chondrosarcoma

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)

Well, it's been about 5 years since my tumor was treated.  Things have been ok - all things considering - until recently.  Two months ago I began to experience a sensation of the surface of my tongue like it was in a permanent state of recovering from chewing a piece of hot cinnamon gum.  Additionally, the tongue sometimes "seized" or "cramped" to the side of my mouth for about 30 seconds.  MRI showed the tumor has grown a little, getting all cozy with my brain stem and carotid arteries.  The doctors say I"m maxed out on radiation so that is not an option.  The doctors feel that the risk/reward is not good for trying to go in after it again.  They are offering chemo, but they say this is so rare that there are no good studies out there to give me any real statistics.  This sucks.  Otherwise I actually feel as good as any time since the tumor was first discovered.  Sorry I"m not being positive but I needed to vent.  I'm going to be looking online for someone in the country that specializes in this kind of tumor, if that exists.  I will keep looking here for answers.  Thank you all.

Hi all

I'm reading that there are others with skull base tumours - we really are a rare bunch!

Has anyone else's been INSIDE their petrous apex? So far, it sounds like many are outside of the bone, but mine is completely encased in bone. Just diagnosed CS one week ago and waiting for surgeon to investigate options - since it's so rare to begin with, and mine is the only one he has seen inside the bone. In the meantime, I'm trying to do my own research. He doesn't want to do surgery if we don't have to, so he's looking into doing just proton beam. Has anyone else skipped surgery and done just radiation? Would love to hear from anyone in a similar situation. Hope you are all doing as well as can be.

Jujo75 said:

Skull Base Chondrosarcoma in Petrous Apex

Hi all

I'm reading that there are others with skull base tumours - we really are a rare bunch!

Has anyone else's been INSIDE their petrous apex? So far, it sounds like many are outside of the bone, but mine is completely encased in bone. Just diagnosed CS one week ago and waiting for surgeon to investigate options - since it's so rare to begin with, and mine is the only one he has seen inside the bone. In the meantime, I'm trying to do my own research. He doesn't want to do surgery if we don't have to, so he's looking into doing just proton beam. Has anyone else skipped surgery and done just radiation? Would love to hear from anyone in a similar situation. Hope you are all doing as well as can be.

Ten years ago, I was diagnosed with skull-based chondrosarcoma. My tumor was also fully encased in bone. i remember it being in the left petrous (sp) apex. The word clivus (sp) was tossed around too. The surgery was performed by Dr. Martin Lazar at Medical City in Dallas TX. The surgery itself took 8 or 9 hours. He dicussed all kinds of risks with me including damage to the six cranial nerves that traversed the area and death. Dr. Lazar's practice is made up of those impossible surgeries that no other doctor will touch.

As for me, i survived the surgery with NO damage to any of the cranial nerves. That is an unheard of success given that the tumor was completely inside the bone. About 10 mos after the surgery i went to MGH for two months of Proton beam rad with Dr. Liebsch (sp) as my doctor. He warned me that I would likely lose my hearing in the left ear. He studied my case and adjusted the beam during my treatment hoping to save my hearing - and it worked! The only reminder I have of this procedure is a scar on the back of my head that is hidden with my hair.

What is left of the tumor has not budged. I encourage anyone with a similar situation to contact Dr Lazar. He used an outside imaging firm because the hospital's wasn't good enough, if he doesn't like it, he makes them redo it. He will only accept people who are the best in their profession to evaluate the MRIs. The radiology Dr he demanded was the one who was in charge of radiology in an operation to separate conjoined twins. It was a pretty big deal. I'm sure you could look it up online.

I heard him on the phone lining up the folks he wanted for the surgery, apparently one of the docs was scheduled to be somewhere else, and he simply said "then change his schedule", and it was done. This man doesn't take any chances; he only works with the best.

He has a wonderful, albeit dry, sense of humor. After the surgery, he even helped me write the letter to Liebsch explaning my medical history and how I felt about my cancer and why I choose Proton beam. In short, he needed to be confident that you would finish the therapy and not bug out in the middle. He wants patients who will do things right. For example, I was told while I was in Boston that Dr Liebsch does't accept patients who smoke.

If you do go to Boston, don't forget to enjoy that incredible city, and know you are being treated by the absolute best.

Leslie

I am 2 years post surgery for chondrosarcoma grade 1 and subsequent gamma knife tratment. I am so glad to have found this group, I had never heard of this untill I was diagnosed. I feel so grateful to still be here! I understand this is a very rare tumor.I still have MRI scans every six months. The removal damaged the 6th crainal nerve  for my left eye. I had to have additional surgery to have my eye point staight. It still does not move left and I now have to wear glasses. My neuro surgeon said they do not know whst causes this in this location. from what i have read the prognosis is very good for full recovery. Any thing out there that might point to the cause of this?

jpinrover said:

Count me BACK in...

Well, it's been about 5 years since my tumor was treated.  Things have been ok - all things considering - until recently.  Two months ago I began to experience a sensation of the surface of my tongue like it was in a permanent state of recovering from chewing a piece of hot cinnamon gum.  Additionally, the tongue sometimes "seized" or "cramped" to the side of my mouth for about 30 seconds.  MRI showed the tumor has grown a little, getting all cozy with my brain stem and carotid arteries.  The doctors say I"m maxed out on radiation so that is not an option.  The doctors feel that the risk/reward is not good for trying to go in after it again.  They are offering chemo, but they say this is so rare that there are no good studies out there to give me any real statistics.  This sucks.  Otherwise I actually feel as good as any time since the tumor was first discovered.  Sorry I"m not being positive but I needed to vent.  I'm going to be looking online for someone in the country that specializes in this kind of tumor, if that exists.  I will keep looking here for answers.  Thank you all.

Hello @jpinrover.

How did you treat your tumor after recurrence ? Another surgery ?

My 81 year old father was just diagnosed with Chondrosarcoma of the soft tissue cartlidge that originated in his septum. This tumor is pressing on the left eye and has begun erroding the left side of his brain.  Surgery is an option but the neurosergeon was very upfront aout the possible side effects from this surgery.  The ENT will try to remove it through edoscopic surgery but the neurosurgeon is skeptical that it can be done because of the size and may require brain surgery.  Due to his age they are not looking at reconstruction surgery.  Can anyone comment on how their surgery went and if the reward outways the risk.  We have been told possible stroke, heartattack, bleeding and infection, possible double vision. Thank you for any feedback

Hey all,

Feeling really fortunate to have found this resource! Last week I was diagnosed with mid-to-high grade chondrosarcoma that's coming from my skull. It's wrapped around my optic nerve. Getting an angiogram tomorrow as well as a full body PET. Up until getting the official diagnosis, I was thinking it may have been a  lower grade, so now I'm getting a little anxious. Surgery to remove as much as possible is scheduled for next Tuesday, and then radiation after that. So far, the biopsy I had is the most invasive procedure I've had done (no broken bones, some stitches in college) so I'm a little anxious albeit eager to put this pain behind me as soon as I can.

I'm 25 and otherwise in pretty good health, so I'm not really sure what to expect. Terrified at the thought of it having spread, but I don't have any other pain or reason to think it might have started elsewher.

Tips/advice/etc. is welcome. Will update as I find out. Staying optimistic.

schnauzerpower55 said:

skull based tumor

I am 2 years post surgery for chondrosarcoma grade 1 and subsequent gamma knife tratment. I am so glad to have found this group, I had never heard of this untill I was diagnosed. I feel so grateful to still be here! I understand this is a very rare tumor.I still have MRI scans every six months. The removal damaged the 6th crainal nerve  for my left eye. I had to have additional surgery to have my eye point staight. It still does not move left and I now have to wear glasses. My neuro surgeon said they do not know whst causes this in this location. from what i have read the prognosis is very good for full recovery. Any thing out there that might point to the cause of this?

 

Hi,

I had chondrosarcoma surgery and was unable to move my right eye past the midpoint causing double vision.  I subsequently had surgery which rotated the muscles in the eye enabling the "good" muscles to allow by eye to move past the midpoint.   Dr. Campolattero in NY performed the surgery and I no longer have double vision.  My peripheral vision isn't 100% on the right side, but it's very close.  I don't know if this would work for you or not, but sounds like it's worth a call.

Willym

So happy to find this group!

In 2014 I had a MRI for migraines ordered by my PCP. That’s when my tumor was discovered. I went to Mayo Clinic in Jacksonville FL and got a 2nd opinion in my home town Tampa FL as USF Physicians group Dr. Harry VanLoveren. It was decided the best thing to do was monitor. In 2022 I started having double vision & imbalance and had a MRI which showed tumor pressing on cranial nerves. I had endoscopic endonasal surgery pathology was not definitive. In 2023 symptoms again with severe vertigo. MRI showed it re-occurred so I was scheduled for surgery 11/9 same approach. I had a stroke during surgery. I spent 8 days in hospital & then released to rehab due to stroke. Spent 2 days there before suffering massive bleed from nose. I earned my one way ticket back to ICU & learned it wasn’t a nose bleed I had a carotid artery aneurysm that burst and I was lucky I survived. I had an angio to place stent & cooling which took care of anyeurysm. I am home & will be seeing Radiation Oncologist later this month. They want me to do radiation. I am so happy I found this group. I was told Skull base Chondrosarcoma was pretty rare.

Forgot to mention it’s grade II Chondrosarcoma it’s in skull base petrous apex.