Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

[hikinglo]

@hikinglo -- It is a lot to learn, but there is potentially a lot to be gained.

Thank you Jyoti. It will take me awhile to digest, but I sincerely appreciate your wisdom/experience.

 

[Judee]

the whole thing left me confused.

I just tried but instead it wants to send me replacement pads. not the collar.....

I'm so sorry about that.

I haven't read all the additional posts yet. Just wanted to try to help because that must be an old listing and therefore not accessible anymore.

Here's some other listings using the title description from that other one: https://www.ebay.com/sch/i.html?_fr...ta+984000+Collar+Adjustable+One+Size&_sacat=0 (If you look at one of those, make sure it's the same 984000, if that's the one you want, because eBay/Amazon searches add other 'similar' things in.)

Here is the one on Amazon: https://www.amazon.com/Aspen-Cervical-Provides-Recovery-Adjustable/dp/B00E0MGSX2/ref=sr_1_1?crid=2BRF0T8D7K2G6&keywords=Aspen+Vista+984000+Collar+Adjustable+One+Size&qid=1666301737&sprefix=,aps,2348&sr=8-1

Kinda blurry eyed right now so will come back later and read the rest but hope this is helpful.

 

[lenora]

When I was at my worst with my other neurological problems (which also involved the brainstem), I found that using my arms made everything so much more painful. Have others found this at all?

My arms are weak anyway due to nerve damage caused probably 35 years ago. It flares up and causes problems from time to time. Lots of rib problems....but I have learned how to control most of them. A bad cough is a nightmare and causes a lot of pain.

I remember when Dr. Bologenese began. The Institute in NYC has had problems off and on throughout the years. I haven't heard anything recently. There is a doctor in Spain who will read MRI's sent to him.

I found my original neurologist (now dead) b/c he had done volunteer work in Central America and read the MRI and immediately diagnosed the problem. My neurosurgeon was originally from S. Africa and it was common there also. This then gets back to the lack of folic acid in the mother's diet during pregnancy and proven years later when a number of babies were born without brains....anencephaly, This is more commonly known as a neural tube defect and caused by the mother's diet in the first 3 mos. when the embryo/fetus is developing. At most, a rudimentary brain stem develops and the child dies either immediately or a few days later.

Many of us have neural tube defects....and I found that taking folic acid probably slowed the problem itself. I'm from a very large family, the first child, and none of my brothers and sisters seemed to have this problem. It can also be totally genetic.

Does anyone know the name of the doctor in Spain? It seems to me that people have sent their MRI's in for reading and diagnosis. You then need a neurosurgeon who is capable of making the needed repair. I've long lost contact and most of the original surgeons have retired anyway....but it was very helpful in relieving neck pain and some of the other symptoms. Takes a very skilled surgeon....or at least it did then. I'm now 75, so my days of surgery are over, although I do have seven stents, have had GI surgery and will need more stents in the not-so-distant future. Fight for your health....it's worth it. Learn all that you can and take someone with you for consultations. I don't give all of my symptoms...it would put anyone off. At least during the first visit. The neurosurgeon will always want to read the MRI's and other tests himself. Please take them with you.

I found the brainstem surgery much easier than the first I had done....cutting into the spinal cord itself. Extremely painful and the problem return a very few mos. later. That's when I found the new neurosugeon, and he was an incredibly careful man.

Doctors respond to "I really need your help." Sure, I may disagree with some thing, but politeness (even when we don't feel like it) leads a doctor to do more for us. P.A.'s can be a help or hindrance....but I don't ever argue with them. Some are actually better than the doctors with explanations, etc. My neurologist also acted as my internist since I had so many problems. It's all complicated.

The death of my neurologist of over 35 years has been a real blow. He'll be hard to replace, but someone has to be found. More is known about all of this than all those years ago. The MRI had only just been developed. Progress is made whether you realize it or not.

I would definitely try a collar since it's used so much after surgery today. Good luck in your search. Yours, Lenora

 

[hikinglo]

Does anyone know the name of the doctor in Spain?

Dr. Gilete.

 

[hikinglo]

When I was at my worst with my other neurological problems (which also involved the brainstem), I found that using my arms made everything so much more painful. Have others found this at all?

My arms are weak anyway due to nerve damage caused probably 35 years ago. It flares up and causes problems from time to time. Lots of rib problems....but I have learned how to control most of them. A bad cough is a nightmare and causes a lot of pain.

I remember when Dr. Bologenese began. The Institute in NYC has had problems off and on throughout the years. I haven't heard anything recently. There is a doctor in Spain who will read MRI's sent to him.

I found my original neurologist (now dead) b/c he had done volunteer work in Central America and read the MRI and immediately diagnosed the problem. My neurosurgeon was originally from S. Africa and it was common there also. This then gets back to the lack of folic acid in the mother's diet during pregnancy and proven years later when a number of babies were born without brains....anencephaly, This is more commonly known as a neural tube defect and caused by the mother's diet in the first 3 mos. when the embryo/fetus is developing. At most, a rudimentary brain stem develops and the child dies either immediately or a few days later.

Many of us have neural tube defects....and I found that taking folic acid probably slowed the problem itself. I'm from a very large family, the first child, and none of my brothers and sisters seemed to have this problem. It can also be totally genetic.

Does anyone know the name of the doctor in Spain? It seems to me that people have sent their MRI's in for reading and diagnosis. You then need a neurosurgeon who is capable of making the needed repair. I've long lost contact and most of the original surgeons have retired anyway....but it was very helpful in relieving neck pain and some of the other symptoms. Takes a very skilled surgeon....or at least it did then. I'm now 75, so my days of surgery are over, although I do have seven stents, have had GI surgery and will need more stents in the not-so-distant future. Fight for your health....it's worth it. Learn all that you can and take someone with you for consultations. I don't give all of my symptoms...it would put anyone off. At least during the first visit. The neurosurgeon will always want to read the MRI's and other tests himself. Please take them with you.

I found the brainstem surgery much easier than the first I had done....cutting into the spinal cord itself. Extremely painful and the problem return a very few mos. later. That's when I found the new neurosugeon, and he was an incredibly careful man.

Doctors respond to "I really need your help." Sure, I may disagree with some thing, but politeness (even when we don't feel like it) leads a doctor to do more for us. P.A.'s can be a help or hindrance....but I don't ever argue with them. Some are actually better than the doctors with explanations, etc. My neurologist also acted as my internist since I had so many problems. It's all complicated.

The death of my neurologist of over 35 years has been a real blow. He'll be hard to replace, but someone has to be found. More is known about all of this than all those years ago. The MRI had only just been developed. Progress is made whether you realize it or not.

I would definitely try a collar since it's used so much after surgery today. Good luck in your search. Yours, Lenora

Sorry to hear about probably just a little of what you've been through, Lenora. Your experience provides some valuable tips though - thank you!

 

[hikinglo]

Update & questions:

I had to go to the local small-town hospital's ER to rule out stroke, and and they recommended followup with MRI's and their neurologist. (Which I've had to take care of myself; they hospital didn't help with any of that stuff.)

I had to go to my PCP to get the MRI ordered and hopefully expedited, due to fairly debilitating symptoms. Plus some ideas on local neurologists.

It took over a week to get a call from the imaging dept. at WVU. I'm scheduled for both a brain and cervical MRI, but not until Dec 11 (?!)

The small-town hospital's earliest neuro appt is early January (?!)

Question:

Is this lead time normal for these appointments???

I mean, I know our health "care" system sucks (which is why I've avoided it as much as possible), and I only have Medicare, but to put off a patient showing signs of brain injury for 2.5 months??? (I told the ER & my PCP these symptoms began early October.)

 

[lenora]

Hello @hikinglo. May I ask where you live, or approximately where?

Small towns are probably not going to be able to provide you with the type(s) of MRI's that a neurologist will need. Usually you'll find that cities, university medical schools especially, provide the newest and most up to date technology.

At the moment there is a severe shortage of neurologists in the U.S. These doctors are the top tier of the medical world, but because of the extra training, we're getting fewer and fewer each year. Many are retiring, or even dying. It's a terrible shame.

I just made an appt. with a new neurologist, have to take all of my old records (like 3 files worth) with me, but the appointment isn't until January 8th (around then). So what you're experiencing isn't unusual....they just don't have the time slots available as many of their patients take a very long time to deal with. Always there is the chance of a hospital emergency, at which time I would possibly reschedule. Be first in line, if possible.

I'm surprised you didn't have more tests while in the hospital, especially if a stroke was suspected. I'm afraid that at the moment we're seeing the medical system at its worst due to COVID and the ensuing burnout.

With all Dr.'s you can count on November through the end of February to be the worst time for an appt. This is a yearly event, but you'll soon learn when to make your appointments. I make one at the time I've left another. Many specialists will see patients as early as 5:00-5:30 a.m. I'm usually first in line for them...neurosurgeons, especially. I wish you good appointments. Yours, Lenora

 

[hikinglo]

Hello @hikinglo. May I ask where you live, or approximately where?

Small towns are probably not going to be able to provide you with the type(s) of MRI's that a neurologist will need. Usually you'll find that cities, university medical schools especially, provide the newest and most up to date technology.

At the moment there is a severe shortage of neurologists in the U.S. These doctors are the top tier of the medical world, but because of the extra training, we're getting fewer and fewer each year. Many are retiring, or even dying. It's a terrible shame.

I just made an appt. with a new neurologist, have to take all of my old records (like 3 files worth) with me, but the appointment isn't until January 8th (around then). So what you're experiencing isn't unusual....they just don't have the time slots available as many of their patients take a very long time to deal with. Always there is the chance of a hospital emergency, at which time I would possibly reschedule. Be first in line, if possible.

I'm surprised you didn't have more tests while in the hospital, especially if a stroke was suspected. I'm afraid that at the moment we're seeing the medical system at its worst due to COVID and the ensuing burnout.

With all Dr.'s you can count on November through the end of February to be the worst time for an appt. This is a yearly event, but you'll soon learn when to make your appointments. I make one at the time I've left another. Many specialists will see patients as early as 5:00-5:30 a.m. I'm usually first in line for them...neurosurgeons, especially. I wish you good appointments. Yours, Lenora

Thanks again for your helpful suggestions and encouragement, Lenora.

WVU = West Virginia University Medical Center - They have the monopoly on SW Pennsylvania, Western MD, & most of WV. I'd go to University of Pittsburgh (UPMC Medical), in the general area of where most of my family are, but I don't have the stamina to travel the 2 hours. (As it is, WVU is nearly an hour away - I'm in the middle of NoWhere!)

I suspected as much re the neurologists, Covid (and let's not forget our third-world, for-profit health care system). Thanks for reassuring me about that. I'm hoping my PCP will get me that second referral, which I'll use to make a back-up neurology appt.

The ER staff did CT, ECG, xrays, bloodwork including a Lyme test. (Never thought I would hope for a positive Lyme test just so I could be treated for SOMEthing to make these more recent symptoms go away!) I'll probably grab a hard copy of the actual CT image when I get a chance. Thanks again - I needed that support!

 

[lenora]

Hello @hikinglo.....it's good that the tests performed were done. Just make sure to pick up copies of all reports & CD's and actually take them with you for your appt. You'll probably still need an MRI with/without contrast. I've probably had 30 or more of them....and no trouble. Foam earplugs or earphones should be supplied.

Before the MRI we had to have exploratory surgery which resulted in a lot of mishaps. Each doctor who reads CD's may find something new in the "picture." This is good....it's exactly what you want.

I'm familiar with Pittsburgh and they have excellent medical facilities and doctors. I agree that 2 hrs. is a long way, but I would make it for surgery. You'll be referred back to your doctor of origin for follow-up care.

Yes, I know that it's hard to find competent medical help in rural areas. I found excellent care for my brother via the Veteran's Administration for a brother when he was ill. All sorts of new equipment that can track multiple things without the necessity of a doctor's visit. He didn't have our problems though.

Good luck and try not to worry. Eat well....a well nourished body helps immensely. One more thing about your exam with a neurologist. Your appt. may seem short but they're examining you one way or the other the entire time you spend with them. Most are very thorough and can tell so many things from your demeanor even. Most neurological illnesses will be ruled out (additional testing will be required), but that's what you're there for. It wasn't too very long ago that even things like MS were treated as being "all in your head." Times change. Yours, Lenora