Author Topic: Looking for dr. @Johns Hopkins, Baltimore, MD  (Read 6136 times)

HCSTARWIND

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Looking for dr. @Johns Hopkins, Baltimore, MD
« on: December 14, 2008, 12:07:32 am »
Hello from an old ANer.. I have been on the watch and wait mode for the past 2+ years. My neuro. symptoms are escallating. I have facial numbness and weakness in my lower lip and neck area now. I recently had a tregiminal neuralgia attack that was very painful. I am on Baclofen. I had an MRI with dye of cervial spine and head on Friday. No results yet. Should find out Monday. I also have Cervical fusion of C6-7 with a protruding C5-6 disk sl. compressing the spinal cord. So as you can see the sequalea of neurologic symptoms have now increased. I am planning to go to Johns Hopkins Hosp. for a consult on all of the above. I have had it! I am now out of work. Can anyone enlighten me on who to see there. My Dr.s here do not know anyone to recommend but feel it is time to have a new set of eyes on me. Any help would be appreciated. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

Tisha

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #1 on: December 14, 2008, 06:40:01 pm »
One of the head AN doctors at JH is Dr. Daniele Rigamonte.  If you don't live in the area, you can send them the MRI's for them to look at for a recommendation.  However, it is a written recommendation and they charge you for it.  I think it's better if you live there and can see them in person.

tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

HCSTARWIND

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #2 on: December 14, 2008, 06:59:54 pm »
Thank you Tisha for responding. I am planning to go down after the holidays. My daughter lives in Alexandria, VA. She is one of the reasons I chose Johns Hopkins. I hope I can get some recommendations both surgical or radiation. I do feel my neck disk problem is causing more of the symptoms but coupled with the posterior fossa tumor and trigeminal neuralgia I am miserable. I hate to complain because others on here have had far worse tumors and symptoms. I didn't stay in touch because I thought if I just got fit, healthy then all my symptoms would go away. So I lost 50lbs and 30" and am the most fit I have every been in years. Happy about that but still getting progressively worse. DR. thinks I may have MS. Can you tell I'm nervous about my MRI results coming on Monday?  Thank you again. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

elderbirds

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #3 on: December 14, 2008, 07:36:46 pm »
Hi Helen,
I had surgery in April 2008 at Hopkins.  there are many good doctors there.  I used Dr. Michael Holliday and Dr. Jon Weingart.  There were wonderful.  If you send your MRI to Hopkins Dept. of Neurosurgery, they will review them and recommend one of the docs that would match.  If you want to talk, pm me, I'd be more than happy to talk to you.  Good luck in your search.
Hope

Kim Zingale

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #4 on: December 14, 2008, 09:27:19 pm »
Hi Helen,

I haven't had surgery yet, but I'm pretty sure that I'm going to use Dr. Carey (ENT) and Dr. Tamargo (Neurosurgeon) at Johns Hopkins. I've met Dr. Carey, and he has been very helpful in explaining things to me and is very patient and friendly. I haven't met Dr. Tamargo yet, but I think he'll be good too. I am very impressed with Johns Hopkins as a facility so far as well. Let me know if you have any questions.

Take care,
Kim
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

HCSTARWIND

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #5 on: December 15, 2008, 10:00:20 am »
Thanks everyone for the help. I will give this info to my neurologist. He can make the referral for me. I think I'd get in faster if it comes from a doctor. Elderbirds I will pm you regarding this issue. Thank you all again. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

staypoz

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #6 on: December 19, 2008, 01:22:10 pm »
You can probably get appointments with both the surgical as well as the radiosurgery/radiation teams on the same day.  It's a lot to absorb in one day, but if your tumor is such that you can consider all modes of treatment, it's probably worth your while to see if they'll do that for you.  The Washington-area support group meets in January and I'll give you details if you pm me.  Several members of the group (myself included) have been treated there. 

staypoz

jcc1138

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #7 on: December 19, 2008, 06:02:54 pm »
Dear HCstarwind:
I will be seeing Dr Rigamonti. If you need to call the number is 410-614-2886 and ask for Lynn or Sharrone for an appointment. I called directly, but I would not have known who to call but for this group! I will be up there at the end of the month and if you PM me, I can give you my opinion of them after I see them. Be prepared for about 1/2 of a day with them (Neurosurgical and Radiosurgery). I am also seeing Dr. Walter Jean at Georgetown in Jan as well  for a second opinion. (he stated about 1 hour, plus or minus)
Good luck!

Jeff E

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #8 on: January 02, 2009, 09:27:49 pm »
I recently had my surgery at Hopkins with Dr. Tamargo and Dr. Minor.  They (and Hopkins in general) were simply fantastic.  Feel free to contact me directly if I can help in any way.

Jeff
1.3 cm AN - left side
Retrosigmoid Surgery - 10/2/08
Platinum Weight - 10/7/08
Johns Hopkins - Dr. Tamargo / Dr. Minor
http://acousticneuroma.wordpress.com/

HCSTARWIND

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #9 on: February 24, 2009, 10:25:43 pm »
Hello...I realize this is a late post but I wanted to update those of you who responded to me regarding Dr.'s at Johns Hopkins.

I had surgery on Feb 2, 2009 at Johns Hopkins with Dr. Weingart. It turns out that I had Cervical stenosis and spondoloysis of C 5-6 that was causing myelopathy in my extremities so I could not put things off. I had my second c-spine fusion with titanium plate and screw fixation. I am 3 weeks post-op and doing fairly well. I also had an eval on my AN at that time. Where it is still small, and in the IAC and possibly a lipoma vs an acoustic neuroma, they suggested that I cont. to monitor it with periodic MRI's. I want to thank everyone on this site for their support and info. at arriving at a decision and a physician for surgery. I will be forever grateful and will continue to contribute to ANA for there cause to see that every person who has need of info and support will obtain it from this site. Thank you again. God Bless.

Watch and Wait
Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

solady

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #10 on: March 05, 2009, 03:42:31 pm »
To HCSTARWIND,  If you decide to consult with JH, hopefully, your interview will not be with Dr. Kleinberg (radiosurgery).  I and another have had bad experience with appointment and question.  Neurosurgery is a different matter.  Dr. Tamargo is interested in what questions/concerns and will give you an honest opinion, etc.  I am sorting and weighing decision as to which way to go; glad it is not urgent.  Best of luck.

Nancy   

suboo73

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Re: Looking for dr. @Johns Hopkins, Baltimore, MD
« Reply #11 on: March 05, 2009, 08:32:18 pm »
Hi Nancy! I just read your post, and i had a similar experience at Hopkins.  Dr. T was very patient and answered all questions/concerns.  Then i had an appt with Dr. K about radiosurgery.  Both appointments on the same day was quite alot to absorb.  But, more importantly, i was not prepared to hear that they did not do fractionated treatments anymore (at least that is what my husband confirms he heard in the consultation!) and that they use GK (Gamma Knife).   Ok, i didn't even know they had a GK machine! - Well, i am in W & W mode, so am glad i have time to do more research. 

If you have ANY questions, this is such a wonderful place, with WONDERFUL people!  I read all the stories, good and not so good. 
Everyone here inspires me to be strong, continue the 'quest' for answers and not be afraid.

Keep in touch, ok and i will keep you in my thoughts and prayers!

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W