Brain Tumour Survivor
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pneumatocoele can anyone help
http://www.btsurvivor.com/bb/viewtopic.php?f=2&t=969
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Author:  phebe [ Sat Jun 28, 2008 11:20 pm ]
Post subject:  pneumatocoele can anyone help

Hi I am new to this so, I hope someone can help me. Oct 03 I was diagnosed with a large pneumatocoele of the petrous apex and the temporal bone with deafness and a large number of other symptoms.
On the 20th of feb 08 Ihad a crainiotomy and the surgeon found a bone deep in the 5th crainial nerve and the pneumatocoele was packed with fat.

I cant be the only person with this is there someone that can help me.

Author:  ksplat [ Sun Jun 29, 2008 10:02 am ]
Post subject:  pneumatocoele can anyone help

Hello Phebe

Welcome to the forum! I'm terribly sorry about your current health problems.

Although, I am not familiar with the diagnosis you mentioned I wanted to acknowledge your post & let you know we are a great community, offering support, comfort, advice & personal experiences.

I do hope another member will be able to help you with your questions?

Thinking of you.

Cheers, Angie.

ps-I moved your post to General Treatment discussions as I felt you would receive more input here.

Author:  kenobewan [ Sun Jun 29, 2008 10:27 pm ]
Post subject: 

Intracranial pneumatocoele like pulminary pneumatocoele is most commonly associated with impact injuries. A bone is frequently the cause of a build up of fluid and intracranial pressure, resulting in brain tumor like symptoms depending on the location. Surgery to remove the bone and some of the associated build up is the primary intervention.

This much I am sure that you know. I assume that you have received treatment for your other symptoms. Unlike others in this forum I doubt that this includes radio or chemo therapy, unless they found cancerous cells.

Sounds like you want to share your story with others who have had something similar. Do you have questions regarding treatment?

Author:  phebe [ Mon Jun 30, 2008 2:16 pm ]
Post subject:  pneumatocele

Hi kenobewan,
Thankyou for your reply,the pneunatocoele was not form inpact or injuries.
May 2003 a full brain scan was done and there was no pneumatocoele in Oct 2003 presented a large pneumatocoele with no fluid. durring surgery the petros apex and temporal bone were abcent in a number of areas.
The pneumatocole was said to be spontanious without fluid.I would love to meet someone with the same thing and i would realy like my hearing back.
I have a numb face on my right side and i hope that will return.
Thankyou so much for your reply.
Phebe

Author:  kenobewan [ Mon Jun 30, 2008 10:12 pm ]
Post subject: 

Hopefully now that you have posted someone else will come forward. Have you had a second opinion about your diagnosis/ treatment?

Is hearing in both ears affected? I have an aquaintance who lost their hearing after a tumor removal this year, I'll find out whether he has had advice about this.

Movement in my face is getting better a year after my op. Some of it is time and the brain adjusting. The rest I believe is exercise and transference, working bilaterally where ever possible. Supplements that promote nerve function may assist in this process.

Author:  phebe [ Tue Jul 01, 2008 5:51 pm ]
Post subject:  pneumatocele

Hi kenobewan,
The pneumatocele was on the right side everything made a shift to the left that then made my hearing both sides but realy bad on the left and blocking both eustachian tubes.
Prior to Novermber 2008 I had seen 9 Ent doctors,2 Neuros, 1ENT/Neuro and I didnt stop looking for why I was in so much pain and why things were going so strainge. I am in good hands now but would like to know what to expect with recovery hearing face ect.
The surgeon said this is the first time he had done a pneumatocele I see him every 4 weeks.
However it is helpfull to know how other people recover and how.
Thanks heaps
Phebe

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