Author Topic: Going to see Jackie this month  (Read 6121 times)

micca82

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Going to see Jackie this month
« on: April 03, 2012, 07:28:53 am »
Hi all,

Hope evryone's doing well.
I have an appointment to see Jacie Diels at the end od this month and wanted to ask you for hotel recommendation. University of Madison gave me a list of hotels and I don't know which one to choose? I wasn't planning on getting a rental car while I'm there for three days but do you recommend it? Any advice is greatly appreciated! Thank you!
MRI found 5.1cm AN on left on 3/18/11: age of 28
Surgery 4/5/11 with dr.Tamargo and dr. Francis. @ johns Hopkins
Whole tumor removed, facial nerves in tact, but unresponsive
Platinum eyelid weight on 4/6
Left facial paralysis, numbness, double vision

God is the Healer

saralynn143

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Re: Going to see Jackie this month
« Reply #1 on: April 03, 2012, 07:46:44 am »
I don't have any recommendations for you, sorry, but I wanted to wish you all the best.
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Cheryl R

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Re: Going to see Jackie this month
« Reply #2 on: April 03, 2012, 09:16:20 am »
There is a Hampton Inn to the west by the mall.  If you keep on the beltline going west and then it swings north some there are several along there.  I can't remember the exit name.       There is a Holiday Inn with a neat water park.    Might cost more but was very nice.  Probably no free breakfast.     We had a daughter go to grad school there and lived in the west area.        Jackie is up Whitney Way and in a group of buildings that was a bit tricky at first to see which building.    This has been a while since there. I saw her for a half day session quite some time ago.       You will need a car.          Downtown is a busy area so never did much there but they have good eating places.                 This isn't great help.  I miss Madison as really liked it.                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Cheryl R

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Re: Going to see Jackie this month
« Reply #3 on: April 03, 2012, 09:18:58 am »
I meant to add that Jackie is super and wish you well with your visit.     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

deheisel11

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Re: Going to see Jackie this month
« Reply #4 on: April 03, 2012, 12:10:36 pm »
My wife and I stayed at the Holiday Inn on Fourier Drive.  We used the Housing Coordination Dept. (608-263-0315) that was listed in the papers that they send you.  You get discounts at the hotels through the service.  Some of the hotels have shuttle service (as ours did) but we got a rental car to see the sights in Madison while we were there.  It is a great city to visit.  You will have an excellent time with Jackie.  She is impressive.
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.

mandy721

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Re: Going to see Jackie this month
« Reply #5 on: April 11, 2012, 08:26:38 pm »
Ken has seen Jackie twice and both times we stayed at the Staybridge Suites in Middleton.  THe hotel is comfortable and offers breakfast and light dinner a couple of days a week. There are also a number of good restaurants within walking distance.  Middleton is a fun place to walk around and a visit wouldn't be complete without a visit to the National Mustard Museum.

When Ken visited  Jackie last May, we added a few days to our trip and had a great time exploring the Madison area. It was so much fun!  The second trip in Jan was only three days.  I thought about  relying on the hotel shuttle, but decided against it. I like the flexibility of having a car and was concerned about having to get up very early and then waiting to be picked up.  You could call  the Housing Coordination Dept at the UWMC and get their thoughts based on your needs. I spoke with someone after being overwhelmed with the choices and  narrowed down the list based on location and we were very pleased with our choice.

Jackie is a treasure.  Ken suffered  severe facial nerve damage during his surgery.  He saw Jackie about 18 months after surgery and the time and therapy has done wonders for his face.  There's been significant improvement and we are hopeful that it will continue to improve. 

Have a great trip.
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

micca82

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Re: Going to see Jackie this month
« Reply #6 on: April 14, 2012, 09:01:45 pm »
Thank you all for your helpful advices. Just wanted to let you know that my neurosurgeon was very reluctant to write me a referral to go see Jackie. I really don't appreciate his attitude--he said he doesn't know how OT (or facial retraining) can be helpful, he hasn't seen/read any research/study on this. My husband argued him about it and was able to get him to write me a referral, but this whole process really disappointed me. I was really looking forward to meeting with Jackie this month, and my neurosurgeon really killed the excitement for me. :( Hope Jackie can prove him wrong!
MRI found 5.1cm AN on left on 3/18/11: age of 28
Surgery 4/5/11 with dr.Tamargo and dr. Francis. @ johns Hopkins
Whole tumor removed, facial nerves in tact, but unresponsive
Platinum eyelid weight on 4/6
Left facial paralysis, numbness, double vision

God is the Healer

mandy721

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Re: Going to see Jackie this month
« Reply #7 on: April 14, 2012, 11:15:37 pm »
Trust me and the others who revere Jackie Diels, seeing her has made a world of difference in my husband's life.  Not many surgeons are familiar with her work and are more likely to refer patients to plastic surgeons for facial reanimation procedures. At about a year, that's the option Ken was given, but he didn't want to go through any more surgery that wasn't essential.  We learned about Jackie through a member of our local support group. Seeing the results of her visit with Jackie  were inspiring and gave Ken an idea of how much progress could be made through facial retraining.      I hope you can file the neurosurgeons lack of knowledge about Jackie in the back of your brain and open some space up for excitement.   She is a gifted therapist and a wonderful person.  She wouldn't be seeing you if she didn't think she can help you regain facial function. 
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Cheryl R

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Re: Going to see Jackie this month
« Reply #8 on: April 15, 2012, 08:25:16 am »
Your dr needs to read her info on www.bellspalsy.ws.        I am glad you get to go as she is so nice and a big help to so many!
                                                                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

cakulmom

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Re: Going to see Jackie this month
« Reply #9 on: April 16, 2012, 07:39:35 pm »
On the road for a living. And live in Chicago area.  So Priceline  a hotel in the Middleton area of Madison (3 star or above) at about $65 and you should get a Residence Inn or such.  Hotwire is also good to use.  And you can check Roomsavers.com.  Also good for reasonable hotel rates. 
The Gypsy :)
Age: 61 on Jan. 4.  Retrosigmoid for 2.2 cm AN on Nov. 30, 2010. Loyola-Leonetti & Anderson.
SSD left AN side.
There is nothing "benign" about this tumor.

Grateful_1

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Re: Going to see Jackie this month
« Reply #10 on: April 29, 2012, 10:57:14 am »

Please let us know how things are going with your visit to Jackie.  Hope all is going or has gone well. 

Thanks!
St. Louis University Hosp., St. Louis, MO
Drs. A. Mikulec and D. Sasaki-Adams
12/28/10 - Translab surg for 2.5cm AN on right
1/13/11- lumbar drain, pulmonary embolism
3/11/11 - menengitis
4/12/11 & 5/26/11 - CSF leak repairs
SSD, facial paralysis, balance issues, fatigue