Author Topic: Cranial Pressure and swelling  (Read 7054 times)

goldlady

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Cranial Pressure and swelling
« on: March 17, 2010, 09:26:38 pm »
Hi I am new to this site and hope to see if anyone can help. I had a large AN removed many years ago and have the same type of side effects that some of you are experiencing.  I lost hearing on the right side, no balance on one side, facial paralysis,and an eye that does not blink.  I have dealt with that okay on a day to day basis.

My biggest problem is every time the weather starts to get bad, when the barometric pressure goes up or down. My face swells up and I cannot see out of one eye, also the back of my head swells like there is a tennis ball there full of fluid.  It hurts so bad I cannot do anything but lay down, it makes my balance way off too.  If any of you have any suggestions please let me know. Thanks. 
Live each day to its fullest!
Translabyrinthine Craniotomy June 2000
5cm  Right AN
Jackson Memorial Hospital-Miami, Florida
Dr.Hero's/Dr.Blakeney
Hearing Loss/Facial paralysis/Balance lost

Denise S

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Re: Cranial Pressure and swelling
« Reply #1 on: March 18, 2010, 01:39:10 pm »
Oh do I wish I had some answers.  I find this very interesting because I recently posted in a few places & even on my blog about the weather changes, BAROMETRIC pressure changes and how it may effec the way we feel.    Seems like lots of people notice symptoms and possibly related to allergies or sinuses.

Well, I am only 4 1/2 mo. post op and going through some of what feels like facial swelling.  Sometimes feels lke I got punched on the surgical side of my face/head.  Just recently the eye feeling like you mentioned too.     It is weird.   Then it is like my ear feels full and tinnitus tends to increase.    UGH!    My doctor lives farther away, and my local dr. seen nothing of concern.   It really stinks and I truly was hoping my situation was due to the fact I am not too far out post surgery.      The more I read on here it seems like many have stuff long after.      I do also have a few other issues like another benign brain tumor (that has been stable for years) and some neck & back issues.  So, for me I sometimes think maybe it has to due with that.

I really hope someone can chime in here and give some more thought or advice.    I actually got put on a steroid pack (via a conversation on the phone with the dr) but it didn't help at all.....actually made me feel puffy with fluid. 

Have you ever tried anything for it?  Like ice pack or meds?    Anything ever help you?       If I ever find out more, for sure I will share!
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Denise S

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Re: Cranial Pressure and swelling
« Reply #2 on: March 18, 2010, 02:21:16 pm »
http://anausa.org/forum/index.php?topic=9715.0

http://anausa.org/forum/index.php?topic=1985.0

http://anausa.org/forum/index.php?topic=12025.0

http://anausa.org/forum/index.php?topic=2689.0

Hey, I'm figuring this site out pretty good now.   I posted those topics above because they somewhat may be of help or similarity anyways.      Noticed some are even from like 2006.

Denise  ;)
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Mei Mei

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Re: Cranial Pressure and swelling
« Reply #3 on: March 19, 2010, 08:20:59 am »
I, too, am having the pressure in the top of my head back quadrant and it won't go away no matter what.   It increases when I go to stand up and start to walk and it has nothing to do with my blood pressure because I've checked that and it's normal.  The doctor says its normal to have this pressure after surgery and not to worry but it doesn't feel normal this long.   He didn't seem concerned at the 6 week visit about the pressure feeling.   Have any of you asked your docs how long to expect this pressure feeling post op?

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: Cranial Pressure and swelling
« Reply #4 on: March 19, 2010, 08:28:36 am »
Good point about the barometric pressure.  I'll have to check our barometer daily from now on and see how that relates to my head that is so sensitive right now, post surg.   Everything is so sensitive post surgery, isn't it?   It's a different world now.

Denise, I didn't know that you had another tumor.  What are you doing about that?  Is it something to monitor too?

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Denise S

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Re: Cranial Pressure and swelling
« Reply #5 on: March 19, 2010, 06:42:35 pm »
Good point about the barometric pressure.  I'll have to check our barometer daily from now on and see how that relates to my head that is so sensitive right now, post surg.   Everything is so sensitive post surgery, isn't it?   It's a different world now.

Denise, I didn't know that you had another tumor.  What are you doing about that?  Is it something to monitor too?

Mei Mei

Mei Mei......I'd say FOR SURE everything is so sensitive post surgery...ugh!!    I also sent you an e-mail.
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

ombrerose4

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Re: Cranial Pressure and swelling
« Reply #6 on: March 19, 2010, 08:58:34 pm »
I have been suffering from chronic headaches for the last few months. I had a blood patch done 3/8 and was feeling better until the northeaster last week. During the 2-3 days of bad weather- rain and heavy winds, my headaches became so bad. Then the weather changed, nice and sunny, clear skies, and my headaches are improved again. I guess I am going to have to move to a sunny, dry climate :)
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

goldlady

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Re: Cranial Pressure and swelling
« Reply #7 on: March 20, 2010, 04:42:02 pm »
Denise thank you for your post.
I had a Right 5 cm AN removed in June 2000. I had total hearing loss, facial paralysis and no balance on the right side. My eye does not blink so drops are my daily friend. Living in South Florida the weather always changes especially with the rainy season and hurricanes. People at work use my face and head as a Doppler radar instead of looking at the weather channel. They can see that I can tell when a storm is coming. the weird thing it does not happen all the time it rains only when the barometric pressure goes up or down quickly.  The doctors are stumped, I just say the ENT this week to read my MRI because I had a scare and they thought a tumor on the left side now.  The news was good and no tumor only fluid build up on the right side.

I see that there are several people who are experiencing the same issues. i have dealt with for 10 years but it has gotten worse this year.  The ENT told me to see my Neuro DR. because it looks like the 5,6,7th nerve are misfiring and swelling because of residue from the surgery. :)
Live each day to its fullest!
Translabyrinthine Craniotomy June 2000
5cm  Right AN
Jackson Memorial Hospital-Miami, Florida
Dr.Hero's/Dr.Blakeney
Hearing Loss/Facial paralysis/Balance lost

Denise S

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Re: Cranial Pressure and swelling
« Reply #8 on: March 21, 2010, 09:48:48 am »
goldlady:

Ugh....10 years.  I don't like the sounds of that (since I'm only 4 1/2 mo. post op)   But, if we can link some of the causes to the issues would be of great help.  Next would be the best treatment for relief.

So what is the fluid?????
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Patti

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Re: Cranial Pressure and swelling
« Reply #9 on: March 21, 2010, 07:35:06 pm »
i go every 4 weeks to an osteopath who practices cranial sacral therapy.  it is a miracle.  no more headaches.  its premise is to keep the cerebral spinal fluid freely moving.  there isa website that lets you find one closest to you-just google it.  insurance covers it because he is a doctor and not a masseuse (sp?).  patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

epc1970

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Re: Cranial Pressure and swelling
« Reply #10 on: March 22, 2010, 12:36:04 pm »
I'm with you Patti on the osteopath and the cranial sacral therapy! It is my life saver!!! In fact, I'm going on Friday for my monthly tune up.....can't wait!

Erin

Mei Mei

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Re: Cranial Pressure and swelling
« Reply #11 on: April 14, 2010, 05:39:21 pm »
Can you tell me the website to get the osteopath.   I've been having headaches ever since surgery and it is debilitating.
Sincerely,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: Cranial Pressure and swelling
« Reply #12 on: April 15, 2010, 08:08:18 am »
I found the website this morning and am trying to make appts.   Thanks for the suggestions.

Am looking forward to this!
Sincerely,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh