NS appointment with Dr Rosner

[pamk5]

I finally see Dr Rosner on the 29th.  I am so relieved to finally be getting to him.  I honestly feel myself going downhill quickly.  Yesterday, I had an endoscopy to follow up on the swallowing tests that were abnormal, good news is nothing structurally wrong, not even GERD. Bad news is I guess it has to be neurologic and Chiari related.  The meds the PCP put me on to hold up my bp has caused me to gain at least 10lbs in a week from fluid retention.  My feet and legs are swollen but seems to be helping the orthostatic intolerance.  Why do all the meds cause something else to go haywire.  We had rain here yesterday and today I have had one of the worst headaches ever I have taken my aresenal and nothing seems to work.  The dizziness and nausea are so bad today too. Normally, I get these bad days on the day of the rain?  Kind of weird.  Just venting and whining, thanks for listening again!

[pamk5]

Well I think they say that because they are some how jealous of him, he has helped alot of people they brushed off with "your tiny herniation cant possibly be causing your symptoms".  I am not really sure but to finally be at a doctor who gets it and I am comfortable with his knowledge will be like a Godsend to me.  

I have spoken with a former patient of Dr Rosner's who had surgery with him quite a few years ago.  She said she was sick for 15 years and almost bedridden when she found him and she calls him her saviour. I can find pages of testimonials about the kind of doctor/sugeon he is online.  I cant find that about any other NS's around here.  I know about his history as a matter of fact you have to sign you know to see him (a new requirement from the medical board).  

This is the issue as I understand it:  Chiari Zero basically means someone doesnt have the text book 5mm herniation to be considered that they have Chiari.  The studies now say that the amount of herniation isnt important as much as crowding, CSF blockage to cause someone to have symptoms.  Well Dr Rosner going by the most recent info versus out dated info did surgery on some folks with Chiari Zero and well the medical board went on a witch hunt.  The rest is history, he is now reinstated and seeing patients.  I feel perfectly confident with his level of experience and the kind of surgeon he is.  We have to all make that decision for ourselves.  I hope this helps.  

[AJ29349]

Good luck at your appointment.  May I ask where you live?  Let me know how you like Dr. Rosner.  I am in SC and several of the NL here have told me to steer clear of him.  Not sure why.  So, please let me know how you like him.  Best wishes to you.  

[selmaS]

I was just noticing today as I was writing a check how the PFD surgery made a diff for me with cognitive issues and fog.

I just started a new med topamax and I got the brain fog back and thought on crap...but, as I wrote the check I asked, is today the 18th?
and as I did, I remembered I used to ask what is the date, and when told the 18th I would have had to say of what  month...so I am sooooo much better and didn't even realize.( I did know it was Nov)...lol....

Little things do mean a lot : )

[Jennyfoo]

Yay! I'm so glad you'll be seeing a competant dr soon. Hang in there! Your wait isn't too long. I've got until Dec 22, and I've been declining rapidly. I hope you're just in a flare that will let up soon. Same for me, of course. Good luck with Dr Rosner!

TTFN,
Jenn

[pamk5]

My dad has been my shadow thru all this, he drives me when I cant see.  Somehow between the 2 of us we manage to get it done.  Speaking of "our minds"  today has been so bad.... I feel like I cant retain anything, stammering, stuttering all over the place, I have the vocabulary of a 2 year old today.

I am so relieved too.... to finally be seeing the famous Dr Rosner.  His office staff seems so nice too.  

Thanks, for your input!

[selmaS]

Congratulations, the hard part is over.....so happy for u to get ur appointment.

No worries vent as much as u need...I always said we r walking barometers...lol....

Hang in there : )

"selma"

[n40066]

well many congrats, pam!  that's certainly wonderful news!!!  i'm very happy you are finally on your way to "real care"!  i wish only good things for you and do hope you have someone that will be going with you, as these appts can be quite overwhelming.  there is so much information in such a short time and our minds being the way they are doesn't make retention easy as it is!  lol!  i agree on the med thing....sometimes make you wonder if the "cure" isn't worse than the disease!
sorry your struggles are many right now, but am so very happy there is sunshine in your forecast!
elizabeth