Heard From NS #5
 

Hi, hope all is well with everyone! Not sure if enyone remembers, but Hayley has two arachnoid cysts causing hydro. Located in suprasellar region, squashing pons on brainstem, effacement of optic apparatus, pituary gland septated around optic nerves etc. etc. etc. Born with this, major crainitomy, shunt, 2 revisions. Now has endocrine problems, has to take growth hormone supplementation B/C gland not producing any. Found about a year ago cyst grew back a bit, (cannot be removed totally, only fenestrated). Also has slit vents. Current NS and one in NYC say watch closely for "sliding in wrong direction" before doing anything (i.e. valve replacement and another fenestration via craintomy). So Dr. Walker threw a wrench in everything at the Hydro assoc conferance saying it should be addressed right away. Another NS in San Diego, referred by a friend, looked at films and said the same. So I contacted DR. Rekate in Az, sent films etc, finally heard from him, said plan was to do consult, myelogram , either clamp shunt and do ICP monitor or revise, since "overdrainage is malfunction", maybe the fenestration. So I emailed back saying I would be willing to go for consult and tests, but did not want to decide on surgeries until after those, I will then present results to her NS in Boston, B/C I am not having her undergo major surgery so far away! So, maybe some light at end tunnel.

I am so glad you are getting some feedback. I hope you can get something figured out so that she can get back on track, and you can get some rest for you mommy brain and heart.

Update
 

Got her latest eeg results, abnormal due to backgound slowing around cyst (damage) but no ictal (sp?) events. Cool. Had a bad fall at the playground about a week and 1/2 ago. Was about to step onto slide (had one foot on it)to go down (about 5 feet), I was waiting at bottom, then suddenly fell backwards through a gap in the bars that surround the platform, happened so fast no one could reach her. Fell onto a platform about 2.5 feet down, hit her head good, then fell to the ground. Hubby said the thump on the head was pretty loud. Cried for a bit, checked her out, seemed ok. No signs of head injury thankfully. My heart attack for the day! Now for the last three days she has been very cranky and holding her head a lot, like her headaches have ramped up, so called NS, doing a CT tommorrow to be sure nothing manifested itself, as they can do a couple of weeks later.

Bless your heart! I bet that is playing over and over and over in your head. Hope all turns out well!

Hi,
I am sorry to read Hayley took a bad fall, glad to hear the neurosurgeon is taking a CT How did that go? Hope all is good {{Hugs}} It made my Mommies heart jump just to read about it :(

I think waiting to decide on surgeries until after those tests are done is a good idea too and I understand not wanting to have her undergo major surgery so far away, even though sometimes we must travel to get the “right doctor” I wish Denese was here to give her opinion, remember she took her son to Rekate from Florida. So here I go with my possibly to late suggestion
Dr Walker and Dr Rekate are some of the best, but there is one Neurosurgeon who is exceptional, he is at Stanford and his name is Dr. Edwards, Dr Edwards, Dr. Walker and Dr. Ciricillo did a debate on hard and unusual cases at the San Francisco Hydro Conference and I was amazed and in awe to how smart and different Edwards and Walker were, in my opinion Rekate and Walker are old school tested and true, the best in there class but Dr. Edwards is new school, and was amazing, if it is possible maybe you could go for one more opinion and mail off info to Dr. Edwards at Stanford. I know this is late but Edwards and Circillo were the most impressive neurosurgeons I have ever heard speak. I with Austin have also seen some of the best, but if Austin has any more Hydro or Cyst complications I will seek out Dr. Edwards.
I hope Hayley is doing well, and her CT came back good. Keeping Hayley in my well wishes and prayers
love to you and yours
Deborah

Here is Dr. Edwards info from the Hydro Assoc. site…
Michael S.B. Edwards, MD, FAAP, FACS
Professor of Neurosurgery and Pediatrics Lucile Packard Children's Hospital & Stanford
300 Pasteur Drive, R207
Stanford, CA 94305-5327
Phone: (650)496--9976

Sorry to hear that Haley is having so many problems.
 

Hi Suecr:

We haven't spoken in awhile but we both spent our share of time at Children's hospital in Boston over the years and have had the opportunity to deal with some great Doctors there.

Sorry to hear that Haley is having so many problems. I hope they will find answers for her and bring a bit of comfort and peace to your life.

I know how hard it can be sometimes to deal with a sick child. You are dealing with it now and I watched my parents deal with all the problems I went through as I grew up and it can be maddening at time but keep loong for answers. they are out there somewhere in one form or another.

You are in my thoughts and well wishes

Regards
Mister (junuis from bt)

Thanks for the kind words Junius! How have things been with you. We are still sorting this whole mess out. Will see!

All my best to Haley and so many of the others
 

Hi:

I often wish I could do so much more than post in here and offer advice to try to help people. Sometimes the right words and hearing from a person who understands how hard it can be and having a shoulder to lean on (so to speak)
can mean a great deal to so many of us. Haley has her battles as do so many others posting in bt and bt2.

We are all fortunate to be able to talk to people who can truly understand. It is often hard with a chronically ill child for some to really understand what it is like. Those who have had their own experiences or have been through it with their children can only hope that others will understand in time. In the meantime you have this site and your friends in here who will help when we are able

As for me I am trying to stay out of the hospital for a full calendar year for the first time since 2000. So far so good.

I wish you well and hope for the best for you all and so many others who are dealing with situations like yours.

Regards
Mister (junius)

Hey junius! still being treated at BWH? I had my on experience there about a month ago, checked into ER with chest pain radiating through jaw and shoulders, but I did not think cardiac, no shortness of breath. So after all the tests it was viral pleuresy! They treated me very well and my hubby last year when he had an intercrainal carotid artery dissection, and the other hosp had no clue but I knew...

Dr. Rekate
 

Hi Suecr
Dr. Rekate is my plumber, and I have all the respect in the world for him (next to my wife, of course). He did my last revision in 1998, and was at Barrow's all hours of the day and night. He is Chief of Pediatric Neurosurgery, at Barrow Neurological Institute. As far as old school - he is approaching retirement, but he has marvelous reputation amongst the medical community here in Phoenix and will communicate with you in away you will understand. He is also on the advisory board for the Hydrocephalus Association out of San Francisco. I hope this helps. God Bless.

David