Re: Re: Neck Surgery Question- TO ALL

[Guest guest]

Thank you for all the encouraging comments and information. It sure

makes me feel better about going to see the surgeon knowing what to ask

and look for. Of course, I am still nervous about it but not nearly as

much. I can relate to Janet with having 2 elementry school age

children..I have 4 of them. The 2 older ones have been so helpful to ma

and with the smaller ones.

I found out today that my Dr. set me up with an orthopedic surgeon

instead of a neurosurgeon. From all the advise I've received in here I

don't think I'm too comfortable with that. I'm going to go to the first

appointment and see what all he says about it. Apparently there is no

sense or urgency as the appointment is 3 weeks away, which is a relief.

I'll be sure to let you all know how that first visit goes.

Thanks again to EVERYONE for being here :-)

By the way, I had found this on the internet a few months ago and have

it on my website. Thought I'd share it with you in case you haven't seen

it before. I think it's quite nice.

Rick

www.whosyomama.com

[ ] Re: Neck Surgery Question

I have not been on the group in quite a while - but tonight I saw

your message and wanted you to know that I just had sugery 2 months

ago. I am not sure exactly what you are having done - I had cervical

spinal stenosis between C4 and C5. My rheumy referred me to a

neurologist in January for the headaches I was having (I am 31 and

have fibro and Sjogrens). The headaches ahd been pretty much nonstop

for about 3 motnhs - and before that they were sporadic with 2-3 a

day. The MRI showed what the stenosis and I had a frontal diskectomy

in march. The disk was removed (through the front of the neck) and

replaced with a piece of donor bone. A titanium plate was put in so

the vertebrae and bone could fuse together. When they got in there

the disk was actually much worse than the MRI had indicated.

I woke up from surgery and the first thing I said was that the

headaches were gone! I have since had a few tension headaches from

the neck and shoulder muscles when I do too much - but the awful

ones like before are gone - along with the muscle pain, spasms and

EXTREME fatigue. Carrying a cup was heavy and walking down the hall

at school was quite a challenge. The balance problems also

disappeared. It has taken my husband two months to get used to the

fact that I don't need him to rub my legs every night.

I stayed in thehospital only 24 hours!! I wore a soft collar for 3

weeks and I was to be up to walking a mile a day at one month. At

that point I was able to start lifting half gallons of milk - and he

gave me two months to get back to normal activity levels. I have

achieved that quite nicely - I still watch what I lift - but the

only meds I still take are the antidepressant so I can sleep (which

I was on before) and I take a muscle relaxer 1-2 times a day. I do

notice that I have lost some of the range of motion in my neck. But

nothing that keeps me from doing things like driving. Some days it

is more stiff than others and I just turn with my upper body

instead.

I do pray that you will have the same success I had and that your

surgery provides relief. Even on my " bad " days I can still say that

I am 75% better than I was before the surgery. Take care - most

people were surprised that I was so anxious to have this done - but

with two elementary age children I was excited about the possibility

of returning to some sense of normalcy. These are done all the time

with great success. I would advise that you feel comfortable with

your surgeon ( I went to a neurosurgeon) and make sure your

questions are answered. Mine was very honest at the first visit

about the risks and his success with this surgery (which was

excellent). There was very little I had to ask him and he was very

reassuring without being overconfident in his abilities.

Take care and let us know how it goes!

Janet

[Guest guest]

Dear Rick:

You don't know me but I wrote you a letter the other day in reply to an email

you sent to the group. I didn't get a reply so I am writing it again, as

much as I can remember what I wanted to tell you.

You talked about your taking of prednisone in high doses and having wheezing,

and other symptoms. I wanted to tell you that I have been on prednisone (a

low dose) for about 20 years and I can't get off of it. I went to a Dr. in

Philadelphia a pulmonary specialist to see what he thought. Because I can't

walk

too far without getting out of breath very severely and I have to stop and

sit down after 20 feet or so when walking. This Doctor that I saw said that I

have " Atelectasis, " (after many tests I had done for him). He said that this

" Atelectasis " is a condition where the lungs don't expand enough because the

ribs have squeezed the lungs. This has all been caused by the prednisone.

The thing is I can't get off of it. I have tried when I get down to zero I

can't walk and I am in severe pain and can't walk at all.

Also, I have heard that Viagara is supposed to help people with pulmonary

fibrosis. This is similar to it and maybe it will help us. I don't know for

sure. However, they are doing testing on that, my Doctor told me.

Well, I don't know anyone who has the same problem we have. Now there are

two of us.

I don't know how many more there are.

I hope to hear from you, and how you are doing.

Sincerely, Colletti

Anjillah@...

[Guest guest]

In a message dated 04/06/2004 22:15:27 Central Standard Time,

ANJILLAH@... writes:

> " Atelectasis "

Hi Anjillah

Atelectasis is actually very common. Most people get it post-op from not

breathing deep enough/not expanding their lungs all the way due to pain. It's

temporary in that situation. That's why they give you those goofy looking

incentive spirometer lung exercisers to use after surgery, to keep your lungs

expanded. Otherwise you can end up with pneumonia. I'm not sure what you do

about

chronic atelectasis, though. To picture atelectasis, picture part of your

lung " collapsed " . That's basically what it is. Cary

[Guest guest]

Although our pulmonary problems are similar, I don't think they are the

same. My lung problem came first and Prednisone was the remedy, it

sounds like yours was the opposite. Although Prednisone was the remedy

for mine, they have yet to find a safe alternative. Meanwhile the

Prednisone is causing a host of problems in itself which are having to

be monitored and medicated. My Pulmonologist has switched diagnosis 6

times in 9 months and always goes back to adult onset asthma. I'm no

doctor, but I completely disagree with the DX of asthma. Asthma consist

of episodes of attacks, some lasting longer then others and varying in

severity and triggers. The problems I am having is constant, not

episodic and without specific triggers. I had gone to an Asthma/Allergy

Specialist and he also said it was definitely not asthma and tested me

for allergies (you know the 50 or 60 pricks they put in your back). The

test came out completely negative of ANY allergies at all so they did

the test again, but on my arm the second time. Same results. I am not

allergic to anything, except Aspirin. I told them I already knew that.

I'm not even allergic to Poison Oak or Poison Ivy. I think the

pulmonologist is just trying to prevent me from having a " label " so for

simplicity is calling it asthma. Like I said, it came on all at once in

the first week of September and has been constant every since. I had

gotten a case of Pleurisy in January that took 2 months to clear up but

even now, 5 months later, my left lung (where I had Pleurisy) feels kind

of solid at the bottom portion of the lung and if I'm leaned back and

breathing, I feel a very heavy rattle, almost like a whoopi cushion

where the air escapes. I've been telling my Pulmonologist about it every

appointment but he has yet to order another MRI since the one he did

back in December came back no fibrosis or nodules. I am going to make

him order an MRI when I see him next week.

I was asking the group about the lung problems because everywhere I read

it says 40-50% of RA patients have lung disorders and that percentage is

much higher among those who have untreated RA for a long period of time

like I have. I am concerned that it is Rheumatoid related and will get

worse if they keep treating it as simple Asthma (not that Asthma is

anything simple) but by comparison, according to everything I have read

on Interstitial Lung Disease, Rheumatoid Lung Disease and some of the

other RA related lung diseases.

Because of the Prednisone so far, I am now having blood pressure

problems that require 2 different medications and loss bone density

(Osteopenia) and Osteoporosis, weight gain, shakiness, nervousness,

sleeplessness, unbelievable swelling (feet feel like they are going to

literally explode with every step) and my calves/ankles get as large as

my thighs, Moon face with lumps on the sides of my face just under the

temples. Where I did have a 40 " chest and 29 " waist 9 months ago, I know

have a 34 " waist. I'm bruising all over, mostly on my arms and hands,

and it feels/looks like my skin is like paper thin.

I don't know how much longer my body can take the prednisone.

I was talking to one of my VA Dr's the other day and he told me that if

my Primary VA Dr will fill out a Pulmonary and RA Consult, they will get

me into Vanderbilt Hospital to figure out what all is ACTUALLY going on.

I think I'm going to have to do that since my current pulmonologist has

9 months to do something and has made no progress at all from day one to

now, still the same treatment but with more problems and no resolution

of any kind on the original problem.

Rick

Rick

www.whosyomama.com

Re: [ ] Re: Neck Surgery Question- TO ALL

Dear Rick:

You don't know me but I wrote you a letter the other day in reply to an

email you sent to the group. I didn't get a reply so I am writing it

again, as much as I can remember what I wanted to tell you.

You talked about your taking of prednisone in high doses and having

wheezing, and other symptoms. I wanted to tell you that I have been on

prednisone (a low dose) for about 20 years and I can't get off of it. I

went to a Dr. in Philadelphia a pulmonary specialist to see what he

thought. Because I can't walk too far without getting out of breath

very severely and I have to stop and sit down after 20 feet or so when

walking. This Doctor that I saw said that I have " Atelectasis, " (after

many tests I had done for him). He said that this " Atelectasis " is a

condition where the lungs don't expand enough because the ribs have

squeezed the lungs. This has all been caused by the prednisone.

The thing is I can't get off of it. I have tried when I get down to

zero I can't walk and I am in severe pain and can't walk at all.

Also, I have heard that Viagara is supposed to help people with

pulmonary fibrosis. This is similar to it and maybe it will help us. I

don't know for sure. However, they are doing testing on that, my Doctor

told me.

Well, I don't know anyone who has the same problem we have. Now there

are two of us.

I don't know how many more there are.

I hope to hear from you, and how you are doing.

Sincerely, Colletti

Anjillah@...

[Guest guest]

Hi Rick

Sounds like you need a new pulmonologist. I feel for you, you sound

miserable. Good luck......Cary