Not taken seriously by doctors

Bones, joints and muscles
1

Hi-

I'm new to this forum but not to CS. I'm in the US, but there are very few good forums here regarding CS.

I'm a 37 year old female. Just thought I'd mention my frustration with doctors regarding this condition.

So far my primary care doctor has been the only one that has listened to my pain concerns at all!! I went and had an MRI done. The MRI came back with mild spondylosis in my C-spine but no \"significant\" nerve impingement. Since then, this MRI seems to tell every doctor that I could not possible have pain and also that my pain is not in any way related to my CS. Might I add that when I lie down, the pain gets better and the MRI's are taken while you are lying down of course. Hmmmm.

Every day for the last 5 months I've had almost constant nerve pain that travels from my shoulder blade, up my neck, across the back of my head and sometimes up into my jaw. It burns, it aches and it gnaws. I also get numbness in my fingers, weakness in my hands (can't open cans or jars) and sometimes so much weakness on that side I can barely lift my arm to put on my make up.

I've been to two different Pain Doctors. One Pain Doctor is part of the Spine Center at the hospital I work at. The other Doctor is part of a physical rehabilitation center and also supposedly a specialist at EMG (nerve conduction testing) Both are the Medical Directors for their departments and several of the medical boards.

Both talked to me for about five minutes, gave me a quick exam and then told me the pain is in no way related to my CS. They told me to go to PT and told me that with the pain I just need to \"tough it out\" since it will \"go away\". The first doctor gave me some exercises to start at home immediately until I could get into PT (which was three weeks away) Within 2 days of doing these exercises I was crying and in so much pain I couldn't get off the couch. Luckily my primary care doctor as prescribed me some muscle relaxers and ativan because it's the only thing that helps. Ibuprofren doesn't touch it.

The second doctor I went to see at the rehabilitation center took me to the front desk to schedule my PT. The front desk lady told him it would be 3-4 weeks before they could get me in and he told me that was \"fine, since I've already been in pain for awhile i can wait a little longer\". After that, an older man came in and I heard him tell this same doctor that he had numbness in his hands when he took a walk. And then the doctor told him that they would do some EMG testing immediately.

Now, why would the other guy get treated this way for some numbness and I get shooed away and told to \"just deal with it\"?? And why would countless doctors tell me that this pain has NOTHING to do with Cervical Spondylosis when these symtoms are classic symptoms of CS. You can look on any website and find these symtoms!!

So far, the only thing I have going for me is my primary care doctor and a really good chiropractor I've found. If it wasn't for those two, I really don't know how I could go on. I cannot put into words how much it hurts to have multiple doctors not listen to me and not take me seriously.

sad

2

Hi Austin,

So it is the same the world over then. In the UK it is usually Neuro Surgeons that deny that patients symptoms are CS. They usually try to put the blame on to various other medical conditions despite the results of scans and tests. This may be because some of them simply do not want to perform the necessary major, and sometimes risky, operation. You can have all the classic symptoms of CS and your tests can prove it but they will still say it is berry berry, trench foot, ringworm, constipation, ingrowing toenails, dandruff or just your imagination. Many have experienced this.

I have been told, on good authority, that one foolproof test for damage to the central nervous system is the Babinsky test. This you can get a friend or relative to do for you, it is quite simple. It involves firmly running a pointed but blunt stylus, like a large kniting needle or pen (without the nib else you get inky feet) along the outer soles of your feet. If your toes react by clenching then you are okay, if they stretch outwards and upwards then you most likely have nerve damage. Checkout the Babinsky test on the web, there are even videos showing how to do it.

Best of luck and keep pushing the docs until they listen to you. PT may only make things worse if it is CS.

Janner

3

i thought it was just me in this situation. i have been to see my pain specialist for treatment to do with pain in my temple, which is sharp and unforgiving. i have seen maxilo facial specialist, he thinks it is my neck( yet again) , so when i go to see my pain specialist i ask him if my mri results were back as i hadnt heard from my neurosurgeon. so thinking he would be able to tell me something, i waited,,,, he checked and told me it is only a case of wear and tear, yet i am on oxycontin which tells me it isnt nothing. sorry for the double negative,,lol. so i leave there in tears as i am made to believe this pain i have suffered for the past 18 going on 19yrs, is all in my head there is so much i can no longer do and my family will attest to that . from my finger tips to the top of my head i am in pain. so what is it phantom pain??? my mri from 13 yrs ago shows that i have significant damage, so why is it different now???? chris xx

4

Janner-

I found several videos online about the Babinsky test and will have my husband try it out tonight and see what happens. I guess it can't hurt at this point.

And I think you are so right about the PT. As I said, this is not my first episode of pain from my CS. The first time I tried PT for this condition it was after seeing an orthapedic doctor. He believed it had nothing to do with CS but was actually a situation where my shoulder was moving too much. So as it moved back and forth it would pinch the nerve. Then I went to start PT and the PT actually diagnosed me as having a shoulder that was not moving enough. (I've since been told that the PT must treat you for what the doctor diagnosis you with--live and learn I guess).

Anyhow, after months of doing all the exercises and no pain relief, I finally stopped doing them. I went on a vacation to Maui and drank a bunch of tropical drinks with umbrellas in them. I completely stopped the exercises and just rested. And guess what? All better. I call this the Maui drinking cure.

But alas, it was not a permanent cure because now it's back.

Since I've last posted I have only rested and gone to see the chiropractor. Once he's done I may look into PT again but I'm not sure yet. My PCP told me I could just go for stretching and heat ultrasound and traction if I wanted it. She told me whatever feels good and helps the pain- do that. So far, her advice has been the soundest. Sad, sad, sad. :roll:

5

Hello austin

I've just read you postings - I've been suffering, and I mean suffering from CS for about 10 years, I can relate to everything you say about it, and I'm pretty sure every other sufferer would say the same.

As Bob Dylan wrote \"you dont need a weather man to know which way the wind blows\" These doctors are not stupid, they know exactly what CS is doing to the suffer but for some strange reason they dont seem to want to accept the symptoms - maybe if one of them got it themselves they would be more understanding - if you get it severe you wouldn't be able to work.It really isn't possible to do any physical things, because I've found that I hurt more - the more active I am, in fact after a while I'm not able to walk, and the pain becomes intense.

I dont believe that you would have to do a Babinsky test to find out if you have nervous system problems - your own body would tell you.

It's nice to hear from our friends in America. Good Luck Alan X

It's nice to hear from our friends in America

6

Alan

Your body tells YOU but the Babinsky Test tells the Docs and doubters, the test is apparently foolproof. Remember, nobody else can feel our pain.

Janner

7

Hi everyone

Just revisiting to check everyone's behaving themselves! Seriously, I took a bit of a breather after the last, not so recent stuff. Also had more pressing dental matters to sort out....almost done and feeling good. Nice to see the show is still on the road and will hopefully be adding my pennies worth in good time. Must try the Babinsky test...new to me.

Gerry

8

Hi Gerry,

You will need help to do the Babinsky test as you cannot do it properly yourself unless you are double jointed. Be careful if you have ticklish feet or you could end up kicking the other person in the gob.

Janner

9

Hello janner it's nice to see you back and you Gerry:

I believe that I had that Babinsky test when I was in Charing Cross Hospital about 5 years ago - I spent 4 days in there having extensive tests.

Alan D