Share your Positive/Successful/Surgery with TCI

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Share your Positive/Successful/Surgery with TCI

Postby DeeHall » Fri May 08, 2009 11:31 am

I want to give the newly diagnosed a opportunity to see how any people have had positive experiences at The Chiari Institute.

I have been a patient of TCI's since October 2007. I have had multiple surgeries/procedures including..invasive cervical traction, tethered cord surgery, anterior cervical discectomy w/fusion & craniocervical fusion w/craniotomy.
My experience with th surgeons ( Dr Milhorat & Dr Bolognese) has been wonderful. I have seen a few of there neurologists.. Dr Shelat & Dr Kula..some of which aren't there anymore..Dr Chen & NS Dr Roonprapunt.

I hope that this wont be removed..please give people the opportunity to be supportive to the Doctors that have saved their live's. Thank you

Be Well
Dee
"Don't deny the diagnoses. just defy the symptoms that come with it" Norman Cousins

http://deehallstory.blogspot.com/
DeeHall
 
Posts: 182
Joined: Thu Aug 23, 2007 7:15 am
Location: Wallkill NY

Re: Share your Positive/Successful/Surgery with TCI

Postby selmaS » Fri May 08, 2009 12:31 pm

Hi...I haven't had my surgery yet, but am scheduled at TCI on May 27th.....I am saddened by the media's portrayal of these fine drs and am happy with the kind and patient way the drs explained everything to me.I did alot of research, and had e-mailed Dr B for a few months prior to my TCI appointment and he was forthcoming with tests and suggestions on what I could do in my area so my insurance covered most all my testing.I sent an e-mail around 9:30 pm and got a responce at 9:32pm.....

I feel privliged to be treated by these fine drs at TCI.
Good luck
Godspeed
"selma"
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Location: Allentown, PA

Re: Share your Positive/Successful/Surgery with TCI

Postby mommi007 » Fri May 08, 2009 12:54 pm

Hi...I just wanted to say I had a good experience at the TCI. I felt they were very thorough in review of my medical information. The explanations of my diagnosis and opportunity for ALL my questions to be answered was great and appreciated. I saw Dr. Shelat and he was awesome..down to earth..really great and I saw Dr. Insinga, he as well was great and answered all my questions. These doctors are the only ones who understood my symptoms and provided the accurate information that I need in order to hopefully start a road to a more stabilized life.
Trish
Chiari Malformation-0, Thoracic Syringomyelia, 2-3mm T1-T9 and "possibly Cervical too", "possible"-Ehler's Danlos Syndrome, Cranial Settling, Spinal Dysraphism (form of Spina Bifida)
KNOWSMCM.ORG
mommi007
 
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Re: Share your Positive/Successful/Surgery with TCI

Postby hbananax0 » Fri May 08, 2009 2:05 pm

What a great idea!

I've been a patient of TCI for just under a year. The first time I went I was diagnosed with chiari 1, tethered cord, eds, cervical instability, scoliosis, retroflex odontoid, and maralgia parestetica. In september I had my first ICT and was supposed to have a PFD. But, because of my cranial settling, it was canceled and Dr. Milhorat and Dr. B wanted to try treatment without a fusion first. My mom loved this idea because it showed that they were not surgery hungry and won't cut if they arn't positive that it will help you. After going back in december, my fusion and PFD was planned. I had ICT, CCF, and a FPD on January 28th, 2009. I knew going into this that it would make my tethered cord worse, but they couldn't do the tethered cord surgery first because it would make my severe cranial settling much worse. My surgery was about 9 hours and I was in the PICU (pedi ICU) for five days, then one day in the regular pedi unit. After about two weeks post-op my headache was gone, and it stayed away for almost two months. However, my tethered cord did get worse just like I was warned. My headaches are back but Dr. B and Dr. Milhorat are positive that they will go away after my tethered cord surgery. I am too. All and all, I consider my fusion and PFD a success because it stopped my progressive issues and has made it sothat I no longer pop my neck out of place.

My mom and Dr. B have been in constant contact since last augest when I first became a patient of TCI. They continue to try anything possible to help make me comfortable while I wait for my next surgery. The thing we are most impressed with is how quickly Dr. B answers our emails and how quickly you can get emergency appts. Last december I decided on the 2nd that I couldn't handle the headache anymore, we were in NY for my appts on the fourth or the fifth im not sure. So far Dr. B and Dr. Remy have been the only surgeons that I really like (and trust).

About Dr. Remy,
He is my favorite doctor that we've been in contact since I first got sick. During both of my ICT's he sat with me and just talked while the other doctors took the measurements. He explained everything in a way that I could understand, but at the same time, I didn't feel like he was talking down to me. He even came in on his day off to see how I was doing after my surgery.
Chiari 1 Malformation, EDS, Tetherd Cord, Cervical Instablity, Cranial Settling, Occipital Neuralgia, Retroflex Odontoid
ICT @ TCI 9-26-08
ICT, PFD and CCF Oc-C4 @ TCI 1-28-09
http://www.caringbridge.org/visit/hannahpatry
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Re: Share your Positive/Successful/Surgery with TCI

Postby hedzap » Fri May 08, 2009 7:34 pm

I liked Dr. Remy, also.
Debbie
EDS
cranial settling
ventriculomegaly
craniocervical instability with pannus and brainstem compression
syringomyelia
TCS 5/08, lumbar pseudomeningocele
craniocervical fusion to C-6/PFD 7/08
hedzap
 
Posts: 59
Joined: Tue Mar 04, 2008 2:51 pm

Re: Share your Positive/Successful/Surgery with TCI

Postby DeeHall » Fri May 08, 2009 10:11 pm

I love Dr Remy! He is awsome! Since I had 3 surgeries & 1 surgical procedure in 4 months...he knew me well. When I went in for my CCF w/craniotomy.. I asked who was going to give me my hair cut? Dr Remy was the lucky one. I asked for a special hair cut.. I wanted a flap of hair left at the top..if possible. I called it the comb over..kind of like what the old men do to cover their bald spot! He thought this was very funny..and a great idea. A friend of mine that had her pfd a couple months after me...also requested the Darla do..or comb over! He was happy to oblige!

Gotta love the little things in life that make us happy!!
"Don't deny the diagnoses. just defy the symptoms that come with it" Norman Cousins

http://deehallstory.blogspot.com/
DeeHall
 
Posts: 182
Joined: Thu Aug 23, 2007 7:15 am
Location: Wallkill NY

Re: Share your Positive/Successful/Surgery with TCI

Postby hbananax0 » Fri May 08, 2009 10:45 pm

Haha, same here. I spent quite a bit of time in the OR last fall/winter. For my fusion we requested Dr. Remy and he was on my case but last minute he was swiched. That made me more nervous so he was able to "re-swich" and get back to me. I also requested Mike to do all the computer stuff because he was also very nice while I was in the traction. After a few visits you really start to trust certian people.

I was really glad I had the option for what team was in the OR during my surgery. They did this because my mom didn't handle holding my hand during the ICT the first time all that well, so we removed the extra nerves from the OR. I also had the child life specialist Jenn with me the entire time I was awake.
Chiari 1 Malformation, EDS, Tetherd Cord, Cervical Instablity, Cranial Settling, Occipital Neuralgia, Retroflex Odontoid
ICT @ TCI 9-26-08
ICT, PFD and CCF Oc-C4 @ TCI 1-28-09
http://www.caringbridge.org/visit/hannahpatry
hbananax0
 
Posts: 265
Joined: Wed Jan 07, 2009 5:56 am

Re: Share your Positive/Successful/Surgery with TCI

Postby wendi » Thu May 14, 2009 2:20 pm

I loved Dr Remy Too. He was there B4 my TCS and he came in for some of my Post op visits.

I owe some of what is my normal life to Dr B and Dr M.

I have posted my success story here. There is a thread.

Take care,
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
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