would be concrete proof and all these specialist will have to take heed of this evidence. I cannot believe that pain mgt dismissed you too; age does not have s@%t to do with them not treating you. My heart goes out to you because you are suffering needlessly and it's so unfair. On my medication pamphlet it says that fentanyl pain patches are given to 2 year olds, so they must be seen by a pain doctor and therefore you are not too young. And on top of everything else, having back pain is very expensive with all the copays and testing. You need help. They can't ignore your symptoms; it is NOT normal to be dropping things. I pray that someone helps you. This just isn't right. >:D<
  • I live in an area which my insurance has NO providers. Every time I have to go to another doc they have to call the insurance company and explain that there are no more resources near me and ask to be put on as temporary providers.

    The insurance company works for YOU. Don't let them tell you that you can't go to a reputable teaching hospital. Let the insurance people at the hospital do the work and then make a follow up call to the insurance company and tell them why it's so important that you visit that particular doctor or clinic. You'd be suprised at how many times they make an exception.

    It never hurts to ask. Don't give up or settle for doctors who don't care. Some doctors will also lower their proce to what the insurance company will pay them- it never hurts to ask about that too. Hospital have funds set aside for cases like yours and all you have to do is ask about it. They'll have papers for you to fill out but it's relatively easy.

    I wish you all the luck,
  • ROBIN - I do have a point-and-shoot digital that takes video. The first day I fell, that camera was within reach of me (when on the couch), so I took a video of my leg tremors. I called for an appointment ASAP (PCP doctor) so I could show him the video. He was amazed at what he saw. I attempted to show the Ortho the video, but was told that I couldn't take my laptop into the building (security reasons???). But, my PCP made notes about the video. Speaking of notes, I'm heading for a nurse's visit (for an unrelated problem), next week. I'm going to pick up copies of my reports at that time. That way I have access to all the info. Every doctor seems to have their version of what is going on, so it'll be great to have the actual file, so I can fight their BS with facts. I shall arm myself! :)

    MEYDEY321 - heh heh... speaking of dropping things, I was pouring myself a box of Cap'n Crunch (nutritious breakfast!) when, all of a sudden, before I knew it, the box was on the floor, along with my bowl, with cereal everywhere. I dropped the box and knocked the bowl of the counter trying to catch myself. Ridiculous! As for the pain management clinic, I might try to find one in another city as the local clinic is run by the same NS that literally told me to leave and come back when I'm older. In fact, he had his assistant give me the message. The actual NS wouldn't even see me. Apparently, he's a NS as well as a pain specialist. There has got to be something better in another city.

    GRIFF - Awesome idea. I am going to set aside Monday morning to make me some phone calls. First call will be to the U of M hospital and the second one will be to my insurance. The optional third call may be to my PCP in case a referral must be made... I think the U of M is where I need to go. I've heard great things about that hospital in regards to spinal injuries and other such issues.
  • GRANDMESAMOM - I had an EMG done about a month ago. The good news is that, as of yet, there is no nerve damage. I haven't had any CT-scans of the affected area, but I have had several MRIs. The MRIs show that the nerves are being impinged on by the various issues in the area. That area is getting worse, month by month, so it would be great to take care of that area BEFORE the nerves ARE damaged. I just asked for copies of my reports from my PCP, so I can view, first hand, what is going on. I'm getting different explanations from different doctors, so I'm going to get the report in my hands to see just what IS going on. Perhaps, if I arm myself with what they are not telling me, I can more effectively fight my battle...
  • In my very first post,when I mentioned that DDD & bulging discs not being uncommon,and not a reason for surgery..while this may be true,it is a different story when you have The MRIs show that the nerves are being impinged upon,along with your other symptoms.

    With your symptoms,and all of the evidence of those symptoms that you have at your disposal-there is no doubt in my mind that your main concern (outside of the obvious) is finding the right Dr to treat you now.Also,I think you will find that Dr. soon.

  • ROBIN - Very true. I've heard, in fact, that a vast majority of the population has some sort of spinal issue (bulging discs, etc), but they are asymptomatic. I've also heard that a lot of these problems can be self-correcting. I've been suffering with this problem for 4 years and it is getting worse, showing that it's a degenerative disease (thanks, dad!). My PCP is pretty convinced that I should have surgery, at this point (due to the nerves being impinged upon). Sadly, we've yet to find a specialist that is willing, due to my "young age"... though I find it flattering that they call me "young". :)

    I appreciate your optimism that I will find the right Dr., soon. There is a possible move to New Jersey in my near future. I'll be living close to New York City, when the move takes place. I'm almost sure that I can find a really good doctor in that area. I'm really looking forward to finding the right doctor... wherever that doctor may be!
  • < this was a double-post... wasn't sure how to delete the post, so inserted this text in here, instead >
Sign In or Register to comment.