Questions

[Guest guest]

In a message dated 3/9/00 4:24:55 PM Eastern Standard Time, Shellwipp@...

writes:

> Hi,

> Pt. with shoulder pain. She is tender *su-per-spi-ni-tus* and AC joint.

>

> Pt. with ringing in her ears. Tympanogram and *aut-van* gram are

currently

> pending.

> Remote possibility of dislocation of *os-i-cal*.

>

> Thanks Much-

>

1st one is supraspinatus - its a muscle....and initiates abduction of the arm.

2nd is probabaly audiogram....a hearing test as the tympanogram is also a

test of the ear/hearing.

3rd is ossicle.....A small bone; specifically, one of the bones of the

tympanic cavity or middle ear.

Carol A

[Guest guest]

supraspinatus muscle (abducts and raises arm)

audiogram (hearing test)

I'm not sure of the the last one but under ossicle in Taber's there are

auditory ossicles which are the bones of the ears.

On Thu, 9 Mar 2000 16:17:51 EST Shellwipp@... writes:

> Hi,

> Pt. with shoulder pain. She is tender *su-per-spi-ni-tus* and AC

> joint.

>

> Pt. with ringing in her ears. Tympanogram and *aut-van* gram are

> currently

> pending.

> Remote possibility of dislocation of *os-i-cal*.

>

> Thanks Much-

>

>

>

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[Guest guest]

Hi All,

I'm still new to this ACM/Syrinx thing so here are a few questions for everyone.

About 3 days ago I started getting headaches that are in the back of my head all

the way down my neck. No OTC meds seem to help it. Should I be worried? Could

it be related to my ACM/Syrinx? I should clarify I was born with Spina Bifida

so I had the Chiari at birth but I never thought much about it until 2 months

ago when my weird symptoms started. My head/neck ache seem so be a little better

when I lay down. I'm still dealing with doctors in my home town who are still

saying it's a nerve thing because of the prickly/numb/sense of burning in my

upper chest they say it has nothing to do with my Chiari or Syrinx. I'm on a low

dose of an anti seizure med that also helps with nerve pain. We're playing

around with the dosage to hopefully find something that works for me. But my mom

and I are prepared to go to Minneapolis to see a doctor down there that I've

seen before and he's an expert on SB to see what he says. Also for those of you

that have had a decompression, has it helped at all or do you still have

problems but maybe not as bad as before or has it not helped at all? Thanks for

your help.

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[Guest guest]

Re your questions,

1. .Usually the amount of hair shaved is minimal I had short hair and just

wore a scarf as a head band until my hair grew back, which really didn't take

very long to do so.

2. The head brace is put on after you are under the anesthetic. You do not

feel it. The surgeon is working on the back of your head there for needs to

have your head TOTALLY immobilized. If there are any sutures/clips, no scar is

left noticeable, as your hair will cover it. That area is NOT shaved as a rule.

3. My surgery was approx. 4 hours. I also had Duraplasty, and partial C1

Laminectomy. Everyone is individual re surgery times.

4. Yes I think most of have that popping sensation , it is do do with the flow

of CSF. Not sure where you are coming from with the Aneurysm feeling. I do not

know what that feels like. I never thought I was going to die, but I di think I

would go slowly crazy listening to that popping and my heart beating in my

ears!!

5. as above. It all has to do with the CSF flow/pressure.

6. CSF flow again. I am not familiar with the term " white noises " , but I always

felt I had wind and sea screaming through my ears, when the buzzing /ringing

sensation wasn't overtaking it!!

7. There is a GOD, I have now forgotten when I felt the worst, but I do still

remember I use to wake up with a headache weather I slept well or not the night

before!

8. Yes, I often had yawning attacks. This is often due to a lack of oxygen,

considering ACM has an effect on our breathing one way or another, I always

suspected this was the reason once I became more familiar with the multi S & S of

ACM. I have to admit, post surgery I do not experience this so much. As I

didn't for a long time sinus problems either.......strange!!

9. Here you are shifting the equilibrium of the fluid in within your

skull/brain, which with ACM is out of sink (normal) to start with. Try and

avoid moving your head suddenly and with fast side to side movements.

Things like infection and CSF leaks are always a small risk. Paralyses and

death, don't even go there. These are really unfounded

fears................HOWEVER to be honest, I am sure most of us have thought

about these fears pre surgery. My advice is, if you are religious, see your

Priest, pastor etc... pre surgery and ask for a blessing, Confession etc...Even

if you are not religious, ask to see the Hospital Chaplin pre surgery just to

help calm yourself pre surgery...........it can't hurt.

I have been one of the lucky ones and have never looked back since surgery,

however mind you it did take me awhile to recover, and the worst part was

photophobia for the first week+ and then about 2-3 weeks post op, the most

dreadful headache I had ever experienced. Off to the ER at 3 a.m. and

eventually IMI analgesia and I was back on my feet again the next morning after

a good nights sleep.

I DID NOT rush my recovery and made sure when I was discharged from hospital

post op, I had a copy of the meds I was on and made sure my local doctor

continued these same medications (analgesia) as I was having in hospital at the

time of my discharge. I had the Pharmacy make them up for me as I was a " little

dull " to say the least, so I thought if my meds were organized for me by the

pharmacist, I could just take them at the specific times instead of trying to

remember if I had already taken them or whatever!! and gradually worked out when

I didn't need them and noticed the times

blah blah blah, to then begin to wean myself of the analgesia.

In short, be gentle and good to yourself post op. Don't rush it, but again

don't linger for months! A soft pillow is an absolute must post surgery.

Biddy.

ACM 1

2006: PFD, Duraplasty, Partial Laminectomy, sub Occipital Cranietomy.

From: Rhiannon

Sent: Saturday, January 02, 2010 6:00 PM

To:

Subject: Questions

Hi everyone,

I have made a list of questions to ask my NS next time I see him (1/27), but I

am wondering if someone here can help give me any sort of answer/advice

pertaining to these questions. So, if you'd take the time to read these

questions and help me out in any way you can, I'd greatly appreciate it. I have

changed these questions a little to fit the group here as opposed to the NS I'll

be asking.

Questions:

1. For anyone that's had a decompression: Will there be any hair to cover the

incision from the decompression?

2. Again for decompressed people: I was told there's some head brace thing they

use to keep you immobile and I am wondering if the screws left any sort of

scars.

3. What was the average length of time anyone was in surgery? I'd like an idea

of how long it will take to have a decompression, especially because there is

always the possibility that a couple vertebrae may have to be removed also.

4. Does anyone have a " popping " feeling in their head? I get this feeling that

something pops in my head sometimes when I'm trying to go to sleep. I always

think I'm going to go to sleep and never wake up, like I'm going to aneurysm in

my sleep.

5. Does anyone get a weird sound in their ear(s)? Sometimes it sounds like

someone chewing gum (like a cow would) in my ear. At other times it's like a

plastic bag in my ear. I wish I could come up with other ways to describe it,

but I can't.

6. Another one about the ears is, does it ever sound like an air

conditioner/furnace/dryer in your ears? Instead of having a ringing or buzzing

all the time, I have a background white noise thing going on. Wondering if it's

just me.

7. Does anyone suffer worse pain/pressure when they're vertical as opposed to

horizontal? I do happen to get horrible pain & pressure when I'm lying down, but

it seems to increase when I stand up (I don't mean just when I get up, but even

after I've been up for a while...like being upright at all). I know there's an

intolerance for standing (i.e. orthostatic), but this isn't like that.

8. For anyone with younger kids, do you ever have horrible yawning attacks when

reading to your kids? Every time I read to my kids I am constantly yawning. It's

not because I'm bored with the story or tired. I don't yawn all day. But the

minute I start reading a story to them, I have to yawn.

9. When I shake my head at all, like when trying to get my bangs out of my face,

I feel like someone is banging my brain around. Why is this? Is it just because

there's such little space available? I thought that most of the crowding was in

the brain stem area. So, why does my head hurt everywhere else when I do things

like that? Also, I get the same sort of feeling when my mother is vacuuming

while I'm on the couch (as she vacuums under it she takes no care to not bang

the vacuum into the couch). In either situation, or anything else that makes my

head feel this way when moving, I end up nauseated & feel lightheaded. If this

has anything to do with ICP, does it mean that there is high or low ICP? I

thought that my LP pressure pretty much gives the idea of ICP, and if that's

within a normal range, wouldn't my ICP be also? For reference when pondering the

answer to this question, my LP pressure was either 100mm or 110mm. But I do have

next to no posterior CSF flow and very little anterior CSF flow. Hope this helps

in getting an answer.

Ok, I think that's it for questions right now. At least for this group. If

anyone can tell me other things I should be asking the NS, I'd appreciate that

too. I do have questions about how many surgeries this dr has done, especially

decompressions. And I have questions about the risk of things like infection/csf

leak/paralysis/death. And I also have questions about other possible tests he

may want to do before surgery, like what tests will be repeated before surgery

(i.e. MRIs, especially a CINE). But, anything else is desperately and greatly

appreciated. Right now I could use all the help I can get as I am trying to

settle on a time to have my decompression.

Thanks to anyone who takes it upon themselves to bother with me and my

questions. I'm normally pretty resourceful and know enough to get me farther

than anyone in my family when it comes to medical things. But, I'm stumped here.

I'd like to have a good idea about some of these things before I go to see the

NS again. It's a long wait til the end of the month, and I'm going insane here.

As a matter of fact, I just came up with a question during that last sentence

but had to finish that sentence and have since forgotten the new question. I had

having a bad memory.

Thank you all.

Niccy

[Guest guest]

Bridget or anyone.  I'm having decompression surgergy this month at Barrow

Neurological Institute in Arizona.  Did anyone had experience with this

hospital or can you tell what hospital did you used.  The assistence kind of

scared me because he says that have a rarity on a rarity.  He never seen this

before.

Tella

-- Sent from my Palm Prē

Bridget O'Keeffee wrote:

 

Re your questions,

1. .Usually the amount of hair shaved is minimal I had short hair and just

wore a scarf as a head band until my hair grew back, which really didn't take

very long to do so.