Name that tune! Went to see the NL today and that is pretty much what he said to me. I got a 1 hour and 40 minute lecture on how I am depressed and stressed out and have so many things wrong with me that he wouldn't know where to start. Grrrrrrr, I don't know if I should laugh or cry. He said that my problems all stem from the car accident that I had 9 weeks after being decompressed. And that my "AC" (Arnold Chiari) really had no bearing on any of the problems that I'm having. He stated emphatically that I have MIGRANES. My torn rotator cuff is from a migrane. The pain in my arms and hands is from a migrane. The pressure headaches are migranes. I can't remember things because I am stressed. The sharp pains in the base of my skull are from migranes. The pain in my neck and shoulders is from migraines. I can't sleep because of migranes. I need to get myself into a pain management program and exercise and build up my strength. "You don't want to be on Oxycodone for the rest of my life, do you?" I guess I really didn't need to have that decompression surgery...so he's going to give me Topamax for my MIGRANES!! When I had my surgery almost 2 years ago I had a 13mm herniation and my fluid was100% blocked. So what I got out of that appointment was that I need to be a happier person, exercise more and chill out. Sigh.
Now I really don't know if I should pursue going to the WI Chiari Clinic or just "be happy" and continue to take MORE drugs. What's your vote?
My name is Barb, I know exactly how you feel. I had surgery 11/2006. I relocated here from Montana 4years ago. I fell down a flight of stairs at work in November of 2009. My symptoms and pain are back with a vengeance and no one seems to listen. Now my dr.s have diagnosed it as a traumatic brain injury, and tell me that nothing can be done. They say that a follow visit to a ns is unnecessary because it is not related to the cm. I am totally exasperated with the whole “listen to me I’m the one who went to medical school” attitude they give me at every appointment! I have been told that its all in my head so many times I could just scream.in the past I have been told that its conversion disorder, that I’m just dr. Shopping, that they are worried that I’m just drug seeking and that I am just faking. This is just frustrating. I am still a little afraid to tell the dr.s that I am in pain due to the past medical care that I have received. I am hoping that my appointment Thursday goes better and this dr will refer me to the wi chiari clinic.
Hi Barb, I got the "I've been in the neurology business for 40 years now..." What's up with these NLs? Very rarely do I hear anyone say anything good about their NL. I am reading about Topamax on the discussion boards and I am not too enthusiastic about all the side effects. I just don't get how they can say that it's not related to the CM. Don't they read the symptoms? The NL also informed me that there is a "great debate" going on about CM and the need for surgery. I should've just gotten up and walked out. Thanks for telling me about your experience.
BarbSalisbury said:
Hi Terri My name is Barb, I know exactly how you feel. I had surgery 11/2006. I relocated here from Montana 4years ago. I fell down a flight of stairs at work in November of 2009. My symptoms and pain are back with a vengeance and no one seems to listen. Now my dr.s have diagnosed it as a traumatic brain injury, and tell me that nothing can be done. They say that a follow visit to a ns is unnecessary because it is not related to the cm. I am totally exasperated with the whole "listen to me I'm the one who went to medical school" attitude they give me at every appointment!
I am unable to take a lot of medications because of allergies and the fact that they affect my heart rate so badly. My sister takes topamax for her migraines and has had great results, but it didn’t work well for me, I think each person responds differently. Sometimes I would just like to remind them that we are the experts with our bodies, no one can study a text book or do anatomy an a cadaver and be the expert on my body!
Hi Barb, I got the "I've been in the neurology business for 40 years now..." What's up with these NLs? Very rarely do I hear anyone say anything good about their NL. I am reading about Topamax on the discussion boards and I am not too enthusiastic about all the side effects. I just don't get how they can say that it's not related to the CM. Don't they read the symptoms? The NL also informed me that there is a "great debate" going on about CM and the need for surgery. I should've just gotten up and walked out. Thanks for telling me about your experience.
BarbSalisbury said:
Hi Terri My name is Barb, I know exactly how you feel. I had surgery 11/2006. I relocated here from Montana 4years ago. I fell down a flight of stairs at work in November of 2009. My symptoms and pain are back with a vengeance and no one seems to listen. Now my dr.s have diagnosed it as a traumatic brain injury, and tell me that nothing can be done. They say that a follow visit to a ns is unnecessary because it is not related to the cm. I am totally exasperated with the whole "listen to me I'm the one who went to medical school" attitude they give me at every appointment!
I have had so many doctors and other medical professionals treat me exactly the same way. I've been called every negative name in the books over the last 16+ years and it's abusive. Plain and simple. I put up with it from my nl for far too long and I settled for feeling terrible and having an ever shrinking life. I gave up for awhile and I regret it so much. When I finally decided to look for another doctor and answers it took a year and a half of visits to numerous clueless doctors and alot pain and anxiety until I found my current NS and PCP who both are wonderful. It was worth all the trials and tribulations. I found out from a CINE MRI that my CSF is completely blocked at C2 from a build up of scar tissue.and my patch is loose. I need a revision and I go to see my NS on Thursday to talk about schedualing it.
Please Please Please don't give up. There are good doctors out there. The key for me was the CINE MRI. I asked my old nl for one for about 5 years and she always acted like she didn't know what one was. I have great insurence and I've had 2 in the last year and a half. The WI Chari Center is suppose to be great. Don't give up.
Wendy
BarbSalisbury said:
Hi Terri My name is Barb, I know exactly how you feel. I had surgery 11/2006. I relocated here from Montana 4years ago. I fell down a flight of stairs at work in November of 2009. My symptoms and pain are back with a vengeance and no one seems to listen. Now my dr.s have diagnosed it as a traumatic brain injury, and tell me that nothing can be done. They say that a follow visit to a ns is unnecessary because it is not related to the cm. I am totally exasperated with the whole "listen to me I'm the one who went to medical school" attitude they give me at every appointment! I have been told that its all in my head so many times I could just scream.in the past I have been told that its conversion disorder, that I'm just dr. Shopping, that they are worried that I'm just drug seeking and that I am just faking. This is just frustrating. I am still a little afraid to tell the dr.s that I am in pain due to the past medical care that I have received. I am hoping that my appointment Thursday goes better and this dr will refer me to the wi chiari clinic.
I think you should go to the specialist. I'm sure there must be some good NL out there but I've not met them and it seems like very few people on this site have either! I hate that you were treated this way, nothing is more frustrating than having a big know it all dismiss your issues. :(
Hi Guys....I think it is important for everyone to be able to vent & share. Just please remember we cannot post a doctor's name in any negative way. This is just a reminder. I do not want you to think I am being rude. We have just had recent problems with this.
It also drives me crazy when NS or any Dr. treat you like you have a mental condition when you are seeking help with CM. I had an ENT that told me I needed to see a psychiatrist. Later my NS sent him an "informative" letter. I am so sorry you had to go through that heartbreaking experience !!!!
I also have a traumatic brain injury diagnosis from having multiple concussions from falling......We also have 2- TBI forums in Ben's Friends.
BarbSalisbury said:
Hi Terri My name is Barb, I know exactly how you feel. I had surgery 11/2006. I relocated here from Montana 4years ago. I fell down a flight of stairs at work in November of 2009. My symptoms and pain are back with a vengeance and no one seems to listen. Now my dr.s have diagnosed it as a traumatic brain injury, and tell me that nothing can be done. They say that a follow visit to a ns is unnecessary because it is not related to the cm. I am totally exasperated with the whole "listen to me I'm the one who went to medical school" attitude they give me at every appointment! I have been told that its all in my head so many times I could just scream.in the past I have been told that its conversion disorder, that I'm just dr. Shopping, that they are worried that I'm just drug seeking and that I am just faking. This is just frustrating. I am still a little afraid to tell the dr.s that I am in pain due to the past medical care that I have received. I am hoping that my appointment Thursday goes better and this dr will refer me to the wi chiari clinic.
What a nightmare of a visit..and I bet you had to pain for that rudeness!!! This is only my opinion....I , personally, have had NO luck with any of the NL's I had seen in the past..I guess the NL's I went to were not well educated in Chiari.
From what I have read others post regarding the WI Center....I have only heard great things.....IMHO, it is worth a shot. Have you had a recent MRI???
No one in this day and age should have to live each day in severe pain...and if someone has to take narcotics or other meds to have a better quality of life...then so be it....who the heck is that joker asking you if you want to be on Oxy the rest of your life? Of course you don't....however, you want relief, I am sure.Hopefully, you will get the answers and treatment you need to have a better quality of life.
I oft times wonder if these docs speak to men the same way they speak to women??? Do they tell the men that all their many issues are "stress, depression, hormones'????
Keep us posted....we are here for one another...just shrug that NL off as another uneducated NL and move forward. Praying you feel better very , very soon!
Thank you everyone for your replies! At our house we deal with a lot of things by using humor. My husband calls me once or twice a day to make sure I am vertical and coherent and haven't driven off the road so when he called today and asked me how I was I said "I'm GREAT!! Absolutely GREAT!! I feel wonderful. I'm SO HAPPY!! I'm cured!!" He just laughed and told me I was funny. He was with me at the NL appt yesterday so he heard everything that was said. Having a positive outlook does make you feel more upbeat, I must say :) I appreciated everyone's input. Terri
Hmmm....I know this song...I have debilitating headaches...double visions..vertigo..tinitus...slurred speech at times..facial and limb tingling...can't stand light...and mental fog big time...all due to migrsines and depression. Oh..and I gag when swallowing to the point where I've had panic attacks........I'm so tiredof not being treated seriously...I live in pain all the time...mt life revolves around it...but iveactually been told once by a NS that it can't be too serious if I made it to see him...?!
Useless! My NL refuses to even say the word Chiari. I’m post op and she just prescribed a beta blocker for the “migrain” but the only reason I am taking it is because I have dysautonomia (another condition she had an aversion to) with a high heart rate so I need the beta blocker for that. How sick is that?
Do you even need a referral for the WI center? Check it, cause if your insurance doesn’t require it than you can bypass the duds and make your own appt. I did.
Uh ! I feel your pain. I was sooo sick of taking meds that i stopped taking them all together. I was ok for a while but, now its getting cold and its making it hard for me. I stopped going to my doctor because she never even hear of my condition and I was so tired of trying to "school" her when i didn't know much about it myself. Im looking for a new doctor, but most of the best are not taking any new people at this time.