Feeling Betrayed

General
1

I got all my reports today and my head is just blown away!

Let's start with my pre-op Cine and Lumbar MRI's that my NS ordered... My NS told me... that my CSF flow was minimally blocked, yet my report says "severe restriction and attenuation of CSF flow is seen within the posterior foramen magnum, surrounding the cerebellar tonsils." Also, he failed to infom me that the L4-L5 Posterior lateral disc bulges and L5-S1 Posterior lateral disc bulge with bilateral facet degenerative changes and anterior-inferior foraminal narrowing present within the lower lumbar spine.

Now, onto surgery... Procedures performed are 1) Posterior fossa suboccipital bone only decompression. 2) subliminal laminectomy. 3) Resection of fibrous band from the foramen magnum junction. Not the typical posterior fossa decompression, as you can see if you look at the MRI I posted.

As far as the HA doc goes.... In his Review of Symptoms he states that I have...

-no hearing loss- which has been documented since I was 8 that I've been gradually losing it

-normal swallowing- which I get chocked all the time when swallowing spit, liquids, and food

-no palpitations- which I told him I've been having for a couple years now along with tachycardia and I was diagnosed at my pre-admission testing with PVC.

-no shortness of breath- which I have

-normal bowel and bladder function- which I have had constipation and bladder urgency and frequency for as long as I can remember and I even told him that I wanted to be rechecked for tethered cord

-Balance within normal limits with no recent falls- which is so far from the truth I could scream!

-No birthmarks- which I have a big one on my left hip, but he never even asked about birthmarks

-No sleep disturbance- although I told him that I wake up 4 to 5 times a night!

-No heat or cold intolerance- ARE YOU KIDDING ME!

AND MY FAVORITE ONE

-No dizziness, memory loss, numbness or weakness-These aren't 4 of the most common symptoms of Chiari or anything!!!! And I told him that I have all four and they are 4 of the worse ones that I experience!!!

And apparently, my HA "specialist" has diagnosed me with Neuralgia, put it in my files and they found evidence of it on my MRI and noted it, but no one ever told me!!!

I'm disgusted! Now I don't know what to do. I'm so afraid that my NS has done something that is going to make another NS not want to touch me. And I'm also afraid that the notes the HA doc made is going to knock me out of getting my disability. I'm so mad and hurt. I've went from crying to anger and back since I read everything yesterday and of course it brought on a HA and high BP so I've been miserable and now I'm just lost. Any advice would be so welcome.

2

OK stupid question. What is a HA Dr? I would get a second opinion on everything, you cannot be faulted on that. Also I would mention to this dr all the missing symptoms that you are having that he's failing to document. Call him out. Atleast I would

3

Not stupid, I've got use to abbreviating everything. Headache doctor. His abbreviation at the end of his name is D.O. He's suppose to specialize in headache medicine.

4

One thing I bought is one of those plastic divided organizer to keep all my records and results in. How I see it is if for any reason I need to go some reason somewhere and they need to see results I have everything right there for them. I bought my organizer at the dollar store for a buck gotta love that!!

5

I can understand him not asking and just putint down no instead of saying yes, but to flat out lie about the stuff that I told him yes on??? That's what really has my blood boiling. And for my NS to lie about the amount of CSF blockage. And for my HA doc to not tell me about something that he diagnosed me with and was confirmed by with the MRI??

Abby said:

Doctors get so busy, and sometimes just don't ask, they miss a lot. You might want to tell him/her the next time your in the office and give him the updated version of your real conditions and symptoms. I always ask for my reports and any testing results I have done. It is just a good practice for us to do. We seem to fall between the cracks, so we have to keep them informed!

6

I need to do that. Right now I have everything in a file folder, using paper clips to hold my MRI's to one side and my reports to the other. And needless to say... It's extremely unorganized, which drives me CRAZY, and when I need to give something to someone, everything falls apart! Thank you for the advice. I have to go to the dollar store tomorrow anyway, so I'll pick one up. And I have a 3 hole puncher and clear sheets to hold my MRI's and those divider things with tabs. That will make it so much easier.

Christy Mullen said:

One thing I bought is one of those plastic divided organizer to keep all my records and results in. How I see it is if for any reason I need to go some reason somewhere and they need to see results I have everything right there for them. I bought my organizer at the dollar store for a buck gotta love that!!

7

I have no clue. He's suppose to be a HA specialist is all I know. But he also said that the majority of my HA's were from the use of OTC and RX pain relievers not CM. So....

ChiariWife said:

DO.... Doctor of Osteopathy. WTH do they know about Chiari, or any neurologic disorder for that matter??

8

The worst part of it is that I haven't been able to work since Nov. b/c I'm so sick all the time. It had got so bad that I was calling in or leaving early 3 out of 5 days a week. Then I was diagnosed. So I've filled for disability. If they get those records they will deny me again! And I know he knows I've filed b/c they have already requested files from my NS and it is in my file w/ him that his files were requested and the HA has full access to those records. So what do I do now about that? Can I get away with getting a second opinion from a different HA doc, which I was considering anyway b/c he said my HA's were from meds not CM, and not give them his records? Or do I have to go back to him and have him fix them first?

Abby said:

You'd think that he knows better than to put it in writing something that is not the truth! I'd be mad too!
Jessi Linn said:

I can understand him not asking and just putint down no instead of saying yes, but to flat out lie about the stuff that I told him yes on??? That's what really has my blood boiling. And for my NS to lie about the amount of CSF blockage. And for my HA doc to not tell me about something that he diagnosed me with and was confirmed by with the MRI??

Abby said:

Doctors get so busy, and sometimes just don't ask, they miss a lot. You might want to tell him/her the next time your in the office and give him the updated version of your real conditions and symptoms. I always ask for my reports and any testing results I have done. It is just a good practice for us to do. We seem to fall between the cracks, so we have to keep them informed!

9

I agree. I'm just trying to decide now if I should ask my NS for a second opinion or ask my PCP to send me to someone new. Considering I'm thinking about getting a second opinion with a different NS I'm really aiming towards my PCP.

ChiariWife said:

Well my love, I know it can be daunting.... but you desperately need a 2nd opinion!

Jessi Linn said:

I have no clue. He's suppose to be a HA specialist is all I know. But he also said that the majority of my HA's were from the use of OTC and RX pain relievers not CM. So....

ChiariWife said:

DO.... Doctor of Osteopathy. WTH do they know about Chiari, or any neurologic disorder for that matter??

10

OMG !!!!! That is exactly what happened to me.My Dr. Said she denies neak pain she denies back pain she denies dizzy spells and so on denied everything I said was wrong. I asked my husband dose denies mean she has in medical terms.And yes he surgin that did my surgery refuse to hear my cries and complaints to all that got woke up in me.He said. After five mo of hell. Im eleasing her back to primary care Dr seeing no disability of any kind. By this time I was looking for a hoverround because I was losing my ability to walk. When I went to get on disability it only took me three mo to get approved.5 mo after I applied I was reciving benifits. The disability Dr could not belive what I had ben put through. All the evidence lay befor him on my MRI. I hope this hold true for you too. Those records are your proof MRIs dont lie. There can be no denieing that your problems are there.Best of luck to you and you journey. Its a lot freakey that a medical profession could treat people the way some of them do. I heard my x primary care Dr. right befor he walked it my room and said .This looks like a court case to me. I couldnt belive what I was going through. My heart really gose out to you.Take care and God bless

11



Twana said:

OMG !!!!! That is exactly what happened to me.My Dr. Said she denies neak pain she denies back pain she denies dizzy spells and so on denied everything I said was wrong. I asked my husband dose denies mean she has in medical terms.And yes he surgin that did my surgery refuse to hear my cries and complaints to all that got woke up in me.He said. After five mo of hell. Im eleasing her back to primary care Dr seeing no disability of any kind. By this time I was looking for a hoverround because I was losing my ability to walk. When I went to get on disability it only took me three mo to get approved.5 mo after I applied I was reciving benifits. The disability Dr could not belive what I had ben put through. All the evidence lay befor him on my MRI. I hope this hold true for you too. Those records are your proof MRIs dont lie. There can be no denieing that your problems are there.Best of luck to you and you journey. Its a lot freakey that a medical profession could treat people the way some of them do. I heard my x primary care Dr. right befor he walked it my room and said .This looks like a court case to me. I couldnt belive what I was going through. My heart really gose out to you.Take care and God bless

12

Thank you Twana. And I'm sorry to hear all you have been through also. It sounds like you have really had a ROUGH go of it. I'm hoping my new PCP can get the ball rolling in a new direction for me. But I don't go see her until June 18th. My lawyer has already mentioned the possibility of 2 different malpractice cases b/c I had a MRI done in 2009 that clearly showed the CM but my ENT and the radioligist never mentioned it. And the fiasco I went through in Nov., long story short, they misdiagnosed me, then tried to cover their butts and ended up ruining every vein I have in both my arms. When I had surgery, they had to put everything in my chest, feet and legs. I hope you are recovering well.

Twana said:

OMG !!!!! That is exactly what happened to me.My Dr. Said she denies neak pain she denies back pain she denies dizzy spells and so on denied everything I said was wrong. I asked my husband dose denies mean she has in medical terms.And yes he surgin that did my surgery refuse to hear my cries and complaints to all that got woke up in me.He said. After five mo of hell. Im eleasing her back to primary care Dr seeing no disability of any kind. By this time I was looking for a hoverround because I was losing my ability to walk. When I went to get on disability it only took me three mo to get approved.5 mo after I applied I was reciving benifits. The disability Dr could not belive what I had ben put through. All the evidence lay befor him on my MRI. I hope this hold true for you too. Those records are your proof MRIs dont lie. There can be no denieing that your problems are there.Best of luck to you and you journey. Its a lot freakey that a medical profession could treat people the way some of them do. I heard my x primary care Dr. right befor he walked it my room and said .This looks like a court case to me. I couldnt belive what I was going through. My heart really gose out to you.Take care and God bless

13

I know the feeling my friend! I have deceived and betrayed by my doctors as well.. Infact the one that did my surgery, told me my surgery went just fine, when infact it had not.. He ran into several complications which kept him from performing the surgery as he normally would... I did not find this out until after the fact, when I was in and out of the hospital for uncontrollable pain and CSF leak which resulted in bacterial meningitis... I've also had doctors tell me one thing and recommend something and then tell my PCP something totally opposite...

I'm sorry this is happening to you, and believe it or not, it happens more times than not especially when it comes to us Chiari folks...

I would definitely get a second and even a third opinion before deciding on a treating doctor... That's one mistake I made, I didn't shop around (lol) I just took this doctors word as gold and went with it...

Good Luck to you and Take Care

Jen