Problems with vestibular and PCS diagnosis- HELP
 

Hello, I'm new and came across this site today and it seemed to be going in a direction I need at this time. Also, I am happy to see the activity here, unlike many others. I need help from those who I am sure have been through much the same as I. My story is long but I will try to make it short.

Two years ago I fell from standing 8 ft on a ladder hitting the ground and lunging backward into a loaded metal wheelbarrow striking it just abouve my spinal column, it in turn went a couple of feet. Not until recently did I believe I was knocked unconscious for a short but undetermined time. I did not seek medical attention at the time but was dazed and confused for a period of time. Not until I "failed" vestibular rehab and the therapist told me I had neurological symptoms as well as vestibular symptoms did this become important. Doctors to this point dismissed it completely.

This began two years ago. After 5 months, I practically dropped, without warning with severe vertigo, vomitting, confusion. Over a few days the vertigo and walking problems stayed with me. I did go to the Doctor who treated me with meds and expected it to go away. Well, it didn't. This went on for a while and I was referred to an ENT (small town) who did testing eventually and found nystagmus. He tried a couple of meds and nothing helped. The ENT said it was over his head. Eventually I was sent to a neuro otologist and convinced to have dex shots which did not work. All he wanted to do was more and afterward I starting having serious balance issues as well as walking, more cognitive problems, tinnitus, etc. Up to that time (6 months) I had about 8 more severe episodes taking days to recover. In total probably about twelve episodes. My vision was becoming impaired, congniton was embarrassing and fatigue was horrible not to mentions nasuea and vomitting. I continue with this today. Now, I have added severe balance problems (use cane), pulsing in my ears, chronic fatigue, brain fog and cognition problems as well as some bad sensitivity to noise as well as loss of taste and smell for the past 9 months. I am very limited in computer use, televison and activities (go figure) and anything requiring dexterity and stability. I had a good job as a cost accountant and did very well as a woodturning artist and just for kicks, remodeling. So I went from 60 to 0 quickly.

Eventually I went to a specialist in Nashville who diagnosed me with SCD after (in his words) I failed a vemp test miserably as well as not being able to get a baseline on a posturography. Six months later I was undiagnosed. He sent me to VRT where the issue of head injury was brought up as well as vestibular and this was passed on to the the Doctor. Well, he dismissed this, undiagnosed my SCD after a CT of my temporal bone. In his words he told me he didn't know what was wrong or what to do. Go back home and let your primary take care of you and if I wanted I could come back in six months I could. Well, the primary just grunts when given information.

Now, I'm very desperate. I haven't been able to work in a year not to mention anything else.

Please excuse my long post but I know questions are coming (hope?) My only alternative is Mayo in Jacksonville where I have and appointment but now I am apprehensive about going there.

Thanks in advance,
Mike

Mike

When vestibular, they do things in Physical therapy. I don't see anything in your recording of this. I would see if your primary would send you to one.
To see if you can get this kind of checking done. I am lost with all
you had done. It should have been in this area if they suspect vestibular
therapy would help.

I had this, and it was the thing that helped me the most.

Donna:grouphug:

I had a similar injury like yours and had concussion and brain contusion (2.4 years ago). I was progressing for the first 4-5 weeks then everything got worse just like that.

Dizziness, imbalance, nausea, fatigue, tinnitus, smell and taste disorder etc., But very slowly some of the symptoms has improved like smell and taste, fatigue but dizziness, imbalance, nausea still doesn't want to leave.

I have some Sensory Processing Disorder and think it is mostly coming from ear and vision. I went to all kinds of specialists Neurologists, Neuro-otologists etc., many MRIs, CT Scans, ENT tests etc., No one was able to help me so far. They all tried but nothing worked.

Few things helped but all of them are temporary:
1. Xanax (not on it anymore since it stopped working and don't want to go up on dosage)
2. Trigger point therapy/Myofascial pain release on the neck close to the skull
3. Neurofeedback

Now I am going for Vision Therapy once a week and it also helps only temporarily.

I work from home and still long ways to go to a office set up and handle all that.

I can feel what you are going through with that dizziness/imbalance etc., and is a tough one to diagnose and treat. I am going to see my ENT ask about Perilymph Fistula which can cause lot of terrible symptoms. No MRI/ tests can show that and the only way is exploratory surgery and is a hit or miss.

Mike,

Is your vestibular trouble made worse by visual stimulation?

If so, you made need visual therapy before vestibular therapy can be effective. For me, I struggled with vestibular therapy in the beginning and my therapist noticed that I was having some visual problems. She then began focusing on visual exercises first. Once I made some progress there, she added in more stuff related to balance. It went MUCH better after I had done some work on my visual system.

I feel for you, because I've been there. Mine resulted a few days after my accident and I am still in therapy 6 months later. (It took 3 months to figure out I needed a new neurologist, because the first one didn't understand PCS.) So i guess 2 months or so of vestibular therapy?

Good luck to you... you are not alone!

Mike,

My symptoms got terrible only after 4-5 weeks and it happened just like that. Infact I was progressing after my mTBI. For me both visual and auditory stimulation makes it worse. For vision I am going for vision therapy.

For auditory vestibular rehab doesn't help for me since I think it is coming from sound (not noise). Any normal day to day sound - street noise, fridge, people talking, my own voice etc., making me more dizzy.

Each specialist has their own diagnosis. To give a few : Meniere's disease, anxiety (which I understand), Post Traumatic Vision Syndrome, depression (disagree) etc.,

If I lie down in a quiet place it helps too. Have you checked for POTS? That is another test my doc wanted to do. I am tired of all these tests and no relief. What is the point?

My hearing is ok based on the test. Ringing in ears fluctuates constantly throughout the day. My head is always full like carrying a cinderblock.

I still go to doctors some times (but with no expectations).

After Vision Therapy planning to go back for Neurofeedback again. One thing I forgot to mention is Meditation (transcendental meditation) helps to calm my brain waves. I have been doing on and off and lately I see some benefit. Now I do twice a day (20 minutes each session)

I can't tell you how much I appreciate you taking time to reply. Yep, it's been tough here too. Both of you seem to know what it's like although I haven't had the mtbi diagnosis only a possibility. Meneires and Bppv are still my diagnosis but it's got to be more than that.
The therapist did notice my visual stimulus made me worse and that I think is when he started asking himself questions. Audtory problems really got bad in the spring of this year. I literally jump as if shocked or something with some sounds. Did the same thing with the vemp test (when I was told it was SCD). Loss of smell and taste just about the same time. Street sounds, dogs, my voice, crowded areas are difficult, almost painful but not if you understand. With all the nasea and spinning the only place I get relief is to lie down and hopefully sleep. This can take place from 2-5 times and sometimes more in a day.
By the way, how do I get to this section from the main screen. I was given a link there but (dummy) can't figure it out. Thanks again and if you think or more let me know. It's good to know others understand the struggles.
Mike

Understanding your frustration
 

Hi Mike,
I hate to say "welcome to the club" but it's incredible how many of us have similar issues and no one has a definitive diagnosis or treatment protocol to fix this injury. Everyone is different.

I suffered a tbi from a fall (while walking my dog) 2yrs 9 mo ago. In that time I've seen 30 doctors. Having a constant headache every day since my fall, along with vision and hearing issues, & facial numbness explains my desperation to find answers...hence the huge number of doctors. No, I'm really not crazy and am not/nor have ever been a hypochondriac. ;-))

8 were vision specialists...from ophthalmologists to retinal specialists, to top neuro ophthalmologists to optometrists. I've tried vision therapy (which was unsuccessful). I've been to 2 different brain injury rehabs getting cognitive/speach rehab & PT

I've seen 3 ENT's, neurotologists, 3 physiatrists, a neuro psychologist, psychologist, functional neurologist, chiropractor, acupuncture the list is endless... I've been to Johns Hopkins, University of Penn, Detroit for vision (that was a postive trip - i'll explain below) and Mass Eye & Ear is my next upcoming stop for a 2nd opinion...with fingers xx'd.

I've recently been reading up on HBOT (Hyperbaric Oxygen treatment) that is being used on our returning vets that have tbi. It looks interesting & promising.

I've had just about every conceivable test (also did the testing for SCD which was negative)- with no success. & entirely too many medications which are the worst...so be careful with them!

I've had doctors that have been rude, flunked bedside 101, and have been arrogant & dismissive and or clueless.. and those, I dismiss immediately. You will find doctors that will be helpful... they will be life savers for you through this wild ride of tbi. Take care of your own medical direction. you will be your best advocate and if you're unable to do it yourself... hopefully your partner or close friend or family member can be that person for you.

A few suggestions.
1. DO NOT GIVE UP! Find a good primary care Doc that can coordinate other specialists and the meds they'll want to prescribe. Run that info through your primary BEFORE taking anything.

2.I've recently seen a functional neurologist (might be listed as a chiropractic neurologist). He has been extremely supportive and helpful(unlike the 2 neurologist MD's that I saw) The exercises are helping but as he said... I need to take baby steps to build up to typical vestibular exercises. This is helping

3. There is an eye Dr. (Dr. Feinberg)in Detroit suburbs that does prisms & understands the issues related to vision problems and tbi. Check out her website. vsofb.com I've seen her several times now & she is extremely understanding & helpful.

4. Contact the brain injury program in your state or biaa.org (I think). There are a lot of resources to help people like us and they may provide funding for you thorugh their program as well for rehab services.

5. Rest alot! I am currently seeing a psychologist who also "gets it" and she's stressed the importance of taking care of myself right now. Resting helps. I'm learning to "Pace" myself. Do something, rest, do a little more, rest again...etc. She's helpful to use to "vent" so that I don't bring my frustration home to my husband. (even though he's a good guy and also understands & is extremely supportive)

6. Surround yourself with friends/family that understand. ALWAYS TAKE SOMEONE WITH YOU TO ANY AND ALL DR. APPTS. IT'S REALLY BENEFICIAL TO HAVE ANOTHER SET OF EYES & EARS TO RECAP THE APPOINTMENT AND INSTRUCTIONS.

...and most of all...
7. Find Humor. Laughter helps...ALOT!

Good luck to you. I wish you a speedy recovery!
Marsha

Mike,

Scroll back up to the top of the screen.

See where it says: Neurotalks> Medical Conditions M-Z> Traumatic Brain Injury and Post Concussion Syndrome

Click on "Traumatic Brain Injury and Post Concussion Syndrome"

And you aren't a dummy, you're just concussed :)

Thanks Marsha. It really helps to see this although I'm sorry you are going through this as well. I try to laugh about it at times and my friends and family don't miss a chance either. Have you or do you work. I have not been able to function long enough in a year especially with the unpredictable nature of things.

I wonder if it is those out there trying to get something for nothing that makes it this difficult or do you think with all of our problems they really are that clueless. From what I've seen if a machine doesn't tell them what they want to know then there is nothing to know. I don't mean to be so negative but it gets frustrating. I really appreciate your post. It does let me see I'm not alone and the battle isn't just mine. Hope I don't surpass your 30.

I'm beginning to wonder if I am delivering to the dr. in the wrong way or something. Anyone have suggestions on how to get and keep their attention. I go to Mayo in late October and I've read where they want you to have everything written down no matter how inconsequential you may think it is. I want to keep their attention and espcially want a full neurological exam. I feel congnitve testing would be a great start. I did have one of the short ones in Nashville, when asked what season was it I didn't even know what a season was. After a bit I said Fall, this was April. They told me I did fine????

Smilineyes thank you as well. One of my long time friends called me Dummy , I won't say what I called him. Now I've been tagged weeble wobble. But that's o.k.

Have a good day.
Mike

Type everything up for them.

One doc which is: History of the Problem. Start with your fall, complete description. Then go through progression of symptoms to date.

Next: History of Treatment. Summary of what all, who all, has been treating you. List of tests, scans, etc. Get copies of reports, if you can. They will want to see all this.

Next: Listing of symptoms. all the problems you now have. Put them in categories that make sense. And then Miscellaneous for all the little odd things that don't fit anywhere else, who knows, some of those little things that seem inconsequential may actually matter, so write them down, too.

Also, type up a list of current meds.
Type up a list of previous meds that you no longer use, and why (didn't work, caused side efffects, etc.)
Type up a list of your current doctors, and a list of your previous doctors, name, address, phone, etc.
Type up a list of previous medical conditions, surgeries, etc.

You have almost a month to work on these, which gives you plenty of time to go back through them and fine tune them and make sure you've included everything. Work on them a little at a time, so you don't cause yourself problems.

This way, you have everything ready to give them, and don't have to worry about getting interrupted while talking and losing your concentration, getting frazzled, confused, or that they're not really hearing it all and mess up what they record (ever read your records? It's SCARY how bad a job they do of listening and recording!).

And it saves you writing it all down on the endless forms they give you to fill out, I just write "see attached" and give them the appropriate sheets from my files.

They actually seem to appreciate having a typed sheet handed to them. Then as you and they talk, they can just go down your handouts as they listen. Helps them keep the story and facts straight.

And after 2 years and countless doctors and such, no one is going to fault you for looking overprepared.

This is great. I suppose after a while you feel like no one listens and all have a predisposition to that attitude. Thanks for taking time to put that together. I had my wife look at it and she was impressed. Thanks again.
Mike

you're welcome. I'm 21 months after a massive car accident, and actually I was in better shape right after because then I only had broken bones and very impressive bruises to heal. Now I have complications upon complications, a two page listing of current and former doctors, a three page listing of scans & tests, a two page listing of symptoms and problems, and FINALLY, maybe, a physical therapist (this is PT person #7 at place #6) who is treating ME instead of just an isolated body part, so MAYBE I might now at least stop getting worse.

They may not listen worth a damn, but what will be their excuse for not being capable of reading? It definitely gets their attention and keeps them on their toes. Wish I'd gotten fed up enough to start typing over a year ago.

Thanks again. Sounds like you've been through the mill. Hope things get to looking up for you soon.

It was actually my vestibular therapist who thinks I have a neurological problem. Guees what, the doctor ignored him. I tried to tell these folks all along something wasn't normal besides my vestibular system. Maybe Mayo. Good luck.
Mike

Has anyone had luck with the procedures-Epley, Dix-Hallpike, etc?

My bppv has lessened since my accident, but three months in, I'm still having small bouts every day. In the beginning, I had upwards of 20-30 bouts of vertigo a day lasting anywhere from 30 seconds and longer. I'm now down to a couple of times a day-usually if I look straight up, straight down, or turn over in bed. I sometimes get just a little dizzy walking-not too bad though and now they last roughly 3-5 seconds. Physical therapist tried everything and I still have it although its 1000 times better than in the beginning. I have to go back to see her in a week-she wanted me to take a month off to see if it would resolve on it's own. So far, nope.

I haven't driven in three months-I go back to the neurologist later this month and I'm wondering if she'll release me to drive yet?

Just wanted to say thanks for saying your head feels like you are carrying a cinderblock. This is the exact way i describe my everyday head pain and pressure. Funny how we all use very similar ways of describing our experiences. A friend of mine talked about how he got better from his TBI and he felt like he came out of the big cloud over him. I got so giddy and excited because i called it "my fog".

The easiest way I know to write it all down is to journal it all.

In some ways, you can write it all down here for us, and then take
the report you wrote here to your doctors.

Donna

Do any of you have increased problems when you pick up things with some heft to it. I'm talking a couple gallons of milk, taking the trash out, a sack of poatatoes, etc. If a pet runs by your feet or brushes against your leg does it immediatley increase your imbalance and make you uncomfortable.I know I've lost a lot of muscle mass in the past 18 months which bothers me terribly. I feel weak when picking anything up. In relation to the cinder block post the weight makes me feel as if something is on top of my head pushing my body straight downward to the ground.
Mike