Aa
Am I just crazy?
. I've had a really crappy day. This was my first visit with a neurologist. He said I had too many complaints for this to be real. He said it had to be psychological and gave me, from what I understand, some pretty strong mood altering drugs. One I'm suppose to put under my tongue and let dissolve for 10 min before swallowing! He said that my real problem was that my unemployment has run out, that I'm really angry with my 20 yr old for getting pregnant in her second yr of college and because I was molested in my youth!!!???!!!
HOLY WOW!! Am I stressed? YES Am I depressed? YES Do I have a lot on my plate right now? YES but that does not explain why I'm having trouble with simple concepts like flushing the toilet or reading. I've had to look up the spelling of almost every word I've typed here. I've worked in finance all my life and now I mix up my numbers all the time and have trouble with simple addition. I'm experiencing severe pressure in my head and lower spine. I'm shaking, jerking and have now started waking myself up with my whole body contracting violently. My face, neck and shoulder muscles are always contracted. He says this is all stress related. He also said that the reason I'm waking up with my hands hurting so badly and drawn closed so that they have to be massaged open is really do to the fact that I'm hyperventilating and told me to take deep breaths when that happens to relieve the problem. I asked him, IN MY SLEEP??? he said yes that I must always be stressed. He totally overlooked the muscle weakness, that I've started falling for no reason and the fact that I no longer feel pain to my skin. I pinched my foot and hand so hard in front of him that I broke the skin in one place. He said he didn't know why that would be. He said the extreme fatigue and either sleeping all the time or none at all was all due to the depression.
I could go on and on but I won't put you through it. I'm just venting and wondering if I really am crazy. I don't even think he looked at my MRI films. His nurse said they were having trouble connecting to the image center because of the storm. He said he thought my low lying tonsilar ectopia was not severe enough to be causing my problems. I think he just read that from the referral and didn't even look. I posted two pictures from my MRI. Pls look at them and tell me what you think. Does it look like what you've seen before? Does it look like this could possibly be part of my problem or am I just crazy? Ha either way I think the answer to that question will be YES!!
Thanks for listening!! DeAnna
HOLY WOW!! Am I stressed? YES Am I depressed? YES Do I have a lot on my plate right now? YES but that does not explain why I'm having trouble with simple concepts like flushing the toilet or reading. I've had to look up the spelling of almost every word I've typed here. I've worked in finance all my life and now I mix up my numbers all the time and have trouble with simple addition. I'm experiencing severe pressure in my head and lower spine. I'm shaking, jerking and have now started waking myself up with my whole body contracting violently. My face, neck and shoulder muscles are always contracted. He says this is all stress related. He also said that the reason I'm waking up with my hands hurting so badly and drawn closed so that they have to be massaged open is really do to the fact that I'm hyperventilating and told me to take deep breaths when that happens to relieve the problem. I asked him, IN MY SLEEP??? he said yes that I must always be stressed. He totally overlooked the muscle weakness, that I've started falling for no reason and the fact that I no longer feel pain to my skin. I pinched my foot and hand so hard in front of him that I broke the skin in one place. He said he didn't know why that would be. He said the extreme fatigue and either sleeping all the time or none at all was all due to the depression.
I could go on and on but I won't put you through it. I'm just venting and wondering if I really am crazy. I don't even think he looked at my MRI films. His nurse said they were having trouble connecting to the image center because of the storm. He said he thought my low lying tonsilar ectopia was not severe enough to be causing my problems. I think he just read that from the referral and didn't even look. I posted two pictures from my MRI. Pls look at them and tell me what you think. Does it look like what you've seen before? Does it look like this could possibly be part of my problem or am I just crazy? Ha either way I think the answer to that question will be YES!!
Thanks for listening!! DeAnna
Good luck with that... you will find LOTS of people are treated that way! The number one thing that you HAVE to do is find a neurosurgeon that really specializes in CHIARI and that will listen. That is not always an easy or quick task. You need someone to look at your MRI and know what they are seeing! It should mean a CINE MRI to see how the spinal fluid is flowing! Is not at all an easy path to find out where the symptoms are coming from but you need the process to make sure you are treating the right thing! If you take some time and read the postings here you can find so many that are or have been completely frustrated and don't know where to turn for help. On average I think it is something like 5 years it takes someone with Chiari just to get diagnosed, from there you have to find someone that can figure out if they can help you. You need someone that knows because you don't want to go through a painful expensive surgery that can cause complications unless there really is a chance it can help! Chiari sure isn't easy!
They have me going to a psychiatrists now I told her about chiari and she is just looking for something in my past that is making me feel this way.
COMMUNITY LEADER
exactly ...and that is y we do not just have a reg list of NS's on here..we wanted a list that were from the members......
I understand that it's not a referral but hearing that others have had good experiences with them is a huge step in the right direction!!
COMMUNITY LEADER
yes our list is compiled by the members adding their own Drs name, only after they felt they liked them....
there r many lists on line, but they r not always current, and we do try to update ours here as well, in fact I did just redo the list last week.
I rely on the members here to let me know if a Dr is no longer on the good side, or has retired etc.....
The list is there for u to use as a research tool, so u can find the dr right for u.It is not meant as a referral.
"selma"
Thank you and did I read that correctly that all the Drs on the list have been recommented by others that have had good results with them?
:) I just figured out how to post my images for you, so if you look in my profile you will see three from before and one from now! I noticed you are born in 71 also! Enjoy the pics, my kids will be proud of me for figuring it out on my own! LOL
COMMUNITY LEADER
Hi...ur story sounds all too familiar....sad but true, too many of us have had something like this happen.
As most of the others have mentioned u need a true chiari specialist, I will add the link to our thread.Keep in mind this is not a referral, just a means to help u start ur research to find the dr that is right for u.- http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
"selma"
Thank you, I do have my MRI and I intended to take it but my memory being what it is...
I'll look for the info about where I can send it to. That sounds promising. Any info is welcome!
I'll look for the info about where I can send it to. That sounds promising. Any info is welcome!
So sorry that your Doctor was not able to help you! Next step could be just getting out the phone book and looking for Neurologists and Neurosurgeons! Call offices and try to find someone that does A LOT of Chiari cases! Do you have your MRI and the report that goes with it? I found getting copies of my records helped a great deal. I took my information and once people had seen the report I was able to go elsewhere! I know on this board that I have seen that there are places you can even send your MRI's to be looked at? Maybe that is an option too. They do post some lists on this board of people that specialize in Chiari maybe those can help. I even went out of state to meet with one Doctor, it was a long process but it can be done :) It sounds like you were really backed into a corner in that office, which has happened to lots of Chiarians. So sorry that happened to you!
trdofbeingtrd Thank you and I haven't started the meds and had decided not to until I talk to my Dr Friday.
zygy2 I would love to see your old MRI films for comparison. My Dr was the one that sent me to this guy. She said that she had worked with him and that he would listen and be someone that would work hard to help. WRONG
jenshead I agree with everything you said. I didn't walk in thinking any of those subjects were going to come up but he kept asking those kind of questions and leading the conversation that way. He asked if I smoked and I said yes but I only had until 7/27 to stop. He asked why and I told him that that was my daughter's due date. He asked her age and started making snide comments about her age and that she wasn't married. He asked about my childhood and my current situation. I did cry a little at the end but that was because it was obvious that that man didn't believe me and he wasn't going to help. I agree that it seems to be a vicious cycle. The worse I feel the more upset I am and the more upset I am the worse I feel but I can step outside my box and see the big picture. My body is telling me that there is really something wrong.
zygy2 I would love to see your old MRI films for comparison. My Dr was the one that sent me to this guy. She said that she had worked with him and that he would listen and be someone that would work hard to help. WRONG
jenshead I agree with everything you said. I didn't walk in thinking any of those subjects were going to come up but he kept asking those kind of questions and leading the conversation that way. He asked if I smoked and I said yes but I only had until 7/27 to stop. He asked why and I told him that that was my daughter's due date. He asked her age and started making snide comments about her age and that she wasn't married. He asked about my childhood and my current situation. I did cry a little at the end but that was because it was obvious that that man didn't believe me and he wasn't going to help. I agree that it seems to be a vicious cycle. The worse I feel the more upset I am and the more upset I am the worse I feel but I can step outside my box and see the big picture. My body is telling me that there is really something wrong.
I (thankfully) haven't run into this problem lately, but did when I was younger. I was having trouble breathing due to allergies and the ER doctors would tell me I was having a panic attack while I was sitting there perfectly calm. You know why they said panic attacks though? Because I had a history of a little anxiety.
So now I consciously avoid anything that could lead to that diagnosis. Don't tell them about any stressors in your life except your physical illness. Don't freak out in front of them (I know how hard that is). Only your physical problems. Also, I do this but you should use your own judgment: on my first visit, I only mention the big symptoms. If you throw 50 symptoms at a doctor at once, in my experience, they miss half of them and think you're crazy.
So I agree with trdofbeingtrd, get a different doctor but approach with caution.
On another note - I'm not at all saying I agree with this doctor, but if you are stressed for reasons unrelated to your illness, it can easily make all of your symptoms worse. I think all of us can benefit from some stress relieving activities!!
So now I consciously avoid anything that could lead to that diagnosis. Don't tell them about any stressors in your life except your physical illness. Don't freak out in front of them (I know how hard that is). Only your physical problems. Also, I do this but you should use your own judgment: on my first visit, I only mention the big symptoms. If you throw 50 symptoms at a doctor at once, in my experience, they miss half of them and think you're crazy.
So I agree with trdofbeingtrd, get a different doctor but approach with caution.
On another note - I'm not at all saying I agree with this doctor, but if you are stressed for reasons unrelated to your illness, it can easily make all of your symptoms worse. I think all of us can benefit from some stress relieving activities!!
I felt crazy too... it is frustrating and makes you so angry! The Chiari process is a tricky one and no matter how many times people say to find the right doctor that is not always an easy or fast process. It took me a long time even after the MRI showed Chiari because the neurologist wasn't listening! I did not have the experience to know how to get myself to a good neurosurgeon without the help of the neurologist... I must say I ran around in circles for a bit but I finally got to a doctor that helped! Keep motivated to solve the problem! Keep calling anyone that you can for help, I made the mistake of trying to do it myself and it took me a lot longer than needed. Ask you PCP for help, they are not specialists but they know who is out there in your area and they should have the ability to send you directly to a neurosurgeon based on your MRI findings! Find someone excited about having a Chiari case, someone interested in your issues, someone that just oozes information about Chiari! The neurosurgeon I have now even updates me on interesting studies! It is more than just putting a hole in someones head to him! You need to find someone like that! I was dismissed after surgery with no follow up MRI and told that if I came back I would only get pain meds, which sent me on another hunt for help, this time I asked for help from my PCP because I did not know where to go and they were so helpful. I have a great neurosurgeon and he did a follow up MRI and found I have a pseudomeningocele and will require another surgery! I KNEW something was not right! It is horribly frustrating and a long process and when you are in pain it is also quite depressing at times but keep going! Angry and depressed don't get you anywhere.. motivated is very good :) We are all still going to have our angry and depressed moments and even Chiari surgery will not be a cure all but at least there may be help! Your MRI looks a lot like mine did, I only have the new MRI posted right now but I will try to get my first one before surgery in later... I am not as good with the computer as my kids so I may need to wait until they get home from school :) Use your anger to help you find the right doctor and when you are sitting in that office where someone is listening you will be able to smile again!
Time to get a different doctor. It is NEVER suggested that you STOP taking a medication. I would like to suggest the possibility that if you have not started taking it, not to until you get a second opinion.
You are most likely NOT just crazy. It's more that you have a pretty messed up doctor.
Keep us posted.
You are most likely NOT just crazy. It's more that you have a pretty messed up doctor.
Keep us posted.
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