Large Scale Central

Our Devon Sinsley needs your prayers.

General Discussion
#101

Sean McGillicuddy said:

Have you seen/felt the difference since the draining ?

Well here is the good and bad of it. Well I had the spinal tap on Friday the 22nd. I laid flat for two days to minimize any spinal headaches. I experienced excellent results as all of the pressure went away. My headaches were gone (at least the pressure ones) the ear aches were gone, my stiff neck was gone, and most of the sea sickness was gone. I still had ringing in my ears and my vision was FUBAR, but that is nerve damage and will take a bit to heal. I did experience some spinal headaches, very mild, and only at days end. I was very happy; I felt like the old me. Then on Friday the 29th I started to suspect the pressure was returning. By Saturday it was all back. As bad or worse than before. I Ended up in bed most of Saturday and Sunday. Yesterday and today have be down right miserable as I have had to be physically active at work bending down crawling on the ground and putting my head lower than my feet. Not good. What was supposed to give me 4-6 months of relief gave me 5-6 days.

Now the question is where do we go from here? The first med I was on did not relive my symptoms and damn near killed me with exhaustion. Now the spinal tap “worked” like it should but the problem returned immediately. After researching this on my own at reputable places like the Mayo clinic and John Hopkins, the normal course of treatment would be to put in a permanent shunt; or at least thats what they usually do when the med I was on doesn’t work. My Neurologist doesn’t believe in them, says they don’t work. I have to see him tomorrow and will be very curious what he thinks the next course of action should be. I am already looking for another neurologist in Spokane to get a second opinion. I am not real excited about trying random drugs hoping one will work. I have been living with this for over 6 months now and I can’t see doing this much longer. It is making work and play very painful. All I want to do is lay in bed and that in and of itself is depressing. So I am going to start pushing for something or someone that will fix this. I read way to much that people get relief from it in almost all cases. So where is mine.

Anyway nuff complaining. That’s where I am. More frustrated than anything.

#102

Dev,

You do deserve a second opinion. One has to be their own patient advocate. The permanent shunt seems like what you need. Tell your doctor you WANT a second opinion. Please recover from this. We are all pulling for you. Oohrah!

#103

The nice thing is it doesn’t matter what the doc says. My insurance allows me to self refer. I already checked and I can seek whatever doc I want and switch whenever. As long as they are in network.

#104

Yeah, definitely sounds like you need to get another opinion on this.

#105

Devon,

Get another opinion…in my case the shunt worked and is STILL working 6 1/2 years later! Apparently are are accumulating quite a bit of fluid and the meds are not able to take care of it. Your fluid increased in about 5 days and the amount was worse than before. Logic would tele that the meds are not working and the one time lumbar drain is not enough. Logically a full time shunt would seem to be the answer. I have never heard of a neurologist saying “he doesn’t believe in them”. Shunts are very common now. Get another doctor now before this one “kills” you. JMHO.

#106

Yeah, he does not believe in them… what does he believe in, you being in agonizing pain? (https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-frown.gif)

Sometimes doctors get stuck in time, and don’t accept new or different information. This is ok when you take a car in for service and if the car blows up due to poor servicing, you go somewhere else… not good with a guy with your life in his hands.

Greg

#107

Devon,
You deserve better than you are receiving from your current doctor. Change is essential. I’ve been blessed with exceptional care starting at age 18 months (born in 1948). I was the first patient in medical history to have a pericardial entices thank to a doctor who was willing to do something no one had ever done before (and save my life). I’ve also been on the crappie end of bad medical care and had a sill born child to prove it. Make the change and find a physician that puts patient needs above his/her personal preferences!

#108

Buddy listen up, get a second third or however many opinions/diagnosis it takes.

My symptoms; Intense headaches 25 hours a day 8 days a week.

The local doc, gave me pain pills which did nothing as a cure. The final straw was losing control of my bowels…

I packed myself into my car and drove 50 miles to my parents doctor. He did the Spinal Tap, diagnosed me as having Viral Encephalitis, put me to bed and prescribed a steroid Predisone (funny as I was already giving it to my cat for a skin condition!). 6 weeks later I recovered.

The morning it struck, it took me 20 minutes to figure out how to sit up in bed. 40 years of reflex movement gone, I had to visualize each muscle to move next, quite alarming!

When I went back to complain to the 1st quack, he said Oh I saw your ball cap (a local bar whose softball team I played for) and decided you wanted pain pills.

It was very dangerous for me to make that drive down the San Diego freeway, but my will to live was stronger.

When I went back to work, I had to relearn reflex motions of 14 years on the job…

Please find a doctor that needs to find the cause, not one focused on treating the symptom. Hey they are human too.

Yer Buddy,

#109

Gary Armitstead said:

Devon,

Get another opinion…in my case the shunt worked and is STILL working 6 1/2 years later! Apparently are are accumulating quite a bit of fluid and the meds are not able to take care of it. Your fluid increased in about 5 days and the amount was worse than before. Logic would tele that the meds are not working and the one time lumbar drain is not enough. Logically a full time shunt would seem to be the answer. I have never heard of a neurologist saying “he doesn’t believe in them”. Shunts are very common now. Get another doctor now before this one “kills” you. JMHO.

Well thanks everyone for the advice, I will be taking it. Honestly I can’t figure this guy out. Basically everything I said about him in my previous posts was an inadvertent lie on my part. Either this guy is learning as he goes or he just gives you bits and pieces as he sees fit.

So today’s doc visit was very different than the last one with him. Maybe its the time of day. I saw him first thing in the morning and he was much different. He walked in and said and I quote: “Did it work?” Me: “For about 5 or 6 days it worked great, I felt awesome, then it came back in a rush, a matter of 12 hours.” Him: “Well that means you need a shunt then” WTF two weeks ago he said shunts don’t work. I even texted my waife and asked her if that is really what he said because the was also there. She confirmed that is exactly what he said. At any rate I then asked him what the procedure was and it he described it exactly as Gary has described it. A tube in the center of my brain ran out side the skull with a pop off valve and then a drain into my abdomen. I did ask him about a shunt in the spine which I have read about and he said no and then before I left the office while I was making my follow up appointment he came out and said yeah they can put them in the spine also but its up to the surgeon.

So where I sit today. He made a referral to a neurosurgeon. He is also going to try another drug that is stronger than the last one but is supposed to leave my vitamin levels alone. He says he doesn’t think it will work but its worth a shot while I wait for the surgeon. Can’t argue that thought process, if it messes with me or doesn’t work I can stop. If it does then great I dodge a bullet. But its now a waiting game. I am getting a second opinion now no matter what; we are talking about drilling into my brain I think a second doc might be prudent; even if for no other reason than to confirm the plan.

Oh joy ain’t this fun.

#110

Devon,

Be strong (I think you are). There is a light at the end of this dark tunnel I think. We all are thinking of you.

#111

John Caughey said:

Please find a doctor that needs to find the cause, not one focused on treating the symptom. Hey they are human too.

Yer Buddy,

This right here is the kicker. What I have, at least at this point, has no cure. It is all about symptom management. There is a foundation that is working with a university in Oregon on trying to find a cure or at least better diagnosis and treatment. It costs me $35 a year to be a part of it but it gives me and my doctors access to all of their research and patient diagnosis. I haven’t joined yet because it does seem somewhat scam like but that just the conspiracy theorist in me. But the thing that frosts me is just like Gary has said, the shunt works, and his reluctance to even discuss it bothered me. I understand exhausting all resources before doing something drastic. But if drastic is what is needed. And then when he all of a sudden changed his tune it felt like he was learning as we go. I don’t want to be a student, I want someone who is sure of what he is doing. I just don’t get that feel from this guy. I will be making an appointment this week. At least I will have a second opinion with the neurosurgeon now.

#112

Joe Zullo said:

Devon,

Be strong (I think you are). There is a light at the end of this dark tunnel I think. We all are thinking of you.

Joe,

With all the misery there is a light shining right now, in me and through me. I may be physically weary, even emotionally weary, I am spiritually strengthened. We are not supposed to do the religion thing on here so I won’t. I will leave it with I have experienced love and compassion that I believe only comes from one place.

#113

Devon Sinsley said:

Joe Zullo said:

Devon,

Be strong (I think you are). There is a light at the end of this dark tunnel I think. We all are thinking of you.

Joe,

With all the misery there is a light shining right now, in me and through me. I may be physically weary, even emotionally weary, I am spiritually strengthened. We are not supposed to do the religion thing on here so I won’t. I will leave it with I have experienced love and compassion that I believe only comes from one place.

I don’t think BD will mind if I give an AMEN to that. (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-innocent.gif)

#114

Hang in there!

You are more patient than I would be!

#115

Big dilemma, with no answer… Who do you want as your physician, the recent graduate of a residency, with all the latest technology, and knowledge, or one with 30 years experience in the field. Like I said, there is no answer, it’s just something that makes me go… hmmmmmmm.

#116

Steve Featherkile said:

Big dilemma, with no answer… Who do you want as your physician, the recent graduate of a residency, with all the latest technology, and knowledge, or one with 30 years experience in the field. Like I said, there is no answer, it’s just something that makes me go… hmmmmmmm.

What I want, and may not be an option, is the doc with 30 years of experience treating this problem and staying current on all the latest and greatest. But I realize in Coeur d’Alene Idaho and even likely Spokane there are not enough cases of this for a doc to send the time keeping up on. I certainly do not mind my doctor becoming educated and I do greatly appreciate his experience. But be honest with me and tell me you need to research it. I just feel like this guy is winging it.

#117

That’s why we call it a practice, Devon.

One thing I learned in the Navy, never rely on your memory, always look it up. That stood me in good stead for my 35 years of medical… practice.

#118

Hi Devon:

I’m becoming cautiously encouraged by your reports. When you wrote about the confounding situation with your doctor that changed/reversed his philosophy, it hit home here as my wife has run into that. It was like, "what happened to him that day?!. Yet, as time passed his help to us, over all, was useful. I am so glad you have a diagnosis. My wive has had side pain and other issues for the past 16 years and NO doctor has ever explained it. Seems like we live something of an ongoing gamble. Again, so glad you have a direction with this. It’s something to run with.

Cheers, Dennis in Ritzville/Odessa

#119

Devon …I believe you know my thoughts and I will continue with them.

#120

While we’re talking brains and drains, some tangential trivia from the “This just in!” news category.

Brain has inbuilt ‘drainpipes’ which get rid of waste, scientists find

6 October 2017 • 9:30am

The mystery of how the brain gets rid of waste or toxic substances has finally been discovered by scientists - it has its own sewerage pipe.

http://www.telegraph.co.uk/science/2017/10/06/brain-has-inbuilt-drainpipes-get-rid-waste-scientists-find/

Oh, let’s add this too while we’re talking brains.

"Researchers Uncover Our Brain’s Filing System for Storing Experiences
Sep 27, 2017
A team of neuroscientists has uncovered how our brains organize, over time, our experiences: that is, according to their similarities.

“It is as if in order to make sense of the world, the brain re-organizes individual distinct experiences into information clusters—perhaps signaling the emergence of conceptual knowledge,” observes Lila Davachi, an associate professor in NYU’s Department of Psychology and the senior author of the paper, which appears in the journal Neuron."

https://www.nyu.edu/about/news-publications/news/2017/september/researchers-uncover-our-brains-filing-system-for-storing-experie.html