[mastiffmom]

Hi, I need some advice. My neurologists follow up appointment has been moved back a number of weeks and physical therapy is confusing the heck out of me.

My background is that I am a 47 year old female and I have had numerous concussions. All but the last one I just shook off and ignored. The 1st really bad one was in 2001 when I was assaulted. I defended myself and I was thrown through a wall in the process - well all of me but my head and neck went through. I believe I had others before that one due to falls from zip lines and timbering accidents but the after effects had been minor by comparison. The one in 2001 left me with falling problems, insomnia, memory issues and difficulty with spacial relationships. I also lost my verbal filter and my social skills suffered. I often drop things or miss what I am reaching for. Prior to the assault I loved hiking and spent a great deal of time in the woods. I never got lost because I had a good memory for direction. After it often got lost in parking lots (no that is not a joke) and my math skills suffered a great deal. I could not remember my middle son's birthdate and a number of other its of important personal information. At the time I was told I had PTSD and I went through a number of years of great annoyance because of the misdiagnosis. Bluntly a PTSD / panic attack diagnosis is extremely debilitating as after you get one all doctors see is that. Everything is then a panic attack and if you are a poor advocate for yourself you can miss out on needed medical treatment. I did try seeing assorted psychologists but other than discussing being raped / beaten up to the point it became a boring subject I did no real good. (the fact that I got bored with repeating a traumatic story should give some idea as to the effort I put into fixing the nonexistent panic attacks - you have to tell that sort of story a lot to get to the point you find repeating tedious instead of stressful) We will skip the drama except to say that I annoyed the crap out of doctors because I kept refusing anxiety meds and insisting upon their following up on other possibilities. I did improve some of the other physical damage through surgeries but the ones I described above never went away. I did however learn some coping techniques on my own and without realizing I was doing so. This served to make getting a proper diagnosis even harder. Prior to the assault I had been an office manager at a university but I ended up on disability. I was widowed within a month of that happening and later remarried and was widowed again 2 years ago. During the time I was married to my most recent late husband (Colin) I had a number of falls and on occasion I was told I had lost consciousness but I was determined to ignore the "panic attacks" as I hated the anxiety medications that were thrown at me when I brought them up. I did not remember losing consciousness and assumed witnesses were blowing things out of proportion. I was sure that I was not having panic attacks as I was never stressed when the incident occurred until after the symptoms kicked in and was bluntly highly offended that nobody was listening to me. During the past 4 years an accident with a cow, another with one of my mastiffs and possibly one when I fell at the social security office all resulted in what I believe to be other concussions. Each time my symptoms worsened but I was alone with my daughter who was a toddler. My late husband had brain cancer and my sons were deployed. Due to my disability I had no close friends to call upon so I basically took care of myself at home until I was well enough to drive and then I was well so why bother with a doctor, right? OK, I know the logic was messed up but at the time I was in survival mode and my focus was on taking care of everyone else. My final concussion was in April of this year and my fiancée insisted I go to the ER. I was diagnosed with a concussion and I have been having serious issues ever since. Memory, nausea, phantom numbness, memory loss, emotional issues, headaches, horrible pressure in one ear and incessant ringing in the other, actual panic attacks (ironic huh?) speech issues (minor word loss and memory glitches). Those are off the top of my head and as I have short term memory issues I am sure I am forgetting a few things but you get the idea.

I finally ended up seeing a neurologist but we live in a fairly rural area and doctors are at a premium so my follow up visit keeps getting moved back. I have been to physical therapist office a few times for the dizziness but there are 2 ladies I have seen there and while one is great the other upset me so much Friday I left early and in tears vowing never to go back. The one who is useful helped me see the pattern where I had been having and recovering from concussions over the years and pointed out that I was using the same coping mechanisms they taught patients in order to deal with the symptoms. The other one however had me in tears Friday because she kept getting nasty with me for repeating myself and insisted upon treating me like a dimwitted mental patient instead of realizing that my speech issues get in the way of expressing myself (I am far, far better in writing than when attempting to speak) She also, ignored things I had told her such as that I had to get my fiancée to drive me down from our small town an hour away as I cannot stand to look at the road moving while driving and the fact that I was having nausea issues due to ulcers / GERD issues (part of my digestive system was removed after the assault and I can get really sick to my stomach so it was messing up my test results). Then after ignoring me she got mad and told me I was not testing correctly and that my eyes were not bouncing around enough for the symptoms I was having so I needed a shrink for panic attacks not physical therapy. She also told me I should not be able to read. I have an above average IQ and used to speed read. I do not read the same way normal people do. Instead of reading letters (phonetically) I read word shapes (much like you know a daisy is a daisy just by looking at it without getting out a botany book) so by using a kindle app on my computer and magnifying the words to their maximum size I can read without moving my eyes and making myself sick.

Anyway the long and short of it is I suspect my verbal skills are impaired enough that I am messing up in some way while communicating with them and I might even be taking the wrong tests. When my late husband died I lost my secondary insurance and only have medicare due to my disability. I really cannot afford to waste a lot of time and effort on testing that is going nowhere and I am looking for suggestions especially of books that might help me find coping mechanism on my own and feedback as to the necessity of using physical therapists.

[Mark in Idaho]

Mastiffmom,

Welcome to NeuroTalk. I'd love to help you but I struggle to read long posts unless there is a double line spacing every five lines or so. My eyes can not find the start of the next line. If you can copy and paste your post into a new post with spacing added, I'll read it and try to help.

My best to you.

[Abbilee]

I also couldn't read this

Please do repost!

[mastiffmom]

I am sorry I did not think of that. Hopefully this will be better. I get so frustrated talking that I write too much

Hi, I need some advice. My neurologists follow up appointment has been moved back a number of weeks and physical therapy is confusing the heck out of me.

My background is that I am a 47 year old female and I have had numerous concussions. All but the last one I just shook off and ignored. The 1st really bad one was in 2001 when I was assaulted. I defended myself and I was thrown through a wall in the process - well all of me but my head and neck went through.

I believe I had others before that one due to falls from zip lines and timbering accidents but the after effects had been minor by comparison. The one in 2001 left me with falling problems, insomnia, memory issues and difficulty with spacial relationships. I also lost my verbal filter and my social skills suffered. I often drop things or miss what I am reaching for.

Prior to the assault I loved hiking and spent a great deal of time in the woods. I never got lost because I had a good memory for direction. After it often got lost in parking lots (no that is not a joke) and my math skills suffered a great deal. I could not remember my middle son's birthdate and a number of other its of important personal information. At the time I was told I had PTSD and I went through a number of years of great annoyance because of the misdiagnosis.

Bluntly a PTSD / panic attack diagnosis is extremely debilitating as after you get one all doctors see is that. Everything is then a panic attack and if you are a poor advocate for yourself you can miss out on needed medical treatment. I did try seeing assorted psychologists but other than discussing being raped / beaten up to the point it became a boring subject I did no real good. (the fact that I got bored with repeating a traumatic story should give some idea as to the effort I put into fixing the nonexistent panic attacks - you have to tell that sort of story a lot to get to the point you find repeating tedious instead of stressful)

We will skip the drama except to say that I annoyed the crap out of doctors because I kept refusing anxiety meds and insisting upon their following up on other possibilities. I did improve some of the other physical damage through surgeries but the ones I described above never went away. I did however learn some coping techniques on my own and without realizing I was doing so. This served to make getting a proper diagnosis even harder.

Prior to the assault I had been an office manager at a university but I ended up on disability. I was widowed within a month of that happening and later remarried and was widowed again 2 years ago. During the time I was married to my most recent late husband (Colin) I had a number of falls and on occasion I was told I had lost consciousness but I was determined to ignore the "panic attacks" as I hated the anxiety medications that were thrown at me when I brought them up.

I did not remember losing consciousness and assumed witnesses were blowing things out of proportion. I was sure that I was not having panic attacks as I was never stressed when the incident occurred until after the symptoms kicked in and was bluntly highly offended that nobody was listening to me.

During the past 4 years an accident with a cow, another with one of my mastiffs and possibly one when I fell at the social security office all resulted in what I believe to be other concussions.

Each time my symptoms worsened but I was alone with my daughter who was a toddler. My late husband had brain cancer and my sons were deployed. Due to my disability I had no close friends to call upon so I basically took care of myself at home until I was well enough to drive and then I was well so why bother with a doctor, right?

OK, I know the logic was messed up but at the time I was in survival mode and my focus was on taking care of everyone else. My final concussion was in April of this year and my fiancée insisted I go to the ER. I was diagnosed with a concussion and I have been having serious issues ever since.

Memory, nausea, phantom numbness, memory loss, emotional issues, headaches, horrible pressure in one ear and incessant ringing in the other, actual panic attacks (ironic huh?) speech issues (minor word loss and memory glitches). Those are off the top of my head and as I have short term memory issues I am sure I am forgetting a few things but you get the idea.

I finally ended up seeing a neurologist but we live in a fairly rural area and doctors are at a premium so my follow up visit keeps getting moved back. I have been to physical therapist office a few times for the dizziness but there are 2 ladies I have seen there and while one is great the other upset me so much Friday I left early and in tears vowing never to go back.

The one who is useful helped me see the pattern where I had been having and recovering from concussions over the years and pointed out that I was using the same coping mechanisms they taught patients in order to deal with the symptoms.

The other one however had me in tears Friday because she kept getting nasty with me for repeating myself and insisted upon treating me like a dimwitted mental patient instead of realizing that my speech issues get in the way of expressing myself (I am far, far better in writing than when attempting to speak)

She also, ignored things I had told her such as that I had to get my fiancée to drive me down from our small town an hour away as I cannot stand to look at the road moving while driving and the fact that I was having nausea issues due to ulcers / GERD issues (part of my digestive system was removed after the assault and I can get really sick to my stomach so it was messing up my test results). Then after ignoring me she got mad and told me I was not testing correctly and that my eyes were not bouncing around enough for the symptoms I was having so I needed a shrink for panic attacks not physical therapy.

She also told me I should not be able to read. I have an above average IQ and used to speed read. I do not read the same way normal people do. Instead of reading letters (phonetically) I read word shapes (much like you know a daisy is a daisy just by looking at it without getting out a botany book) so by using a kindle app on my computer and magnifying the words to their maximum size I can read without moving my eyes and making myself sick.

Anyway the long and short of it is I suspect my verbal skills are impaired enough that I am messing up in some way while communicating with them and I might even be taking the wrong tests. When my late husband died I lost my secondary insurance and only have medicare due to my disability.

I really cannot afford to waste a lot of time and effort on testing that is going nowhere and I am looking for suggestions especially of books that might help me find coping mechanism on my own and feedback as to the necessity of using physical therapists.

[Hockey]

Hi and welcome to NT!

Like the others, as it was long and lacked spaces, my brain couldn't get through your entire post. I am, however, impressed that you could write it. I am also impressed by you.

From what I could read, I know that you are a survivor. Wow! Anyone who has lived through what you have, will be able to cope with your latest TBI.

As you get accustomed to the Board, you may find that each of us has favourite approaches. I'm the "cognitive therapy" advocate. From my own experience, and from sources such as "The Brain that Changes Itself," I am a big believer in neuro-plasticity.

Accordingly, I will ask you what I ask most newbies: have you had a neuro-psych exam to identify your deficits and target therapies? Have you seen a neuro-optomologist and Speech Language Pathologist? Have you consulted an Occupational Therapist?

There are therapies and workarounds that can help improve your function. To get them, however, you will have to advocate for yourself. From what I read, you're a lady who can get that done.

In the interim, it is considered wise to get as much physical and mental rest as possible, eat properly and avoid alcohol and caffeine.

BTW, mastiffs are beautiful dogs. The strong, silent type.

[Mark in Idaho]

I agree with Hockey. A Neuro Psych Assessment would be a good start. With such a report in hand, you can overcome the objections of the disbelieving doctors.

You sound like me in that I do much better on the keyboard that talking. On the keyboard, I can reread what I am typing to edit and stay on thought.

It is important to find providers (PT and otherwise) who believe in you and don't cause frustration and stress.

I am not sure of what help you are asking for except help getting across to doctors.