Re: fighting the good fight

[Guest guest]

Hi , Sounds like " life " just doin' what it likes to do! One

positive... losing 20 pounds; that's terrific! And kudos on wheelin'

dealin' the price down on the brace! ...my kinda gal! What's up with

the family members- if you want to share? Wish I could think of some

good advice on sleep situation but I am so used to waking often just

to change positions at night, I have grown to think that is normal.

Must admit, when I visited my daughter last month, I discovered myself

sleeping thru' the night on her perfectly comfy sofa! I was kinda

surprised when I woke up that first morning ( " wow, I didn't wake up

last night! " ). I say, to heck with the negative energy! Things will

keep getting better, tho' I know it is so hard to wait and deal with

the pain and inconveniences. I am thinking only good things for you!

Hugs, Marty

--- " redmarmie " <vclark@...> wrote: ...I negotiated for a new brace

since I have lost 20 lbs since surgery and the brace does not fit

anymore. I negotiated a price of 2600 clams for the 5555 clam bone

stimulator... Oh and did I mention certain family members have

official written me off. Very nice. Oh, and I get absolutely no

sleep ... I just can not win.

[Guest guest]

Marty,

You would think it was just life but it appears nobody here is

listening. An ENT, surgeon, emergency room and PCP later, two

antibiotics later, I keep telling people my face hurts but I get no

where. I'll admit when my face first started tingling, I lost it.

You would have thought something absolutely horrid had happened to

me. I was crying and whinning all over the place. It was a very

scary thing and the final straw so to speak. I come from a family of

ten, I am the youngest. My oldest sister sent me an email that was

the worst and nastiest piece of correspondence I have ever recieved.

Basically, she told me off and wanted nothing to do with me. I was

livid. I had a choice. Either basically ignore it or allow it to

create a rift that would last the rest of our lives. I chose to

ignore it but it was extremely hard. Such is life!

...I negotiated for a new brace

> since I have lost 20 lbs since surgery and the brace does not fit

> anymore. I negotiated a price of 2600 clams for the 5555 clam bone

> stimulator... Oh and did I mention certain family members have

> official written me off. Very nice. Oh, and I get absolutely no

> sleep ... I just can not win.

>

[Guest guest]

, your sister needs a good 11 hours of spine surgery to straighten out her attitude. Sorry, but she just doesn't sound like an empathetic person. I'd never wish it on them, but 3 of my 4 sisters have scoliosis, plus my parents and one brother (the other brother injured his back!), so there's no lack of empathy here. Do wish we weren't such a darned disabled lot, though. I'm the only one who has visited my parents since Christmas, and it's a 2.25 hr. drive for me. I might not make next Christmas, and maybe not Dad's 80th birthday in Nov.

Oh, sheesh, I went off talking about myself again! I'd be freaked if my face started tingling too! That is so scary, and I'm betting the docs are baffled as to how your surgery could have caused it.

Sharon

[ ] Re: fighting the good fight

Marty,You would think it was just life but it appears nobody here is listening. An ENT, surgeon, emergency room and PCP later, two antibiotics later, I keep telling people my face hurts but I get no where. I'll admit when my face first started tingling, I lost it. You would have thought something absolutely horrid had happened to me. I was crying and whinning all over the place. It was a very scary thing and the final straw so to speak. I come from a family of ten, I am the youngest. My oldest sister sent me an email that was the worst and nastiest piece of correspondence I have ever recieved. Basically, she told me off and wanted nothing to do with me. I was livid. I had a choice. Either basically ignore it or allow it to create a rift that would last the rest of our lives. I chose to ignore it but it was extremely hard. Such is life! ...I negotiated for a new brace > since I have lost 20 lbs since surgery and the brace does not fit > anymore. I negotiated a price of 2600 clams for the 5555 clam bone > stimulator... Oh and did I mention certain family members have > official written me off. Very nice. Oh, and I get absolutely no > sleep ... I just can not win.>

[Guest guest]

Yup it totally sucks. I get it. I bet I'll be just as difficult to be around, assuming I get up the nerve to get on the gurney!

Sharon

[ ] Re: fighting the good fight

Sharon,Thats the problem, Glazer won't buy into it being the surgery. I am not sure what it is but it is freaking me out. My significant other is now at his rope end with me too. It has to be me Sharon or the whole lot has no clue. I have a few nephew and neices with scholi but minor. There is definetly no empathy, the only one who would understand is my aunt and she passed away.

[Guest guest]

,

I am sorry it is such a struggle right now...and I am sorry that

your family is not being very supportive. I know it seems crazy, but

sometimes when a major health problem affects a family member it

seems like it shakes up the whole family dynamics and network...and

maybe your sister just doesn't know how to deal with all that is

changing. You are needy right now, and you are entitiled to be!

Geez. I do think you were right not to respond to a nasty

diatribe...words in anger have a way of boomeranging!

I wondered about your tingling feeling...Did Dr Glazer suggest or

think there was any chance that your new stance/posture is causing

your neck to stack up differently..possible compressing a nerve?

Just a thought. If I ever can work it out, I am much interested in

trying a few sessions with someone well trained in

Technique. I have felt since surgery that there was still more I

could do to feel more natural in this posture and I suspect this is

the only professional that works in that arena exclusivly (except

our surgeons...of course!).

Here is a link to a woman up in Newton that I bookmarked last year

for the day when I can go off to Boston for the day..I never spoke

with her....but she seems like someone I might click with. Who

knows....you have talked to all the docs....maybe a little

alternative treatment might be in order. I understand a training

session is very gentle and doesn't sound like anything that DrGlazer

wouldn't approve...but of course you could check! Here is the link:

http://www.connactivity.com/%7Ejill/index.htm

I hope you find some relief! Cam

[Guest guest]

, in line with what Cam says, I keep thinking "chiropractor". You might need to wait for Dr. Glazer's ok, but I have 2 relatives who have had amazing relief of eye problems from chiro work on their necks! Hard to believe, but when you've heard 2 first-hand accounts it's hard to dismiss.

Sharon

[ ] Re: fighting the good fight

,I am sorry it is such a struggle right now...and I am sorry that your family is not being very supportive. I know it seems crazy, but sometimes when a major health problem affects a family member it seems like it shakes up the whole family dynamics and network...and maybe your sister just doesn't know how to deal with all that is changing. You are needy right now, and you are entitiled to be! Geez. I do think you were right not to respond to a nasty diatribe...words in anger have a way of boomeranging!I wondered about your tingling feeling...Did Dr Glazer suggest or think there was any chance that your new stance/posture is causing your neck to stack up differently..possible compressing a nerve? Just a thought. If I ever can work it out, I am much interested in trying a few sessions with someone well trained in Technique. I have felt since surgery that there was still more I could do to feel more natural in this posture and I suspect this is the only professional that works in that arena exclusivly (except our surgeons...of course!).Here is a link to a woman up in Newton that I bookmarked last year for the day when I can go off to Boston for the day..I never spoke with her....but she seems like someone I might click with. Who knows....you have talked to all the docs....maybe a little alternative treatment might be in order. I understand a training session is very gentle and doesn't sound like anything that DrGlazer wouldn't approve...but of course you could check! Here is the link:http://www.connactivity.com/%7Ejill/index.htmI hope you find some relief! Cam

[Guest guest]

Valery,

I've also had numbness/tingling on my left side, including my arms,

fingers, and face. When my face gets numb, I can feel it inside of

my eyeball and on my tongue. When my tongue gets numb, I loose my

sense of taste. The arm and face started after I was rear ended

almost 3 years ago. My doctors think the arm/fingers is totally

independant of the face, but I know they are connected. When I

carry a heavy (relative term) bag over my left shoulder, both go

numb for days within the first minute or two. I also have bad

muscle spasm in the upper back and trapezius muscles. I haven't had

a revision so my situation is somewhat different, but I can share

the information I've accumulated through inumerable doctors visits

since last fall.

First, they did an MRI to rule out thinngs like MS and tumors. Then

a neurologist did an EMG? of my arm and the neurologist said it was

a brachial plexus injury (the nerves that spread out over the

shoulder)with cranial plexus involvement (meaning he not sure

exactly what but its around the very upper cervical area - C1/C2).

I was prescribed arm motions/stretches called nerve glades which

helped the arm and finger numbness to an extent.

I've also seen the type type of oral MD that treats TMJ, and he made

clear that the face numbness comes from completely different nerves

than the arms. He said that there are two types of cranial nerves

that impact the face, one is both sensory and motor and the other

only sensory.He thinks that thought muscle tension from the trap

muscles could make the jaw muscles spasm around the face nerves,

making them tingle. It also seems that facial numbness comes from

injury or trama to the upper cervical vertibrea. He suggested a

mouth guard bacause it workds in 70 to 90% of his cases, as well

as " mouth PT " , and booted me back to the nuerologist. The PT

doesn't seem to be doing much for my mouth but is helping my neck.

The mouth guard is actually helping a the face and tongue numbness a

little. The mouth guards are custom made, are very expensive and

insurance doesn't cover, but you can get drug store versions

relatively inexpensively. My neurologist won't do facial studies to

really figure out whats wrong because they are painful and don't

change any of his recommendations but suggested a course of muscle

relaxers to break the spasms and hopefully the nerve firings if

caused by the spasms. A nerve medicine (?neurontin?) seems to be

the next course of action but I'm hoping to avoid this.

I went back to my psysiatrist, who doesn't understand how the arm

and face symptoms are connected, but he gave me gave me Valium to

try on the neurologists' recommendation and said they are the best

muscle relaxers for back spasms. I'm trying that now and it also

helps alittle. I still have a week or more to go.

I hope this long winded story cuts short some of the searching for

answers that you may wind up doing. Trust your instincts about whats

causing your problems.

Jane

>

> Hi all, Here goes. I saw an ENT specialist, I trust, about the

> tingling in my face. He thought there was a minus sinusitus but

did

> not think it was causing the issue. I personally still think it is

a

> side effect of the surgery but anyway a nureologist is next. Let's

> see. I negotiated for a new brace since I have lost 20 lbs since

> surgery and the brace does not fit anymore. I negotiated a price

of

> 2600 clams for the 5555 clam bone stimulator. I am having an on

going

> arguement with work who wants me to start the paperwork for Social

> Security even though i have not made it to long term disability

yet. I

> am having another arguement with my hunnie who insists local

driving

> means no major roads so I am confined to a three block area so I

don't

> touch any major roads, aaaaaarrgggg. Oh and did I mention certain

> family members have official written me off. Very nice. Oh, and I

get

> absolutely no sleep unless I take the ambien then I wake up in 4

> hours. So much for healing while you rest. I asked the dr office

to

> change the sleeping meds to something else and they perscribed

Valium.

> I just can not win. Enough whining for you? I bore myself.

>

[Guest guest]

, sorry about all your going through. I was just wondering if the numbness could be caused by any meds you're taking.

Judy

[ ] fighting the good fight

Hi all, Here goes. I saw an ENT specialist, I trust, about the tingling in my face. He thought there was a minus sinusitus but did not think it was causing the issue. I personally still think it is a side effect of the surgery but anyway a nureologist is next. Let's see. I negotiated for a new brace since I have lost 20 lbs since surgery and the brace does not fit anymore. I negotiated a price of 2600 clams for the 5555 clam bone stimulator. I am having an on going arguement with work who wants me to start the paperwork for Social Security even though i have not made it to long term disability yet. I am having another arguement with my hunnie who insists local driving means no major roads so I am confined to a three block area so I don't touch any major roads, aaaaaarrgggg. Oh and did I mention certain family members have official written me off. Very nice. Oh, and I get absolutely no sleep unless I take the ambien then I wake up in 4 hours. So much for healing while you rest. I asked the dr office to change the sleeping meds to something else and they perscribed Valium. I just can not win. Enough whining for you? I bore myself.

[Guest guest]

Sharon,

You will so you can be straighter :

>

> Yup it totally sucks. I get it. I bet I'll be just as difficult

to be around, assuming I get up the nerve to get on the gurney!

>

> Sharon

>

> [ ] Re: fighting the good fight

>

>

> Sharon,

> Thats the problem, Glazer won't buy into it being the surgery. I

am

> not sure what it is but it is freaking me out. My significant

other is

> now at his rope end with me too. It has to be me Sharon or the

whole

> lot has no clue. I have a few nephew and neices with scholi but

minor.

> There is definetly no empathy, the only one who would understand

is my

> aunt and she passed away.

>

[Guest guest]

Cam,

thanks for the info. Glazer is the one who ordered the MRI of head

and neck when I was in emergency. It did not show any nerve, clot or

bone issues in the neck area where I guess that would be. I am

making an appt with a neurologist on Monday. I wanted to ask but was

afraid to, do you know of any of the symptoms members have stated of

infected hardware? I have heard it mentioned but was afraid to ask.

>

> ,

>

> I am sorry it is such a struggle right now...and I am sorry that

> your family is not being very supportive. I know it seems crazy,

but

> sometimes when a major health problem affects a family member it

> seems like it shakes up the whole family dynamics and

network...and

> maybe your sister just doesn't know how to deal with all that is

> changing. You are needy right now, and you are entitiled to be!

> Geez. I do think you were right not to respond to a nasty

> diatribe...words in anger have a way of boomeranging!

>

> I wondered about your tingling feeling...Did Dr Glazer suggest or

> think there was any chance that your new stance/posture is causing

> your neck to stack up differently..possible compressing a nerve?

> Just a thought. If I ever can work it out, I am much interested in

> trying a few sessions with someone well trained in

> Technique. I have felt since surgery that there was still more I

> could do to feel more natural in this posture and I suspect this

is

> the only professional that works in that arena exclusivly (except

> our surgeons...of course!).

>

> Here is a link to a woman up in Newton that I bookmarked last year

> for the day when I can go off to Boston for the day..I never spoke

> with her....but she seems like someone I might click with. Who

> knows....you have talked to all the docs....maybe a little

> alternative treatment might be in order. I understand a training

> session is very gentle and doesn't sound like anything that

DrGlazer

> wouldn't approve...but of course you could check! Here is the link:

>

> http://www.connactivity.com/%7Ejill/index.htm

>

> I hope you find some relief! Cam

>

[Guest guest]

Jane,

Amazing to find someone else who is suffering this. I hope you find

relief. Thanks for the information.

> >

> > Hi all, Here goes. I saw an ENT specialist, I trust, about the

> > tingling in my face. He thought there was a minus sinusitus but

> did

> > not think it was causing the issue. I personally still think it

is

> a

> > side effect of the surgery but anyway a nureologist is next.

Let's

> > see. I negotiated for a new brace since I have lost 20 lbs since

> > surgery and the brace does not fit anymore. I negotiated a price

> of

> > 2600 clams for the 5555 clam bone stimulator. I am having an on

> going

> > arguement with work who wants me to start the paperwork for

Social

> > Security even though i have not made it to long term disability

> yet. I

> > am having another arguement with my hunnie who insists local

> driving

> > means no major roads so I am confined to a three block area so I

> don't

> > touch any major roads, aaaaaarrgggg. Oh and did I mention

certain

> > family members have official written me off. Very nice. Oh, and

I

> get

> > absolutely no sleep unless I take the ambien then I wake up in 4

> > hours. So much for healing while you rest. I asked the dr office

> to

> > change the sleeping meds to something else and they perscribed

> Valium.

> > I just can not win. Enough whining for you? I bore myself.

> >

>

[Guest guest]

Yeah, probably, but I'll still be a corkscrew.

I wouldn't care so much about the forward tilt if it weren't so darn painful and fatiguing.

But then, I'm preaching to the choir.

Sharon

[ ] Re: fighting the good fight> > > Sharon,> Thats the problem, Glazer won't buy into it being the surgery. I am > not sure what it is but it is freaking me out. My significant other is > now at his rope end with me too. It has to be me Sharon or the whole > lot has no clue. I have a few nephew and neices with scholi but minor. > There is definetly no empathy, the only one who would understand is my > aunt and she passed away. >

[Guest guest]

All and Judy,

It is hard to tell but partly I think the issue is the brace is too

big. There is a new one on the way. As of Friday, I am on no

medication, but I could be experiencing withdrawal. I know I have a

yeast infection from the Leviquin I was on and nothing OTC is

working. Another trip to the PCP oh, joy!. I think I have the DT's

from withdrawal.

>

> , sorry about all your going through. I was just wondering

if the numbness could be caused by any meds you're taking.

> Judy

>

> [ ] fighting the good fight

>

>

> Hi all, Here goes. I saw an ENT specialist, I trust, about the

> tingling in my face. He thought there was a minus sinusitus but

did

> not think it was causing the issue. I personally still think it

is a

> side effect of the surgery but anyway a nureologist is next.

Let's

> see. I negotiated for a new brace since I have lost 20 lbs since

> surgery and the brace does not fit anymore. I negotiated a price

of

> 2600 clams for the 5555 clam bone stimulator. I am having an on

going

> arguement with work who wants me to start the paperwork for

Social

> Security even though i have not made it to long term disability

yet. I

> am having another arguement with my hunnie who insists local

driving

> means no major roads so I am confined to a three block area so I

don't

> touch any major roads, aaaaaarrgggg. Oh and did I mention

certain

> family members have official written me off. Very nice. Oh, and

I get

> absolutely no sleep unless I take the ambien then I wake up in 4

> hours. So much for healing while you rest. I asked the dr office

to

> change the sleeping meds to something else and they perscribed

Valium.

> I just can not win. Enough whining for you? I bore myself.

>

[Guest guest]

,

This is going to sound harsh, but it's been my experience, so here goes. If they don't understand by now, they never, ever will. The best thing you can do for yourself is to learn to accept that, which is very, very hard. This scoli business can be very lonely.

Bonnie

[ ] Re: fighting the good fight

Sharon,Thats the problem, Glazer won't buy into it being the surgery. I am not sure what it is but it is freaking me out. My significant other is now at his rope end with me too. It has to be me Sharon or the whole lot has no clue. I have a few nephew and neices with scholi but minor. There is definetly no empathy, the only one who would understand is my aunt and she passed away.

[Guest guest]

Here, Here.

>

> ,

>

> This is going to sound harsh, but it's been my experience, so here

goes. If they don't understand by now, they never, ever will. The

best thing you can do for yourself is to learn to accept that, which

is very, very hard. This scoli business can be very lonely.

>

> Bonnie

>

>

>

>

>

> [ ] Re: fighting the good fight

>

>

> Sharon,

> Thats the problem, Glazer won't buy into it being the surgery. I

am

> not sure what it is but it is freaking me out. My significant

other is

> now at his rope end with me too. It has to be me Sharon or the

whole

> lot has no clue. I have a few nephew and neices with scholi but

minor.

> There is definetly no empathy, the only one who would understand

is my

> aunt and she passed away.

>