Petroclival Meningioma - Skull Based Tumor - Looking for some Guidance

• By scoobydoo123
• Reply 2944298
• March 28, 2012 at 9:01 am
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Sorry for your diagnosis. I as well have a skull base tumor. Pilocytic Astrosytoma which is a very slow growing tumor. Had surgery in 2008 and they took just enough to biopsy and left the rest because of the complications of the surgery and where the tumor is located. They are just doing the "wait and watch" approach right now. No growth since the surgery. As far as a place for you to contact - try Dr. Shahinian at the Skull Base Institute in California. I contacted him after my surgery and he agrees with my docs here about the wait and watch approach. He had alot of info for me and answered some questions that I had. He really seams to know his stuff and has done surgeries on hard to get to tumors. He was on The Doctors TV show over a year ago. All I did was mail all my scans, mri's, records, etc. to him and he set up a conference call with me. Good Luck and Blessings to you!

• By tgoldstein
• Reply 2947188
• March 29, 2012 at 8:59 am
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Hi. I have a skull base meningioma myself, in the cerebellopontine angle. I had Gamma Knife radiosurgery 3 yrs. ago, because, after several opinions and doing a lot of research, I was given the option of that or surgery, and the surgery looked too risky also. I went to Tufts Medical Center in Boston. My advice is to go to a center where they have something like Gamma Knife or Cyberknife, because I think they will have more of an open mind towards radiation therapy, and not be so biased towards surgery, so that you can really get all of the options. Size of the tumor makes a difference as to whether or not you can have Gamma Knife, I'm not sure about the other techniques. The website for the IRSA(Int. Radiosurgery Assoc.) can give you a listing of centers that have Gamma Knife, maybe Cyberknife, that may be nearer to you. The advantage of something like Gamma Knife is that there is less exposure than with regular radiation to the overall brain, and it usually takes just one treatment, rather than 6 wks. that regular radiation requires. Good luck, write again if you have any more questions, and keep us updated!

• By pressed4u
• Reply 2971890
• April 8, 2012 at 7:31 am
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Sorry for bad news - I had severe headaches for over 10 years and swallowing problems as well as trouble walking a straight path - saw many specialists in the end was sent to an epilepsy specialist who took one look at me and arrange and MRI Scan - had the scan and a day later as I was leaving the office this specilist rang me as said "you have an abnormality on your scan and are to be admitted at once" - went to hospital with wife and son and saw a brillinant surgeon who explained I had a righ petroclival meningioma that required immediate surgery -was too late for radio therapy - he said its now or never!

Was in for two nights and then went down for surgery the next morning - was a 13 hour op and sadly I developed pneumonia as a result of the ventilation during surgery - was 4 months in intensive care and a further 2 in High Dependancy Unitr and then had 2 months in rehab learning to walk as time in bed reduces muscle strength by huge amount

I doubt you need worry about pneumonia - without it I would have been home in about 10 days - very rare complication

Cranial nerves very exposed during surgery and I have gone deaf in one ear and lost use of an eye and one side of the face is paralysed (like Bells Palsy) but I AM ALIVE and thank the surgeon for his skill

I just wish you the very best outcome and remember a live dog is worth more than a dead lion !

• By gloria23
• Reply 2971940 · In reply to 2971890 by pressed4u
• April 8, 2012 at 8:09 am
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Thank you so much for your response and I am glad you survived and are improving.

Where did you have your surgery and would you recommend the Hospital / Surgeon.

We are in the process of trying to find the best surgeon for this type of tumor and your input would be greatly appreciated.

Thank you and Happy Easter

• By pressed4u
• Reply 2972277 · In reply to 2971890 by pressed4u
• April 8, 2012 at 11:12 am
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Thanks for the good wishes - I understand how worrying even terrifying is for you now

I am afraid that I am in UK so surgeon not readily available - he was in fact a Mr Javadpour operating within the National Health Service - he and his team were fantastic - especially at supporting my wife and family in the trying times post op

He was based at the UKs premier Nero Surgery Hospital - The Walton Centre in Liverpool

Actually he has moved to Ireland as his wifes family (shes a Doctor also) come from Ireland and he was brought up there - he is attached to the Irish Beaumont Hospital as a Consultant Neurosurgeon

I have complete faith in him, even with the cranial nerve problems and wonder could he at least tell you the things to ask to test out a neurosurgeons skills - the Hospital email address should pass on any messages - information@beaumont.ie

I am lucky to live in Liverpool near the only UK specialist hospital for diagnosis and treatment and rehabilitation for brain surgery - the website is here - http://www.thewaltoncentre.nhs.uk/

Sorry I have no US knowledge that could be of more help - one point is of course that the surgeon needs a superb team around him as such long surgery is undertaken in turns and such a team is essential if aftercare - again I was more than lucky as Mr Javadpour had a first class team of qualified and senior staff under him - he was also polite and listened to youi and explained everything -essential qualities but not shared by everyone

In some ways I was unlucky but the experience and how our children supported their mother was marvellous - I was in sole practise as a Lawyer and my son ha to deal with closing the office/tax/etc and he supported his mother so much - I am now retired and enjoying time with the children and grandchildren and was in effect given a second chance as my former life meany very long hours and little time for the family - some tragedies can turn out better than expected and I am sure you will have the love and support of all your family and friends as you face awesome obstacles - please take heart from this - I was in hospital for months and saw miracles from the operating theatres daily as skilled surgeons perfomed the seemingly impossible

I have had a lot of plastic surgery to improve how my face looks and most people dont even know I have cranial nerve palsies

Sorry again for lack of local knowledge

Roger Pearce

• By nad53
• Reply 3060990
• May 13, 2012 at 12:30 am
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I was discovered with petrocliVal meningioma 2 years ago and have been under observation.
Met many surgeons and one of them at M D Anderson recommended 2 surgeons for this type of tumors.
Dr Laligam Sekhar in Seattle and dr Al-Mefty at women's and brigham in Boston.
Best Wishes

• By shaynic
• Reply 3084908
• May 23, 2012 at 7:17 am
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Hi - Not sure if this is too late a reply. My sister recently had surgery for a giant petroclival meningioma. She went to Al-Mefty @ Brigham and Women's in Boston. Could not recommend him enough.

She did not end up with palsy although she does have double vision which hopefully will heal on it's own.

• By bjack11
• Reply 3089860
• May 25, 2012 at 12:09 am
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I'm just seeing this post, so hope this info isn't too late for you in helping with your decision. My tumor location is almost identical and I've gone to three neurosurgeons for opinions. I have been told by the one I chose that the tumor can be removed via the nose - something that he can do, but still isn't routinely done for skull-base tumors. He said he's done more than 500 surgeries this way, including almost 100 in the location where my tumor is. It's supposed to be safer and be an easier recovery. My doc is Dr. Daniel Prevedello at Ohio State University Medical Center in Columbus, Ohio. Has anyone out there used him? You can find him performing this surgery on the web. For now, he has suggested I wait - will have another MRI in June and make sure there's no growth. If not, I can wait and watch (and tolerate some symptoms - double vision off and on, some headaches). if it grows, we will talk surgery and/or radiation.

• By karen719
• Reply 3097071
• May 28, 2012 at 10:28 am
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I know there is a new procedure for skull based tumors. It is a Carbon Dioxide Laser. I believe Dr. Tessler of Neurological P.C. in New York published a press release in March 2011. You may want to do some research on it to see if it would meet your needs. Best of luck to you.

• By tassiedude
• Reply 3129535
• June 11, 2012 at 9:53 am
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Hi,My name is Anthony I live in tasmania australia and have had a tumor removed from that spot last year in november.I have neo endocrine cancer in the brain also had small cancer in right lung lobe removed right side 10 days after quad bypass.Noone seems to have same any information and I haven't come across anyone else with the same type of cancer in the brain.It should be in the petuitry system and not the brain.Can anyone help ?

• By tgoldstein
• Reply 3132352
• June 12, 2012 at 12:28 pm
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To tassiedude -- Hi! I don't want to say too much, because I may not really know what I'm talking about (LOL), since I have meningiomas so my situation is different, but what you are describing sounds like what I read about as carcinoid tumors-they are neuroendocrine tumors that pop up in different areas of the body, and secrete hormones. I don't think they are cancerous necessarily, but can become cancerous. Does this sound like what you were told by the doctors? If they did not really tell you, you might want to ask, or look up more information online about it and then ask them. Having an actual diagnosis gives you at least a starting point for doing your research and getting help. Good luck!

• By Porgene
• Reply 3143308
• June 17, 2012 at 9:28 am
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I also have a petroclival meningioma which was found out by accident, size of a lemon. Went to refill my blood pressure medication reordered as i had to b assessed before starting a new course, but when i got to my PCP she said i didnt have to see her because she had already phoned in the order for pick up. But because i was already there she asked me if i had any problems and just my well being.Thought i washaving tension headaches or may be my blood pressure was up, so i told her. She said a CTScan would not hurt and so it was done 2days after andon my way home she called and said i needed an MRI because she saw a mass that concerned her. I did the MRI and within a month i was on my way to Cleveland Clinic for gamma knife. I was in the gamma knife for 2hours of focus radition. It was the longest 2 hours for me and my husband. But we have gotten pass that . The risk for sugery great. Had gamma knife radiosurgery At Cleveland Clinic, Ohio 1 1/2 year ago. Very great place. Dr. Gene Barnett and Dr. Chow were my doctors. If its not too latte u could call them them at brain institute. I go for follow up every 6 months to do mri and to check onsize of tomor. It is shrinking but will take a while because it was a slow growing tumor. I must have had it for years. Sometimes i forget i have it until i get really good laugh and then my head feels like it wants to explode, or if i bend and get up very quickly, its best to stoop. But im fine no side effects- no hearing loss, memory loss nothing. I had a great Doctor and very supportive family. God has blessed me, so i dont sweat the little things. Just give thanks for every day. The number is 216- 445-8971. U wont regretgoing there. Didnt know how common this meningioma was until i got there. Luckily for me it is not malignant.Good luck and i hope i was able to help. I know its scary but you will get through this.

• By tgoldstein
• Reply 3148182
• June 19, 2012 at 11:25 am
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Porgene's story was good to hear! Cleveland Clinic is an excellent place. I think they even do e-mail second opinions. Look up their website. But anyway, choose a center that deals in both neurosurgery and radiosurgery (Gamma Knife), so that they are not biased towards only surgery. I think they will give you honest options. I went to Tufts Medical Center in Boston, as they are the only facility in Massachusetts that has Gamma Knife, and I wanted to really get input on all the possible options. From online research that I read, I felt as though the other institutions in my area would be biased towards surgery. Good luck--keep us updated!

• By Ming59
• Reply 3232977
• July 23, 2012 at 3:12 am
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Sorry to hear your condition.i have similar condition with you,up to now aim still having face paralyze,deaf 1 left ear,Diplopia,balance problem,I have my surgery may25 2011,still have residual tumor,my dr suggest for gamma knife,I don't believe what he suggest anymore,I have hard time with my face paralyze,looking for some information if I still have chance to recover ?what should I do to fasten the recovery?my residual tumor location is in the blood vessel and near brain stem,Please ask clearly everything before surgery. I had not inform well enough before surgery. I prefer monitor my residual tumor and wait for my face recovery before decide for what the best radiotherapy,gamma knife or fractionated(fSR)?what is your condition now?

• By pressed4u
• Reply 3233109
• July 23, 2012 at 7:14 am
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ming59

Similar story to mine - had major surgery November 2010 - large part of tumour remaining

Cranial nerves 5/6/7 and lower facial nerves all "palsied" so face frozen - deaf on that (Right) side and eye will not move so have to wear eye patch 24/7

Slight recovery of facial nerves but had operation to raise L eyebrow to make face look less "drooped" also had eyelids operated on so they will partly close on that side

Worse thing is the pain like "electric shocks" constantly shooting across L face

Psycholigicaly (never good speller!) not confident being seen in public as children often point at "the Pirate"

Lost use of L side of voice box and throat so swallowing difficult

BUT surgeon said I was "days away" from brain stem death as tumour so compressing it

A Live Dog better than a Dead Lion so thankful to be here and attending youngest daughters Wedding next month - support of family tremendous

Overcoming difficulties bit by bit - no magic cure recovers my face but Ice Cream is still gorgeous on the right side! Difficult as I know but every day life is a great gift and lived to a lesser but still "full" for me extent

Good luck - I would never have surgery again - but your condition maybe different - not medically qualified so only my opinions

All the Best

• By Hilberts_23rd
• Reply 3402310
• September 24, 2012 at 2:26 pm
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Major surgery (9hr operation - in semi-sitting position) in Dec 2011. 1 week intensive care with single pneumonia after acid reflux into lung during surgery followed by 3 weeks r & r in regular ward; followed by further 2 weeks rehab to become fully mobile again.

Surgery successful (95% of tumour removed and the 5% remaining was cauterized to stop blood from feeding it). However, I have acute dizziness and the left side of my face and jaw is numb (like a massive, and permanent dose of lidocaine at the dentist). No headaches though, thankfully.

The surgeon was tremendous, and, when it was accidentally discovered in 2008 (during RMI for thyroid cancer), said that I'd probably had it for 15 years given that it was already 4 cms diameter and that it was severely compressing spinal cord and brain ventricles (which lead to hydrocephalus in 2010). At that stage it was too big for gamma-knife so they had use invasive surgery. After surgery I asked the surgeon if he'd filmed it, and when he said 'yes', I asked for a copy. So I have 3 DVD's of the surgeon poking around in my brain, with all the different tools used and the sterile swabs they rest the tools on when operating. Very instructive albeit boring (since there is no voice commentary). However you can see similar one's with nerve-maps on YouTube to get a better understanding of brain topography.

• By Ming59
• Reply 3462180
• October 16, 2012 at 7:34 am
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Hi Gloria, have you done your petroclival surgery?
I hope you are ok. I have also petroclival meningioma, 2011may I had traditional surgery.
Dr removed only part of it, due to the hard location.(pushing brain stem)
After surgery, dr inform me my facial nerve intact. But after more than 1 year, I still have facial weakness left of my face.
Lost hearing left ear. Slightly balance problem. Slight Diplopia. I can't raise my eyebrow, smile uneven.
Very stressing.
Dr suggest to have gamma kill the remnant tumor.
But I heard, gamma is high radiation, one shot radiation.
Some oncology, suggest fractionated radiotherapy, safer. They divide radiation in 5 weeks, every shot 30 minutes.
What about you Gloria? Your surgeon can get it all? What about facial weakness?at last what hospital and dr you chose?
I heard that John hopkin and mayo is good, since iam not living in USA , I will appreciate to have some information regarding this 2 hospital.
Wish you all the best.

• By Ming59
• Reply 3462240
• October 16, 2012 at 8:04 am
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Hi pressed4u,Sorry just in touch now.this few months I tried hard to massage, exercise face. But up to now, I have no improvement yet for the palsy. Iam very sad, I can't take as relax as you.
My petroclival meningioma before surgery size 2.2x3x3 cm. and after surgery remnant tumor is 2.2x2.5x1.2 cm . 5 hours surgery time.
My facial nerve intact. But palsy left face, slight balance problem, slight Diplopia, total deaf left ear.
Do you have remnant tumor left?
Right now, iam so confused what radiation must I have for my remnant tumor?
Neuro surgeon suggest gamma, oncologist suggest fractionated radiotherapy, safer. Since gamma high dose shot radiation.
And I still have palsy. If any one can help information what hospital and whose MD ? I heard John hopkin and mayo famous in brain tumor?
I lived outside USA. But I would like to have second opinion before any treatment further for remnant tumor.
Iam trauma with my first surgery.
By the way, do you know what should we do for our palsy. Do we have chance to get well?at least I want that I can raise my eyebrow.
Not hard to chew, smile more even? Do we still have hope after 1 year palsy?
I wish, I canbe as brave as you.

• By pressed4u
• Reply 3462484
• October 16, 2012 at 9:25 am
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Hi
Was a large tumour (meningioma) and about half remains - surgeon arranged radiotherapy because biops showed tumour was WHO Grade 2 and occasionaly might grow again and tumour was fibrous in nature which is unusual and difficult to deal with

Tumour was (I think - 4 cm)

Surgery took over 12 hours

Facial exercises are recommended for the palsy but have little effect in my experience - Physio did a lot to get me up and walking again - balance gone but able to cope - did not expect to be bed bound when I went into hospital - consequence of time in ICU in coma

Gabapentin 3 times daily for pain but makes u so tired I have reduced to 1 at night - pain has subsided

If some of your tumour remains radiotherapy non-invasive and apart from considerable discomfort in the mask to keep still had no bad effects on me - not qualified medically but for me - no more surgery whatever is suggested

Went into hospital as a human with a suddenly discovered tumour - came out after 6 months as a shadow of former self
I did feel the surgeon drilling the skull despit anaesthetic and other after effects in ICU too much for me to take again

I sincerely hope you do not need and "surgery" now and show some relief in the palsy - my surgeon said what has recevered in first 12 months is best u can hope for. Always weigh up medical advice and discuss with family - from breadwinner to invalid came to me overnight and the depression and similar is a big issue in itself. Do not let family take on more than they can cope with and I found a diary helpful as I can write (slowly) about pain/depression/regrets without burdening family with the if I spoke about them - an outlet for the anger. Surgeon and team were brilliant - local to Liverpool here is the UK specialist neurosurgery centre and they were marvellous ( http://www.thewaltoncentre.nhs.uk/ )

Plastic surgeon who raised my L eyebrow said we here in UK very lucky as NHS completey free and not a worry - I do hope you are not additionally burdened with worries over cost

In UK we are very lucky - local council fitted a stairlift for me and adapted a room as a "wet room" - no cost to us -and Disability scheme gives us a car for my wife - new every 3 years - so I can get to hospirtal appointments etc

Lots to be thankful for and last scan I had (August) showed no regrowth of tumout - no scan now till next August

Sorry for if not too positive - I do hope you are slowly regaining confidence and ability - again not medical qualifications but for my part will have no more surgery - I just could not cope

Best Wishes and I am glad you are alive and learning to cope

• By Ming59
• Reply 3465655 · In reply to 3084908 by shaynic
• October 17, 2012 at 10:55 am
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Hi shaynic,
Giant petroclival, I wonder how big is that? My petroclival meningioma size 3x3x2.2cm.(is that big?).
Post surgery end up with facial palsy .now it has been 17 months post surgery. I still have face palsy. Your sister is very lucky.
Seems you got a good neurosurgeon. I lost my left hearing,facial palsy, , slight Diplopia. Still left remnant tumor. 2.2x1.2x2.5cm.
Is your sister have remnant tumor