New here, new diagnosis, head still spinning.

Hi all,  my name is Penny and this is my first post so bear with me.

   I was watching something funny on TV on 9/14/09 when it felt like my brain exploded...   this had happened before, but the headache had always gone away and the doctor I talked to several years ago told me I was stressed out and gave me Xanax - I left his office feeling like a hypochondriac and never brought it up again even though the symptoms continued.   I still have the headache that started on 9/14, but fortunately, I'm a nurse now and work with my (new and better) PCP.  I told her my symptoms and she sent me for the MRI that diagnosed my Chiari (8mm).  

I know it sounds crazy, but I was glad when the Chiari showed up.  I wasn't insane and I didn't have the brain tumor that killed my grandmother when she was my age.  So the next step is a NS.  I go see a guy with a good reputation at Albany Medical Center and left there feeling insulted, humiliated, and scared.  I felt like I had been patted on the head and told to stop wasting his time.   I understand that the surgery can be life threatening and other avenues should be explored first, but his exact words were "You aren't disabled YET", "You haven't lost feeling in your hands YET."  He said the last time he performed this surgery was because the patient had a third degree burn on her wrist that she didn't feel happen!   He doesn't do surgery "just for headaches, neck pain, and dizziness."  

   I'm a single mother with a 17 year old daughter to put through college.  And this guy wants me to lose my job and be collecting disability (which wont pay my mortgage) before he'll help me?   By the way, if I lose my job, I also lose my health insurance - how is that supposed to work?  Personally, I thought he was an arrogant ***.

I've been watching and reading this site for a few weeks and have learned a lot.  I'm hoping to pick your brains.   Everyone is suddenly throwing narcotics at me all the time and I don't want to end up in rehab somewhere down the line!

I'm submitting a request to my insurance to travel out of network (they wont cover The Chiari Institute!) and am looking at doctors in NY City.

1)  Avarage daily brain pain is around a 7 - neck pain is around 5/6 - dizziness/vertigo is getting worse daily.   Should I wait and see or push forward to another NS?  I am pushing through and not missing work yet, but I think it's only a matter of time before my performance there will come into question.

2) Any advice for dealing with the headaches without popping narcotics all the time?   I still need to function.

Any advice is appreciated.   I'm not prone to hystrionics or anything, but one of my fears is being a hypochondriac LOL.  If at anytime you think I need a good smack upside the head, just say so.  :-)  

Thanks in advance

Penny

[rod44]

Hi Penny and welcome,
I like everyone else here can identify with your pain and your frustration. Push on and get a NS who knows what he/she is talking about. The problem you encountered is a common problem that many here encounter as well, ignorance is something that seems to be common among quiet a few doctors working with people with Chiari so try and find one who is up to date with the latest thinking on CM and who is compassionate, hard task but they are out there.
Ray

[celticbreeze]

Hi Penny,
U don't need a smack upside ur head, the dr does.  Have you checked out the list on this forum where people give their NS, city, and state?  It may help u locate another NS. As for the headaches, ice on the back of my neck helps me, others indicate that heat works.  Don't give up hope.

Susan

[SaratogaNurse]

Thanks for the input.  I'm not about to give up - the fight has just just started for me.   I'm moving to California from upstate NY in June and if I don't find someone good here, I'll go to UCLA when I get there.  The thought of having this headache and shoulder pain that long is very daunting though.   I'm moving to care for my grandmother, I was hoping to not have surgery in CA because then my mother would end up taking care of both of us.  I just feel this pressure to be strong and healthy before then.  I know, probably wishful thinking at this point.   My other thought is this - If I'm going to need this surgery, I want to have it while I'm strong enough to bounce back and recover well.  

I'm a strong, stubborn, Irish woman.  I'll keep pushing until I find a doctor who doesn't treat me like an idiot.

It scares me to think that some patients would listen to advise from a doctor like this though.  They simply don't know not to.   Any NS who gives advise on a condition that he/she isn't up to date on is just being arrogant.   They should refer the patient someone who is up to date on that condition!  

There is a NS right in my area who is on the list in the other post, but I know and have worked with him.  He is a very smart man and I would pick his brain, but  I would warn people to stay away from his knife as his reputation isn't what it should be.  He mostly does peds, but I would never put my child under his scalpel.

[MelpomeneTears]

I know someone in Glens Falls who has Chiari, they have a great Dr.  I am getting the info for you, it might be a few days though.  But a lot closer to Saratoga than NYC.

[selmaS]

Hi..I agree u need to keep pushing and it i s deff the dr that needs a slap up side his head....as for how to deal with the pain...do see someone in pain management and PT these r considered conservative methods that some may ask u to try prior to surgery....and many of us were told we had different conditions in which these mentods were used, but didn't work....ur insurance may be more willing to help if they understand that u have tried other aves.....

In the meantime, u may want to check out the Health Pages here on MH...we have on titled anti inflammitory foods...and U will also want to try things like relaxing in a warm bath.....with soft music, candles and enjoyable scents. Meditation can help...some have also found accupunture or accupressure to help deal with pain. One NL told me to try correcting posture as much as possible and to read up on the Feldenkrais Method.

"selma"

[Rach68]

Has anyone had any help with headaches taking Lyrica,I'm taking 150mg a day and the headaches seem better,but I'm just nervous that its not the Lyrica and that the headaches will come back,like they always have before!!(I have a 8mm hern.)

[WeddingJean]

Penny -  I too am on Lyrica but the NL put me on it for nerve pain (pins & needles, burning, etc...) & it has not helped with my headaches at all. 150 mg daily is the highest dose I can take & still function (although any 'functioning' I do is limited by my additional symptoms). I was switched to Neurotin 3 yrs ago because my prescription company would not pay anything for the Lyrica. Then I was taking 2700 mg/daily & it didn't work as well as the Lyrica on the nerve pain. As for the headaches for now, Tylenol & Advil stockholders love me!! I am still on the 'just diagnosed merry-go-round' & will be more assertive w/my PCP & the NL to address my symptoms. I have a CINE-MRI scheduled for tomorrow & we'll what shows up then. If I'm not a candidate for surgery (& even though I want the symptoms to go away, I'm not sure I want to be), then I will have to make sure my PCP & NL pay attention to my symptoms & future. Hey, maybe I'll just pull a Donald Trump "You're Fired" & find totally new drs. Whatever info I get for dealing w/the headaches I will share.

The NS I saw told me that "I am too old to have Chiari symptoms," & then basically dismissed me. When my husband walked out of his office he said he definitely got the feeling we were wasting the NS's time...so I know how you feel. And if you ever get the opportunity to smack the NS you saw up side the head, hit him once for me too! LOL

Oh, & BTW, welcome to our family...there is a great group of people here!!  ***Jean

[SaratogaNurse]

Thanks for the welcome.  :-)   I sent an E-mail to my insurance company telling them that this NS wasn't right for me as he was not up to date on my condition and requestion a second opinion from someone out of network (hopefully TCI or someone in NYC).  I'm still waiting to hear back.   The funny thing is that if I had cancer I'd be allowed to go anywhere in the country for treatment and they wouldn't question it!  Everyone keeps telling me "Trust God" - well tell God to talk to my insurance company!  LOLYes, I have faith in God, but I also know that I can't sit on my butt and expect him to do all the work.  God made me strong and stubborn so I can fight for what I need.

   As for meds, I just don't know.  Right now I'm living on Naproxen and waiting for an appt with an NL who specializes in helping headaches without narcotics.   Don't get me wrong - I have the good stuff, just don't want to be popping it all day every day.   I printed out an article on antiinflammatory food and will try those and see if it helps.

Thanks all for the help and support.   My family all live across the country and are as supportive as possible, but it's nice to gab with people who "KNOW" ya know?

:-)  Penny

[MelpomeneTears]

I found the information on the Dr. in Glens Falls, he also recently opened an office in Saratoga.  His Name is Fred Scialabba and his number is 518-793-8160.  I hope this helps.

[n40066]

hi penny and welcome to the family!  as i'm sure you already have realized, there's lots of good people and info on here.  hope you'll stay with us on your journey towards knowledge, validation and hopefully relief !
elizabeth

[SaratogaNurse]

Thanks for getting the information.   Dr. Scialabba actually has rights in the hospital that is three blocks from where I work.   He works with several of the doctors that I work with.   I've done a lot of homework on this man.  I'd love to sit down at a table and pick his brain because the general concensus is that he's got a brilliant mind.  However, I choose not to have him as my surgeon. Thank you, however, for taking the time and making the effort to get this information for me.   :-)

Hi Elizabeth,  I'll stick around.  :-)   It's not like I can discuss this much on Facebook, ya know?   I feel like I've spent the last month explaining what Chiari is and I still have people saying things like "Well, thank goodness you only have #1 so you don;t need surgery."  or  "Just go to the surgeon my mom used, she had her disc fused last month and she's fine!"  All I can think is Dear Dod, save me from these morons.   LOL    My family is wonderful.  They are all educating themselves and asking inteligent questions, but there are always those people that I would love to smack for the fun of it.  :-)   Yeah,  I'll stick around.  LOL

[n40066]

lol!  well, then...we should just combine our lists and make a day of it!!  LOL!