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Posts (22)

Jul 10, 2018 · New Diagnosis - ascending aorta aneurysm in Aortic Aneurysms

This is quite a surprise for you. And your MDs will move quickly on this. You are right not to take it lightly, and be wise to consult on the big surgery or to have it stented. If you are a senior citizen, the stent is more annoying to monitor but the placement is less trauma on your body. Take someone with you on your appointments. Being calm and problem solving will is the best. You need someone in the hospital with you and then at home until you are able. Best wishes

Jun 29, 2017 · Video Q&A about Heart Disease and How to Prevent It in Heart & Blood Health

Common meds include Amiodarone and others. There are side effects from all, so you need to be mindful. Some people have Afib and have no problems, but others maybe at great risk – according to cardiologists we have seen. Dialysis can cause Afib. Correctly done it can be avoided.

Feb 5, 2017 · Weakness in legs and knees in Brain & Nervous System

You need to discuss your headaches your neurologist. They are not NPH symptoms. The NPH symptoms will subside as the shunt is opened more . It will be slow but remarkable as time goes on and the shunt is opened more. PT is a great help. When NPH is stressing the body, residual stroke problems will be more noticeable and limiting. It’s hard to remember or recognize the causes of different difficultirs. Sometimes I feel like a detective sleuthing out why my husband has a new problem and I have to actively advocate for him. Good luck. Try to have someone help with this. 4 ears are better than 2. Good luck

Dec 17, 2016 · hydrocephalus with overdrainage in Brain & Nervous System

There are specific reasons for an LP shunt. We just had an info seminar by Medtronic. Sounds like you need more info on the cause of your condition shunt settings and reason to replace with VP. Possibly two different surgeons, too. You need to have considerably more examination and info from your MDs. Don’t hesitate to get second opinions and have someone with you to help gather and record and question. Good Luck!!

Nov 9, 2016 · NPH (normal pressure hydrocephalus) in Brain & Nervous System

Hi Jean, I was reading you logs and as we have had a rough patch here – not due to NPH, it has taken me awhile to get back to you. To our knowledge, there is no correlation with diabetes and inactivity and NPH. Although, NPH can cause you to be inactive. Diabetes is an immune system disease – NPH is not immune system related. After being at our local support group, I thought that I should take a minute to let you know that one of our participants has had similar cognitive deficits. Driving is a big issue with many of our group members. The important thing is to be able to respond as quickly as needed to be safe and to put yourself in win-win situations. Most report that doing things that were logistically routine years ago, are easy to do. Doing new things -going to new places or places that have changed are more exhaustive and challenging. OT and PT are invaluable. Also consider going to regular senior exercises – whether or not you are a senior – it is a kind group of thoughtful participants. Be patient with yourself, but tenacious in regaining you ability to stay active. Best Wishes,

Jul 14, 2016 · hydrocephalus with overdrainage in Brain & Nervous System

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.

Jul 13, 2016 · hydrocephalus with overdrainage in Brain & Nervous System

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.

Mar 16, 2016 · Requesting a doctor at Mayo Clinic - ascending aortic aneurysm in Aortic Aneurysms

I suggest that you take this surgery with the greatest caution. Make sure
that if you choose the big open option, instead of a stent, that you are
aware that you may be at risk for Normal Pressure Hydrocephalus. Get all
your options on the table and make sure that you have information from
other physicians, not just the surgeon, who will not be around to treat any
complications afterwards. We had a bad surprise after having a good
surgery, but my husband was struck with NPH, due to the major life support
system necessary for the surgery.

The Good Wife