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You won't believe the phone call I just got!


Guest Julia59
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Guest Julia59

Oh my god---you just won't believe it!

You just won't...........................................

My neurologist called to tell my I have manifested my pain to a point of being out of control---that it is in my mind. Or that I have pain caused by possible fibromyalgia----and I left it go to long cuasing mye to be too wrapped up in my pain----or something to that effect.

He told me the surgery I had on my neck should have not been done or was not necessary. Didn't he notice the repots showing the compression on the spinal cord with the the two dents in it?

I'm too mad to finish this---I can't think............

Julie :0)

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Julie,

Don't you have EDS? or am I mistaken. If so, to experience chronic pain is a common feature with EDS and it is not in your head. Some docs don't truely know how to help someone with chronic pain and get frustrated and resort to what I consider blaming the patient routine. If possible find yourself a good pain managment doc who understands the condition that you have and can at least consider different methods of treatment such as PT and massage therapy, tens, chiro or accupunture or other methods that both of you can agree on. At the very least the physician should provide some understanding which is a big help in itself in my book and goes a long way.

Best wishes and try not to let this doc upset you too much, it's only his opinion and you know what they say about opinions.

take care

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Guest Julia59

My diagnosis per Dr. Grubb, Dr. Paolo Bolognese--neurosurgeon, and Dr. Heffez the neurosurgeon who did my neck surgery is: POTS, EDS, cervical spine stenosis, mild chiari malformation----or-volume of posterior fossa is too small, retroflex odontoid-aka(the odontoid bone at the top of my spine in my cranium is misshapen and tilted with pannus growth causing defacement of the subarchnoid space), cervical-cranial instability, IBS secondary to the POTS and or upper spine issues.

I'm sorry to repeat all of my diagnosis again, but I have a lot going on, and I find it common sense that my neurological symptoms are not purely psychological.

I'm so tired----and now my SSDI will be denied because of this bucket of bolts.

I can't sit up straight anymore, climb steps, or walk around the block without feeling like I was hit square in the middle of my back with a giant log, or a 300 pound quarterback----and all the wind knocked out fo me. This is more real then I want it to be. If all I was out for was SSDI, then I would say this neurologist is right---i'm wacked---all this stuff is imagined, then SSDI would approve me right away as I would definate qualify at that point.

But ---this is not true, so therefore i'll be denied as they are not paying attention to all the disabling symptoms from my diagnosis above.

He said I had surgery---just to have surgery. WEll, i'll be---------that was so fun, I think i'll do it again. I like being scared of the anesthesia and the whole mess---just love it----like a ride at Ceder point----what fun.

I feel that I should report this Doc---------- :angry:

I asked him if he thought he was 100% right, and he said yes. So I told him----so now I can have my life back, I can run, jump on trampolines, dance, go and have a party of a time celebrating that this was only a bad dream, and **** down some margarita's. He said yup. I asked him---"will you put that in writing", and he said he did. That's not what I read...........

He told me I was not letting him talk, that I was interrupting him. I said no, i'm not letting you give me a psyc diagnosis. After the post I read about corina, I was primed for the conversation, how convienant it happen to come just after my reply to the post. This man has just opened a can of worms for himself. i'm not letting this go.

Julie :0)

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Hi Julia,

It just infuriates me when I read posts such as yours. I think most of these health care 'professionals' ( and I use that term loosely), are the ones who need psychiatric care! I agree with Sally, try not to let this Dr. upset you too much, as difficult as that may be. There are caring, understanding Dr.'s out there. Heck with him!!! Manifested your pain my butt!! Who do they think they are. I wish you much luck in finding a new neurologist - one that actually understands what you're going through.

Take care, Patti

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Guest Julia59

Thanks for the support and understanding................ :)

You know that crazy thing----my concern is more about the other neuro symptoms. Yes, the pain is an issue----but my leg weakness, numbness, arm numbness-----------ugggggg---that is a big concern, not to mention the cracking, grinding, and the constant low base humming sound I have inside my lower head. Oh---now that just proves i'm crazy-----------now i'm hearing sounds..... B):angry:

Julie :0)

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Hi Julie,

about the EDS.....did you know that over 50% of EDSers who have chronic pain are treated with narcotics just to function? That should tell this doctor something. EDS causes chronic painful joints that feel non-discriptive for most people who suffer from it and severity can be debiltating. It involves multiple joints/spine/blood pressure issues/circulatory issues/eyes/ etc and chronic pain that also feels like its within the bone that is burning/stinging and or aching included and bursting outwards from within the bones/joints themselves. . This type pain can usually not be consoled with normal meds and is very hard to treat as is the chronic feature of this type pain.

The bone pain itself from EDS I have not understood the exact whys but I think it makes sense because the bone matrix itself consists of collagen which is defective. I've been trying to read about this very thing and it is very confusing. Our youngest had some much damage to her bones/joints (bone marrow edema - bone brusing) due to EDS which is also a concern for EDSers and can cause excessive pain in itself without EDS on a normal person, usually from a severe injury. when our docs saw her mri's of her joints they were astonished and thought she might have bone cancer or something.

We found in our situation that a good pain management and genetics doc understood more on this feature of EDS rather than a neuro doc. (our situation only) might be different for some one else though. The genetics doc explained more and gave us more insight on what to expect and how to deal with it. The PTs help with mobility issues. The chronic pain from EDS will normally not ever go away unfortunetly and is as you well know a very hard pill to swallow. If I can help with EDS information, and if you have questions please feel free to email. Surgery and recovery from it can be alot more difficult for you than most normal people

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Take legal action against this muppet. NOW. He must be stopped. Not only has he ignored the diagnoses of SEVERAL other doctors, he has committed NEGLIGENCE and MISCONDUCT by the sounds of things. Don't stand for it.

I am pursuing a complaint against a Doctor I encountered in the UK before Christmas with a similar attitude- and even he wasn't as rude as what you've encountered.

This is a disgrace. If you were in the UK I would tell you to go straight to the GMC (General Medical Council) to file for him to be struck off. But I don't know what equivalent procedures there are in the states. Who does this guy think he is?!?!?!

Like I said in my post on the other thread- the head of the British Mediecal Association told me that doctors like to blame things on psych stuff cos it conceals their lack of knowledge, and provokes a patient into getting distressed, upset and often irrational- which just makes the Doctors think they're right and you're wrong about yourself.

Don't give in to it- know that we are all right behind you. Treat this Doctor with the contempt he deserves. I know it's hard- I've been left in floods of tears by over a decade's worth of inept doctors, but as Eleanor Roosevelt said- "People can only upset us with our permission." Don't give this jack *** YOUR permission. Because you deserve better.

If he is incompetent, it's his problem, not yours. I'd have thought the eminent autonomic specialists you've seen would be difficult to argue with or refute. Maybe this guy was an escaped psych patient himself?

I still wonder if the neuro I saw before Christmas had been let out of some funny farm...he smiled at me, and said "I want you to perform for me...I have a camera- can you stand up and faint now please?" This was the day after my plaster cast was removed from breaking my foot (by fainting on it!)

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Julie,

I too am appalled (sp?)... I can hardly believe this is happening to you... but I do believe it. I wonder if the other doctors you have mentioned, who are experts BTW would be willing to help you know how to proceed 1) to keep this off your record 2) to take appropriate action??? Just a thought.

I'm so sorry you have to be facing all this. I'm glad you have support here at the forum. I'm really really sad for you (when I get over being angry for you)

~Roselover

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Julia,

I suggest you call the local medical society office. The hospital will give you the number. Then call and find out who is the president. Call him, might have to leave a message. When you speak to him ask if you can meet with him, if not tell him in detail what happenned. Leave out any of the extraneous # of years you have been told it was psychological, whats important now is what happenned today!!!!!!!! Focus on that. I think that filing a complaint with just the facts of this will help you much sooner and easier. As your doctor for a copy of his notes from this week, to read. The person you will talk to will help with a resolution. You can do this. You are articulate. If you feel better writting it. Send him a fax with your complaint etc, and do it that way. I have to check something and will e-mail you,if it works out. Good luck......I have faith.........Miriam

We can fly persephone over and have her visit this man!!!!!!!!! :angry:

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Guest Julia59

Thanks agian everyone for you never ending support---I can't begin to tell you how much it means.

Miriam, I have written a 3 1/2 page letter the the President of The Medical College of Ohio, whihc is also where Dr. Grubb's office is. I talked with both Dr. Grubb's office today, and My nurse at The Chiari Institute about the whole story. Dr. Bolognese is out of town until June 5th. Dr. Grubb's nurse listened to me for a half hour---she was so nice. If they only knew how much I needed them to be nice---and they were......... B)

Someone from one of my doctors offices told me I should write a letter of complaint to the President of MCO, and I won't say who because, I don't want it in writing, as it could turn on her. Anyway, I was happy to have the support of my other doctors offices, and I already know the doctors themselves support me, it was just an added bonus to talk to very nice supportive people today. :):angry:

Persephone, Roselover---as you can see, i'm with you---it looks like we are all on the same page.

Sally, all this EDS stuff---oh my gosh--------it's just got me so intrigued, but worried at the same time. I have been reading tons of information on EDs lately, as my body just feels like it's melting---nothing feels stable. My neck, back, shoulders, and hips have the worst of it. My wrists, knees and ankes are starting to be affected---to a lesser degree. You are so nince to offer you help, and feel free to e-mail any information you have on EDS---julia59@buckeye-express.com

Actually i'm supposed to be involved in a study at NIH sometime in the future, I was contacted by the Doctor running it, be we don't know when my slot is. I'll have to e-amil her to see if she has any news. The study is in Baltimore, MD.

Patti---thank's for wishing me luck on my search for a new neurologist.

Morgan---thank you for showing your support as well.

You guys have lessoned the pain of this whole thing for me.

If anyone wants me to send them a copy of my letter to the president of MCO, i'll e-mail to you, just let me know.

Julie :0)

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Guest Julia59

Can you believe i'm still on this computer. I have been on here on and off all day---boy am I going to pay for this.

Thank you Steph---how cool is that---to write a letter and get a response like that. I'll keep that in mind, and send this guy a copy also---can't hurt.

I need to go put my body in a different position now---I feel like i'm going to break in half.

Julie :0)

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It would definately be interesting to read yourletter. Ans always keep your sources secret. Remember deepthroat. I hope you feel incredibly proud of how much you were able to accomplish today from sewer to first?second floor??????

Get some rest. You did good. Miriam :)B):angry:

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Julia,

I didn't read everything that's written here but I wanted you to know that I am SOOOOOO MAD. This shouldn't happen to you. I'm sorry, I can't come with reasons right now, because I'm tooo mad. Not that it will help, but I am! I will think of you and send good thoughts your way. I hope you have the strength to do something against this!!! If not (at this moment) I'll send you lots of strength, hope you can catch it!!!

Take care Julia,

Corina

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Guest Julia59

Miriam,

I can send you a copy of the letter, but i'll need your to send me you reg e-mail address so I can send it----because it will be an attachment from micro-soft word.

I can't paste it onto potplace---because I have names mentioned.

If anyone else wants to read it---I will be happy to e-mail it you you as well. :P

The personal message area of this forum won't send attachments.

Never mind---I can paste it on PM----dingy me.......... :P

Julie :0)

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Guest Julia59

Steph, I found the mission statement and included it in the letter.

Here it is:

MCO Mission Statement:

--------------------------------------------------------------------------------

The mission of the Medical College of Ohio is to improve the human condition. We do this through the creation of new knowledge, the dissemination of knowledge, and the application of knowledge and wisdom to increase the length and quality of human lives.

MCO Vision Statement:

--------------------------------------------------------------------------------

For MCO to become a recognized leader in health care education.

It's all kind of crazy isn't it?

Julie :0)

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Julia,

I'm so sorry you've had this response. I understand how devastating it can be, not to mention how much energy it drains you when you have to deal with C*(P like this. You need your energy for other things and yet, unfortunately, you HAVE to take a stand and deal with this.

You go girl!!! I hope a letter will be an eye opener and something that makes the medical community open their eyes and at least try to be helpful instead of being so destructive.

I'm sending caring thoughts and positive energy your way!!

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Guest Julia59

Persephone,

I paste a copy of the letter by PM.

I'm so embarrassed------There was so much to the address---5 lines---I forgot the city and state-----------my husband caught it and wrote it on the envelope, but it's to the president-- it looks unprofessional to have most of the address in print, and the other part in handwriting-------uggg

Too late---it's gone----- via certified mail----------------- :o:(:)

Julie :0)

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