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DD Update - Please Get Second Opinions

Mayk

Mayk

Ideal_Rock
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Joined
Feb 12, 2011
Messages
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I haven't posted an update because we had been waiting on results of an MRI... today was the day. As luck would have it I'm traveling and so today has sucked and it's been a long day from about 2:30 p.m. on...when I received the phone call.

DD was diagnosed today, following last week's MRI, with a Tethered Spinal Cord and this was the cause of the Scoliosis and the pain she has been experiencing that Doctor #1 kept making excuses for and passing off as muscle weakness. Doctor #2 within 10 minutes of seeing her was writing an order for an MRI which Doctor #1 after two years and six months and with surgery planned on his schedule had still not ordered. Not sure why, but I plan to understand that in the coming days.

This means there will be no Scoliosis surgery as planned for 8/30 as we are now on an agressive hunt for a Neurosugeron who specializes in this type of surgery. There is no one local... so I'm turning to my PS friends. If you have suggestions toss them out, I'm headed to the first specialist that can get her on the schedule in the continental US. We are currently persuing Seattle, Akron, Cleveland, Orlando and Charlotte. This all happened late this afternoon so we will be on a full court press this week to get on someone's schedule.

My blessing..I have a daughter who is mentally strong as steel and braver than anyone I've ever met.. and I have great insurance and don't need a referral I can pick anyone I want to do the surgery. I just want to be moved to the front of the line. She's been in pain long enough.

Please everyone, don't settle in today's world for one opinion. Know the facts, ask tons of questions, take notes and seek to understand the things you don't! These doctors while they are healers they are also human and capable of making mistakes.

We are a praying family and we will be praying hard for the right doctor to be found and for this surgery to end her pain and start her journey toward a pain free life.
 
Oh gosh, Mayk, I'm sorry your daughter has been going thru all that for so long. I'm glad you got a second opinion for her tho. I don't know of any surgeons, tho, I'm sorry. Did the 2nd Dr have any suggestions?
 
packrat|1376355539|3501765 said:
Oh gosh, Mayk, I'm sorry your daughter has been going thru all that for so long. I'm glad you got a second opinion for her tho. I don't know of any surgeons, tho, I'm sorry. Did the 2nd Dr have any suggestions?
Click to expand...


Thank PR... Doctor #1 has yet to call (the MRI was at his hospital and the results would have been posted to DD's file last week), Doctor #2 called me today and while I was in shock while he was telling me.. he suggested I check close to home without a referral. After finding there is no one close to home listed on the local children's hopsital website... I called back and asked for referrals of course after 4:00 p.m. so I'm waiting for a return call tomorrow. Today was too long in some ways and in others not nearly long enough! :eek:
 
Have you looked at Children's Hospital of Philadelphia (CHOP)? They have a neurosurgery department and CHOP is really world class. Here's the website: http://www.chop.edu/service/neurosurgery/?team=true

Good luck to you and your daughter-I hope she has a successful surgery soon!
 
mayK... I'm so pissed on your behalf! your poor sweet DD has endured FAR MORE than she needs to! I'm so sorry you both have to go thru this... what a sweetheart of a daughter she is!

I have no info on neurosurgeons in the US, but I do pray that the universe will give you the right surgeon for her care. DUST DUST DUST...

I don't know what else to say, but I am DEFINITELY thinking about all of you at this time - HUGS to you and DD :halo: (((((HUGS)))))
 
Oh Mayk! Thank goodness you got a second opinion! I don't have any recommendations, but will keep you and your beautiful daughter in my thoughts and prayers. I hope that all of this is just a memory soon and that you are able to put this behind you forever.
 
Wish I could hug you right now. Sending virtual hugs instead. Best of luck finding a specialist and getting her pain resolved as soon as possible.
 
No advice but prayers for a you find a good surgeon, hugs to you and your sweet dear daughter.
 
Damn it PS just ate my post. ugh

Feel free to contact me offline if you have questions.

Duke
John Hopkins
Abington memorial Hospital
UCLA
Northwestern
Hospital for Special Surgery (New York City
Mayo Clinic (MI)
 
Mayk|1376354575|3501758 said:
.......Doctor #2 within 10 minutes of seeing her was writing an order for an MRI which Doctor #1 after two years and six months and with surgery planned on his schedule had still not ordered. Not sure why, but I plan to understand that in the coming days.
Click to expand...


first, I am so very very glad you got that 2nd opinion!
2nd, i'd love to be a fly on the wall when you have your discussion with dr #1!

how on earth could he have even considered doing a surgery w/o having done an MRI first?!

geez........
 
Mayk, thanks so much for the update. I know that you and your family have been going through a lot with this. Hugs to all of you xxxx Your daughter sounds amazing.

So, what about coming to Boston for the surgery? There is Children's Hospital. Also there is MGH, and Beth Israel. I think these are reputed to be some of the best hospitals in the States? You'll have to do some research, of course, but Boston is a medical center of excellence so perhaps a great specialist is here for you.

If you want to know more about Children's and MGH you could watch Boston Med, a documentary series about the hospitals: http://www.youtube.com/playlist?list=PLAB5AEEE8287EEDBA

If you come to Boston, here is a great, inexpensive place to stay in a lovely historic district close to the hospitals. The owner is very nice and there are kitchens so you can self-cater. The hotels can be very expensive. http://www.lacappellasuites.com/
 
I will ask my colleague, she had some rare form of scoliosis that 98% of the surgeons wouldn't even touch. They told her she would be crippled and in immense pain for the rest of her life. She had surgery in St. Louis I will get her surgeon's name. Good Luck.
 
I can't offer specific advice, but I can offer PS solidarity, hugs, and high fives! So glad you got that second opinion!
 
I am so glad you were finally able to get a correct diagnosis, but so mad for you that you had to wait so long! It sounds like a lot of people here have some great suggestions. I am so thankful that you will be able to choose who to do the surgery. Many prayers for your DD's swift and easy recovery!
 
Oh my goodness, Mayk! Your daughter's impending surgery had been in the back of my mind all month. I am SO glad to hear you've received a proper diagnosis and that you got a second opinion! I am sending you and your amazingly strong daughter lots of hugs and positive thoughts right now, and hoping that you are able to find an amazing surgeon who will be able to help her to a full recovery.
 
MayK, I am so glad you got a second opinion. Yes doctors are human and make mistakes but I just don't get that the first doctor didn't order an MRI before wanting to do an invasive surgery. Thank goodness you had the presence of mind to get a second opinion. I don't have any recommendations on great surgeons in this field but I am keeping you and your daughter in my thoughts and prayers for a successful resolution and for a pain free future ahead for your dd. And sending lots of hugs and positive thoughts your and your dd's way!
 
Sorry to hear DD's first doctor overlooked the MRI which, in turn, prolonged DD's pain and almost caused her to have unnecessary surgery. Getting a second opinion is very important. Glad the second doctor came up with a different diagnosis so you can move on to more productive treatment.

I would recommend Drs. Allan Levi and Barth Green at the University of Miami Spine Institute.

http://uhealthsystem.com/patients/spine-institute
 
Mayk - prayers for success in today's search.
 
Nothing to add except a lot of prayers.
 
Rush Presbyterian in Chicago has a fabulous spinal/neuro dept.
 
Mayk- If my son needed a neurosurgical procedure, I would not think twice and would take him directly to Johns Hopkins in Baltimore. It is where I trained, though in another field. Dr. Jallo is great, as is Dr. Ahn. I think the (very famous) Ben Carson is retiring or has cut back significantly. IMO, the best neurosurg dept in the country. And great pediatric anesthesiologists, as well :))

http://www.hopkinschildrens.org/george-jallo-md.aspx
 
icekid|1376439636|3502444 said:
Mayk- If my son needed a neurosurgical procedure, I would not think twice and would take him directly to Johns Hopkins in Baltimore. It is where I trained, though in another field. Dr. Jallo is great, as is Dr. Ahn. I think the (very famous) Ben Carson is retiring or has cut back significantly. IMO, the best neurosurg dept in the country. And great pediatric anesthesiologists, as well :))

http://www.hopkinschildrens.org/george-jallo-md.aspx
Click to expand...

Advice from a doctor is good, too! Looks like two great recommendations!
 
Mary, I am so sorry for all you and M have been through. Thank God you went to this other doctor!!! I will be praying that you find the very best doctor in the world to do her surgery and that she is completely healed! Hugs to you!
 
I would definitely consider Johns Hopkins in Baltimore for something this important and delicate.

I am sorry for your anguish but hope you have good answers very soon!
 
Mayk, I am so sorry to hear how much your daughter has been suffering. I am very glad they finally made the correct diagnosis. My prayers are with you and your family, hoping for good news soon.
 
You can also check out NIH in Washington DC and UVA in Charlottesville, VA. Not sure how they handle pediatric patients, but they have excellent neurosurgeons, so would be worth a look.

My prayers are with you and your family!
 
My colleague recommends Dr. Keith Bridwell at Barnes-Jewish in St. Louis but also said that Boston Children's is top notch.
 
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