Update

[Guest guest]

Hi Tina. I had the decompression surgery first and lived with having hydrocephalus for two years after it. My nsg hoped, and so did I, that by making more room the ventricles and fluid would go down but it didn't work. My symptoms were major headaches, severe pains behind the eyes, dizziness, feeling sick a lot and vomiting, and extremely tired. The headaches seemed to be in the top and front of head, a lot of pressure all over, and I would actually grab my head in pain sometimes when I tried to get up.

Going a bit off subject, I don't notice that much of a difference between having hydro. and now shunt overdrainage. The pain is less severe but I have a constant low pressure headache and boy do I get wicked headaches going from sitting to standing. The one and only good thing is that by laying down now, I can feel better.

Tracey

update

Hi everyone,

I went to my NSG yesterday. I told him about the headaches I've been having

(through each temple and up to the top of my head and forehead) and everything

else that has been going wrong. I've been falling over alot again from

dizziness, Ive gotten so weak since the last surgery, and my body is jerking

and shaking almost every time I lay down. (Basically I've been feeling pretty

lousy) He wants to see if I have hydrocepalus. I'm going in for a CT scan

next week.

For those of you that have hydrocephalus, are these common symptoms? Is a

shunt the only way to treat it? I'm really scared about all this. I would

appreciate any answers. Please don't be offended if I don't respond right

away. I've been so worn out lately and these headaches have been keeping me

off the computer for long periods of time. I'm doing my best to keep up with

the group.

Thanks in advance!!

Tina

[Guest guest]

Tina-

When i developed my hydrocephalus, except for the dizziness, those were my

exact symptoms. Also, have you been vomiting at all? I would vomit a few

times when the symtoms really got bad. Eventually, I went to sleep one night

and woke up in the hospital 3 days later with a shunt. It was a pretty scary

situation. I can tell you that the difference you will feel is amazing.

After I woke up, i felt totally better. The headaches gradually began to wear

off, and since about 6 months after that surgery, I have returned back to

normal. I havent had a headache in almost a month, and when i get one, Advil

works just fine. I would highly encourage you to get the shunt and don't be

worried about it, the difference you will feel is incredible. If you have any

questions, e-mail me.

jared in seattle

------------------------------------------------------------------------

[Guest guest]

Hi Farrow. I think that is ridiculous to have to lay there and wait 7 mths for a mri. Things are getting bad here. Glad to hear that you can get one in the states and will be getting it done soon. I've only ever had mris of the head and believe they show the brainstem and part of the neck (someone can correct me if wrong). On mine, they did find a syrnix somewhere there and my nsg has told me that if it gets bigger, will shunt it and attach it to my other shunt. On my last mri, in Aug., it had gotten smaller so don't have to worry about it for now.

Tracey

update

Hi everyone! I thought I would type out one letter to the group instead of a

bunch of personal messages. Today I saw my neurotologist and finally got him

to agree to send me to the States for an MRI. Instead of waiting till August

I get to go next Tuesday. Problem is that he's only doing the brainstem. I

went to see him today because I have pressure in my left ear and back of my

neck, pain in my neck and spine, extreme nausea, and headaches also shooting

pains down my left arm and leg. He said there was nothing wrong with my ear

and no infection. I asked him what was wrong and he said he didn't know but

wasn't concerned. I'm concerned! I asked him about a syrinx but he'd never

heard of it before and couldn't comment. I wish the MRI was of the spine as

well. I heard today that syrinxes are usually in the cervical or thoracic

(pardon my spelling) sections of the spine not the lumbar. Does anyone know

if this is true? I'm going to try and get a second referral for the spine

area and want to know which areas to focus on as they're all charged

separately. I don't want to run up a huge bill if I don't have to. Sorry

this is long. Hope you're all having a good day!

Take care,.

Farrow

[Guest guest]

Thanks very much for your prayers and support . It means a lot to me.

in Port Orange, FL

[Guest guest]

- Good to hear from you again. I am glad things are going well - I

continue to pray for your recovery. I always appreciate your comments on

issues here on the list. My parents just spent some time in Florida for the

first time and are now on their way home (RV) They say it was beautiful and

have alot of pictures to show - I look forward to seeing them 'cause I have

never been there either. Rebekah

[Guest guest]

In a message dated 99-05-03 17:06:19 EDT, you write:

<< - Good to hear from you again. I am glad things are going well - I

continue to pray for your recovery. I always appreciate your comments on

issues here on the list. My parents just spent some time in Florida for the

first time and are now on their way home (RV) They say it was beautiful and

have alot of pictures to show - I look forward to seeing them 'cause I have

never been there either. Rebekah >>

Thanks, Rebekah,

Yes, things are going pretty good. I am so happy that I have my BGs under

control

better and my appetite is great which pleases the oncologist, not me though -

I am going UP not DOWN! But then I understand that insulin and chemo does

that to you.

Yes, Florida is a very beautiful state - but then each area of this country

has it's own natural beauty - We have the palm trees, the gorgeous beaches,

lots of wildlife preserves and wildnerness trails - but we don't have

mountains. We have water-skiing and Disneyworld, but we don't have snow

skiing, winter sports, and hot chocolate in front of roaring fireplaces.

I wouldn't want to live anyplace else - especially now since I have such a

great team of doctors, but I sure would like the ability to visit those other

areas of the country.

Chemo keeps me here - I have permission to travel 3 hours away and that is it

-

But that's always the case - human nature I guess to want that which we can't

have and when we have it we don't appreciate it as much as we should while we

do have it.

Oh well! Back to genealogy. I have discovered that diabetes and kidney

cancer is in my bloodline - my Ggrandfather died of Bright's Disease which is

a disease of the kidneys and his sister and niece each had diabetes with his

sister dying of kidney (renal) cancer. I find all this so fascinating.

in Port Orange, FL

in Port Orange, FL

[Guest guest]

Don't despair, Mark...

Just got to get stronger and get yourself feeling better.

We are all pulling for you. Why are you working 12 hour shifts?? Was your doc o.k. with those hours? Rest is sooooo important. It is good to stay active...but good to get measured rest. (this comes from a gal up way past bedtime..

Tomorrow,

Joyce>> well i saw my company doctor today, im not not allowed to go on the> shop floor at the factory i work at and am to carry out my entire> shift in the office, sat at a pc or doing paperwork... these are 12> hour shifts... im going to go insane... oh wait, already have. someone> put me out my misery?! please?!>

[Guest guest]

i always have worked 12 hour shifts. there just a bit more boring now!

my doc has not said anything to me to suggest i shouldnt be working

long hours, and besides, this way i get 4 day weekends!

ah i need to be fixed

[Guest guest]

, I can't believe the lack of compassion, disregard for human need and down right disrespect of some of the medical "professionals" out there. You have the right to know what is going on in your body!! I'm so sorry DR. Dweeb didnt even give you the information you need to "fight the good fight". You deserve better. I'm glad you arent returning to him. Take care, LynnA>> good morning,> I finally heard back from Vanderbilt this morning.My dr finally sent them my records and they said I have had this mass in the rt lung since Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt to call back with an appointment to do biopsy, I told them did not want dr to do rather I come to them.I feel dr only watching to see how long to die without any treatment. jWill keep you updated> > ipf 7/05> > __________________________________________________>

[Guest guest]

Peggy, Don't worry, it's called reporting to AMA. I'm tired of this idiot Peggy wrote: , What a creep your Dr is not to have acted on your x-ray.. I think I would do something about him.I hope you get into Vanderbilt real soon. Let us know. we'll be praying.. Peggy 9/04 ipflinda arnoldPeggy 09/04 ipf good morning, I finally heard back from Vanderbilt this morning.My dr finally sent them my records and they said I have had this mass in the rt lung since Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt to call back with an appointment to do biopsy, I told them did not want dr to do rather I come to them.I feel dr only watching to see how long to die without any treatment. jWill

keep you updated ipf 7/05__________________________________________________

[Guest guest]

Phred, Do you IM on yahoo, if so send me your IM if not e-mail me a phone number and I will go into details of Vanderbilt for you. They are located in Nashville,TN. Maybe notto far for you to travel is need be. One of the best Pul Clinics in country,but takes time to get in. Only reason they try to get me early is the lung mass. ipf7/05phredta11bl@... wrote: ... could you send me info on Vanderbilt ... I MIGHT need it.Phred---- Original Message ----From: joycedalton29@...To: Breathe-Support Subject: RE: Re: UpdateDate: Fri, 02 Jun 2006 22:11:50 -0000>>,>>Go to Vanderbilt. It is one of the top lung hospitals in the>country. >This is waaaaay to serious

to leave to local docs. How far away are>you. My insurance is paying for my trip to St. Louis. Check it out!> I>know you are scared right now, and rightly so. Please remember that>we>all are pulling for you! You will be in my heart as you make this>decision.>>Hugs....and many prayers,>>Joyce PF 1997>>>>> good morning,>> I finally heard back from Vanderbilt this morning.My dr finally>sent>them my records and they said I have had this mass in the rt lung>since>Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt>to>call back with an appointment to do biopsy, I told them did not want>dr>to do rather I come to them.I feel dr only watching to see how long>to>die

without any treatment. jWill keep you updated>>>> ipf 7/05>>>> __________________________________________________>>

[Guest guest]

.... don't IM. ZTA-5 is . I DO have some time yet, my

dr. is still coming up with a detailed diagnosis. I also am getting

info on asbestos and have contacted some old shipmates ref the ship.

Phred

---- Original Message ----

From: lovepuppy49@...

To: Breathe-Support

Subject: RE: Re: Update

Date: Fri, 2 Jun 2006 21:15:13 -0700 (PDT)

>Phred,

> Do you IM on yahoo, if so send me your IM if not e-mail me a phone

>number and I will go into details of Vanderbilt for you. They are

>located in Nashville,TN. Maybe notto far for you to travel is need

>be. One of the best Pul Clinics in country,but takes time to get in.

>Only reason they try to get me early is the lung mass.

>

> ipf7/05

>

>phredta11bl@... wrote:

> ... could you send me info on Vanderbilt ... I MIGHT need it.

>

>Phred

>

>---- Original Message ----

>From: joycedalton29@...

>To: Breathe-Support

>Subject: RE: Re: Update

>Date: Fri, 02 Jun 2006 22:11:50 -0000

>

>>

>>,

>>

>>Go to Vanderbilt. It is one of the top lung hospitals in the

>>country.

>>This is waaaaay to serious to leave to local docs. How far away are

>>you. My insurance is paying for my trip to St. Louis. Check it

>out!

>> I

>>know you are scared right now, and rightly so. Please remember that

>>we

>>all are pulling for you! You will be in my heart as you make this

>>decision.

>>

>>Hugs....and many prayers,

>>

>>Joyce PF 1997

>>

>>>

>>> good morning,

>>> I finally heard back from Vanderbilt this morning.My dr finally

>>sent

>>them my records and they said I have had this mass in the rt lung

>>since

>>Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt

>>to

>>call back with an appointment to do biopsy, I told them did not want

>>dr

>>to do rather I come to them.I feel dr only watching to see how long

>>to

>>die without any treatment. jWill keep you updated

>>>

>>> ipf 7/05

>>>

>>> __________________________________________________

>>>

[Guest guest]

Hello,

I want to update you about the scheduled biopsy on my larynx. My pulmonary doctor put a stop to that. He does not want them to do general anesthesia until he tries medication. He thinks that the Pulmicort (steroid) nebulizer is causing fungal growth and that is what the ENT doc is seeing on my larynx. Sooooo I am taking the medicine and off the Pulmicort. I hope that this is the answer. Biopsy seemed like a radical move to me. I was so relieved when he called me. Keep me in your prayers......but pray for our Fred first!

Hugs,

Joyce PF 1997

[Guest guest]

Joyce, I am so glad you don't have to endure a biopsy. I think waiting for results is almost as bad as the biopsy. I think it's a wonderful thing that you have a good pulm. Dr.... hopefully you'll be singing a duet with Ginger before long.

God is so good. Yes, I will be praying for you, Fred and his family. I hope we hear from his wife soon too.

God Bless. Peggy

Joyce Peggy 09/04 ipf

Hello,

I want to update you about the scheduled biopsy on my larynx. My pulmonary doctor put a stop to that. He does not want them to do general anesthesia until he tries medication. He thinks that the Pulmicort (steroid) nebulizer is causing fungal growth and that is what the ENT doc is seeing on my larynx. Sooooo I am taking the medicine and off the Pulmicort. I hope that this is the answer. Biopsy seemed like a radical move to me. I was so relieved when he called me. Keep me in your prayers......but pray for our Fred first!

Hugs,

Joyce PF 1997

[Guest guest]

Hi Joyce, I've been going six directions at once. LOL!!!! I'm trying to catch up on the posts I 've missed the last couple of days. I saw yours and wanted to say I'm glad your PulDoc intervened. I know of two people who have had a larynx biopsy whose voices have never been the same since. PLEASE try anything else before you go that far.

Have they discussed the possibility of that happening with you? I pray that taking you off the steroids work.

Take care,

LynnA

>> > Hello,> > I want to update you about the scheduled biopsy on my larynx. My> pulmonary doctor put a stop to that. He does not want them to do> general anesthesia until he tries medication. He thinks that the> Pulmicort (steroid) nebulizer is causing fungal growth and that is what> the ENT doc is seeing on my larynx. Sooooo I am taking the medicine and> off the Pulmicort. I hope that this is the answer. Biopsy seemed like> a radical move to me. I was so relieved when he called me. Keep me in> your prayers......but pray for our Fred first!> > Hugs,> > Joyce PF 1997>

[Guest guest]

Lynn,

No, I didn't know that the biopsy can affect your voice. I never imagined that losing your voice could be so devastating. It is driving me nuts. Over three weeks now! I will not go back to this guy. I don't know why he thought it would be a good idea to give me general anesthesia in his clinic. It is dangerous enough for lung patients in a hospital. I had an ENT doc that I had seen for Parotid gland problems and surgery, but he is a drinker and comes to work late. I have sat for hours waiting for him. Oddly, he is a skilled doc and very kind. I am just praying that these meds work. Rita e-mailed me to say that she had lost her voice awhile back using Advair...the same thing as Pulmicort. She also had a long haul of it. Keep me in your thoughts and prayers.

So worried about Fred.

Hugs,

Joyce PF 1997> >> >> > Hello,> >> > I want to update you about the scheduled biopsy on my larynx. My> > pulmonary doctor put a stop to that. He does not want them to do> > general anesthesia until he tries medication. He thinks that the> > Pulmicort (steroid) nebulizer is causing fungal growth and that is> what> > the ENT doc is seeing on my larynx. Sooooo I am taking the medicine> and> > off the Pulmicort. I hope that this is the answer. Biopsy seemed like> > a radical move to me. I was so relieved when he called me. Keep me in> > your prayers......but pray for our Fred first!> >> > Hugs,> >> > Joyce PF 1997> >>

[Guest guest]

Joyce, I haven't used Advair for about 6 mo or so and forgot, I did loose my voice from it. It causes thrush and at one point I had it all the way down to my stomach.. pretty painful.

Please know I pray for you daily, You are a child of The King. Keep the Faith. God Bless You...

Peggy 09/04 ipf

Lynn,

No, I didn't know that the biopsy can affect your voice. I never imagined that losing your voice could be so devastating. It is driving me nuts. Over three weeks now! I will not go back to this guy. I don't know why he thought it would be a good idea to give me general anesthesia in his clinic. It is dangerous enough for lung patients in a hospital. I had an ENT doc that I had seen for Parotid gland problems and surgery, but he is a drinker and comes to work late. I have sat for hours waiting for him. Oddly, he is a skilled doc and very kind. I am just praying that these meds work. Rita e-mailed me to say that she had lost her voice awhile back using Advair...the same thing as Pulmicort. She also had a long haul of it. Keep me in your thoughts and prayers.

So worried about Fred.

Hugs,

Joyce PF 1997

> >

> >

> > Hello,

> >

> > I want to update you about the scheduled biopsy on my larynx. My

>

[Guest guest]

Hi Bob, Glad you are home and doing well. I hope you have someone close to help you out with bill paying etc. My husband is learning all those things now. I've forgotten your dogs name, Abu maybe.. anyhow I know he is a great comfort and companion for you. 100 pounds wow I'll bet he raised a few eye brows. You take care of you. God Bless... Peggy 09/04 ipf

Dear Leanne and the Group,

Well, I am back, but not too active yet on my

lists. I do scan most of them and am so glad that

you are doing better Fred...you were missed here,

especially by the gals.

It has been almost a month now and things are a

little more in order. I really dreaded being by

myself after my family and friends left and I was

alone in this house, so I drove back to Phoenix

with my daughter and spent two weeks there. Just

got back Wednesday; that was a circus, flying with

my 100 pound lab guide dog. They had to make the

seat next to me vacant so that he would have room.

I am learning to do what Joan did; like doing

checks and reading the mail, etc. I will have to

make up my own system of doing things. I might

recommend that if you have a partner, be sure that

you and your partner are totally cross trained; it

would make it much easier. Being legally blind and

not having experience in paper work is making it

more difficult. I will get it though; I am stubborn.

Thanks for all the prayers, cards and good wishes

here on the list; I really appreciated it so much.

Moral support really means a lot as we see here

every day.

Some of my friends donated to our Foundation in

Joan's name; this was very thoughtful.

Stay strong.

Love to All,

Bob in Utah

Caregiver for Joan