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NS update from Chicago
Well....it was good and bad! Great because she is knowledgeable in Chiari...not so great because she does not believe my symptoms can be so bad with the Chiari as small as mine is she says. Her exact words..."anyone can look up symptoms on chiari on the internet and come in here and exaggerate them to me." I almost fell over from disbelief. HOW and WHY would someone make a laundry list of symptoms like mine or anyone for that matter and fake it? I just don't get it!!!!
I listened to what she had to say...not necessarily agreeing with her since she does not think my symptoms are that severe because of my small herniation. But I still listened! I took it all in....I cried like a baby afterwards in my car....then I felt sorry for myself....then I drove myself the 3 hours home.....took my migraine pills and went to sleep.
I never in a million years, would have thought that a NS that specializes and has a high interest in Chiari would actually say something like this to a patient. I was stunned! To say the least.
Her recommendation...."go on anti-depressants for 3 months see if your symptoms don't go away and maybe you will calm down because honestly your chiari is not that bad and then see me again. Maybe then we'll see what we can and if there is anything we can do for you."
I almost died again......I have never felt like a piece of garbage before until her. I expected a non specializing Chiari doctor to treat a patient like that but not someone who specializes in it. I guess it is true what people say about NS.....they are arrogant and egotistical and just plain rude and blunt.
So back to the neurologist I go on Tuesday! I honestly feel like giving up here. I am so tired of being told that my symptoms can't possibly be that bad. Why would I make them up? Why would I lie about how I feel? Why? Why? Why? I don't get it!
Has anyone else experienced this type of treatment? Do the symptoms increase with the herniation? Does it matter how big or small it is for the symptoms to be there? I just don't understand anymore!
Well, I'm done venting! Sorry for the ranting!
Hope everyone is having as much of a pain-free day as they can!
Sheila
I listened to what she had to say...not necessarily agreeing with her since she does not think my symptoms are that severe because of my small herniation. But I still listened! I took it all in....I cried like a baby afterwards in my car....then I felt sorry for myself....then I drove myself the 3 hours home.....took my migraine pills and went to sleep.
I never in a million years, would have thought that a NS that specializes and has a high interest in Chiari would actually say something like this to a patient. I was stunned! To say the least.
Her recommendation...."go on anti-depressants for 3 months see if your symptoms don't go away and maybe you will calm down because honestly your chiari is not that bad and then see me again. Maybe then we'll see what we can and if there is anything we can do for you."
I almost died again......I have never felt like a piece of garbage before until her. I expected a non specializing Chiari doctor to treat a patient like that but not someone who specializes in it. I guess it is true what people say about NS.....they are arrogant and egotistical and just plain rude and blunt.
So back to the neurologist I go on Tuesday! I honestly feel like giving up here. I am so tired of being told that my symptoms can't possibly be that bad. Why would I make them up? Why would I lie about how I feel? Why? Why? Why? I don't get it!
Has anyone else experienced this type of treatment? Do the symptoms increase with the herniation? Does it matter how big or small it is for the symptoms to be there? I just don't understand anymore!
Well, I'm done venting! Sorry for the ranting!
Hope everyone is having as much of a pain-free day as they can!
Sheila
When I went to see the NS at Albany Medical Center in Albany, NY (Dr. German - doesn't know diddly squat about CM) - He said things I agreed with like "Surgery is a life threatening treatment, everything else should be tried first." This made me admire him and I SO wanted to respect him..... then he blew it by saying "Chiari (he pronounced it wrong) doesn't cause vertigo, the tingling in your feet is probably from the Topamax you take, your bladder issues are because you have two children, the neck pain is most likely stress, and you probably have the headache because you know you have CM and you have talked yourself into it." Oh - and he even said "You aren't even disabled yet!"
My NL has since proven that I have neuropathy in my feet (and ruled out numerous other possible causes), the vertigo only happens when I lay down and the back of my head feels like it's filling up like a water balloon, the bladder issues started about 3-4 months before the CM diagnosis, the neck pain and the headache were the reason I went for the MRI in the first place! This man wouldn't listen to a word I had to say though and I left his office and cried in my car just like you did. Then I got pissed off and vented and ranted for days. I've finally decided that the arrogant ******* doesn't deserve my energy and I'll find someone else.... but first I'll work with my NL to try to control my symptoms because the only thing I agreed with was that I want surgery only if everything else fails for me.
I haven't been in this Chiari circle for long, but I've had the arrogant NS experience too - and I'm sure I'll have more... next time though, I won't take it like I did last time. Next time, I go straight to TCI or UCLA (depending on what state I'm in at the time).
Raise your middle finger at this biotch and write her off as someone who needs a good a good backside whooping. Her parents probably never hugged her.
Damn, Now I think I vented LOL.
My NL has since proven that I have neuropathy in my feet (and ruled out numerous other possible causes), the vertigo only happens when I lay down and the back of my head feels like it's filling up like a water balloon, the bladder issues started about 3-4 months before the CM diagnosis, the neck pain and the headache were the reason I went for the MRI in the first place! This man wouldn't listen to a word I had to say though and I left his office and cried in my car just like you did. Then I got pissed off and vented and ranted for days. I've finally decided that the arrogant ******* doesn't deserve my energy and I'll find someone else.... but first I'll work with my NL to try to control my symptoms because the only thing I agreed with was that I want surgery only if everything else fails for me.
I haven't been in this Chiari circle for long, but I've had the arrogant NS experience too - and I'm sure I'll have more... next time though, I won't take it like I did last time. Next time, I go straight to TCI or UCLA (depending on what state I'm in at the time).
Raise your middle finger at this biotch and write her off as someone who needs a good a good backside whooping. Her parents probably never hugged her.
Damn, Now I think I vented LOL.
Re:your recent visit to a NS in Chicago my daughter & I saw a Dr Roseau. at the neurology institute, we found her rude, abrassive, and non-interested in helping. We also found 2 NS that were sympathetic, caring and interested in trying to help my daughter regain control of her life. DR Hefez in Milwaukee is a good choice (in my opinon) good luck with the visit there!
I am so sorry that things went so poorly for you! My herniation is 5.2 mm and my ns said that surgery is up to me, but he believes it will help you. My brother-in-law who is a surgeon said that many people have this problem and live with it, because you wouldn't know it's there unless you look. Well, I looked because I had symptoms, not the other way around.
My NS suggested accupuncture with a rehab doctor, which I will try before surgery. I am not sure that I want to take the risks just yet. Even the neuro exams that nl and ns do don't reveal everything, especially if you go in on a "good day". There will be someone who will take you seriously -- especially at 6mm herniation with crowding! You do have a real health problem I am so sorry you are not receiving adequate support. Hopefully that will come from Dr. H. I wonder what that doctor DOES see as a serious enough problem. I also wonder if that doc realizes how much depression she CAUSES by not listening and making her patients feel bad!
Hang in there! I will be praying for ya :) You might also consider looking at your symptoms separately, as I am now -- I will be doing a sleep study, returning to my pulmonologist and seeing the accupuncturist. I figure if I can't fix the CM without surgery and I don't want surgery, I should try to treat symptoms. Just because the docs say they aren't necessarily related doesn't mean we can't try to take that approach, right??? Many times they say, "no" because they don't "know". Take care!
My NS suggested accupuncture with a rehab doctor, which I will try before surgery. I am not sure that I want to take the risks just yet. Even the neuro exams that nl and ns do don't reveal everything, especially if you go in on a "good day". There will be someone who will take you seriously -- especially at 6mm herniation with crowding! You do have a real health problem I am so sorry you are not receiving adequate support. Hopefully that will come from Dr. H. I wonder what that doctor DOES see as a serious enough problem. I also wonder if that doc realizes how much depression she CAUSES by not listening and making her patients feel bad!
Hang in there! I will be praying for ya :) You might also consider looking at your symptoms separately, as I am now -- I will be doing a sleep study, returning to my pulmonologist and seeing the accupuncturist. I figure if I can't fix the CM without surgery and I don't want surgery, I should try to treat symptoms. Just because the docs say they aren't necessarily related doesn't mean we can't try to take that approach, right??? Many times they say, "no" because they don't "know". Take care!
You are right...it does stand for Dr. Heffez! I can't wait to go see him.....I feel the last two doctors did not take me very seriously....They went on my symptoms, did not take my scans into much consideration, and did not do any office exams....Just sat in their chair and rambled away.
I can't wait to have a full thorough exam and to have some answers!
Sheila
I can't wait to have a full thorough exam and to have some answers!
Sheila
i hope dr. h stands for dr. heffez. you will love him....but if he doesn't feel the surgery will help you, he won't do it. he is extremely thorough in his examination, as you will soon see. hang in there, shelia.....
good luck on wed!
elizabeth
good luck on wed!
elizabeth
COMMUNITY LEADER
....I was to 3 different NS that knew chiari...the 3rd one was at TCI where I had my surgery.
5 mm is the minimal size of herniation for chiari so at 6mm I have no idea what this drs issues were except that he/she is not a chiari specalist.
I know u want to feel better and surgery is not a guarantee that u will, it is a treatment to slow the progression and hopefully lose a few of the symptoms.
I pray u get to a true chiari specialist that can offer u some kind of treatments.
"selma"
5 mm is the minimal size of herniation for chiari so at 6mm I have no idea what this drs issues were except that he/she is not a chiari specalist.
I know u want to feel better and surgery is not a guarantee that u will, it is a treatment to slow the progression and hopefully lose a few of the symptoms.
I pray u get to a true chiari specialist that can offer u some kind of treatments.
"selma"
Thanks for the encouraging words! Sometimes I wonder.. why fight for me if no one else is willing to fight to help me get better!
My herniation is 6mm I was told from my neurologist....she measured it herself and also said that I have significant crowding at the base. But it does not appear to her that I have any blockages because my spinal pressure was at 22 and if there was a blockage it would be alot lower.
I'm still going to see Dr. H on Wednesday! He has ordered a new MRI and also ordered a laundry list of bloodwork to be drawn. So maybe the third time will be the charm here and he'll listen and be willing to help.
My husband is convinced I just want to have brain surgery. I told him he is crazy too! All I want is for someone to help me get modified and feel normal on some days. I'm not even asking for everyday! Just for some! Is that too much to ask for?!?!?!
Sorry, there I go ranting again.
Thanks again for the encouraging words. I'm going to read Dr. Oro's poem again!
Sheila
My herniation is 6mm I was told from my neurologist....she measured it herself and also said that I have significant crowding at the base. But it does not appear to her that I have any blockages because my spinal pressure was at 22 and if there was a blockage it would be alot lower.
I'm still going to see Dr. H on Wednesday! He has ordered a new MRI and also ordered a laundry list of bloodwork to be drawn. So maybe the third time will be the charm here and he'll listen and be willing to help.
My husband is convinced I just want to have brain surgery. I told him he is crazy too! All I want is for someone to help me get modified and feel normal on some days. I'm not even asking for everyday! Just for some! Is that too much to ask for?!?!?!
Sorry, there I go ranting again.
Thanks again for the encouraging words. I'm going to read Dr. Oro's poem again!
Sheila
COMMUNITY LEADER
Hi Sheila,
Many of us have had these disappointing dr visits...more so when the dr is not a chiari specialist.....
I am sorry, but please refresh my memory...what size herniation do u have?
And size is not the main criteria for chairi to cause issues...overcrowding and CSF blockage is.
Re-read Dr Oror's poem.....it will help u get that fighting spirit back....keep pushing,...u know ur body and what is going on...keep going until u get a dr that is well informed and listens.
Hang in there : )
"selma"
Many of us have had these disappointing dr visits...more so when the dr is not a chiari specialist.....
I am sorry, but please refresh my memory...what size herniation do u have?
And size is not the main criteria for chairi to cause issues...overcrowding and CSF blockage is.
Re-read Dr Oror's poem.....it will help u get that fighting spirit back....keep pushing,...u know ur body and what is going on...keep going until u get a dr that is well informed and listens.
Hang in there : )
"selma"
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