Hello all
i just want to take a moment to say hi.
i have found the site doing some research on Dr Hepworth and couldn’t be happier with the support and wealth of infomation provided by the members.
Well to start with i was involved in a rear end collision motor vehicle accident in mid 2017,
severe whiplash and “Armlash” (if there is such a thing) my driver seat was partially ripped from the vehicle
althought i was treated and released the same day at ER, all was very quick and was told i would be sore tomorrow and to follow up with my primary care doc.
I had a neck and back CT at the time that was determined to be negative,
The days that followed the head aches and sensitivity to light and sound became insane,
Initial docs thought i had a concussion and mtbi, as slurred speach and word finding problems, adding words together to make new words , saying cat when i ment dog, loss of memory (kids birth days and things i should know) confusion, terrible neck and mid-back pain, and crazy base of scull pain
This led me first to a cranial sacrial DO doc that specialized in head aches, he did soft adjustments that seemimgly were not helping. i began to have a terrible smell in my nose, maybe like a burning smell and this had lasted for about three months, the other many symptoms were progessive and depession and anxiety and panic attacks became more and more frequent, i began to isolate as much as possible,
i could not drive and even being driven by others triggered major outburst and panic attacks from what i percieved as iniment accident on every turn, the fear of crashing, being crashed into.
I was finally referred to a neurologist for head aches and thought finally we would get answers.
First visit was a joke and it seamed that waiting the month to see him, was not getting any info as to the cause of the symptoms.
He suggested ssri meds to feel better, although he could not give clear answers to these symptoms, he suggested post concussion syndrome and depression. he also got a brain Mri that was unclear and did not show any usefull info.
when i reserched the ssri meds, it was clear there was a suicide risk as a side effect as well as others that were concerning.this was not a risk i was willing to take
Fast forward one year my doc says treatment is not working and maybe i should get a neck and back Mri.
these had these had shown c5 disc bi lateral herniation, c2 minor bulge,c7 minor bulge, t7 disc rupture with central canal stenosis, t8 and t9 bulges
My then first Nero-surgeon suggested c5 disc relacment with mobi-c artifitial disc, and to just wait out the t7 related pain untill i just cant handle it.
This was all a shock to me and I was told I would never be able to lift more that 35 lbs if i chose the surgery or if i did not.
I went down the rabbit hole of conservative options and therapy , covid then happened to us all and time passed with no solid improvements,
Last year all of a sudden things became worse
i woke one morning with crazy ache and pain in my s/c joint and neck that moved to my shoulder joint, and then the following days my arm had pain ache in forearm and wrist grip hand grip became quite weak.
My tinnitus then became different from the" normal every once in a day or two i would get a high pitch noise that would come and then go in about a minute or less" to a constasnt noise that was different.
it gets louder and sometimes it pulses static like or sometimes its like water running other times it is like
gang gang gang gang… pulsing. my base of scull on the right was crazy sore . all could do was to ice it and isolate from peolpe
i also developed a burning feeling, maybe like sand paper being dragged across skin,on my temple on the right
I then found the name pulsitive tinitus during reserch and was able to describe this to my new neurologist as increasing in frequency as well. i had previosly called it whooshing.
This is were i first met Dr Hui.
My first visit brought me to tears.
Dr Hui made me feel like he was actively listening, he believed me when i explained these crazy symptoms and told me he understands.
He said that the other docs were just not trained in this area and they all probably mean well.
This was the first time that i felt a doctor was taking my problems seriously.
I was so so happy, he made me cry first then laugh, then immerse myself in research the minute i got home.
From there we did catheter based dynamic veinogram that showed major compression of the left IJV at c1 and styloid ,neutral and with head turn complete occlusion and back flow out to the right side from other veins,
we have also done ctv that was not showing as much blockage , but nurse did head tilt instaed or head turn , and would not do head turn after i asked what about turn? “to much radiation”
Mrv was some what inconclusive
By then my blurred vision episodes were getting more frequent, my ears were always sore more on the right than left, the tinnitus was changing to poly-tonal (be booo be booo be boo, with some chan chan chan chan… driving me nuts, felt as if i was going cross eyed and the pressure head aches were tremendous,
Referred to neuro optimologist for work up for papiledema
requested lumbar puncture, and started diamox meds
At first the diamox was a “god send” as it had helped with the head pressure head aches and my eys slowly stopped feeling bulggy and sore my ears started to feel better,
my head aches then began to change over time ? weeks to months… my eye pain became increasing ly different and a sharp pain developed every time i turned my eyes to look left or right, i became lethargic
moody snappy increasingly depressed , i was out of meds on a friday and could not refill, over the week end my newr symptoms got better , i could think a little more clear, i decided to stop taking diamox as maybe it was some how making thing worse or different
Met with DR H to explain the latest and suggest ed to take it every other day and maybe that would help.
A week or so after i started again i had a kidney stone episode and ended up in ER again. yeeesh
Doing more research showerd a correlation with diamox and kidney stone formation. i then stopped again
My Lp was yeesh. some what painful during initial poke, the doctor doing the Lp remarked that there was a very low opening pressure of " lets call it a three" and was unable to get more that a small amount of csf “one ml” if i remember correctly
The LP was done about two weeks after my starting diamox and it is unknown if these meds have had an effect on the LP readings.
After the procedure i went to a waiting room to rest, i was told i could lay there for two hours, but was let out early as they felt i was good to go and was told i could got to work or do what ever just no lifting or straining.
I went home to rest but the days to follow be came inceasingly painful, my head felt like it was going to explode and the only thing i could do was lye down on my back with ice on the base of scull over and over. when i tried to get up I had the worst type of head pain to date. i finally called Dr Hui’s office to ask for help and was told that i most likey have a csf leak and that the blood patch had not held. At the time i said ok lets schedule to do another patch, but with in another couple hours it was apperent that i could no longer take it and went to ER for emergecy patch.
Again with in two days the patch had failed and i was then on my way for a third blood patch, I went home again before two hours of rest at hospital and just did bed rest for two days with minimal getting up.
Met with Dr Hui again to discuss options and he felt there was only a few doctors that could do a procedure to open up the IJV , He also started me on Plavix.
While i waited for the appoinment with Dr Hepworth that changes i felt on plavix were extraordinary,
during my first week i had started to think clearly again, as the brain fog is so debilitating, i wrote lists organized my things work tasks, my depression panic and rage had gotten much better and i felt some what more normal than i had in years( since the accident). although it has helped for the time being it was by far the best intervention, in the last couple months i have had to switch brands of generic plavix, and it had a huge effect negatively, increasing head pressure and pain, depession panic and anger increase, after a week got new meds , somewhat better but still in flux, then switched to plavix brand not sure if there is a difference as i still have constant flux up and down,
I wonder if there is just a point at which the meds can help but after that, only allowing normal flow back threw the IJV will be back to normal.
I truly Feel that up to this point Dr Hui and his intervention has saved my life as the depression and head pain was increasing and unbearable (with out hope).
He has given me hope and although i am scared about the procedure there is light and life to live at the end of this all
Evaluation with Dr Hepworth went well and he said i have VES affecting left IJV between styloid and C1, also the CTV showed that on the right side my IJV is being blocked lower down the neck with head turned to right, by my omahyoid muscle, and we will also detach or clean up any scare tissue or adhesions that may be contributing to the right turn blockage. He said my styloid are not long but I have the calcified styloid ligament
i Have yet to see a 3d image that shows the styloid as i have seen here on the site,
but Dr hepworth did go over the CTV to show the areas of compression, that he would be able to help with.
We are scheduled for this coming September for op.
I am probably missing more to the story but am exhausted from all this typing lol
I just want to thank all you folks for making this site
It brings me to tears how great full I am for all the support i have read from members, info and stories, and Hugs, i feel at home here
I finally can talk to people that have gone threw this or dealing with it now and that in itself is giving me hope.
THANK YOU ALL
you are a good son to your mother!
there is much to look forward too thank you for the kind words and inspiration