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Diagnosed at 25, unable to get a shunt?

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Unread 12-22-2012, 07:54 AM   #1
duuwop
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Default Diagnosed at 25, unable to get a shunt?

Hello everyone.
I was recently diagnosed with hydrocephalus or the third and lateral ventricles. I've since seen one Neurologist, and I had an appointment with a Neurosurgeon as well, which he canceled the day of because he said he looked over my MRA and MRV and said surgery is unnecessary.

The Neurologist was more concerned with treating my headaches and believes they aren't connected with my hydrocephalus. I also have an unsteady gait, which he believes in vertigo resulting from an enlarged artery that as of two years ago somehow moved to be underneath my eardrum, causing pulsatile tinnitus in that ear. That was the original reason for my seeing an ENT, who ordered an MRA and MRV, which ultimately lead to my diagnosis with hydrocephalus.

I don't understand why they can't do something for my hydrocephalus. No one is giving me answers for if this could possibly be degenerative. I honestly do not believe my unsteady gait isn't linked to the hydro. Two years ago I also developed skull splitting headaches at the crown of my head that weren't resolved with OTC medications. After seeing Doctors for these headaches, I was prescribed oral imitrex, which did not help, and none of them sent me for imaging. The headaches and tinnitus started at the same time. The unsteady gait started last May.

Any advice? I'm scared. I'm scared of facing degenerative issues later in life. I'm scared of letting this go untreated. I have an uncle who has hydrocephalus and he was fine until his late 40s, during which he developed Parkinsons and Dementia. His was a very chronic case, unfortunately, and mine isn't as bad, but all of these possibilities still scare me. I would have at least liked to talk with the Surgeon to see why he thinks surgery isn't an option, and what I could possibly be facing later on down the road if left untreated or otherwise.
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Diffie (01-23-2013)
Unread 12-29-2012, 01:58 PM   #2
Papet
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Find a neurosurgeon with an excellent reputation and see him.
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Unread 01-04-2013, 10:21 PM   #3
Lady1996
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Originally Posted by duuwop View Post
Hello everyone.
I was recently diagnosed with hydrocephalus or the third and lateral ventricles. I've since seen one Neurologist, and I had an appointment with a Neurosurgeon as well, which he canceled the day of because he said he looked over my MRA and MRV and said surgery is unnecessary.

The Neurologist was more concerned with treating my headaches and believes they aren't connected with my hydrocephalus. I also have an unsteady gait, which he believes in vertigo resulting from an enlarged artery that as of two years ago somehow moved to be underneath my eardrum, causing pulsatile tinnitus in that ear. That was the original reason for my seeing an ENT, who ordered an MRA and MRV, which ultimately lead to my diagnosis with hydrocephalus.

I don't understand why they can't do something for my hydrocephalus. No one is giving me answers for if this could possibly be degenerative. I honestly do not believe my unsteady gait isn't linked to the hydro. Two years ago I also developed skull splitting headaches at the crown of my head that weren't resolved with OTC medications. After seeing Doctors for these headaches, I was prescribed oral imitrex, which did not help, and none of them sent me for imaging. The headaches and tinnitus started at the same time. The unsteady gait started last May.

Any advice? I'm scared. I'm scared of facing degenerative issues later in life. I'm scared of letting this go untreated. I have an uncle who has hydrocephalus and he was fine until his late 40s, during which he developed Parkinsons and Dementia. His was a very chronic case, unfortunately, and mine isn't as bad, but all of these possibilities still scare me. I would have at least liked to talk with the Surgeon to see why he thinks surgery isn't an option, and what I could possibly be facing later on down the road if left untreated or otherwise.

I had the same thing. I am unable to be shunted but my neurologist built a by-pass around my blockage. I have no pressure. My doctor told me that the swelling of my ventricles are what's causing my headaches, and they aren't able to do anything other than talk therapy, and really lame analgesics. I really feel like I'm going to stroke out some days.

I still have raging headaches, a crator in my head and no help. I had 3 "nothing" surgeries. I feel really hopeless. Who wants to have a headache for the rest of thier life? Not me.

I consider suicide constantly. I feel hopeless.

I go to a hospital, see a doctor and I am constantly given "junkie' treatment ( I call it) I am extremely jaded with doctors and I don't view them as an ally or a support. I feel like I can't ask for help.
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Diffie (01-23-2013)
Unread 01-23-2013, 01:45 PM   #4
Diffie
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duuwop and Lady1996,

Do either of you live in the U.S.? I find your situations distressing. I had this happen to me when I was first diagnosed in April of 2000. I was being "treated" (what a joke) at Hershey Medical Center where the neurosurgeon did not want to perform surgery and sent me to a neurologist what put me on meds for my pain. It took me 4 years to find Dr. Daniele Rigamonti at Johns Hopkins (Baltimore) who specializes in CSF disorders. My first 2 shunts were VP. Apparently, my abdomen does not like foreign objects, because they became blocked at the distal within a month and needed to be replaced. The 3rd (still in place but not functioning) is a VA shunt placed in October of 2004. The tubing began to get brittle in the spring of 2011. So in April of 2012, Dr. Rigamonti offered the option of a new procedure he had developed to create a pathway through the interpeduncular cyst that was causing the blockage of my CSF. I opted for the procedure and have been pain free for the past 9 months. If neither of you are able to get to Baltimore, perhaps his office can recommend a surgeon in your areas. Do a search for "Johns Hopkins, hydrocephalus" and you will see links to the Hydrocephalus Center there.
I certainly hope that you both receive the help that you need very soon.

Regards,
Lon
(Diffie)
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