[Barrington120]

Hello, I found this site after looking for a memory loss support group online. My husband has had 15+ closed head traumas, most with LOC of different time frames, also has PTSD, and newest a failing pituatary gland.

After reading some posts and doing some research I feel he may have PCS as one of the many things going on. Does anyone else with this have pituatary gland issues? We are being told the gland is most likely damaged due to the numerous CHI's in his life, and that most likely nothing can be done to help "fix" it.

He has cognitive loss, severe (at times) memory loss more short term then long term memory but both are issues, he struggles to find the correct word and sometimes can't find them at all, ADD type symptoms(unable to concentrate, blurts words thoughts etc out), struggles with some basic math, also a lot of times cant remember the workings of a car engine(was/is a mechanic), can have an in depth conversasion with me and 2-5 minutes later not remember speaking to me at all, has stumbled even on my name at this point.

He has done speech pt(to learn coping with loss), helped some at the time. Severe fatigue, insomnia, always cold, headaches. Could go on. I guess want to know if there is anyone else experiencing damage to other brain structures due to there damage.
Sorry for rambling and thank you in advance.

Lisa
Also anyone know of a support group for spouses/caregivers??

[Mark in Idaho]

Lisa (Barrington),

Welcome to NeuroTalk. Sorry to hear of your husbands struggles.

I am not surprised he has such a cluster of symptoms. Has anybody mentioned the term "Multiple Impact Syndrome." ? It is the cluster of symptoms, many prolonged and permanent from the cumulative effect of multiple impacts.

When I read your comment <He has cognitive loss, severe (at times) memory loss more short term then long term memory but both are issues, he struggles to find the correct word and sometimes can't find them at all, ADD type symptoms(unable to concentrate, blurts words thoughts etc out), struggles with some basic math, also a lot of times cant remember the workings of a car engine(was/is a mechanic), can have an in depth conversation with me and 2-5 minutes later not remember speaking to me at all, has stumbled even on my name at this point.> If I did not know better, I would have thought you were talking about me.

We have tried to start threads focused on the needs of spouses and other caregivers. All it takes is for those parties to start contributing to the thread for Caregivers.

A local Brain Injury Support Group (BISG) with a sub-group for spouses and caregivers will be very valuable to you. My wife is dependent on attending our BISG. You state Brain Injury Association will usually have a list of BISG's.

If you can post a PM to me by left clicking on my screen name in the upper left of this post, you can tell me your email address and I can forward it to my wife. She has lots of experience with living with me over the last 32 years. Until you find someone for face time, she can offer some support. She has done this in the past.

Has your hubby had a full NeuroPsychological Assessment done?

Has he applied for Social Security Disability Insurance? It sounds like he would qualify.

How did your husband get so many head injuries?
btw, I notice you call it Closed Head Injury rather than concussion. Is there a reason for that?

Has he received any help at learning work-arounds and coping skills besides the speech therapy you mentioned?

There are lots of ideas and tips for working with memory deficits and other dysfunctions.

Sorry for so many questions but few answers. There are lots of good helpful people here.

What are his greatest struggles?

What questions do you have that we may be able to help you with?

Here is a support group link that may help you. http://www.carondelet.org/home/caron...rt-groups.aspx

The Mild Brain Injury Support Group at Clarondelet meets tomorrow, Thursday at 4:00. Hope you can make it. It appears that Clarondelet has lots of support to offer.

My best to you.

[Barrington120]

Mark I am unable to send PM's yet, I will respond to your questions later today. I am running off to work at the moment LOL,,,and will PM you with email as soon as I am able too,,, but thank you for your insight already!!!!!

[Barrington120]

Hi Mark-

Lets see how much I can I answer of your questions, LOL. No I had actually never heard of the multiple impact syndrome before I found this page, I have looked it up and sounds right. All of his issues have come to light since a surgery about a year and half ago, well come in majorly. There has always been loss(we have only been together for 7 years), but nothing like what has sprialed since the surgery, I initally thought it was just post anesthia syndrome which I asked the surgeon, who just blew me off(and yes I did ask if there was any hypoxia during surgery and have since gotten the surgical report and nothing out of the ordinary), however symptoms have hung out WAY to long for it to be that anymore ;o(.

Trying to figure out what is going on with him actually has stemed from him having a extremely low testosterone level. The Dr. I work for after speaking with her about symptoms etc went woah there is more to this then just the testosterone and we have been running ever since. He has been to a neuro, who I feel blew him off and my husband also used some of the "tools" he was learning in speech pt(for memory and cognitive loss).

So it was not an accurate "test" I feel. Also since he has stopped the speech pt a lot of the "tools/tricks" he had learned have gone away. He stopped the pt due to yet ANOTHER surgery(knee problems), and after that surgery he has back slid even more. I also just recieved the report from the neuro at work and feel that some of the things that he told ther neuro were not completely accurate(better then he is kinda thing). I unfortunately was unable to go with to that appt due to scheduling(let's just say he is not allowed to schedule his appt's anymore and I hate that).

As far as calling them CHI's instead of concusion's is due to that is what my doc has called them(I am a M.A. in a PCP's office-yes he is a pt, I know I know HIPPA LOL he is ok with it ;o)) I believe the reasoning is we don't have great documentation on them, other then reports from family etc
. Since I haven't been around that long some is very hazy, other then there have been a hell of a lot of them for someone his age-hell for any age. He will only be 40 in May. The reasoning for a lot of them was a daredevil when young and no one tried to control it even after several concusion's/CHI's with LOC.

Also he drove a racecar for a number of years-I always joke and say you obviously weren't very good at it if you got knocked out every race(gotta find humor somewhere in all of this). Also he was a combat medic in the first Gulf war-on the ground with a Marine Battalion.

He has not undergone nueropsych testing as of yet, the neuro he saw wanted us to finish the work-up on his failing pituatary gland before anything else. Which the endocrinologist he is seeing is basically saying it is failing due to the number of head trauma's he has had and prolly not "fixable".

We have been discussing the SSDI, but need someone to be able to say this is permanent and disabiling,, still working on that. See the endocrine for a follow-up next week, hopefully we can get it there. I am no longer comfortable with him going back to work.

His greatest struggles right now is remembering things(questions, conversations,peoples names, or significance of people's names), one track thinking or obsessing on one thought process and not being able to move to antoher and the loss of words.

I was told by the pt to give the words up instead of trying to "make" him remember them, that it would just frustrate him and me. At least we are at the point where he no longer gets angry when I tell him a word or finish a sentence/question when he can not place it or remember it.

I will look into the Carondelet support groups we are very familiar with carondelet in general and any help at this point would be great!!! I have no support system here in Tucson. My family is in So Cal and his family is not really a help at all, they even now sicne it has been explained just think he is being stupid, or a pain. They have no idea and no want to have an idea of what we both deal with daily ;(

So I think I answered most of your questions, as soon as I can I will PM with an email, would love to chat with your wife!!!!!! Anyone that has dealt with any of the things we are would be great!!!

Thank you
Lisa and Brian

[Mark in Idaho]

< All of his issues have come to light since a surgery about a year and half ago, well come in majorly. There has always been loss(we have only been together for 7 years), but nothing like what has sprialed since the surgery, I initally thought it was just post anesthia syndrome which I asked the surgeon, who just blew me off(and yes I did ask if there was any hypoxia during surgery and have since gotten the surgical report and nothing out of the ordinary), however symptoms have hung out WAY to long for it to be that anymore ;o(. >

The surgeon is blowing you off to avoid liability. I am very sensitive to anesthesia. It can be extremely rough on a brain, especially one that is compromised by injury. Look up chemo brain.

If he has a need for further surgery, see if he can have spinal anesthesia. general will just make him worse.

<Trying to figure out what is going on with him actually has stemed from him having a extremely low testosterone level. The Dr. I work for after speaking with her about symptoms etc went woah there is more to this then just the testosterone and we have been running ever since>

Check out [URL="https://www.womensinternational.com/request_referral.html"]https://www.womensinternational.com/request_referral.html

You may be able to find a hormone specialist who is not a run of the mill endocrinologist. Hormones for someone with his history needs to be more specific. Too many use a shotgun approach.

< He has been to a neuro, who I feel blew him off and my husband also used some of the "tools" he was learning in speech pt(for memory and cognitive loss).>

Most neuros are worthless. If they can not image it on a CT, MRI or EEG, it does not exist.

<As far as calling them CHI's instead of concusion's is due to that is what my doc has called them(I am a M.A. in a PCP's office-yes he is a pt, I know I know HIPPA LOL he is ok with it ;o)) >

Yes, laugh about HIPPA. It is a joke anyway. Did you know that a collection agency has access to all of the medical records for patients who do not pay their bills? Anybody with a business relationship to the patient's health care has access to the medical records.

<I believe the reasoning is we don't have great documentation on them, other then reports from family etc
. Since I haven't been around that long some is very hazy, other then there have been a hell of a lot of them for someone his age-hell for any age. He will only be 40 in May. The reasoning for a lot of them was a daredevil when young and no one tried to control it even after several concussion's/CHI's with LOC. >

It would be worthwhile to put together a list of any suspected head injuries, including any suspected that did not include a LOC.

<Also he was a combat medic in the first Gulf war-on the ground with a Marine Battalion. >

Give him a hug for me and say Thanks for serving. My daughter is a Combat Medic and served in OIF in Kirkuk. She married a Marine who fought in Falluja.

So, he has Multiple Concussion/Impact Syndrome with PTSD on top. That is a horrible mix.

<He has not undergone nuero-psych testing as of yet, the neuro he saw wanted us to finish the work-up on his failing pituitary gland before anything else. Which the endocrinologist he is seeing is basically saying it is failing due to the number of head trauma's he has had and probably not "fixable".>

The NPA is still worthwhile. The SSDI application will want the information. NPA's can take a while to get done. I doubt the endocrinologist will be able to change much even with good hormone therapies.

<We have been discussing the SSDI, but need someone to be able to say this is permanent and disabiling, still working on that. See the endocrine for a follow-up next week, hopefully we can get it there. I am no longer comfortable with him going back to work.>

Start a log of the problems he has had trying to work. Mistakes made, arguments with others, things lost.

<His greatest struggles right now is remembering things(questions, conversations,peoples names, or significance of people's names), one track thinking or obsessing on one thought process and not being able to move to another and the loss of words. >

Classic PCS/Multiple Impact Syndrome. The difference being PCS can be trqansitory. MIS tends to be the start of a long downward progression.

<I was told by the pt to give the words up instead of trying to "make" him remember them, that it would just frustrate him and me. At least we are at the point where he no longer gets angry when I tell him a word or finish a sentence/question when he can not place it or remember it.>

Did the pt tell you to help him with words? Yuck, that sounds counter-productive. I doubt you have been together long enough to read his mind as well as he would need. LOL

I will look into the Carondelet support groups we are very familiar with carondelet in general and any help at this point would be great!!! I have no support system here in Tucson. My family is in So Cal and his family is not really a help at all, they even now since it has been explained just think he is being stupid, or a pain. They have no idea and no want to have an idea of what we both deal with daily ;(

tell friends and family to watch the YouTube video series (6 segments) called "You Look Great" by John Byler at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be It takes about an hour total.

If anybody wants more info, they can download the TBI Survival Guide at www.tbiguide.com

<So I think I answered most of your questions, as soon as I can I will PM with an email, would love to chat with your wife!!!!!! Anyone that has dealt with any of the things we are would be great!!!>

You can send a message to a moderator and they can forward your email to me. I can then give it to my wife. Brain Injury Support Group was great tonight. She is a great support for the wives of TBI survivors.

We had a speaker tonight who suffered a severe injury from a fall at top speed while training for the Olympic in women's cycling in 1984. Her first doctor called her parents asking if he could harvest her organs. They found her a different doctor. She spent 3 months in a coma and 3 years learning to talk and walk. She has traveled the world winning Olympic medals as a ParaOlympian. She does both cycling and running.

She has a slogan:

"It's not how to survive the storm, but how you dance in the rain."