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Re: Journaling the end

Community Guru
Maria T Member Since: Nov 12, 2015
21 of 138

The truth, I do not know what to tell you.
I just wanted to be here to support you.

Be strong, take advantage of what you have!

A hug!

Active Member
Allan A Member Since: May 1, 2017
22 of 138

Sending you much love, hope, and miracles, Bill...

Community Guru
Bill H Member Since: Aug 18, 2017
23 of 138

Thanks for all the posts. I'm further behind than I was when I first started the thread.

 

I decided not to see the neurologist who treated me in the hospital because his English was so poor we couldn't communicate. Instead I saw my regular neurologist. He had diagnosed me with partial complex seizures, "spells" I get where I have no points of reference, don't know where I am or what I'm supposed to be doing, along with loss of balance. They always started clearing very quickly and disappeared shortly, until the one in early October. What a waste.

 

Without looking at the MRI he said I didn't have hydrocephalus at all and I wasn't having seizures. He said the long "spell" couldn't be a TIA because I'm on anticoagulants. That's not only wrong, it's scary wrong.He had diagnoserd seizures before, but ruled them out this time because I was aware during them. I had related being aware when he diagnosed seizures; now it means I don't have seizures. I only have these when standing. So, he decided it was all due to hypertension. The man's an idiot. Orthostatics consistently show my normal reaction to prone, sitting and standing - BP drops and pulse rate increases. The next diagnostic test is a spinal tap, but he won't do that because I have to go off anticoagulants to do it. My cardiologist is fine with me going off anticoagulants for diagnostic purposes. The guy is a danger to his patients.

 

I'll see the hospital neurologist and the practice manager, who has worked with him for a long time and understands him, will translate. He has a plan, which is a thorough neuro workup, a spinal tap to determine cerebrospinal fluid pressure and presence of any contaminants, and referral to a neurosurgeon for evaluation of suitability for a shunt. The "spells" continue, and I continue to need a minimum of twelve hours sleep per night. Actually did three hours work this past week.

 

 

Community Guru
Mary W Member Since: Nov 10, 2014
24 of 138

 Wow.   Just...wow.  My DIL is dealing with a neurologist and an ophthalmic neurologist, as well as several other doctors because she has developed blinding headaches and double vision, as well as a bout of pancreatitis last week.  Diagnoses run from vitamin deficiencies due to a 10 year old gastric bypass (some vitamin which can't be measured by a blood draw) to a brain aneurysm (confirmed, but apparently not an issue) to ??  I wish I could go to Wisconsin and get all of them in the same room at the same time.

 

Anyway, I think  your plan of action is wise.  Dump the old neurologist for sure.  You might even want to get another opinion.  Spinal taps aren't nearly as bad as they make them appear on TV.  And shunts are fairly easy surgery I believe and extremely successful.

 

Best of luck.  Keep on keepin on and thanks for keeping us in the loop.  Prayers and fingers crossed.

Community Guru
Janean L Member Since: Apr 6, 2016
25 of 138

Echoing Mary.

 

Fingers crossed. Prayers (because I do that).

 

Would you consider a trip to Mayo or the Cleveland Clinic or a similar top-notch all-inclusive/all-specialties-cooperating U.S. facility?

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Community Guru
Rene K Member Since: Jul 10, 2014
26 of 138

Bill, your regular neurologist is a public danger. Considering how much they charge, this is also a  shame. Maybe the no-English has actual medical skills?

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"Where darkness shines like dazzling light"   —William Ashbless
Community Guru
Wendy C Member Since: Aug 24, 2015
27 of 138

Bill, asking for a translator as needed might be the darn smartest thing you've done to date.  Along with firing your regular neurologist. 

 

When do you see the original neurologist for a confirmed plan of action?

Community Guru
Nichola L Member Since: Mar 13, 2015
28 of 138

Bill,

 

If you have to have a spinal tap make absolutely sure that you have it done under xray conditions. My own experience over the last 20 years has been 14 taps. Some were OK; some most definitely were not. The more painful ones were recent. Bones/spines change with age, so make sure you have yours done under the care of a radioligist who knows what they are doing and,more importantly, where they are going. 

 

Please take my advice on this. Keep fighting soldier ...

Community Guru
Bill H Member Since: Aug 18, 2017
29 of 138

Thanks all. I see my cardiologist tomorrow. He is part of the same medical group as the fired neuro. We discuss medicine as peers and I'll let him deal wth the fellow.

 

I see the original neurologist Friday 16 Nov. Pain following a spinal tap is often caused by discharging the patient without adequate time lying down in supervised recovery plus failure to overhydrate.I'll ask if an interventional radiologist can do this one. Thanks, Nicole.

Community Guru
Kathy T Member Since: Jul 17, 2015
30 of 138

Bill, sometimes, going to doctors in the same medical group isn't the best option. Check out U.S. New's best hospitals (that deal with your condition) For routine care it's ok to stay with doctors in the same medical group, but when the situation is more serious, or complicated, it's best to seek out doctors in well know hospitals who specialize in conditions such as yours.

 

For specialized care down here in FL, I have gone and continue to go to Cleveland Clinic and UHealth (University of Miami) and wouldn't think for a second of going anywhere else.

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