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mlzeid
@mlzeid

Posts: 12
Joined: Jul 11, 2016

hydrocephalus with overdrainage

Posted by @mlzeid, Jul 11, 2016

I have hydrocephalus with a lumbar programmable shunt. I also have slit ventricles. For the past 2 weeks, I have had severe backache, shoulder pain and headache, especially at night. My neurosurgeon recently moved to another state, and his replacement doesn’t have any answers.

REPLY

Welcome to Connect, @mlzeid.
I’m bringing a few other Connect members who may be able to help. Please meet @predictable @cynaburst @rosesareredmylove2016 @thegoodwife and@pedie. You may also be interested in reading this discussion https://connect.mayoclinic.org/discussion/nph/

@mlzeid You don’t sound impressed by the care of your neurosurgeon’s replacement. Could he possibly consult with neurosurgeon out of state? Or could you request a second opinion?

Liked by AT2008

I would recommend finding a neurosurgeon that will listen to your concerns. The Hydrocephalus Association has a list on their website. http://www.hydroassoc.org

What clinic/hospital are you at? I mean city? You definitely should see someone, I have acquired hydrocephalus with a VP programmable valve. I have a great neurosurgeon at La Crosse Mayo clinic.
Definitely would be helpful as well, to contact the Hydrocephalus Association. There Web address is hydroassoc.org. I hope this helps! I tried to start a support group in La Crosse but had little to no serious people wanting to join the group, or assist me.
I have found the hydrocephalus association extremely helpful

@cynaburst

I would recommend finding a neurosurgeon that will listen to your concerns. The Hydrocephalus Association has a list on their website. http://www.hydroassoc.org

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Good Morning: I would recommend getting a second opinion. When I was diganosed with my brain tumor, I had hydrosephalus, and all my nuerosurgeons were Very concerned, because the tumor was so big and pushing my brain stem in, causing this . Don’t take it lightly, its a very serious condition, and can kill you. My nuerosurgeons after seeing my MRI told me if I got a headache to get to the ER. And the reason they told me that was, I had not had headaches at all, but because I had hydrosephalus from the tumors growth it was causing water to stay on my brain instead of drain into the spine like it was supposed to. Don’t let anyone tell you its NOT serious. IT is. Get a second opinion, even a third opinion, whatever it takes. Ask your Primary Care doctor to find one, A good one.They are the first doctor you have care under, their responsibility is to take care of you….

Good Morning, I was told when I needed brain tumor surgery, any kind of headache was NOT something to take lightly. When i was told i had hydrocephalus, I was told it was even more important that if I got a headache, It was seriously a major issue and I needed to get to an ER as soon as possible. this is a life threatening condition. Its unacceptable for a surgeon in my opinion to NOT have some answer for you, Or consult someone else on your behalf to find the answers you need, to put your mind at rest and help you.
My Doctors name in Minnesota is Dr. Huang, and she would dig for your answers.. Her number is 612-626-5900, she is on the 6th floor, in the ENT department, her nurse is Sarah..

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.

@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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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.

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

@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.

Jump to this post

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.

I was diagnosted with hydrocephalus years ago when I started to become very dizzy. At first the doctor recommended surgery a shunt. I ran a small group of kids that all had shunts and told me how their shunts who clog and how they had to have surgery. So when I saw a neurologist and he recommended surgery I said no. He than recommended antivert when I got dizzy. Shortly after someone recommended lipoflavinoid for ringing in the ears. Which I had just before I got dizzy. I have been using this supplement for years now and I have not had a dizzy spell since. I take for pill a day in the mornings. I can not say it will work for everyone but I can say it works for me.

Having a shunt o gram this morning. M’s doesn’t want to do surgery without a reason. Feeling worse and worse

hi: what are you feeling???? surgeons need a specific reason to do surgery. if there is No reason they can see, they won’t. What is i exactly you are feeling???

Headache which gets worse at night, neck pain and severe back pain

@cynaburst

I would recommend finding a neurosurgeon that will listen to your concerns. The Hydrocephalus Association has a list on their website. http://www.hydroassoc.org

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hello last year I have LP SHUNT THAT DID WORK FINE KNOW I FEEL DIZZY LIGHT HEADDED FAITED I HAVE SURGERY ON JAN27 FOR VP SHUNT SEE HOW THIS WORK

@cynaburst

I would recommend finding a neurosurgeon that will listen to your concerns. The Hydrocephalus Association has a list on their website. http://www.hydroassoc.org

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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!!

Liked by Jamie Olson

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