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mlzeid (@mlzeid)

hydrocephalus with overdrainage

Brain & Nervous System | Last Active: Apr 25, 2017 | Replies (19)

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@thegoodwife

It sounds like you need to run, not walk to a better medical team. Ask your neurologist for referrals to other neurosurgeons. If you are a veteran, the VA has been a recent help to us in evaluation and shown to be well connected to highly qualified outside specialists – on a first name basis. Headaches at night are probably due to you reclining – not good. Your shunt / drains may not be working/ clogged. Do you have a university medical team, Mayo Clinic, Cleveland Clinic and of course the Hydrocephalus Support group – you can phone them or check their website – Hydrocephalus Support Group, Inc.
1933 Mistflower Glen Ct.
Chesterfield, MO 63005-4236
Tel: 636-532-8228
Fax: 314-251-5871
Email: hydrodb@earthlink.net.
This replacement md is possibly carrying too big a load and not interested or able to take the time out a tight surgical schedule to get to the bottom of your problems. Sometimes doctors don’t want to clean up the messes left by their predecessors. To avoid this, only discuss the current issues and concerns. I hope you are already in better medical care and feeling much better when you receive this.

Our great folks are – Ryder Gwinn at Swedish in Seattle, Anthony Avellino in Peoria, Illinois, Sarah Foulke – Chesterfield, MO. . The later moved from the Seattle area and were outstanding doctors and individuals.

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Replies to "It sounds like you need to run, not walk to a better medical team. Ask your..."

Yes I agree, You need to find a good neurosurgeon who cares how you are. The fact that this one is carrying a big load of patient able to take time out of a busy schedule or doesn’t want to clean up someone else’s mistakes is NOT an excuse. He is a specialist and you are a patient. I would definitely,loudly demand a referral to a doctor that cares.I hope you find a Great doctor, don’t settle. A great doctor who cares makes all the difference in the world when your the patient.

Agree totally. That’s why it was such a loss when our doctor moved out of state.

As you can see, we lost 2 that were terrific – the replacement was not as apathetic as your new md, but we could see that he had a huge patient load dumped on him and it was not a specialty in neurosurgery that he was seeking – but had some invaluable experience with some mds that have made huge differences in shunts and hydrocephalus. So, I went back to our neurologist and she set us up with someone in her immediate network. And she left, too. When we didn’t get our annual appointment notice – I pushed for an appointment and was pleased to meet with Dr. Gwinn – who had a different take on my husband’s current situation and with the backup there, I contacted the VA, who helped, and now returned us back to the lineup for the super specialist in the area.

So, what I am saying – play all the cards you have and then reshuffle and find new options. I am the caregiver – so perhaps you need an champion/caregiver to put the foot in the door or call back and not let you get set aside.

Looking forward getting good news from you.

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