DD Update - Please Get Second Opinions

[woofmama]

MayK your family will be in my prayers. Thank God they did an MRI. I googled and found this organization :NIH
http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm
I would think they could refer you to the best surgeons for this condition.

 

[Rosebloom]

Prayers and dust, MayK! Please keep us posted.

 

[eh613c]

Sorry to hear about your DD's condition but so glad that you now have an answer I know that you're looking for doctors close by but I wanted to offer Children's Hospital Los Angeles as an option. I know that if one of my sons was in the same situation, I would fly across the country to get him treatment. The doctors at CHLA are top notch. How do I know? Our pediatrician was a resident there and she's amazing. Also my SIL works there as a pharmacist and has taken her son there for his issues. So please check out their website. They do have a neurosurgery department (link below). Good luck, positive thoughts, prayers and dusts to you and your family.

http://www.chla.org/site/pp.aspx?c=ipINKTOAJsG&b=3764379#.UgsOQaa9LCQ

 

[Mayk]

Thank you everyone for the recommendations.

Her files were reviewed at Seattle Children's yesterday. I will talk to the doctor today (it is 3:00 am) but got an email from him right after his review. A family connection to Seattle Children's Hospital helped. I also sent her files to the doctor that was recommended by Doctor 2 he is at Shands Gainesville. Additionally, a close friend called yesterday and is getting us worked in with a doctor at the University of Florida Neuroscience. The recommended doctor there is from John Hopkins. We also have an appointment next Friday at Nemour's Orlando. I intend to have three opinions. Prior to making any decisions. The doctor in Seattle did say in his quick review this was common surgery but critical to address soon. So I'm on the mission of soon!

As a side note Doctor 1 has yet to pick up the phone to call me to share the MRI results which have been in DD's file since Thursday and his Medical Assistant sent me an email asking if I was keeping the Pre-op appointment tomorrow. Seriously? I politely said to cancel the appointment for the Pre-Op and our Pre-registration at the hospital. How does he sleep at night! Clearly I'm not sleeping!

 

[Dancing Fire]

MayK, good luck and a lot of dust for your DD...

 

[diamondseeker2006]

Mary, that is good you have some options to explore. It really would be great if there was expert help there in FL. It would make it so much easier if any follow-up visits are required. I'd much rather do Boston or Johns Hopkins over Seattle, though, especially if I were having back pain or surgery!

 

[missy]

Thinking of you guys MayK and hoping you are all hanging in there confident it will all be OK now that you have the correct diagnosis and a number of possibilities for great surgeons and a successful treatment plan.

 

[blingymo]

Mayk, I am so sorry to hear of your daughter's diagnosis. I actually did not read all the replies, as I wanted to get right to my note.

Twenty one years ago, I had brain surgery. I was 26 and had been having severe pain. I had been to (military) doctors who blew me off, thought I was a neurotic (military) wife, and gave me muscle relaxers. During this time, I lost the reflexes in my left arm and developed some diminished and some hyper reflexes in my legs and feet. I finally got to sick call at Walter Reed, where they gave me a 48 hour referral to neuro (it was a 3 month wait for consult at Bethesda Naval Hospital). They sent me for an MRI, thinking I had a herniated disk in my neck, and found that I had Arnold Chiari Malformation with a syrinx to T5. This means that my brain (cerebellum) was hanging so low that the flow of spinal fluid (instead of going around the brain and spinal cord) was blocked and being forced down the center of my spinal cord, causing a large hole and compressed nerves down to the level of the middle of my back. I needed surgery to correct it, and was so lucky that the hole drained almost completely. I am fully functional today, but do take daily meds for nerve pain.

Long story, but Arnold Chiari and Tethered Cord can be related. Here is a great website with information and a support group forum. http://www.wacma.com/ There are also many, many referrals there.

One of the surgeons (at the time - chief resident) was Dr. James (Jim) Ecklund. He later became the chief of neurosurgery at Walter Reed. He (as an army doctor) became a very respected trauma surgeon. He consulted on the Gabby Giffords case http://www.cnn.com/2011/US/01/11/arizona.shootings.military/index.html
Two years ago, I developed severe pain again. It turned out to be a pinched nerve in my neck, which was already short the first vertebrae, which was removed during my first surgery. I found that Dr. Ecklund had retired from the Army and is the chief of neurosurgery at Innova Health System in Fairfax, VA. He did surgery about 3 weeks later when I started losing feeling in my hand. The problem completely resolved.

All this to say that I have been there, and I highly recommend Dr. Ecklund. Let me know if there is anything else I can tell you or help you with.
http://www.inovanewsroom.org/james-ecklund-md-a-neurosurgons-can-do-attitude/
His phone # (right out of my cell phone contacts: 703-970-2670)

 

[Rockdiamond]

Sending prayers and love from all of our clan Mayk.....shes' a great kid- and it's obvious has a great mom behind her.....that makes a huge difference

Doctors that are not sensitive to the patient's needs...ARGHHH!!

 

[Mayk]

Quick update...

We have two appointments next week close to home. I have a friend who is medical malpractice attorney (represents doctors) and his staff helped me vet out two doctors within about 2-3 hours of home. We are also talking to Dr Wally Krengel next week of Children's Seattle. She is in a lot of pain so I'm feeling pressure to find a solution for her as quickly as possible.

Thank you for all the suggestions. There are so many wonderful talented doctors to choose from. It helped to have my friend review credentials for me. If we don't have a good match we will keep looking until we do.

 

[PintoBean]

{{{hugs}}} Mayk! That sounds like great progress vetting out specialists.

 

[Enerchi]

Great update - happy to hear that you have vetted a few potential drs!! I'm hoping this all goes well for you next week, the close to home docs, so that whatever happens next, is easier to deal with without the difficulty of location and travel.

Poor sweet girl....

 

[tyty333]

Mayk,
So glad you are getting lots of recommendations. At 4 1/2 years old my daughter came down with scoliosis. She was sent for lots
of xrays and MRIs. We found out she had Arnold Chari Malformation with a syrnix (like blingymoe described) that was causing
Her scoliosis. Her decompression surgery was performed at Arnold Palmer Children's Hospital in Orlando by Dr. Keyne Johnson.
Everything went well and within 6 months her scoliosis was down to a very slight, not noticeable curve. Besides the very minor
Curve she has no side affects. It all happened very fast for us and it was a very scary time so I know how worried and anxious
You are feeling (plus the anger on top of dealing with the first doctor). I am keeping you and your daughter in my thoughts.
I am hoping for a safe surgery and a quick and full recovery.

Tyty333

 

[dragonfly411]

Mayk- I was just about to suggest Shands so I am really glad you are already working on it. The neurosurgery department here is top notch and they do amazing things. If you do end up down here, let me know so I can extend care packages while you all are here. We live right outside of town and would gladly provide meals or any extras you may need. Hugs to you and your daughter. You're in my prayers!

 

[Mayk]

Mayk- I was just about to suggest Shands so I am really glad you are already working on it. The neurosurgery department here is top notch and they do amazing things. If you do end up down here, let me know so I can extend care packages while you all are here. We live right outside of town and would gladly provide meals or any extras you may need. Hugs to you and your daughter. You're in my prayers!

Thank you so much! I'm actually quite anxious about the doctor there. He came highly recommended by the ortho at Arnold Palmer. The doc is Dr. David Pincus. He moved heaven and earth to get us added to an already full clinic day. We see him Wednesday. DD has been seen in G-ville before by a plastic surgeon for Postional Placigoephly. We are familiar with them and glad to have the, close by.

Tyty. They actually ordered the MRI thinking she had a sphinx. It turned out to be this instead. I love Arnold Palmers! Our ortho there is Dr Raymond Knapp. He was my choice for a second opinion.

 

[tyty333]

Im really surprised they didn't check for a tethered cord. I remember reading my daughters
Write up and it noted that the mucsle (or whatever it is that holds the cord down) was of average
thickness and there was nothing noteworthy in that area. I think the fact that she was only
4 1/2 made them think that there was something causing the scoliosis (because its not the
normal age for scoliosis to happen.)

 

[yennyfire]

Just sending hugs to you and DD MayK! I hope that the appointments go well and you feel strongly about 1 of the doctor's so that it isn't a difficult choice. Being under pressure (due to poor DD's pain) is such a tough position to be in! Hang in there....getting a proper diagnosis was a HUGE step and hopefully, all of this will be behind you before you know it!

 

[SB621]

Mayk I'm thinking about you today and hoping things are falling into place. Sending you lots of love, encouragement and strength!

 

[Rosebloom]

Thinking of you and your DD, Mayk! She's a teenager, correct? What a challenging time for you all.

 

[Aoife]

Mayk, my DH and I have been traveling so I didn't see your post until now. I'm sending prayers and positive thoughts your way, both for you and your brave, sweet daughter. I'm so sorry that the original orthopedist has been unworthy of your trust, but very happy that you finally, finally know what is causing your daughter's pain and other symptoms, and that she will soon be in good hands.

Please keep us posted, and much PS dust coming in your direction.

 

[ame]

Glad you it that 2nd opinion and I hope you're able to get it handled ASAP

 

[kenny]

Mayk, big hugs to you and your daughter.

 

[Mayk]

Thank you so much everyone.... it truly is the support of my friends and DD's courage that keeps me focused and moving ahead.. She and I couldn't be more anxious about our appointments next week.

 

[diamondseeker2006]

{{{{{hugs}}}}}

 

[missymoo]

Dear Mayk, I hope things are going well and you are in the hands of the best.

Love to your daughter!

 

[Mayk]

Thought I would post an update....

We have been home two weeks and things are getting smoother everyday. We're not without challenges but the good news as of three days ago she's off Narcotics! This is a HUGE win because that drug was the one that complicated her condition that sent us back to the PICU...
She is doing Phyiscal Therapy three times a week and last week started doing school work from the computer completing homework assignments. She's on homebound school but the county hasn't found a homebound teacher yet so we are doing it ourself and I hired a math tutor to help me... since I can't do it all. Two more weeks of homebound and she will try and return to school on 10/28 which will be 6 weeks post surgery!!! We ARE VERY EXCITED!!! She will have a student helper for about two weeks at school and she can use the elevator at school so no steps with books..etc.. so things are really starting to fall into place..

Again..THANK YOU SO MUCH!!! for the support, good thoughts and prayers and dust... mostly thank you Enerchi.. for the 1001 text messages with medical suggestions and explanations and research as I sat in the hospital and tried to make sure I was a good advocate for her!

 

[tyty333]

So happy to hear that things are going well! You're finally at the point where you can see the light at the end of the tunnel. I hope
you are able to relax a little now. Its really tough on a body /mind to have to be strong for so long.

Dust for continued healing!

 

[AprilBaby]

Fantastic!!!!

 

[movie zombie]

that is such great news!

 

[madelise]

Thought I would post an update....

We have been home two weeks and things are getting smoother everyday. We're not without challenges but the good news as of three days ago she's off Narcotics! This is a HUGE win because that drug was the one that complicated her condition that sent us back to the PICU...
She is doing Phyiscal Therapy three times a week and last week started doing school work from the computer completing homework assignments. She's on homebound school but the county hasn't found a homebound teacher yet so we are doing it ourself and I hired a math tutor to help me... since I can't do it all. Two more weeks of homebound and she will try and return to school on 10/28 which will be 6 weeks post surgery!!! We ARE VERY EXCITED!!! She will have a student helper for about two weeks at school and she can use the elevator at school so no steps with books..etc.. so things are really starting to fall into place..

Again..THANK YOU SO MUCH!!! for the support, good thoughts and prayers and dust... mostly thank you Enerchi.. for the 1001 text messages with medical suggestions and explanations and research as I sat in the hospital and tried to make sure I was a good advocate for her!

I'm so so so happy everything is turning around, and that she's healing nice and smoothly! I can't imagine what it's like to be a kid her age dealing with all of this. She is so lucky to have you as her momma. So so so lucky.