Your surgery

[Guest guest]

> I'm not sure of your name but you posted as denali. Would

you mind

> elaborating on your surgery and the circumstances that led to

it? Many of us

> are considering it and lots of information helps. For instance ,

what were

> the challenges you had to face? When did you have it? Was it

anterior and

> posterior? If you wouldn't mind, how old were you at the time of

surgery?

> And most important , how are you doing now? I hope well.

Thanks so much for

> responding. Barbara

This is a good time to introduce myself . My name is Pam, I live

in Anchorage, Alaska and I am 46 years old. I was diagnosed

with scoliosis (idiopathic type) at age 14. My father was a retired

military man so I was flown (with my mother) to Texas, where I

was evaluated at Wilford Hall Medical Ctr. in San . From

what I can remember, my curve was about 59 degrees so the

doctors there decided that I needed a Harrington rod with fusion.

My fusion was large, basically all or most of the thoracic

vertebrae and extending to about L-1. I'm sure that as you all can

recall, this was not a fun time. I was discharged with a Risser

cast and flown home to be on bedrest for 3 months. The next 3

months I was able to ambulate with a body cast and the last 6

months I spent in a plastic " corset " . My posture was much

improved . Following being " discharged " from the corset I

became involved in X-country running and skiing at my high

school. At that time I never really had any pain from my back.

2 years post-op it was discovered on routine X-ray that the rod

was broken (I was getting a follow-up in Texas) so it was

removed. This surgery was really a minor inconvenience that I

recovered from quickly.

The next several years age 18-31 were pretty uneventful for my

back. I got married, had two children without any real difficulty

and worked full-time. But a year or two after my second child was

born, my low back started hurting intermittently. I saw 2 local

orthopedists that couldn't identify the problem and a spine

specialist. This would all be aproximately 1988-1990. No one

identified my pains as being related to my previous surgery. I

continued to work and deal with my pain that was slowly

intensifying with medications (advil, motrin, ketoprofen,

accupuncture) finally I ended up in a pain clinic. Other things

began to happen, one summer my neck started aching like

crazy. (1992) I started to feel like I was tilting forward and to the

left. I would get tingly feelings in my back and my left arm. My left

foot was starting to feel funny. I went to Denver Col. to see a

spine specialist for my neck. No real answers there. In 1999 I

went to the Mayo Clinic in Minnesota and saw a spine specialist

who basically said that my condition was not bad enough to

require treatment. I spent that summer on the Internet, trying to

figure out what was wrong with me and I finally found the

scoliosis digest site. After reading many posts and

Mina's site I felt that flatback was my problem. I went to see Dr.

Bradford in June 2001 and he quickly verified this. I was

scheduled for a posterior fusion Dec. 4, 2001. When I had my

pre-op appt. on Dec. 3, he felt that I needed a staged anterior

and posterior surgery so that I would have a second surgery on

Dec. 11. Apparently the curve in my lumbar spine required quite

a bit of work. Well, this didn't surprise me but it did shake me up

some (does that make sense). The first surgery lasted around

12-13 hours. Post-operatively it was painful but I had my pain IV

push thing and it seemed okay. I think the first surgery mainly

was fusing the anterior lumbar spine and preparing the posterior

spine for fusion, hardware placement and the osteotomies to fix

my lumbar kyphosis. Things were harder after the 2nd surgery.

I felt more disoriented, there was more pain. Also, it was

discovered that my left toe would not move so I had a myelogram

and CAT scan. I had some compression at 2-3 nerve roots so

on 12/18 I was returned to surgery for decompression of the

nerve roots. The surgeon (Dr. Sigurd Berven) found a piece of

bone and some clots that were removed. Afterwards, I could

move my toe but had weakness and numbness in my left leg,

hip and foot. I was told that this would improve over time and it

has. See next message from Denali for more.

[Guest guest]

> > I'm not sure of your name but you posted as denali. Would

> you mind

> > elaborating on your surgery and the circumstances that led to

> it? Many of us

> > are considering it and lots of information helps. For

instance ,

> what were

> > the challenges you had to face? When did you have it? Was

it

> anterior and

> > posterior? If you wouldn't mind, how old were you at the time

of

> surgery?

> > And most important , how are you doing now? I hope well.

> Thanks so much for

> > responding. Barbara

>

> This is a good time to introduce myself . My name is Pam, I

live

> in Anchorage, Alaska and I am 46 years old. I was diagnosed

> with scoliosis (idiopathic type) at age 14. My father was a

retired

> military man so I was flown (with my mother) to Texas, where I

> was evaluated at Wilford Hall Medical Ctr. in San .

From

> what I can remember, my curve was about 59 degrees so the

> doctors there decided that I needed a Harrington rod with

fusion.

> My fusion was large, basically all or most of the thoracic

> vertebrae and extending to about L-1. I'm sure that as you all

can

> recall, this was not a fun time. I was discharged with a Risser

> cast and flown home to be on bedrest for 3 months. The next 3

> months I was able to ambulate with a body cast and the last 6

> months I spent in a plastic " corset " . My posture was much

> improved . Following being " discharged " from the corset I

> became involved in X-country running and skiing at my high

> school. At that time I never really had any pain from my back.

> 2 years post-op it was discovered on routine X-ray that the rod

> was broken (I was getting a follow-up in Texas) so it was

> removed. This surgery was really a minor inconvenience that I

> recovered from quickly.

>

> The next several years age 18-31 were pretty uneventful for my

> back. I got married, had two children without any real difficulty

> and worked full-time. But a year or two after my second child

was

> born, my low back started hurting intermittently. I saw 2 local

> orthopedists that couldn't identify the problem and a spine

> specialist. This would all be aproximately 1988-1990. No one

> identified my pains as being related to my previous surgery. I

> continued to work and deal with my pain that was slowly

> intensifying with medications (advil, motrin, ketoprofen,

> accupuncture) finally I ended up in a pain clinic. Other things

> began to happen, one summer my neck started aching like

> crazy. (1992) I started to feel like I was tilting forward and to the

> left. I would get tingly feelings in my back and my left arm. My

left

> foot was starting to feel funny. I went to Denver Col. to see a

> spine specialist for my neck. No real answers there. In 1999 I

> went to the Mayo Clinic in Minnesota and saw a spine

specialist

> who basically said that my condition was not bad enough to

> require treatment. I spent that summer on the Internet, trying to

> figure out what was wrong with me and I finally found the

> scoliosis digest site. After reading many posts and

> Mina's site I felt that flatback was my problem. I went to see Dr.

> Bradford in June 2001 and he quickly verified this. I was

> scheduled for a posterior fusion Dec. 4, 2001. When I had my

> pre-op appt. on Dec. 3, he felt that I needed a staged anterior

> and posterior surgery so that I would have a second surgery on

> Dec. 11. Apparently the curve in my lumbar spine required

quite

> a bit of work. Well, this didn't surprise me but it did shake me

up

> some (does that make sense). The first surgery lasted around

> 12-13 hours. Post-operatively it was painful but I had my pain

IV

> push thing and it seemed okay. I think the first surgery mainly

> was fusing the anterior lumbar spine and preparing the

posterior

> spine for fusion, hardware placement and the osteotomies to

fix

> my lumbar kyphosis. Things were harder after the 2nd

surgery.

> I felt more disoriented, there was more pain. Also, it was

> discovered that my left toe would not move so I had a

myelogram

> and CAT scan. I had some compression at 2-3 nerve roots so

> on 12/18 I was returned to surgery for decompression of the

> nerve roots. The surgeon (Dr. Sigurd Berven) found a piece of

> bone and some clots that were removed. Afterwards, I could

> move my toe but had weakness and numbness in my left leg,

> hip and foot. I was told that this would improve over time and it

> has. See next message from Denali for more.

I flew back to Anchorage on Dec. 23. Over the next four months I

became stronger. I have a follow-up appt. with Dr. Bradford in

San Fran. on May 29. I have been continuing to wear the plastic

TLSO (brace) until I see him again. I still get tired and rest for an

hour or so 1 or 2 times a day. I take neurontin for nerve irritation

and pain medication too but have decreased the pain

medication by 2/3 or more since before the surgery. About 1

month post-op I went into a depressing time dealing with

everything and started taking an anti-depressant which REALLY

HELPS! Also, the second surgery took about 12-13 hours as

well. So, as many others have said, the revision surgery is a very

big deal. But I felt that I had no other choice, by the time I had my

surgery, I tired very easily ...for example... after being up 15 min

or so, I was in a lot of pain and was very despondent. Things

were getting worse and worse. I am glad I had the surgery & I

feel that I now have the chance to have fun with my family & be a

fun grandma some day. I don't plan to go back to my old job

because I don't think I would able to have the stamina to perform

it anymore.

For 4-5 years before this surgery I felt that I needed help with my

back. I am very grateful to have found Dr. Bradford & Dr. Berven.

They have dedicated many hours of their time to helping people

with spinal problems. Please feel free to ask me any questions

about my experiences. Sincerely, Pam

[Guest guest]

Pam,

Thank you so much for your detailed and informative letters. You

have really been through a long ordeal.

I'm catching up very slowly with all my Internet lists because post-

op pain/nerve symptoms and various other factors in my life. So, my

apologies to you and to anyone else who may have been posting here

with nary a response from your " moderator. "

Your story caught my attention because of some interesting

coincidences. My dad, like yours, was retired military. Although I

live in Chicago now, I graduated from high school in Alaska -- in my

case, Fairbanks. (Admittedly that was many moons ago, even before

the pipeline.)

And my own two-part surgery (in Boston) took place last December 11

and December 18.

Yes, the second stage was definitely harder than the first!

I hope your May 20 follow-up appointment went well.

Best,

Eliana

> > > I'm not sure of your name but you posted as denali. Would

> > you mind

> > > elaborating on your surgery and the circumstances that led to

> > it? Many of us

> > > are considering it and lots of information helps. For

> instance ,

> > what were

> > > the challenges you had to face? When did you have it? Was

> it

> > anterior and

> > > posterior? If you wouldn't mind, how old were you at the time

> of

> > surgery?

> > > And most important , how are you doing now? I hope well.

> > Thanks so much for

> > > responding. Barbara

>

>

> >

> > This is a good time to introduce myself . My name is Pam, I

> live

> > in Anchorage, Alaska and I am 46 years old. I was diagnosed

> > with scoliosis (idiopathic type) at age 14. My father was a

> retired

> > military man so I was flown (with my mother) to Texas, where I

> > was evaluated at Wilford Hall Medical Ctr. in San .

> From

> > what I can remember, my curve was about 59 degrees so the

> > doctors there decided that I needed a Harrington rod with

> fusion.

> > My fusion was large, basically all or most of the thoracic

> > vertebrae and extending to about L-1. I'm sure that as you all

> can

> > recall, this was not a fun time. I was discharged with a Risser

> > cast and flown home to be on bedrest for 3 months. The next 3

> > months I was able to ambulate with a body cast and the last 6

> > months I spent in a plastic " corset " . My posture was much

> > improved . Following being " discharged " from the corset I

> > became involved in X-country running and skiing at my high

> > school. At that time I never really had any pain from my back.

> > 2 years post-op it was discovered on routine X-ray that the rod

> > was broken (I was getting a follow-up in Texas) so it was

> > removed. This surgery was really a minor inconvenience that I

> > recovered from quickly.

> >

> > The next several years age 18-31 were pretty uneventful for my

> > back. I got married, had two children without any real

difficulty

> > and worked full-time. But a year or two after my second child

> was

> > born, my low back started hurting intermittently. I saw 2 local

> > orthopedists that couldn't identify the problem and a spine

> > specialist. This would all be aproximately 1988-1990. No one

> > identified my pains as being related to my previous surgery. I

> > continued to work and deal with my pain that was slowly

> > intensifying with medications (advil, motrin, ketoprofen,

> > accupuncture) finally I ended up in a pain clinic. Other things

> > began to happen, one summer my neck started aching like

> > crazy. (1992) I started to feel like I was tilting forward and

to the

> > left. I would get tingly feelings in my back and my left arm. My

> left

> > foot was starting to feel funny. I went to Denver Col. to see a

> > spine specialist for my neck. No real answers there. In 1999 I

> > went to the Mayo Clinic in Minnesota and saw a spine

> specialist

> > who basically said that my condition was not bad enough to

> > require treatment. I spent that summer on the Internet, trying

to

> > figure out what was wrong with me and I finally found the

> > scoliosis digest site. After reading many posts and

> > Mina's site I felt that flatback was my problem. I went to see

Dr.

> > Bradford in June 2001 and he quickly verified this. I was

> > scheduled for a posterior fusion Dec. 4, 2001. When I had my

> > pre-op appt. on Dec. 3, he felt that I needed a staged anterior

> > and posterior surgery so that I would have a second surgery on

> > Dec. 11. Apparently the curve in my lumbar spine required

> quite

> > a bit of work. Well, this didn't surprise me but it did shake me

> up

> > some (does that make sense). The first surgery lasted around

> > 12-13 hours. Post-operatively it was painful but I had my pain

> IV

> > push thing and it seemed okay. I think the first surgery mainly

> > was fusing the anterior lumbar spine and preparing the

> posterior

> > spine for fusion, hardware placement and the osteotomies to

> fix

> > my lumbar kyphosis. Things were harder after the 2nd

> surgery.

> > I felt more disoriented, there was more pain. Also, it was

> > discovered that my left toe would not move so I had a

> myelogram

> > and CAT scan. I had some compression at 2-3 nerve roots so

> > on 12/18 I was returned to surgery for decompression of the

> > nerve roots. The surgeon (Dr. Sigurd Berven) found a piece of

> > bone and some clots that were removed. Afterwards, I could

> > move my toe but had weakness and numbness in my left leg,

> > hip and foot. I was told that this would improve over time and it

> > has. See next message from Denali for more.

>

> I flew back to Anchorage on Dec. 23. Over the next four months I

> became stronger. I have a follow-up appt. with Dr. Bradford in

> San Fran. on May 29. I have been continuing to wear the plastic

> TLSO (brace) until I see him again. I still get tired and rest for

an

> hour or so 1 or 2 times a day. I take neurontin for nerve

irritation

> and pain medication too but have decreased the pain

> medication by 2/3 or more since before the surgery. About 1

> month post-op I went into a depressing time dealing with

> everything and started taking an anti-depressant which REALLY

> HELPS! Also, the second surgery took about 12-13 hours as

> well. So, as many others have said, the revision surgery is a very

> big deal. But I felt that I had no other choice, by the time I had

my

> surgery, I tired very easily ...for example... after being up 15

min

> or so, I was in a lot of pain and was very despondent. Things

> were getting worse and worse. I am glad I had the surgery & I

> feel that I now have the chance to have fun with my family & be a

> fun grandma some day. I don't plan to go back to my old job

> because I don't think I would able to have the stamina to perform

> it anymore.

> For 4-5 years before this surgery I felt that I needed help with

my

> back. I am very grateful to have found Dr. Bradford & Dr. Berven.

> They have dedicated many hours of their time to helping people

> with spinal problems. Please feel free to ask me any questions

> about my experiences. Sincerely, Pam

[Guest guest]

Hi ,

Thank you for sharing your experience - i am very fearful and therefor have been

putting off on scheduling my surgery.

Would you mind telling me if you are in the Boston - New Hampshire area? if so

who your surgeon was and did they say that your surgery was a canal wall up or

canal wall down? and was yours called an attic cholesteatoms?

Thank you again

gail

>

> Hi

>

>

>

> I just had my surgery about 3 weeks ago. Just had my first post-op visit

> and everything is well.

>

>

>

> The surgery lasted about 3-4 hours. My surgeon was able to remove all the

> c-toma and fix the drum (I had a hole as well). The surgeon cut behind my

> ear lobe to do his work so I'll be left with no visible scarring. The

> cavity was then filled with antibacterial ointment which has just today

> started to breakdown and discharge from my ear. This ointment has

> completely muffled my hearing in that ear this whole time. The doctor

> suctioned quite a bit of it out today and I was glad to realize my hearing

> is back! I have had no pain in that area. The only discomfort has been

> around the ear canal which feels a bit awkward; I assume it's from the

> swelling and the antibacterial ointment. I still can't sleep on that side

> comfortably. I've had to keep cotton in my ear this whole time; changing

> it out every day (I was told I can stop doing this now). And I have to keep

> water out of my ear for at least 3 more weeks. During my pre-op visits,

> the surgeon told me there was a possibility of a follow up visit in approx 6

> months to make sure everything was cleaned out and the c-toma hadn't

> returned. But after the operation and today's visit, he seems very sure

> that that won't be necessary although there's always still an outside chance

> that it could return at some point.

>

>

>

> I have a desk job. My surgery was on a Wednesday. I could have easily

> returned to work the following Monday but took two extra days off instead.

> :-) Having had surgeries in the past that have taken WEEKS to feel somewhat

> normal, I'm surprised at how different this one has been.

>

>

>

>

>

> Love wholeheartedly, be surprised, give thanks and praise--then you will

> discover the fullness of your life. -Brother Steindl-Rast

>

> _____

>

> From: cholesteatoma [mailto:cholesteatoma ]

> On Behalf Of hollywood529

> Sent: Monday, March 30, 2009 7:13 PM

> cholesteatoma

> Subject: Hello!

>

>

>

> Well I am new here! I came across this group looking up information on

> Cholesteatomas for my husband. I can't seem to find much information, or not

> all the information I want anyway! I was just looking for people to share

> their stories with me, especially about the surgery and after it. I guess I

> will share my husbands story. He is 27 years old and has pretty much had

> problems with his ears all his life. When he was a child he always got ear

> infections and had tubes put in 3 times and they always fell out on their

> own. The last time the tube in his right ear did not fall out so they had to

> go in and remove it. When they removed they somehow put a whole in his

> eardrum I believe and from their I guess he just never got it fixed! So as

> long as I've known him his ear always hurt him and been VERY sensitive. He

> couldnt hear very well out of it, and it would drain constantly a mixture of

> pus and wax I assume and it smelled horrible. Sometimes it would have blood

> in it. So for the longest time he did not have insurance which is why it

> never got taken care of. Finally he got insurance and I made an appt. for

> him right away. On the first appt. the dr. tried to clean it out with some

> sort of suction thing, but it hurt my husband too bad and he had to have him

> stop. So the dr. gave him a prescription for antibiotic eardrops and had him

> take those for a week. When he went back the dr. said all was looking good

> and the infection was clearing up. As he looked closed he told us that he

> saw something. He went on to tell us he knew he had a cholesteatoma. We had

> never heard of it, so he told us about it and gave us some info on it. They

> then did a hearing test on him. They then scheduled a ct scan for him, which

> he goes to on thursday. So i guess we wont know anymore until then. I'm very

> nervous for him becuase he has had this problem for so long and it had not

> been treated. The doctor said it can cause brain problems and things like

> that. I am wondering about the srgery and how long it takes and what will

> happen afterwards! Any responses will be apprecited!

>