management of all symptoms

[jpurple]

Hello,
   I was just interested in what type of doctor could manage all of my symptoms.  I went to TCI in April 2009 and they were wonderful, but I am now home and the doctors around here just don't understand chiari and can't put it all together.  My neuro has me on Elavil 30 mg at night and wants to start me on Topamax for migraines, but are they migraines?  The triptans didn't help much and caused head pressure and palpitations.  I take lortab that my pcp gives me, but know they don't want me on that for long, but what else can I do?  more than 2 ibuprofens causes my asthma to act up, so i'm at a loss.  I get headaches almost daily now and the neck pain  triggers them i think.  At TCI the doctor triggered the pain by putting pressure on my head and I also have only one vetebral artery that is functioning so that is putting a lot of pressure on the one side of the brain stem.  Anyways, I don't feel well most of the time and was interested in what the group though.   I'm having arthritis or tendonitissymptoms in my elbows and wrists now to the point its difficult to do things sometimes.  I'm going to an ortho for f/u next week, but here we go another doctor.  I need advice and you are all so supportive, I"m interested in what you think.
Take care

[selmaS]

Hi...I had drs that did the same to me I was given prozac...

I had Dr Shelat on my 6month post op visit...my insurance covered the NL just not the NS so I did not see the NS for that visit...I found him to be informative and very helpful.Dose ur insurance cove r the NL except for a co-pay?...if so, only see him.

If u know a good Rheumatoid dr in ur area they may be able to dx the EDS for u and suggest some treatments and ways to lessen the pain.If u do have EDS< it would make sense that u also had cerviocranial instability....

I know some one else that may have used a traction device similar to that  I will see if she has ne info and how u may be able to get one.

It is good to know they want to follow up with u.....

no worries...I am here and if I can help let me know : )

"selma"

[jpurple]

Thanks Selma.  I am in the upstate ny area near Buffalo.  One neurologist told me the chiari was not causing my symptoms and offered me lexapro as he told me i was depressed, after spending 20 min with me. my pcp said that is wrong and don't take the lexapro (I had refused it anyway),  My neurologist i have now only focuses on migraines and doesnt think chiari plays a role in this at all.  I will try re-educating him at my next appoint end of the month.  I've just been coasting along thinking this is the way it is going to be and hope I don't get any worse, but now feel like I am getting worse.  They didn't tell me I had cervicocranial instability.  he did the axial loading that caused increase in headache.  
  He did also write return to office 6 months, but its not that easy for me to get back there financially (my insurance doesn't cover it).  I paid out of pocket last time.
I'll talk to both neuro and pcp and since i'm going to ortho I'll ask him too esp about the Ehlers Danlos you mention.  Dr Shelat also mentioned traction, but the unit he mentioned isn't covered by my insurance and the one that hangs on the door scares me since we didn't discuss how to use that one.
I'll keep you posted and thanks for always being there for me and for all of us.  You always post a response and i for one know how helpful you've been for me as I can imagine for all the others on this forum.
Take care

[selmaS]

Hi..it has been a while since u posted last..and I am glad TCI was a good choice for u to go.....not knowing where u live area wise I am not sure if we can suggest neone in particular, but how is ur PCP...is he/she willing to learn?

I was told by TCI to have a NL on hand at home, but they were not willing...so my PCP has researched and will listen to what my Drs at TCI suggest and will listen to me as well.....

SO, do the drs feel u have  cerviocranial instability?....If so, what is the plan they gave u?

Were u also checked for Ehlers-Danlos?...the tendinitis issues r very similar to the type pain associated with EDS...so I am wondering.

Start with ur PCP and go from there...he/she should know of drs in ur area NL that should have other patients with chiari....this is the best thing I can suggest.

Keep us posted on how u r doing : )
"selma"