FED UP / TCI possible

[Rahe28]

Hi all. I am just so very fed up with all of the aggrivation and the obsurd things going on. Dr. Walsh ( the Chiari specialist here in La.) called to inform me that the appt. I made last thursday is no longer valid because they  thought I was a pediatric patient....REALLY???? I gave you my birth date  not once or twice but four times and let you know that the appt was for me, and you still screwed it up. I have nw left FOUR messages for his office manager to contact me because he is a ped. N/S, but, if it is Chiari...he sees both ped. and adult....because this is his specialty !!!!!!!!!!!!!!!!!!!!!! I still have yet to recieve a call back. Dr. tenders office called me to check on me to see if the pressure I was having the day I saw him has ceased yet....NO IT HAS NOT !!!!! I mean thank you for calling...but where is that DR that I had so much confidence in before....I really really thought that the battle for a DR was over. They also informed me that at my appt on the 23rd before surgery on the 5th, they would inform me of the other testing and blood work ups that would need to be completed before surgery...so was I wrong?? Does this DR actually do all of the testing that I had been wondering about?? i.e. ~ t/c, EDS, ...etc....

I know that it is ridiculous to be sitting here crying my eyes out.....especially since I already have one of those HA's thtat has me running to the kitchen sink every 4 minutes for a hot towel....but I am just soooooo done. I am so tired of feeling like this.  

I was soooo fed up that I called TCI and the lady told me I had to stop crying so  hard because she could not help me if she couldn't understand me. I did however find out that Dr. Rekate takes my insurance since medicaid has changed over to United HC. I know that calling TCI would only make it worse, hearing how helpful they were and not having to explain to ANYONE what Chiari was. It felt sooooo good just to pick up the phone and hear someone say Chiari institute, what can I help you with today. It is just sooo hard sometimes to stay positive. Just when I think that I am getting closer and that I have finially found the right path..the construction crew comes in and puts up a road block sign, saying DETOUR.  I am so sorry to be yelling and venting here.....I just know that you all will understand and you won't take it personally.

Does anyone have any experience with private pay and insurance at TCI?? My hubby said this morning that if that is what we have to do...then that is what has to happen. I hate the idea of being all the way in NY away from my family, I just have gotten to the point where, I just don;t see any other optiions....I struggle everyday just to take care of myself. Showeringor bathing has become impossible without the help of my oldest son Logan or my hubby. My son should not have to help me get in the tub...help me wash my hair with a cup or help me out. He told me last night...he didn't mind, because I took care if him like that when he needed it. He is such a sweet little man. Growing up so fast...they just deserve a mom who can actually be a mom. I am the mom that has the perfect birthday parties and bakes all the goodies homemade, and takes the time to make  beautiful memories, and roll on the floor with them. Who gets everyone to their practices on times, and makes sure that they always look and feel their best. I can;t even get on the floor ...much less roll around wiith them. My son Austin and my daughter paris have birthdays in June..the 14th and the 23rd...and i normally throw one big bash for the both of them since they are so close and they are less than a year apart ...and they always  LOVE IT !!

Okay. I am just rambling with thoughts now. To anyone who took the time to read this  awful long rant....Thank you from the bottom of my heart. I just had to get some of this out and off of my chest.

Hope you are all having a wonderful and pain free...HA free day :)-

[irislita]

This is just horrible.i dont get it.why does this dr walsh aprove and tell u that u r an urgent case and then cancel it???!!!plus didnt the doctors have to swear they need to help people in misery...where is there attitude please???i can understand u must feel really left alone and frustrated...i hope this all is happening to find u the right person...

[Rahe28]

Lol...Selma,I have the video of it. I was so young ;)-

Thanks so much soccero. I am  working on what I feel is best, and continuiong to pray for  guidance to the right  Dr. I appreciate the prayers always :)

[soccero]

just wanted to say hang in there! what ever u decide has to be the right decision for u not anyone else! im praying for u!!!
molly

[selmaS]

  Glad u have a good NL...u will need to lean on her.....

OMG, really ...people can be so caddy....I went looking on utube to see if I cold find the  segment u were on, but I have no idea what they called it or when it was....u may have a better chance of finding it, there r many  of her shows in there....lol...

[Rahe28]

Hmm....not sure about the sister sister thing, but yes...it was short lived. I was there on behalf of the 1994 International Miss pageant. We were there because someone went on live television and said ...and I quote...

"You gotta watch out for those Louisiana girls, they pull em' out of the swamps...they're dumb, but gorgeous" OOOHH...just thinking about it infuriuates me !! So, a few of us went to be interviewed by Rholonda about Kiddie Beauty Pageants.  It was a blast, and we had a TON of fun, and certainely proved that we were anything but dumb with a 4.0 GPA..lol.

I at least already have a good NL. I really do like her,a nd have been pleased so far.

[selmaS]

  I was able to leave since I am 3 hrs away.....2.5 depending on traffic....lol...but since u r further u may have to stay a week or so longer.... and that is only post op.....for ur first visit it is a 2 day visit....tests and the actual dr visits  take time.

Angle flights is a good one and we have a few others listed in the Health Pages under LINKS.....

Rholonda show?...hmmm what was that about? I kinda remember that show.Short lived, she was on Sister Sister, right?....


It is hard to think we all have to go thru this run around to get help, but it seems we all get it one way or another and it just is not right!

Make sure u find a good NL at home to help u when u do get home, for check ups in btwn going back to NY or if u have an immd need or a new issue crops up u can not fly to NY....so find a good NL....

[Rahe28]

Thanks Selma...I remember you mentioning Variety house many times, and I think I will also contact Angel flights. I just finished printing out the forms to fill out for TCI. I just spoke with Dr, Tenders office, they called to ask if I wanted to come in before my 23rd appt. alone to speak with Dr. Tender about anything that was bothering me. Too many Dr's...lol. I also just got to speak with a member here also from Louisiana that has Chiari, and I have to say to actually speak to someone else  going through the same is nice. How long did you have to stay in the area after surgery? I have been to NY only once, when I was 10, and was on the Rholonda show. It was awesome though. Reminded me of a much bigger version of New Orleans, and will always hold a special place in my heart. It is always so nice to know that when I feel like all is lost, I have people here that truely understand.

[selmaS]

  If u do go to TCI, to keep costs down ask when scheduling about Variety House, it is a House with rooms and a common area with a TV and kitchen which is close to TCI and the Hospital (my DH and DD stayed there when I was in the hospital) it can run approx, $35 a night which is good for that area of NY !! My DD use to live approx 30 mins from that area, and has since moved, but it is not that far that I could not get to see u somehow :)

Dr R is the Dr that is now in charge at TCI and has started accepting ins in the last yr, I think I posted something about this a while ago....

  Just know there is a way to get a place to stay that is not expensive.

    

[Rahe28]

Thanks to both of you for listening. I just know that I can't keep living like this. I talked to my hubby briefly about it this morning, and I am going to visit both Dr. Tender and Walsh this month and send my paperwork to TCI. The insurance company is seeing if they can make a life threatening exception to cover TCi, I would only be responsible for flight and rooms.
It would be nice to be somewhere that I KNOW, knows what they are doing. They also said that I would be resposible for part of the consult with Dr. Rekate. It would be nice to meet you Selma...to put a face and a voice with the name :) Who knows at this moment where I will windup. I have to say....I had to give it to God, and where he leads me, is where I will go, because I can't do anything more than I have done. Thank for all of your support.

[selmaS]

  I had my surgery at TCI...and I had BC & BS...and the amount I had to pay out of pocket was not that bad, but it was my ins....I had to pay to see my NS, and I had a co-pay for the NL...the hospital worked with my ins so no issues there....

Talk to their billing dept and ur ins and find out what u will be responsible for, but let me tell u, I had the same type of thing going to Drs and being let down that I was so grateful to get to a place I knew where the Drs knew what to do to help me.

My biggest disappointment was a Dr (chiari specialist my foot) in Philly, that said yes u have it, but it is beyond me, and when I asked what he suggested I do or go, he had no idea....thanks for nothing......

If u do choose to go to TCI, I will see if I can get up to NY to my DD's so I can meet up with u....I know how frustrated u r....and if I can , I will.

[Rylanesmom]

Vent away my dear we all feel like you do it times.  The chiari run around is so stressful!  I am sorry our symptoms have gotten so bad and understand that is well.  I am so glad you have an another option for treatment if you choose.  Hugs and prayers:)