Spinal Nerve Doc In Northern Calif.?

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Apr 18, 2007.

  1. joeb7th

    joeb7th New Member

    As part of my continuing struggle with all this pain and other incredibly disabling symptoms, I am noticing more and more something wrong in my spinal area.

    Isn't it incredibly depressing and frustrating that when we first get sick with whatever this is that hits us so powerfully in so many horrible ways and parts of our bodies and with never before experienced feelings that you often can't adequately describe what you are feeling?

    Sometimes your descriptions come out wrong, simply because you don't know how to describe what you are feeling!

    Do you now what I mean?

    Not only have I had difficulty describing these painful and odd feelings that I have never had before, I sometimes cannot even get my mind and thoughts focused enough to pin-point what I am feeling! The pain clouds and distracts your mind!

    It's like your mind is affected in a way that is confused but confused I think from being so overwhelmed with all the pain!

    There is pain in so many areas and some of it is so unusual and different from each other and anything you've ever felt before, how do you explain this to a doc when you can't even explain it to yourself?

    And because of these reasons, many times I have innocently mis-described my symptoms and feelings to docs and they just shake their heads and usually say there is no way someone can have all those symptoms and feelings at once, OR THEY DON'T MAKE SENSE, or they go off on a single pain area theory and when the tests for this theory turn up negative they get frustrated and even irritated and angry and fed up with you and move you on.

    So here it is 1 and 1/2 years after I first got sick, and I am just now able to seperate and get more focused and specific about at least one of my symptoms. And I am still not even sure about this one!

    But it is a massively excrutiating and mind absorbing pain that radiates out from what appears to be my middle to upper middle spine area. It makes my whole upper back and neck and even shoulders just scream in tense pain.

    I get these all day or half day attacks where this pain radiates from my middle to upper middle back and up through my neck and shoulders. It pains and tenses up my back and neck so much I let out these continual sighs and moans. It's torture really.

    And the stress and pain from all this seems to either trigger or go along with the rest of my body going into pain mode. I also get off-balance when I have to walk during these attacks and wonder if this is affecting the nerves that go into my head for balance.

    During these attacks, many other areas of my body that have had immune system break-downs like my new asthma and my L-1 fracture and my tendonitis all over, all go off and feel much worse than normal. My intestinal tract goes into a stronger pain mode also.

    I have been diagnosed through X-rays with so called "degenerative" disc compression at C-6 and C-7. I am speculating that there is something either pressing on my nerves in this area or something has actually damaged my nerves in my spine in some way like a neuropathy.

    I feel it is my nerves because when I get all this pain which is almost constant now to varying degrees, I feel not only pain like a massive pinched nerve in that whole back area, but my bladder and even penis feel different in the worst of these attacks. And my heart seems to jump sometimes with this and I get popping in my shoulders and even ears. Go figure.

    My penis tingles and my bladder seems to go into an urge yet less strength feeling mostly. I feel the urge to go but not that much comes out and the flow is weak.

    Also my intestinal tract seems to go into an exhaustive raw soreness during these back pain attacks.

    Just my whole body goes down big time. Could nerve damage in the spine effect all this?

    I saw a spinal doc here locally for the first time a couple of weeks ago who saw the one Rhuemy report with an X-ray read taken over one year ago. He physically felt my spine and said it didn't look that serious to him and he certainly would go in surgically. He didn't even address the pain . I didn't have enough time to explain what I have explained here. So I left his office feeling I didn't have time to tell him about all the pain in a way that I can here not being rushed.

    Man, so many doctor visits this has happened to me.

    But, I am so certain that there is something very wrong with my spinal nerve system that here I go again. I have to leave the small town area I am from and seek out another spinal doc. in the San Francisco Bay Area. Someone I can maybe even copy this article and show them this? And who will take the time to read it?

    Does anybody here have any suggestions after reading my description of my symptoms here?

    And can you reccomend a good doc in the S.F. Bay area who will take a closer look at me?

    Thanks, JB
  2. joeb7th

    joeb7th New Member

    Is this guy a neuro-surgeon?

    Thanks, JB
  3. sascha

    sascha Member

    i first read about it maybe a week ago, and immediately started trying to find practitioner. it (supposedly) corrects the very top vertebra on the spinal column in a gentle, non-chiropractic way. i am having terrible back/spine/neck & up into the head pains and problems.

    i'm getting a treatment next week, and hope it will help.

    you have been/are on a road of major troubles and i hope you will find relief and answers- Sascha
  4. joeb7th

    joeb7th New Member

    Sascha, where is this doc you found?

    Are their any in Northern Caifornia that do this.
  5. LouiseK

    LouiseK New Member


    What you describe sounds completely familiar to me (except for the penis . . .ha ha). Seriously, I know exactly what you are talking about. Plus I hhave many other neuro "symptoms". I think something attacked my nervous system in the first place because my first symptoms were neurological . . .but that's another story. To get back to your problems, first, you are not crazy. This is really happening. Second, I was referred to a neurosurgeon and all he said is he didn't think I was a candidate for surgery. Similar to your experience. Doctors don't want to talk (it's too expensive for them) and they don't want to prescribe anything for pain because it can't be proven to their mal-practice insurance companies that it was necessary like they could for prescribing anti-biotics for strep-throat. The last thing they want to do is listen as listening is so openended and they are not controlling the situation.

    I find in managed care that the doctors try not to let you get a word in edgewise as they can control how long they talk and keep it oriented to the end of the meeting.

    The situation is beyond horrible. So is this terrible nerve and spinal pain. There was a recent post called something like "spine on fire" or "spine burning" you might check it out for comfort and some suggestions.

    I am plagued by this myself. Once a PT made me lay on some hard styrofoam thing and I really thought of suicide after how that flared up the nerve thing. All to say I sympathize. Please post if you find any answers or relief.

    Best wishes.
  6. joeb7th

    joeb7th New Member

    Just like my expereince. You described it to a "T."

    This spinal doc controlled the conversation, used up all my time with a quick exam and then finished up saying he didn't think surgery was needed. Nothing else!

    And you know when the doc wants the visit to end. They know exactly which body language to use.

    Now, after reading your post, I realize I was thrown off guard by not being able to get my mind and conversation on what I was truly feeling in my back of neck and a little lower area of my spine and what it appears to be doing to me.

    It takes me a few minutes now to get things out and clear in my head ( with all this incredible unprecedented brain fogging ailments all at once ) and these docs know how to keep you off guard with certain questions and then saying, sit here and roll up this or move this.

    You get distracted and before you can say much more than the first brief reason you are there...your time is up. 15 minutes usually.

    I have been telling docs for over 1 year about this pain and tension in my back and neck and spine area.

    They did an x-ray and saw the compressed discs C-6 and C-7 and the fracture in vertebrae L-1 posterior. But they determined these were " mild."

    But what I am saying is this with my condition...either something has damaged my nervous system and I am feeling much more pain in these areas from that...or something is physically pressing against or pinching the nerves in that area.

    As I write this and for so many months, my back and shoulder and neck muscles are so tensed up from something making them involuntarily do this, that it affects my breathing and my chest and even my balance.

    Whatever is happening to me is so intense it's like some very strong person has their hands gripping my muscles in these areas and they just squeeze as hard as they can and they don't let up!

    When I took Lorazepam, which I am trying to kick, this did let up this tension maybe 60%. Isn't it obvious that I have something affecting my nervous system if the lorazepam is effecting this? Isn't that what Lorazepam does, affect your nervous centers of the brain?

    If so, it would validate even more my theory that I have been missing ( and these doctors have been missing ) what has been torturing me for so long...irritated nerves in my spinal area that are sending signals of torture to all my muscles and other parts of my body that they are being damaged or irritated.

    If this turns out to be the case, It would sure call into question why so many of the docs have so easily referred me to the psychiatrict realm.

    If this turns out to be the case, it was only found becuase I kept searching for this when these doctors quit and would not even try to be a little more curious and send me to specialists who would have caught this.
    [This Message was Edited on 04/20/2007]
  7. joeb7th

    joeb7th New Member

    I was prescribed Lyrica...but after checking on this thoroughly on the internet, I decided not to take it.

    The side effects of Lyrica and the fact that so many reported negatively about even it's effectiveness made me decide not to even try this.

    And right now I and my family are so broke I can't afford co-pays for even physical therapy.

    I took the Ativan, yes, it does relax the body.

    I know I am sounding like someone who just won't be happy or go along with any treatment plan but I do not want to be addicted to these benzo's for many valid reasons.

    Lorazepam is a tough, tough call for me because it does relieve some of the tension and anxiety I feel. It does work.

    I stayed on it as long as I did because it worked, even though I fought going on this.

    Now, I am looking for a new "non-narcotic" way to relieve this back and neck pain, irritation and tension and the anxiety it creates.

    I know about heat pads and as soon as I can get an extra $10 or more I will try one of these.

    I left a note the other day to this neurosurgeon asking him exactly what you suggested.

    I asked him which specialist I should see to help me with the pain and stress and tension I have in this area of my middle back shoulders and a little lower. Also, how to relieve the pain without addictive narcotics.

    I appreciate the time people like you and everyone else spends sharing with me what they have learned about all these medical problems.

    You have incredible patience. And you are so tolerant of my desperateness.

    I admit I have expressed very emotional, desperate sounding and over-generalized views at times. Often, the world of doctors against me. I know it isn't this way generally but sometimes it feels this way, especially with these difficult to diagnose ailments like we have on this board.

    Please understand that I am in true pain most of the time.

    I strongly believe that this pain is not a delusion but my perception of my physical reality has been rocked so much in the last year and a half that I hope and pray that my mind isn't just exaggerating these feelings.

    But my life long history in this area is one of reasonable and logical and mentally healthy clear thinking.

    I remember getting a pinched nerve in the back of my neck once. My Gad. It felt like a hot knife back there for days!
    I ran to a doctor ( an old cranky guy ) who said I was being a big baby. I had to question whether I was. Was I feeling this pain more than real men? More than I should? It sure felt like a hot knife to me.

    This doc gave me something called Soma.

    I took this as ordered and it cut the pain 50% but even that last 50% was too much for me. And the Soma gave me an upset stomach.

    I went back and this really irritated old doc said he edidn't want to but he finally wrote a prescription for physical therapy.

    Oh man, what a god send. Those physical therapist got rid of that pinched nerve in one WEEK, with three treatments of hot oils and message and stretching my neck on a rack. But it worked!

    I was so relieved.

    But my point with this story is that I wasn't creating this pain in my mind. When it was gone, so were my daily complaints and depression and anxiety from it.

    This is how I feel now, but in spades. But I trust ( at least hope ) that my pain feelings are real and not dillusional.
  8. 139864

    139864 New Member


    For many years My GP'S have treated me as if I were a hypochondriac !!! It is their ignorance ...not mine !!
    After having been dx'ed with primary biliary cirrhosis ,FM, sjogren's syndrome & pulmonary fibrosis ..all due to my having worked with chemicals for years ..which they wouldn't believe ..until I finally convinced them after doing much research & taking it with me to my appointments .

    Quite recently after having cateract surgery I was in excruciating pain ..I went to see my GP. & told him ,... This was his reply " you have only had it done a couple of weeks ,you have to give it time"
    Two days later ..went to my optician to ask him ..if this was the norm ..he told me that ..It most certainly was NOT ,& that I should go to the hosp. straight away ..I rang the hosp. & they agreed to see me the following day .

    The opthalmologist put in antibiotics & said I should keep my appointment to see the consultant the following week . I did & after futher investigations ( fluorescent dye ) they found fluid at the back of the eye ..Macular edema ..

    I have since had to have steroids ( about eight needles ) injected under aneasetic into the eye & I still need further treatment until I am able to see properly ,& I go to see a Neuro next month

    I hope you find the answer to your problems ,because you cannot rely on the Drs.

    Good Luck
    Brenda UK

    synonyms: Chlorothene; 1,1,1-Trichloroethane; 1,1,1-Trichloroethane (stabilized); Composite Constituent

    Potential symptoms: Irritation of eyes, skin; headache; lassitude; CNS depression (dizziness, drowsiness, unconsciousness); poor equilibrium, ataxia; dry skin, dermatitis; cardiac arrhythmias; hypotension; liver damage. INGES ACUTE: Nausea, vomiting, diarrhea.

    Health Effects: Irritation - Eye, Nose, Throat, Skin---Mild (HE 16) Narcosis (HE 8); Hepatotoxicity (HE3).

    Affected organs: Eyes, skin, CNS, cardiovascular system, liver

    Notes: 1) A few cases of peripheral sensory neuropathy following use of this chemical as a degreasing agent without adequate hand protection have been reported. 2) Although some of this chemical is metabolized to trichloroethanol and trichloroacetic acid, which are excreted in the urine, most is excreted unchanged


    [This Message was Edited on 04/21/2007]
  9. 139864

    139864 New Member

  10. joeb7th

    joeb7th New Member

    Brenda, it is a sad and tough dilemma with doctors in our area of maladies, isn't it.

    You find yourself getting misdiagnosed, cross-diagnosed ( same specialty doctors with different opinions ) and often dismissed or humiliatingly talked down to and worst of all labeled a psychosomatic case.

    Talk about being kicked when you are already down!

    And this scary, unethical and even damaging psyche shunting is sometimes listed in your document records forever with certain type comments by docs in their reports.

    For instance, I finally got my records from a couple of docs and they mention things I never knew like, "patient appeared disheveled in appearance", " recommended psychiatric consult", " patient refuses to take suggested medical prescriptions. "

    All of these comments and especially that last comment are so difficult to defend. If you even question or express even a little hesitation with their medicine choice, they catagorize this as "refusal" which comes across so wrong.

    When these types of hard to defend "difficult or psyche patient" suggestive reports on your records are from physicians not trained in the specialty of psychiatry I have a problem with that. We all should.

    No matter what anyone says to down-play the damage these kind of reports can do...the fact is when other doctors see these types of comments, they too often automatically give this psyche problem view much more instant weight than they should. It takes away from their open-mindedness in your evaluation for your main medical complaints for sure.

    I have seen several docs who after looking at my records, immediately changed their tone and manner and treatment of me when I came to them for help. Especially in the ER setting.

    My last visit to one was ended when the ER doc just instantly got angry the second he finished looking at my past records.

    He angrily told me there was nothing wrong with me and to get dressed and call my wife and have her come and get me. Take these two ativans and get dressed, OKAY? Hands up in a defensive position and a final comment of " I don't even want to waste time talking about it." " You are holding me up from attending to more serious patients."

    This horrible, unethical and medical reputation and even socially reputation damaging treatment is definitely "real" and much more common in the treatment of hard to diagnose immune system diseases like we have I have found.

    And it is scandalous.

    However, as bad, wrong, disturbing and nightmarish as all this bad treatment is, I have had to draw back and get a grip on my feelings and dealings with this type of treatment which I have encountered to a shocking degree.

    As much as I have been hurt by this type of treatment to the point of being committed for a couple of days to a psyche ward for the first time in my 55 years ( this was the pinnacle of my unethical experience ) I still have to come to grips with the fact that more than half the doctors I have seen have been very professional and not personally insulting or dismissing or psych shunting.

    It is not their fault that they can't find out what the main cause of all this is, or the fact that your life has been shattered in so many ways including financial.

    I am trying to cope with this nightmare and at the same time focus on the positive and the good doctors and their efforts.

    It is part of a mental adjustment I needed to make to live with what has happened to me.

    When you are in pain and you haven't improved in a long time, it is very easy to get upset with your doctors.

    I think there is an initial "scared shock" and pain induced impatience, anger and frustration phase that one goes through when they get hit out-of-the-blue with a powerful, hurting and life destroying illness. Especially ones that are often undiagnosed or even denied and downplayed.

    This is all normal to a very strong point and should be tolerated much more than it is, but on my end anyway I found all my valid but puny protests have had no effect against the juggernaut of the established system and was just exhausting me and hurting me and my family even more.

    Now, for their sake and mine, I have to try to look for the good in all of this more than I have.

    I am slowly adjusting without putting as much energy into outrage and anger.

    It's really all I can do. My little hammer on the side of the medical community battleship of mistreatment was just taking too much out of me.

    It is an adjustment at least I have had to make to get through and survive all this.

    I wish it were better for us, but this is just the way it is right now.


  11. 139864

    139864 New Member

    If they weren't so flaming pompous & would just listen & half believe what the patient is telling them ,I would have so much more respect for them ..but they dont .
    I finally had to put a formal complaint against the Gastro after he wrote to my solicitors & told them that PBC was "Autoimmune & was not caused by chemicals .
    The case was dropped immediately ...thats when I put in the complaint !!!
    On my last visit to him he said & I quote ...I only said what what the others ( gastro's ) had said

    I know you did ..I replied ..BUT YOU WROTE THE LETTER !!!

    But now it is a known fact that PBC is an ENVIRONMENTAL DISEASE & not AUTOIMMUNE

    But as you say ..We are sick people & all this doubting what we tell them just adds much more stress to our already heavy burden

    Take good care of yourslf

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