Who else to try

[joshua217777]

Im so mad.  Went to a orthopedic surgeon today to look at my neck.  Ask my symptoms, and then pushed on two spots in front of neck and two spots on back and ask if tender.  He asked about my brain mri and what it showed.  Just tiny scattered areas of white matter signals.  Anyways after he felt of me he said Im not the guy to help you.  He said i need to see a neuro because it sounds like something going on in the brain, blood flow or something.  Ultrasound of Carotid was normal.  Blood tests normal.  MRI neck normal except small herniated disc C4.  Vision test normal.  Ear tests normal except stapes spasms.  Im trying every thing to get my neck fixed, but it seems theres no one that wants to deal with it.  Im sick of going around and one hour my jaw neck and head feel like something is shut off to it feeling wise, pressure feeling, and a minute later I feel good.  I cant even get anyone to look at a very hard lump I feel about size of a marble that runs from back of head down left side of neck by the spine.  Ortho just said lymph nodes are there and its normal, but he never felt it.  Not like that on the other side.  Im so frustrated now, I dont know where else to go to??

[zzzzzzzzzz]

Just re-read your post from yesterday. Wasn't too onto it yesterday - had assumed you were talking about small swellings at the base of your skull & upper neck. The ones that go all the way down the neck are a little different - when I had one recently, osteopath said they indicated there was an infection somewhere in my body and he would not treat me until it went down.
I agree very much with the comment from the poster above about 'meek and mild'. I have learned from my doc's reactions never to mention stuff I have seen on the internet or indicate that I think I know whats wrong with me. With the Neuro, I try to manipulate the conversation a little towards things - with questions mostly. Rather than 'I think it might be this' I try stuff like ' why is it my head gets worse when....?' You need to go well prepared with questions - not answers. Demi is very right about this.
The other thing I wanted to say is this. You have been to three neuros - while its good to get a second opinion, I am finding it beneficial to build a relationship with one, and think maybe thats what you need. I'd say that its quite possible that no Neuro will have answers for you at this point and that only time will tell. I know its hard to have no answers, but maybe you would be far better off if you could it accept this and take the neurontin!. Seriously Josh - just how bad are your symptoms if you can manage without taking it? Are you taking anything at all? Have you tried the Antidepressants? They can really help. Speciallists are not going to take you seriously if you don't follow the treatment - they're just going to get frustrated with you.
I wish I could get my hands on your neurontin - its harder to get here due to funding limitations (different system)- I've waited a year to get to the stage where my neuro will consider prescribing it.

[joshua217777]

My Dr said there are many side effects to Neurontin.  This may sound crazy, but I think my head may be too heavy for my neck.  After the torticollis and chiropractor, my neck was in awkward positions for a long time.  One shoulder higher then the other.  Its not like that anymore but was 6 months ago.  I tried pulling my shoulders down real hard and that relieves all the pressure in my head and jaw.   I let go and it shoots right back into my head and jaw.  Maybe my neck cant support my head and its scrunching spinal nerves or something.  Maybe thats why when I lay down or bend over everything except the ear spasms go away.  I think my next move will go back to the physical therapist and ask  about neck traction or why doing that to my shoulders makes so much difference.

[zzzzzzzzzz]

Hey Josh - I just found this brilliant website - one that I think you would find very useful indeed - explained a hell of alot in a language even I could understand - don't want to print address here as I suspect I could be breaking rules, but if you go into the neurology forum on this site, and look at a question posted today that Jennywren has posted under, you'll find it there. Let me know what you think.

[zzzzzzzzzz]

I think its a very good idea to go back to PT, and if you look on that website, you should be able to understand why the problems go when you are in certain positions. Its all about Myofacial pain - muscle spasms and the causes, consequences and treatment. The neuros and orthos don't seem to take much of an interest in this area and so they put the cause down to anxiety - which may well be the cause in some cases, but this website goes into many others. I found it incredibly validating - may not be the cause of all my problems, but deffinately a big part of it. As for the neurontin, yes - its bound to have some side effects - they all do, but its different for everyone and I reckon for me its worth trying and seeing how it affects me before I discount it. I had a pretty bad lumbar injury 2 years ago - badly herniated disc. Life was hell, and at that point I refused to take any meds as I felt very anti drug industry. Doc gave me amiltryp - I refused to try it. I couldn't sleep with the pain and was a mess, so I tried it out of desperation. Made me feel very woozy so stopped it after one day. Back at docs - told her no meds and why - she said 'you have to take it more than 3 days to give body time to adjust'. Tried it and wow! what a difference - I could sleep, walk - still with pain, but I seemed to care less. It changed the quality of my life enormously and it took me 3 months of living hell before I tried it!. Yeah I don't believe in just popping pills without finding a cause, but quality of life is important too and it doesn't sound like you're having much fun Josh. xxxx

[joshua217777]

Thanks for all the support zzzzz.  You said they prescribed amitriptilyne for you?  Was that one that you decided even after taking one day to give it another try?  That is one that a second neuro prescribed for me.  I never did try it either.  I went to the State Fair today and they had a posture evaluation and massage booth.  It said Im 18 lbs heavier on my right side then my left.  My hips were lined up correctly.  My right shoulder was a little higher then my left.  And my right ear was alot higher then my left when I was standing straight.  She said she felt alot of tension in my neck and recommended me to go to a chiropractor because its possible misalignment.  I asked about squeeking in my neck and she said may be a joint that gets stuck and unstuck.  I have a thin neck, and my brother said it may be a vertebrae Im feeling?  Ive had the hard lump and area down my neck for 6 months.  The last two days, after taking a shower, it feels alot flatter, but just temporary.  Never done that before.  I guess also theres a spinal accesory nerve that supplies the traps and sterno muscles, and also the trigeminal nerve.  If its getting compressed then you can have altered sensations wherever the nerves go.  So yea going back to the PT.  ZZZZ you said youve had similar problems as me, what are you doing about it aside from medication.  What are you trying or thinking about trying.

[joshua217777]

Wow I read Jens webpage link.  I think others should read it too.  I didnt know especially the sterno muscle even causes so many neurological like problems.  That is one muscle Im going to have the PT look at for me.  Last time never worked on it.  Going to try a indian doctor that deals with homeopaethic because my sisterinlaw knows a guy that had similar problems I had and it fixed him up completely.  Ill share info for everyone when i can