Upcoming Appoinment and Some Questions

Well we get to go see a NS. Penny's appointment is next Wed. We are excited and scared. Our fear is that this will be another dr that just dimisses her condition.

She seems to be getting worse in my oppinion. Her pain is greater and more often....almost constant. She says the pressure in her head is almost unbearable...like it's going to explode. The weakness down her right side keeps increasing and now she's having what she describes as "electric pulses" down her left side. Her back and neck are always hurting and there's no comfortable position for her to sit or lay. She did PT yesterday but wasn't able to do everything she had been doing.

We were wondering if there was a list of questions that we need to be sure and ask the NS at her appointment. Do any of you know of or have a list available. If not, maybe those experienced can help create one. I know it would help us and I'm sure it would help many other new comers.

Thanks again,
Penny and Jonathan

[selmaS]

HI...can we ask who u r going to see?...I am glad u got the appoint...and I know all to well as does everyone here that emotional roller coaster u go thru b4 and during each visit.

We do have a list..Well.....until he gives u his dx and suggestions it can be diff to have all the questions ready u will want to ask....so,

I suggest u have someone go along to take notes...bcuz we can bcome deer in headlights and forget to write things down....

Ask how to contact the dr afterward in regards to questions u thinks of after u get home.

U wan to know how they do surgery if it is suggested....endoscopy.... bony decompression or PFD...w/ duraplasty...and what kind of patch.

Will he check u for tethered cord...Ehlers Danlos....and other related conditions.

What % of benefits does he feel this will offer.

If no surgery then what treatment options r available..... pain management.....will he monitor u...how often.....

After surgery...how often will he monitor u.....

Is everyone in the OR covered by ur insurance and do they get all the info when u sign up w/ the drs office.....how much do u need to do extra?

How long after surgery do u need to remain in the area?

I am sure someone else will give a few more ideas.....

Good luck
"selma"

[lu7997]

The only other thing I would add is find out how many other people he has treated with simmilar conditions.    

[selmaS]

Thanks Angie...soooooo true, this above list was made under the guise it was meant for a true chiari specialist.

[LisaM46]

Hi Penny & Jonathan,

When my neck pain was so bad that I couldn't find a position to allow to sleep... a nice squishy ice pack helped, and the Lidocaine patches my NS prescribed.  (I have to use extra tape, they don't want to stick too well near the hairline!)  I bought a memoryfoam-type pillow with that lumbar roll on the one side.

It seemed to subside a bit - once I LEFT IT ALONE!  I stopped swimming, and learned I will never visit the Chiropractor again (that was before dx).  I think I'd been pushing it too hard with the swimming, but I hope at my first meeting with the NS, he will allow me to start back with some gentle swimming.  Massages helped a lot (just don't let them push your head up, you know chin to your chest direction), and I'm currently doing acupuncture once a week.  

My neck is flared up again this week, and the pain seems to be "wider" and "longer" yesterday & today.  But, I'm not in tears trying to find a sleep position so far.  Don't get me wrong - it's still hard to get in that sleep zone, but not as bad as when there was any neck manipulation going on.  I don't know how others do with PT, but I'd be afraid to do it during a flare up.

Penny, maybe it's too much too soon for your neck pain?

Lisa