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Topic: UPDATE!!! NECH/Now in NYC (Read 315 times) |
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Renee
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UPDATE!!! NECH/Now in NYC
« on: Mar 31st, 2004, 11:06pm » |
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I will be traveling to Connecticut next week as I have an appt with New England Center for Headaches next Thursday morning.
Wish me luck!
I dumped my neuro here in Texas and frankly I don't think the neuros here know what to do with me.
Anyway, NECH got my MRI/MRA films today and reviewed them and called and told me to be there next week!
I'm glad but scared, again...BUT...hoping someone will finally be able to HELP me!
btw...had to mark zomig off my list of meds due to abnormal reaction last night. ER gave me relpax to try but have yet to use it. They left me pain free with an injection of fentanyl and phenergan. Fentanyl knocked out all pain and fast and I slept almost all day today!!
wish me luck
renee
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| « Last Edit: Apr 10th, 2004, 10:29am by Renee » |
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Superpain
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Re: Headed to NECH next week!
« Reply #1 on: Mar 31st, 2004, 11:29pm » |
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Good Luck!
Short of going to see Goadsby in the UK, that's probably the best chance for help you could have!
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Chris
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Kevin_M
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Re: Headed to NECH next week!
« Reply #2 on: Mar 31st, 2004, 11:45pm » |
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Best of luck Renee.
Wishing you good vibes to follow you all the way there and back again.
Kevin M
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Roxy
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Re: Headed to NECH next week!
« Reply #3 on: Apr 1st, 2004, 12:06am » |
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Good luck sweetie.....  . We'll be thinking about you, but I just wish we could all have had our appointments at the same time. I firmly believe NECH will do more for you than anywhere else you could go. Those are some fabulous docs, and they do know their stuff.
I still have a hotel room booked for the two days you will be there....let me know if you want the room. I'm not booking again till Cat tells me for sure that it's ok....LOL. Looks like we're headed that direction for Cat on the 13th....then I don't go till June 22nd.
Wishing you all good things,
Tracey
BTW....anyone in CT have 02??
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Mr. Happy
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Re: Headed to NECH next week!
« Reply #4 on: Apr 1st, 2004, 12:06am » |
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on Mar 31st, 2004, 11:06pm, Renee wrote:Iappt with New England Center for Headaches next Thursday morning.
Wish me luck!
I'm glad but scared, again...BUT...hoping someone will finally be able to HELP me! |
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Don't be scared, Ren............Connecticut is a scary place, but Kev ain't far down the road......and you can get to Jonny in a few hours, as long as ya don't mind the ticks and head lice.
Swear to god cross my heart stick a black cat in cedar swamp spunk water hope these guys can get you on track. We want to know.
Advise, + or -,
RJ
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BarbaraD
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Re: Headed to NECH next week!
« Reply #5 on: Apr 1st, 2004, 4:58am » |
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Good luck Renee. If you'd go to work sometime, you might get a call from me.  Been worrying about you a lot lately. Check IN!!!!! You know how Mom worries!
Hope they find something that will work for you. My prayers will be with you....
Hugs BD
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Jackie
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Re: Headed to NECH next week!
« Reply #6 on: Apr 1st, 2004, 9:37am » |
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This is great news, Renee...
We're pulling for you, sweetie.....
Love ya,
Jacks 
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Elaine
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Re: Headed to NECH next week!
« Reply #7 on: Apr 1st, 2004, 10:34am » |
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I am so happy for you. Roxy and Cat too.
Hope you all find the answer and get some pain free time.
All will be ok.
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TxBasslady
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Re: Headed to NECH next week!
« Reply #8 on: Apr 1st, 2004, 11:22am » |
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I just know that there ARE PF times in the near future for you, sweetie.
Hang in there, Renee. Don't be scared.....I'll be with you in spirit.
Love you bunches,
Jean
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Woobie
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Re: Headed to NECH next week!
« Reply #9 on: Apr 1st, 2004, 12:19pm » |
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Hey Renee ~
I'm sending out all the vibes I can!! Check your PMs.. ok?
tina 
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Mikey
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Re: Headed to NECH next week!
« Reply #10 on: Apr 1st, 2004, 1:21pm » |
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Good luck Renee!!! I sure hope that they can do something for you, because that may mean something for some others as well ( including me).
I'll send all the prayers you can handle, and great BIG HUGE vibes too!!!
Let us know how it goes as soon as ya can!!
Mikey, 
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broomhilda
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Re: Headed to NECH next week!
« Reply #11 on: Apr 1st, 2004, 1:57pm » |
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Wishing you tons, tons and tons of luck your way!
Prayers and vibes over to you!
Hugs
Andrea
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Suck it up Princess...
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Renee
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Re: Headed to NECH next week!
« Reply #12 on: Apr 1st, 2004, 9:30pm » |
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thanks gang for all your love and support. I don't go anywhere without my laptop so I'll let y'all know what's up within 30 min. after my appt. on Thursday.
That should be somewhere around 1230ish EST, or so they said. They said the appt would take about 4 hours.
We're flying into LaGuardia tentatively so we can go non-stop instead of having to stop over in Chicago. We can fly into LGA, EWR or JFK. Does anyone know which is the easiest? According to mapquest, LGA is the closest! I hate flying!
BD,
who wants to go to the office if they don't have to? hehe
hoping to get my head where i can do some fishin' when i get back!!! gonna try fly fishing for bass!
pf 24/7 to all
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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TxBasslady
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Re: Headed to NECH next week!
« Reply #13 on: Apr 1st, 2004, 11:09pm » |
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Fly fishin for bass...??? LMFAO
It just may work......... 
Geeez..........guess I gotta get busy with that damn fly rod 
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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ShariRae
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Re: Headed to NECH next week!
« Reply #14 on: Apr 2nd, 2004, 2:29pm » |
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Good luck Renee...heres hopin you get the help you need ASAP..keep us posted..
Huggs
Shari
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Renee
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UPDATE: Headed to NECH next week!
« Reply #15 on: Apr 8th, 2004, 10:39pm » |
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Had my appt today at NECH. Got lost in NYC but found Stamford. Got lost here but found NECH.
The appt went well. Made medication changes:
upping the indocin to 300mg per day
keeping zonegran at 100mg
adding magnesium
adding coQ10 enzyme ???
switching to Relpax as abortive
Dr. Sheftel is going to call my e.r. clinic, not at a hospital but a full e.r. clinic, and have them get DHE i.v. on hand and ready for me instead of narcotics when the rescue method is required. I will have i.v. DHE and phenergan. If no side effects then he will give me rx for DHE injections for home along with phenergan. I don't have cph but ch with additional complications.
He wants me to go see Dr. Saper at Michigan (MHNI) as Dr. Saper is doing research and studies on patients that have had their craniums previously punctured and suffer from CSF pressure headaches. This will be inpatient and will probably not be until the fall as the summer is my best time of the year and it takes 2 months to get into MHNI so I'll wait until fall when all the storms and headaches kick back in, unless i find no relief this summer.
fyi...the reason i do better at higher elevations is because of the less pressure on my CSF and my CSF patch complicates my CH. Dr. Sheftel said the headaches I had in 1982 were CH episodic and in 1997 they went chronic then the botched sinus surgery resulting in the CSF patch in 1999 further complicates the CH thus why I live constantly with a kip2 all the time.
so sorry for the length!
i would highly recommend NECH to anyone! Dr. Sheftel, Dr. Tepper and Lori and the rest of the staff are so nice and very knowledgeable of CH. If you make an appt. call ahead and they will have o2 waiting for you at your hotel.
thanks for all your prayers and vibes! 
headed to nyc for a few days then back to nice warm texas! the river is still frozen here!!! 
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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cootie
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Re: UPDATE!!! Headed to NECH next week!
« Reply #16 on: Apr 8th, 2004, 11:11pm » |
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Happy cootie dancein for ya Renee !!! Wishin ya PF days ahead Pam
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Lizzie2
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Re: UPDATE!!! Headed to NECH next week!
« Reply #17 on: Apr 8th, 2004, 11:18pm » |
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Renee,
I'm glad to hear about your appointment!! I take magnesium 250mg twice a day, and if you want I can give you a link to an article on CoQ10. DHE and phenergan is what I got at the ER last week. Guess I'm glad to know that my hick hospital here is at least giving the right drugs! LOL!!
Lizzie
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Edna
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Re: UPDATE!!! Headed to NECH next week!
« Reply #18 on: Apr 9th, 2004, 12:46am » |
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Wishing you success Rene!!!
EDNA
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Charlie
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Re: UPDATE!!! Headed to NECH next week!
« Reply #19 on: Apr 9th, 2004, 4:28am » |
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Coolness Renee.
Glad you got and will be getting what looks like mondo-help for your clusters. (it's a 50s thing...)
Lots of vibes and we're in all four of your corners.
Charlie
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Renee
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UPDATE!!! NECH/Now in NYC
« Reply #20 on: Apr 10th, 2004, 10:28am » |
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In Times Square now. Can't see nothing for all the taxis. Where are all the pastures and horses? This place is too busy for a tx cowgirl!
Anyhow! Headed today to see 9/11, statue of liberty, empire state bldg, central park, etc. etc. VIA TAXI. Took the rental car back before I got killed.
It's cold here!
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Kevin_M
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Re: UPDATE: Headed to NECH next week!
« Reply #21 on: Apr 10th, 2004, 12:38pm » |
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on Apr 8th, 2004, 10:39pm, Renee wrote:| He wants me to go see Dr. Saper at Michigan (MHNI) as Dr. Saper is doing research and studies on patients that have had their craniums previously punctured and suffer from CSF pressure headaches. This will be inpatient and will probably not be until the fall as the summer is my best time of the year and it takes 2 months to get into MHNI so I'll wait until fall when all the storms and headaches kick back in, unless i find no relief this summer. renee |
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When or if you do get out this way, let me know, that is my neck of the woods. Be glad to come see you there. Ann Arbor is a great place. Hoping the best for you.
Kevin M
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Renee
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Re: UPDATE!!! NECH/Now in NYC
« Reply #22 on: Apr 10th, 2004, 7:06pm » |
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thanks Kevin M,
I'll let ya know when that time comes. Hopefully the typical summer lack of storms break will come and i'll only have ch to suffer from for a few months but, if not, i'll go ahead and make plans for michigan asap. tentatively, i'll be there this fall.
see ya then
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Charlie
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Re: UPDATE!!! NECH/Now in NYC
« Reply #23 on: Apr 10th, 2004, 7:48pm » |
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Quote:| Ann Arbor is a great place. |
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Yer right Kevin. Many moons ago I did the big Ann Arbor flea market in those freezing barns every year. "Flea Market" was a misnomer. It was actually one of the best and most active antique shows in the country. Ate a ton of knockwurst there.
Charlie
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