Jennifer Brea: I have craniocervical and atlantoaxial instability

[Wayne]

I started to notice tinnitus ...... in retrospect feel like it caused some brain damage.

A quick note on "anticholinergic drugs" such as Benadryl: -- Most cold medications and antihistamines are anticholinergic, which makes them ototoxic. These drugs work by inhibiting acetylcholine receptors from uptaking acetylcholine. These receptors are all over the body, but especially prevalent in the brain and neurological system. They are also present in the inner ear.

I read another story where a woman was going on a 2-3 week ship cruise, so her doctor gave her a drug patch that would gradually release an anticholinergic drug (Phenergen) so that she wouldn't get nauseous (my tinnitus started when I was given an anticholinergic drug promethazine as an anti-nausea medication). She finished that cruise with badly impaired memory, which had not returned four years later. -- So yes, these drugs can also cause brain and/or memory dysfunction.

 

[xrayspex]

A quick note on "anticholinergic drugs" such as Benadryl: -- Most cold medications and antihistamines are anticholinergic, which makes them ototoxic. These drugs work by inhibiting acetylcholine receptors from uptaking acetylcholine. These receptors are all over the body, but especially prevalent in the brain and neurological system. They are also present in the inner ear.

I read another story where a woman was going on a 2-3 week ship cruise, so her doctor gave her a drug patch that would gradually release an anticholinergic drug (Phenergen) so that she wouldn't get nauseous (my tinnitus started when I was given an anticholinergic drug promethazine as an anti-nausea medication). She finished that cruise with badly impaired memory, which had not returned four years later. -- So yes, these drugs can also cause brain and/or memory dysfunction.

did your tinnitus clear up? I have taken promethazine before.....I know they all are in same class. but yea try to avoid them as much as possible!

 

[Wayne]

did your tinnitus clear up?

Unfortunately, no, even though I took only one dose. I'd say it's possibly improved by 10-20% or so, and is still quite difficult to deal with. I'm currently doing almost daily mHBOT, and have hopes that will improve things for me in the coming months.

 

[xrayspex]

Unfortunately, no, even though I took only one dose. I'd say it's possibly improved by 10-20% or so, and is still quite difficult to deal with. I'm currently doing almost daily mHBOT, and have hopes that will improve things for me in the coming months.

oh wow, sorry didn't catch that before if you mentioned it. one time......I hate to think what kind of insult to injury I have added with different medication trials over the years....not taking any now....took me long time to learn most meds not safe even in smallish amounts for me

 

[pattismith]

Gingergrrl---Have you heard of PT Kevin Muldowney? They mention him on the Beyond the Measurement facebook group --he has made a special protocol for EDS you can get on Amazon and take to a local willing PT. I do not know if I have EDS but I do know I have hypermobility and some instability in my neck with stenosis--I watched some of Kevin's vids on youtube and felt his approach would be a good way for me to approach my attempts at strengthening and supporting my neck. His belief is that its not useful to do any adjustment on your neck unless you have first strengthened your whole body and he has designed a protocol with specific order to do that. I feel like its worth a shot because you can go at it really slowly if you want---my neck got more subluxated after hit in head and had a concussion this year. But I dread any sort of manipulation because I get a lot of pain aftermath I think because of the cervical stenosis--too much impingement and when I am "in" it actually hurts more.

Thank you very much for sharing this useful information, and thank you Jeff and Jen for sharing your precious way through medical world.

I don't have myself any hope to meet the right doctor to rule out CCI, but I noticed laxicity problems in my upper spine and my hips for years.
Staying in bed too much may have worsen this problem.
Progressive xyphosis is one of the symptom associated I noticed.
Anyway, I have already found my own tecnic to stretch my cervicals daily and to correct my thoracic vertebrae line up.
I have just bought Muldowney ´s book and found some tecnics to improve my cervical strenght . I started a week ago and already feel much better. I can move my head better and it is less painful.

 

[xrayspex]

Thank you very much for sharing this useful information, and thank you Jeff and Jen for sharing your precious way through medical world.

I don't have myself any hope to meet the right doctor to rule out CCI, but I noticed laxicity problems in my upper spine and my hips for years.
Staying in bed too much may have worsen this problem.
Progressive xyphosis is one of the symptom associated I noticed.
Anyway, I have already found my own tecnic to stretch my cervicals daily and to correct my thoracic vertebrae line up.
I have just bought Muldowney ´s book and found some tecnics to improve my cervical strenght . I started a week ago and already feel much better. I can move my head better and it is less painful.

so happy to hear this patti smith! I am curious how you have chosen to go about using Kevin's EDS protocol? even tho I don't have straight up EDS I initially started out at the beginning to do way he said but it started to be too much for me so I have cut back the time and frequency of it and am debating whether to keep doing the leg raising one on your stomach because I think its making my neck subluxate more (the position) altho strengthening is good. My neuro reflexes have gotten more hyper lately so I am slowing down re-evaluating. MY local PT says since I am not classic EDS and most of hypermobility in neck that its ok to do the cervical strengthening ones out of order of his book so now I am debating just first trying to strengthen neck and shoulders to deal with instability thats mostly in that area. Still trying to figure it out. I wish he lived near me --I did call his office and they said people from out of town come do one time consults where he blocks out 4 hours to evaluate and recommend for you.

 

[Diwi9]

Jen had a craniocervical fusion yesterday. Here is her update on Twitter:

https://twitter.com/i/web/status/1068199034089816068

EDIT: looks like Jen deleted the post. It had been shared by MEAction. Anyway, she looked good and reported that her sleep apnea seemed resolved, as well as her headache behind her eyes.

 

[Diwi9]

Maybe this link will stay up:

https://twitter.com/i/web/status/1068202611550105600

 

[Dainty]

Addressing structural issues impacting the base of my skull and other key areas was absolutely key to my recovery as well. I did it through cranial osteopathy, which is often confused with craniosacral therapy but is actually a much more involved medical treatment.

 

[Strawberry]

Maybe this link will stay up:

https://twitter.com/i/web/status/1068202611550105600

Thank you for posting! The original link that you had posted (before it was removed) had a comment from her that there were still issues that she needed tethered cord surgery for. @jeff_w Since you had the same tethered cord surgery, was that found during/after the initial surgery? Or from the initial MRI?

@JenB Best of wishes for a full recovery!

 

[Sushi]

Maybe this link will stay up:

Also on Facebook: https://www.facebook.com/jenbrea/?_...PRT-tTqTsBfuo9PSWUk&fref=nf&hc_location=group

 

[Gingergrrl]

Maybe this link will stay up:

I couldn't get the first link to work (and thought it was b/c I am not a member of Instagram or Twitter) but the second link worked perfectly and I was able to read the entire thing. Thank you so much for sharing that with us @Diwi9!

Congrats to @JenB for getting through such a long and arduous surgery and I am hoping that you will have an outcome like Jeff's. Thank you for sharing the journey with us.

Am tagging @Forçe e Honra (just in case you have not seen this yet)

 

[rel8ted]

@JenB wishing you wonderful year of PT and recovery!

 

[StarChild56]

Jen had a craniocervical fusion yesterday. Here is her update on Twitter:

https://twitter.com/i/web/status/1068199034089816068

EDIT: looks like Jen deleted the post. It had been shared by MEAction. Anyway, she looked good and reported that her sleep apnea seemed resolved, as well as her headache behind her eyes.

This gives me so much hope. Thank you for sharing.

 

[StarChild56]

I couldn't get the first link to work (and thought it was b/c I am not a member of Instagram or Twitter) but the second link worked perfectly and I was able to read the entire thing. Thank you so much for sharing that with us @Diwi9!

Congrats to @JenB for getting through such a long and arduous surgery and I am hoping that you will have an outcome like Jeff's. Thank you for sharing the journey with us.

Am tagging @Forçe e Honra (just in case you have not seen this yet)

Congrats to @JenB! You have given me so much hope!

Thank you, @Gingergrrl - I had not seen it and sometimes I miss things, get confused so you tagging me was very helpful.

Wow!

 

[Pendergast]

We love you @JenB ! You are so tender!
Our best wishes for you and Omar

 

[xrayspex]

sending healing energy Jen! you and Jeff are pioneers....really helps to see you guys go for this--inspiring

 

[xrayspex]

I've been thinking about this for days.


TLDR: this mechanical effect may become a self-reinforcing cycle because the longer we stay in bed, the "looser" and more de-conditioned those tendons and surrounding muscle tissue become. Again, in people who for whatever reason may be predisposed to this (like EDS, folks with past head or neck injuries, etc.).

.

what kind of chiropracter do you go to?

 

[Sparrowhawk]

Addressing structural issues impacting the base of my skull and other key areas was absolutely key to my recovery as well. I did it through cranial osteopathy, which is often confused with craniosacral therapy but is actually a much more involved medical treatment.

Are you able to say any more about the specifics of that cranial osteopathy approach? Many thanks in advance.

 

[Sparrowhawk]

what kind of chiropracter do you go to?

I haven't been for a while but I tried two different chiropractors -- I wasn't aware that there were "kinds" so I apologize I can't give more specifics.