chondrosarcoma

jpinrover · October 2010

Zhar said:
Adding another name to the list..
May 2008: Symptoms double vision, headaches, cognitive fog.
February 2009 Diagnosis upon biopsy: Chondrosarcoma of petrous bone (skull base, in cavernous sinus right side impinging on abducens-6th optic nerve, carotid artery & sphenoid sinus). Partial removal Feb. 17 via transsphenoidal endoscopic approach, still healing - sinus infection yay! and awaiting stereotactic radiotherapy commencing April for 7 weeks.
Would love to hear from survivors of similar, as it is true there is not much literature on the subject. (My oncologist says that about 5-10 people are seen per year at Princess Margaret Hospital in Toronto, ON)

Count me in too!
Great to hear about others with this rare tumor. I was diagnosed with a grade 1 skull base chondrosarcoma in Sept 2008. I had been having headaches and double vision. Turns out the tumor was displacing my brain stem and growing into my ear and cavernous sinus, where the 6th (eye) nerve was affected. The good doctors at Vanderbilt in Nashville took the tumor out with 2 extensive craneotomies in a 3 month span. The doctors rated these surgeries a 10 on a scale of 1 to 10 for difficulty. This left me deaf in one ear and drastically more cross-eyed than before. Really though, as big and grotesque as the incisions were on my head, they healed up nicely and are not that noticeable under my hair. After that, the oncologist told me that proton radiation was the best option, but the only places were Loma Linda in California and in Boston. I chose standard radiation closer to home at Vanderbilt. Over time the radiation will effect the thyroid function. But up till now I'm still tumor free. I finally had eye surgery to correct my eyesight to a much more manageable situation. I do most everything as normal now. I drive, work (office) yard chores, etc. I just have to be careful. Just walking can sometimes be a challenge with a balance problem I have had since the surgeries. I know people think I'm drunk sometimes. (Fingers crossed)

rejoicejennt · June 2011

mrsbe said:
Hi, Im new to this area but i did have a chondrosarcoma only mine grew on the base of my skull up through and around the left side of my brain it was squeezeing everything off so they retracted most of it then i had the root, which was by the brain stem radiated with Proton radiation. Ive been told that they usually appear in the upper body like ribs shoulder spine but rare in the brain.

diagnosed with chondrosarcoma in skull base
Hi there,

I've been recently admitted to St. Michael's Hospital in Toronto and was diagnosed with chondrosarcoma. It's located on my skull base in the centre of my brain, close to the brain stem. I believe it's called the clivus or something.

I have yet to do surgery since it is mildly affecting me. Only my right eye is being weird, I get double vision when i look far left or up or down. It is believed that the 3rd cranial nerve is being pressed on by the tumour.

Right now, Dr. Spears told me to wait and monitor the tumour since the surgery had high risks... about 1 in 4 or 1 in 5 chance of getting a stroke and being paralysed or in worse condition then before surgery. Within the next month of so I will have to go in and get an MRI check again to see the progress of the tumour.

I would like to know if anyone ever has had the surgery for related skull base tumour and how it was for you, the prognosis and so on.

rejoicejennt · June 2011

blazerls said:
Mrs B
Saw your message on another site also. I have had skull base chondrosarcoma.They are rare indeed of skull.Had first surgery 6/2000.Just informed it's back. Will see surgeon in Jan and take it from there.Would love to talk to you. On your other posting you had wanted to discuss effect and some what compare.Please contact me if you want.

diagnosed with chondrosarcoma in skull base
Hi there,

Glad to have found this community. I've recently been diagnosed with chondrosarcoma in my skull base as well. The neurosurgeon believes it's that, but has not confirm it until they get a biopsy and due to the location of the tumour, it most likely will be done during surgery.

Right now, since i'm mildly affected (only right eye vision giving me double vision and blurry-ness) it is suggested that I wait for a month or so until I get another mri to see the progress of the tumour.

The doctor told me there are high risks for the surgery giving me a stroke or bleeding because of the location of the tumour, it's located right in the skull base, centre of my brain, near the brain stem.

This case seems very rare, I hope those who are in similar situation can come together for support and sharing information to help one another who are facing it be more at ease.

Glad to see that I'm not the only one. I'm only 23 years old and it seems that this tumour has been there for several years, growing very slowly.

Hope all is well with you

rejoicejennt · June 2011

jpinrover said:
Count me in too!
Great to hear about others with this rare tumor. I was diagnosed with a grade 1 skull base chondrosarcoma in Sept 2008. I had been having headaches and double vision. Turns out the tumor was displacing my brain stem and growing into my ear and cavernous sinus, where the 6th (eye) nerve was affected. The good doctors at Vanderbilt in Nashville took the tumor out with 2 extensive craneotomies in a 3 month span. The doctors rated these surgeries a 10 on a scale of 1 to 10 for difficulty. This left me deaf in one ear and drastically more cross-eyed than before. Really though, as big and grotesque as the incisions were on my head, they healed up nicely and are not that noticeable under my hair. After that, the oncologist told me that proton radiation was the best option, but the only places were Loma Linda in California and in Boston. I chose standard radiation closer to home at Vanderbilt. Over time the radiation will effect the thyroid function. But up till now I'm still tumor free. I finally had eye surgery to correct my eyesight to a much more manageable situation. I do most everything as normal now. I drive, work (office) yard chores, etc. I just have to be careful. Just walking can sometimes be a challenge with a balance problem I have had since the surgeries. I know people think I'm drunk sometimes. (Fingers crossed)

hi there,
so happy to find
hi there,

so happy to find that i'm not the only one diagnosed with chondrosarcoma on my skull base located near the brain stem.

i've yet to have the surgery seeing that there are high risks of getting a stroke or paralysis, my doc advised me not to since i'm mildly affected (it's pressing on the 3rd cranial nerve, affecting my right eye, i get headaches and double vision as well)

I will have to wait 4-6 weeks before I get another MRI to see the progress of the tumour. I plan to check out a chinese doctor, hoping herbal medicine will help the tumour shrink, since we never know what will happen, got to try out all options.

I'm 23 year old female, and seem to be having a normal life until this diagnosis hit. it is a very rare situation, but glad to know i'm not the only one.

hope all is well with you.

NoHarvardMGH · July 2011

rejoicejennt said:
diagnosed with chondrosarcoma in skull base
Hi there,

I've been recently admitted to St. Michael's Hospital in Toronto and was diagnosed with chondrosarcoma. It's located on my skull base in the centre of my brain, close to the brain stem. I believe it's called the clivus or something.

I have yet to do surgery since it is mildly affecting me. Only my right eye is being weird, I get double vision when i look far left or up or down. It is believed that the 3rd cranial nerve is being pressed on by the tumour.

Right now, Dr. Spears told me to wait and monitor the tumour since the surgery had high risks... about 1 in 4 or 1 in 5 chance of getting a stroke and being paralysed or in worse condition then before surgery. Within the next month of so I will have to go in and get an MRI check again to see the progress of the tumour.

I would like to know if anyone ever has had the surgery for related skull base tumour and how it was for you, the prognosis and so on.

Hi rejoicejennt ...
I've just quietly celebrated my 10th year of post-radiation for Chondrosarcoma in Right Cavernous Sinus so my tumor is not in the same location as yours but I had similar symptoms ( nasty headaches and diplopia ) which prompted me to seek medical attention in the first place.

You are female in your twenties and I am male in my thirties back in 2000 when my tumor was diagnosed.

Sounds like you have been well informed re: surgery and its risks (stroke, blindness, seizures, death).

I had 2 crainiotomies within 5 months and then proton-beam radiation. Radiation has its side effects and long-term effects and for me I was told that because the radiation went through my pituitary gland it would affect hormones resulting in thyroid issues as well as being able to father children. So far my annual bloodwork is good but I have been made aware of symptoms to look out for.

Of course I have no idea of your treatment plan so the above may not apply to you.

In many ways I don't dwell much on my illness anymore. I just wanted to get on with my life ! My tumor is still visible on subsequent MRI's but it has not grown. I have no headaches. Double vision has never returned to normal, but I have glasses with prisms that do a fine job.

My suggestion is that you don't be afraid to ask the doctors questions, no matter how simple or insignificant they may seem. Write stuff down and have a family member or friend attend appointments to ask questions or just support you.

Melynn21 · October 2011

rejoicejennt said:
hi there,
so happy to find
hi there,

so happy to find that i'm not the only one diagnosed with chondrosarcoma on my skull base located near the brain stem.

i've yet to have the surgery seeing that there are high risks of getting a stroke or paralysis, my doc advised me not to since i'm mildly affected (it's pressing on the 3rd cranial nerve, affecting my right eye, i get headaches and double vision as well)

I will have to wait 4-6 weeks before I get another MRI to see the progress of the tumour. I plan to check out a chinese doctor, hoping herbal medicine will help the tumour shrink, since we never know what will happen, got to try out all options.

I'm 23 year old female, and seem to be having a normal life until this diagnosis hit. it is a very rare situation, but glad to know i'm not the only one.

hope all is well with you.

Skull Base Tumor Survivor- 9 years
Hello there! Wow- your story was so similar to mine that I had to comment. I was diagnosed with a skull base Chrondrosarcoma tumor at the age of 21. I experienced awful headaches and started to have double vision on the right. I had also experienced two grand mal seizures prior to the diagnosis. (I have since had four seizures which are attributed to scar tissue). My eye sort of "stuck" when I would look to the right. I went through three surgeries (one was a 2-day surgery) and then proton beam radiation in Boston. I lost my hearing in my right ear. People would never know what I went through if I didn't share my story.

The hardest part was being so young and I get sad and feel like I have missed out on stuff. It is so important to form a support group for yourself with people who really understand what you are going through. There are so many resources out there today.

Take care and I hope to read more about your story.

nnavarrete67 · November 2011

sdsimpson said:
Chondrasarcoma
I was originally diagnosed with chondrasarcoma 17 years ago. My cancer was in my femur, which led to an amputation 5 years ago. The cancer has come back twice since then, both times in my lung. Every time it comes back, i have it plucked out!

Chondrosarcoma
Hi, I was diagnose with chondrosarcoma an July/2011 I had surgery in sep/2011 and had the tumor taken out along with ane of my ribs and cuarrently going thru radiation treatment which is being really hard on me. so I just want to know if you got any radiation treatment after your surgery and if you did what are the side effects?? I'm looking forwared to hear from you
thank you.

alanreg · January 2012

rejoicejennt said:
diagnosed with chondrosarcoma in skull base
Hi there,

I've been recently admitted to St. Michael's Hospital in Toronto and was diagnosed with chondrosarcoma. It's located on my skull base in the centre of my brain, close to the brain stem. I believe it's called the clivus or something.

I have yet to do surgery since it is mildly affecting me. Only my right eye is being weird, I get double vision when i look far left or up or down. It is believed that the 3rd cranial nerve is being pressed on by the tumour.

Right now, Dr. Spears told me to wait and monitor the tumour since the surgery had high risks... about 1 in 4 or 1 in 5 chance of getting a stroke and being paralysed or in worse condition then before surgery. Within the next month of so I will have to go in and get an MRI check again to see the progress of the tumour.

I would like to know if anyone ever has had the surgery for related skull base tumour and how it was for you, the prognosis and so on.

living with chondrosarcoma.
Hi rejoicejennt,
Had surgery at Tor. Western in 1998. For skull base chondrosarcoma. Was on meds for seizures for a while, off them now. Was advised to have Proton Bean rad. in Boston that would prolong my life by 20 yrs. Tumor is still contained. With scheduled mri every 2 years. Next app. Feb.2012.
Prognosis is good. Some side effects from surgery and rad. but with the support that I have I am able to live an almost normal live.
Hope this helps. Contact me if you wish.
Hope you are doing fine.

alanreg · January 2012

rejoicejennt said:
diagnosed with chondrosarcoma in skull base
Hi there,

I've been recently admitted to St. Michael's Hospital in Toronto and was diagnosed with chondrosarcoma. It's located on my skull base in the centre of my brain, close to the brain stem. I believe it's called the clivus or something.

I have yet to do surgery since it is mildly affecting me. Only my right eye is being weird, I get double vision when i look far left or up or down. It is believed that the 3rd cranial nerve is being pressed on by the tumour.

Right now, Dr. Spears told me to wait and monitor the tumour since the surgery had high risks... about 1 in 4 or 1 in 5 chance of getting a stroke and being paralysed or in worse condition then before surgery. Within the next month of so I will have to go in and get an MRI check again to see the progress of the tumour.

I would like to know if anyone ever has had the surgery for related skull base tumour and how it was for you, the prognosis and so on.

living with chondrosarcoma.
Hi rejoicejennt,
Had surgery at Tor. Western in 1998. For skull base chondrosarcoma. Was on meds for seizures for a while, off them now. Was advised to have Proton Bean rad. in Boston that would prolong my life by 20 yrs. Tumor is still contained. With scheduled mri every 2 years. Next app. Feb.2012.
Prognosis is good. Some side effects from surgery and rad. but with the support that I have I am able to live an almost normal live.
Hope this helps. Contact me if you wish.
Hope you are doing fine.

LeslieVail · April 2012

Hector10 said:
New Member
I am new to this site, but have belonged to others for a while. This is the first site that I have ever read of or heard of another person who had a skull based Chondrosarcoma. It is nice not to be alone. How are you doing, where are you?

Skull based chondrosarcoma
Hello fellow cancer-mates,

I was diagnosed in 2006 with skull base chondrosarcoma, proton beam in MA in the fall of 2007. Here it is 2012 and the tumor has not budged. The proton killed it.

Proton is the best treatment, excision was not an option for me. Liebsch (sp?) at MGA is the master.

Leslie

ufgator7 · May 2012

LeslieVail said:
Skull based chondrosarcoma
Hello fellow cancer-mates,

I was diagnosed in 2006 with skull base chondrosarcoma, proton beam in MA in the fall of 2007. Here it is 2012 and the tumor has not budged. The proton killed it.

Proton is the best treatment, excision was not an option for me. Liebsch (sp?) at MGA is the master.

Leslie

Chondrosarcoma of the Skull Base
Hi LeslieVail,

I saw your note above. I was recently diagnosed with a chondrosarcoma of the skull base. It was mostly removed but the doctors have suggested proton beam therapy to continue the treatment and to make sure it doesn't come back. Can you share your experiences with me? Did you suffer any side effects? I have also spoken with Dr. Liebsch and was very impressed by him. Is there a reason you chose proton therapy over IMRT? I am only 30 so it's scary to make these decisions that will effect me long term.

Thanks for any insight you can provide.

Best,
Lauren

frog21 · May 2012

ufgator7 said:
Chondrosarcoma of the Skull Base
Hi LeslieVail,

I saw your note above. I was recently diagnosed with a chondrosarcoma of the skull base. It was mostly removed but the doctors have suggested proton beam therapy to continue the treatment and to make sure it doesn't come back. Can you share your experiences with me? Did you suffer any side effects? I have also spoken with Dr. Liebsch and was very impressed by him. Is there a reason you chose proton therapy over IMRT? I am only 30 so it's scary to make these decisions that will effect me long term.

Thanks for any insight you can provide.

Best,
Lauren

Skull Base Chondrosarcoma
Lauren,

I just finished proton radiation for my tumor on May 8, 2012. I had a partial resection by the surgeons on Dec 20. I had a few side ffects from the radiation therapy but they were not too bad. My tumor was wrapped around my brain stem, several nerves and my carotid artery on my right side. My surgeon, Joseph Watson, Fairfax, VA, said that the only therapy to consider is proton. My therapy was done by Dr. Allan Thornton at the Hampton University Proton Therapy Institiute.

Dale

neese3763 · June 2012

ufgator7 said:
Chondrosarcoma of the Skull Base
Hi LeslieVail,

I saw your note above. I was recently diagnosed with a chondrosarcoma of the skull base. It was mostly removed but the doctors have suggested proton beam therapy to continue the treatment and to make sure it doesn't come back. Can you share your experiences with me? Did you suffer any side effects? I have also spoken with Dr. Liebsch and was very impressed by him. Is there a reason you chose proton therapy over IMRT? I am only 30 so it's scary to make these decisions that will effect me long term.

Thanks for any insight you can provide.

Best,
Lauren

Hi Lauren,
I just wanted to
Hi Lauren,

I just wanted to share my story with you since it seemed familiar with yours.

I am 49 years old and was diagnosed in February that I had Chondrosarcoma of the skull base. It is a low grade stage one. I had surgery on March 19th to remove about 85% of the tumor.

I will be going to Boston MA in two weeks for Proton Therapy with Dr. Liebsch as my Radiation Oncologist. I have to have seven weeks of radiation. I was strongly encouraged that this treatment will arrest this tumor from spreading and assured that my life expectancy will be very long.

As with any surgery or radiation treatment, there are always risks involved, and possible side effects to be had. But I feel for me that I am willing to take a leap of faith, and believe that this is going be the best option for me.

I just got married seven months ago, so I am looking forward to putting this behind me so I can go on with being a newlywed.

Have you made a decision on what you are going to do yet?

Denise

Zhar · January 2013

rejoicejennt said:
diagnosed with chondrosarcoma in skull base
Hi there,

I've been recently admitted to St. Michael's Hospital in Toronto and was diagnosed with chondrosarcoma. It's located on my skull base in the centre of my brain, close to the brain stem. I believe it's called the clivus or something.

I have yet to do surgery since it is mildly affecting me. Only my right eye is being weird, I get double vision when i look far left or up or down. It is believed that the 3rd cranial nerve is being pressed on by the tumour.

Right now, Dr. Spears told me to wait and monitor the tumour since the surgery had high risks... about 1 in 4 or 1 in 5 chance of getting a stroke and being paralysed or in worse condition then before surgery. Within the next month of so I will have to go in and get an MRI check again to see the progress of the tumour.

I would like to know if anyone ever has had the surgery for related skull base tumour and how it was for you, the prognosis and so on.

Skull base Chrondrosarcoma

Hey jenn,

How are you? Any updates? I have very similar diagnosis to you .. surgery and radiation in 2009 for me.. slowly getting back to normal now.

35/F/Toronto

Let me know how it's going.. I also have some questions (about symptoms/effects of treatment) to ask other people who have diagnosis of SBC in clivus/petrous bone region.

Pretty sure this message board does not alert if message sent so please send replies to zh4r at hot mail dot com.

Zhar aka Stacey

ksblack · January 2013

Stefff111 said:
Wondering about other symptoms -
I had an MRI in July of 2009 which revealed a tumor in the petrous bone. I have a history of thyroid cancer; doctors don't seem to know what to make of it --is it thyroid mets or is it chondrosarcoma? (According to medical field with of course various wild opinions in between) One doc said my symptoms did not match what the tumor is. I felt like he was saying that I was making it all up. The tumor is in right side of petrous bone and all of my symptoms---waves of dizziness, tingling in left extremitites, tingling in face and tongue, nausea, inability to walk with steadiness, etc. All is left sided. This comes and goes and varies in intensity. Supposedly the tumor is NOT pressing on my cranial nerves but I don't see how it isn't. I've been since July trying to get a doctor to do something....in the mean time I'm home from work on short-term diability which runs out soon. Very frustrating and depressing!!! I feel absolutely helpless. Just wondering if my symptoms are similar to yours and what can I do?

Hi there, can you tell me

Hi there, can you tell me what kind of symptoms you had in the beginning? I have been telling the neurologist I have head pains in the right

side of the back of my head and do not seem to be getting anywhere with her. She has done 2 MRI's and found unspecified dots on my brain.

The pain is bad and she put me on Lyrica and told me I was showing early symptoms of MS. I am trying to get am appointment with a new neurologist

specializing in MS. I get dizzy and feel sick a lot of times. I feel it is in my head or lymph nodes. I had thyroid cancer in 2006 and had the total

thyroidectomy and I131 radiation. Just curious to know how you felt.

I hope you are getting good care and you get better.

God Bless You,

Karen

Aika · February 2013

Zhar said:
Skull base Chrondrosarcoma
Hey jenn,

How are you? Any updates? I have very similar diagnosis to you .. surgery and radiation in 2009 for me.. slowly getting back to normal now.

35/F/Toronto

Let me know how it's going.. I also have some questions (about symptoms/effects of treatment) to ask other people who have diagnosis of SBC in clivus/petrous bone region.

Pretty sure this message board does not alert if message sent so please send replies to zh4r at hot mail dot com.

Zhar aka Stacey

Skull base chondrosarcoma

Hi, I am from another country in Eurasia but with the same problem. Was diagnosted in Feb 12, one morning just cuold not get up, had headaches, disbalanced walking, vomiting. My neurologist gave me some treatment so I could walk again. In Apr'12 went to Germany, Heidelberg University Hospital for operation, had only partial resection, because the tumor surrounded brain stem, very close to me left eye and hearing nerves. Was recommended to heavy ion therapy at the same hospital. Took it in Nov-Dec' 12. Made anothe mri as recommended after 8 weeks and found that the tumor is still there but stable. So, i cannot understand will the tumor stay there forever and we just need to monitor it for growth? Because as my doctor told me it should dissappear after the treatment. yeasterday wrote my doctor but didn't get an answer yet. If you know anything about please tell how it shall work with this tumor? Morally, i am ready to accept the fact that it will live there and i need just to control it and if required take some therapy.

kathy jo · March 2013

neese3763 said:
Hi Lauren,
I just wanted to
Hi Lauren,

I just wanted to share my story with you since it seemed familiar with yours.

I am 49 years old and was diagnosed in February that I had Chondrosarcoma of the skull base. It is a low grade stage one. I had surgery on March 19th to remove about 85% of the tumor.

I will be going to Boston MA in two weeks for Proton Therapy with Dr. Liebsch as my Radiation Oncologist. I have to have seven weeks of radiation. I was strongly encouraged that this treatment will arrest this tumor from spreading and assured that my life expectancy will be very long.

As with any surgery or radiation treatment, there are always risks involved, and possible side effects to be had. But I feel for me that I am willing to take a leap of faith, and believe that this is going be the best option for me.

I just got married seven months ago, so I am looking forward to putting this behind me so I can go on with being a newlywed.

Have you made a decision on what you are going to do yet?

Denise

Hi Denise

Couldn't sleep because today has been difficult due to my vision. Look who I get encouragement from yet again

God is good.

Love you

kathy

kathy jo · March 2013

neese3763 said:
Hi Lauren,
I just wanted to
Hi Lauren,

I just wanted to share my story with you since it seemed familiar with yours.

I am 49 years old and was diagnosed in February that I had Chondrosarcoma of the skull base. It is a low grade stage one. I had surgery on March 19th to remove about 85% of the tumor.

I will be going to Boston MA in two weeks for Proton Therapy with Dr. Liebsch as my Radiation Oncologist. I have to have seven weeks of radiation. I was strongly encouraged that this treatment will arrest this tumor from spreading and assured that my life expectancy will be very long.

As with any surgery or radiation treatment, there are always risks involved, and possible side effects to be had. But I feel for me that I am willing to take a leap of faith, and believe that this is going be the best option for me.

I just got married seven months ago, so I am looking forward to putting this behind me so I can go on with being a newlywed.

Have you made a decision on what you are going to do yet?

Denise

Hi Denise

Couldn't sleep because today has been difficult due to my vision. Look who I get encouragement from yet again

God is good.

Love you

kathy

Newstart13 · March 2013

NoHarvardMGH said:
Hi rejoicejennt ...
I've just quietly celebrated my 10th year of post-radiation for Chondrosarcoma in Right Cavernous Sinus so my tumor is not in the same location as yours but I had similar symptoms ( nasty headaches and diplopia ) which prompted me to seek medical attention in the first place.

You are female in your twenties and I am male in my thirties back in 2000 when my tumor was diagnosed.

Sounds like you have been well informed re: surgery and its risks (stroke, blindness, seizures, death).

I had 2 crainiotomies within 5 months and then proton-beam radiation. Radiation has its side effects and long-term effects and for me I was told that because the radiation went through my pituitary gland it would affect hormones resulting in thyroid issues as well as being able to father children. So far my annual bloodwork is good but I have been made aware of symptoms to look out for.

Of course I have no idea of your treatment plan so the above may not apply to you.

In many ways I don't dwell much on my illness anymore. I just wanted to get on with my life ! My tumor is still visible on subsequent MRI's but it has not grown. I have no headaches. Double vision has never returned to normal, but I have glasses with prisms that do a fine job.

My suggestion is that you don't be afraid to ask the doctors questions, no matter how simple or insignificant they may seem. Write stuff down and have a family member or friend attend appointments to ask questions or just support you.

12 year anniversary

I just joined this site, 12 years post op as I was just browsing for any new information. October 8,2001 I had a right craniotomy for my skull based chondrosarcoma. My surgery was at Hopkins as I live in Maryland and I followed up with Proton Beam Radiation at Loma Linda Medical Center in Ca.

Until now I have never met anybody who has been diagnosed with this tumor. I know we are a small group but it is nice to know you are not alone. My surgeon did achieve 100% resection and from day one my MRI'S have been clean. I too had Proton Radiation and have had cognitive side effects from it to the point that I am on disability. My Thyroid has just started acting up and I am now on Synthroid for it and Testosterone for low levels.

Ryan_Reid · April 2013

Newstart13 said:
12 year anniversary
I just joined this site, 12 years post op as I was just browsing for any new information. October 8,2001 I had a right craniotomy for my skull based chondrosarcoma. My surgery was at Hopkins as I live in Maryland and I followed up with Proton Beam Radiation at Loma Linda Medical Center in Ca.

Until now I have never met anybody who has been diagnosed with this tumor. I know we are a small group but it is nice to know you are not alone. My surgeon did achieve 100% resection and from day one my MRI'S have been clean. I too had Proton Radiation and have had cognitive side effects from it to the point that I am on disability. My Thyroid has just started acting up and I am now on Synthroid for it and Testosterone for low levels.

7 months from my Surgeries.

I thought I'd put in my experiences. I was 25 when I was diagnosed with a grade 1 skull-based chondrosarcoma, and had a craniotomy behind my right ear about 5 months later. I was diagnosed after some dizziness and chronic headaches. About 90% of the tumor was removed. I had a subsequent surgery to repair a CSF leak that had developed, which, from what I remember, was the worst thing I've ever felt. The second surgery was 3 days later I believe. My memory goes blank in the time in between. I was not advised to do proton beam thereapy at this stage.

Apart from the CSF thing, the surgery was excellent. I can give immense credit to Dr. Robert Spetzler and the Barrow neurological institute in Phoenix. They were extraordinary. It's been 7 months, and I've had several MRI's with no noticeable growth.

The cancer is still there, and I have occasional signature headaches, but it has not done any more damage or metastasized.

It's nice to see that there are a handful of people out there that have the same strange tumor.

chondrosarcoma

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