malignant paraganglioma

BobB2

fcraig said:

One not sad story reply
Thanks for the encouraging news Dave B.I was diagnosed with Paraganglioma a year ago and have had two operations to remove two very large tumors.I havent had any radiation as of yet but I do 3-stage chemo once a month.The chemo has stopped the growth of my current tumors and I havent had any "new" growths....Two tumors have even dissappeared,THERE is HOPE for Paraganglioma survivors and I thank-you for the reminder.

Just begining the battles with Paraganglioma
Thanks for the encouraging news and more Hope. Just diagnoised with matastisizing Paraganglioma. First noticed a tumor in parodit gland area. CTs, MRIs, PET, show 9 tumors in the spine and neck. Two near middle of back are large enough to be pushing on the spinal cord. Some smaller tumors appear to be in pelvis, abdomen, and other areas. It appears a decision on treatment is coming soon. Any advise or experiences with surgery near the back to remove such tumors? Results from radiation treatment of spine and neck? Chemo also seems to be in the picture down the line.

TereB

BobB2 said:

Just begining the battles with Paraganglioma
Thanks for the encouraging news and more Hope. Just diagnoised with matastisizing Paraganglioma. First noticed a tumor in parodit gland area. CTs, MRIs, PET, show 9 tumors in the spine and neck. Two near middle of back are large enough to be pushing on the spinal cord. Some smaller tumors appear to be in pelvis, abdomen, and other areas. It appears a decision on treatment is coming soon. Any advise or experiences with surgery near the back to remove such tumors? Results from radiation treatment of spine and neck? Chemo also seems to be in the picture down the line.

Malignant Paraganglioma
I have malignant Paraganglioma because I have many metastases. Before any mets, it was a glomus jugulare tumor in my head, around the ear area. Tumor was removed with surgery but it grew back, very aggressive and little by little I've been having new tumors on my neck, lungs, bones (spine, pelvis, femur, clavicle, etc.). The type of tumors I have are slow growing. I've had radiation several times and it works by shrinking the tumor and also encapsulates it. I think they've used different types of radiation on me, different machines and it has always worked, tumor has shrank and pain stops. Last I heard there was only one chemo drug, old and only shrinks the tumors so I haven't tried it, see no reason to get so sick with chemo when the tumor only shrinks. My primary/original tumor is rare so I guess there hasn't been a lot of research. First tumor was found in 1987 and even though I have so many mets, I am still around, still work. 2-3 times a year sometimes or at least once a year I have an MRI and CT scan to check for new tumors and keep an eye on growth of the old ones. My tumors go dormant sometimes and do not grow at all, that's when I do not need tests so often.

I had radiation on my back about a year ago because 2 tumors on my spine where pushing on the spinal cord (thoracic vertebra). There was a little pain, barely noticeable, but it went away after radiation. For the tumors on pelvis I had stereo tactic radiation (they wrapped me around special table and technician moved me around with his computer and shot me from different angles, just like those internet games. This radiation was short and I didn't get sick.

I also had radiation on my neck years ago. That tumor is still there but hasn't caused any problems since then. Since I've had radiation in the head/neck area more than once, it affected my jaw bone (mastoid, I think) and my teeth. If you need a dentist, get one who has experience with cancer patients, especially if a tooth needs to be pulled. Radiation in the head/neck area dries your mouth so you need to have good teeth hygiene.

Don't know what else to tell you because I am not sure if we started with the same tumor. If it is like mine or similar (carotid body tumor) you'll be around for a long while and you may not need chemo.

All the best



Paraganglioma covers many tumors, not all are the same. Do you what was your original/primary tumor or where it was?

TereB

Dave B said:

One not sad story
I also have metastasized paraganglioma. Mets mainly to spine and lungs. Was diagnosed in March of 2003; was determined that the origin was the carotid body tumor I had removed in 1990. Have been on monthly Zometa since Dec 2003. Lung mets are "too numerous to count" and have been stable at 4-6mm since diagnosis. Bone mets seem to keep growing, but also at a slow rate. Have had radiation treatment to my lumbar area in 2004 and 2008 to control pain. No chemo ever. I see my onc about every four months for a routine check, and off I go. No clue why the slow growth now. Just taking every day as a gift, and not thinking about tomorrow until I wake up that day. I hope this helps the spirits of both the newly diagnosed and all others. This cancer can go indolent all on its own. Have hope.

Glad for you, Dave B
I have metastasized paraganglioma or malignant paraganglioma. Mine started with a glomus jugulare tumor in my head, a cousin of your carotid body tumor. Have mets in neck, lungs, all along the spine, pelvis, femur, etc. Diagnosed in 1987 and also have many mets in lungs. For some reason, my doctor said not to Zometa. I have at least one MRI and CT scan a year (sometimes more) to check on my tumors, whether there are new ones or check growth of old ones. These type of paragangliomas are slow-growing. I have also had radiation a few times, when I was in pain and the radiation has shrunk the tumor enough to not cause pain. I haven't had chemo either because the only drug available is old and only shrinks the tumors, it's not a cure. Sometimes my tumors go dormant, no growth and don't know why. Once the two biggest tumors (one in head, one in spine) shrank all by themselves. My doctors and I wish we knew what caused them to shrink so we could do more of the same.

Dave B is right, have hope. I was first diagnosed in 1987 and I am still around. Every day I thank God for that day and I do not worry about tomorrow.

BobB2

TereB said:

Malignant Paraganglioma
I have malignant Paraganglioma because I have many metastases. Before any mets, it was a glomus jugulare tumor in my head, around the ear area. Tumor was removed with surgery but it grew back, very aggressive and little by little I've been having new tumors on my neck, lungs, bones (spine, pelvis, femur, clavicle, etc.). The type of tumors I have are slow growing. I've had radiation several times and it works by shrinking the tumor and also encapsulates it. I think they've used different types of radiation on me, different machines and it has always worked, tumor has shrank and pain stops. Last I heard there was only one chemo drug, old and only shrinks the tumors so I haven't tried it, see no reason to get so sick with chemo when the tumor only shrinks. My primary/original tumor is rare so I guess there hasn't been a lot of research. First tumor was found in 1987 and even though I have so many mets, I am still around, still work. 2-3 times a year sometimes or at least once a year I have an MRI and CT scan to check for new tumors and keep an eye on growth of the old ones. My tumors go dormant sometimes and do not grow at all, that's when I do not need tests so often.

I had radiation on my back about a year ago because 2 tumors on my spine where pushing on the spinal cord (thoracic vertebra). There was a little pain, barely noticeable, but it went away after radiation. For the tumors on pelvis I had stereo tactic radiation (they wrapped me around special table and technician moved me around with his computer and shot me from different angles, just like those internet games. This radiation was short and I didn't get sick.

I also had radiation on my neck years ago. That tumor is still there but hasn't caused any problems since then. Since I've had radiation in the head/neck area more than once, it affected my jaw bone (mastoid, I think) and my teeth. If you need a dentist, get one who has experience with cancer patients, especially if a tooth needs to be pulled. Radiation in the head/neck area dries your mouth so you need to have good teeth hygiene.

Don't know what else to tell you because I am not sure if we started with the same tumor. If it is like mine or similar (carotid body tumor) you'll be around for a long while and you may not need chemo.

All the best



Paraganglioma covers many tumors, not all are the same. Do you what was your original/primary tumor or where it was?

TereB
Thanks for the encoraging information you shared. I'm having radiation treatments on my spine tumors now. It's a bit early, but signs are pointing to it working. The Hemo Oncologist is recommending Chemo to start a few weeks after radiation ends. Looks like they are picking CyADIC, a Cyclophasphamide combo. Not sure about strenght and how much/ how long yet. I think they want to try and reduce size of the tumor near my jaw and to get to some of the tumors or lesions in the bones themselves.

Not sure where my first tumor or origin of the Paraganglioma came from. I did not have any symptoms except for about a 30 lb weight loss 3 years ago. Very recently had neck pain, lower spine pain, and jaw pain which lead to CT's, diagnosis, etc. We do not know how long I may have been living with this and how fast the tumors are growing if at all. I plan to discuss "limited" Chemo, and monitoring with my Oncologist.

Thanks again for the hope for more days we can be thankfull for.

Dave B

TereB said:

Glad for you, Dave B
I have metastasized paraganglioma or malignant paraganglioma. Mine started with a glomus jugulare tumor in my head, a cousin of your carotid body tumor. Have mets in neck, lungs, all along the spine, pelvis, femur, etc. Diagnosed in 1987 and also have many mets in lungs. For some reason, my doctor said not to Zometa. I have at least one MRI and CT scan a year (sometimes more) to check on my tumors, whether there are new ones or check growth of old ones. These type of paragangliomas are slow-growing. I have also had radiation a few times, when I was in pain and the radiation has shrunk the tumor enough to not cause pain. I haven't had chemo either because the only drug available is old and only shrinks the tumors, it's not a cure. Sometimes my tumors go dormant, no growth and don't know why. Once the two biggest tumors (one in head, one in spine) shrank all by themselves. My doctors and I wish we knew what caused them to shrink so we could do more of the same.

Dave B is right, have hope. I was first diagnosed in 1987 and I am still around. Every day I thank God for that day and I do not worry about tomorrow.

Long, long time
Glad to see you are doing as well as before, Tere! Would love to catch up more with you, fellow 20+ year survivor.

madura_g

Stas said:

Paraganglioma
Paraganglioma

My father has been diagnosed with metastatic paraganglioma (districts of abdomen, retroperitoneal area, lynths, liver, skeletal bone). We are a family from Ukraine. Recently he has been treated in Switzerland with 2 cycles of radionuclide therapy with 90 DOTATATE. We will be very happy to have a communication and cooperation with you.

Hope, everything will be ok.

Stanislav

WRITE US

dobra2007@rambler.ru

or find us in ICQ under the nick "Stas Batryn"

Multiple Paragangliomas in Abdomen
Hi,

When I was reading through the csn.cancer.org forums, I cam across one of your posts about your father having being diagnosed with Paraganlioma. I thought of get in touch with you to get more details about this condition as my father also been diagnosed with multiple paragangliomas in his kidney, adrenal and extra-adrenal locations and some other locations in the chest area. My father lives in Sri Lanka and we learned that they don't have the expertise and the technology to treat this condition in my home country. We are totally helpless as we have to come to a very desperate situation without any proper directions how go about it. In your post you mentioned that your father received treatments in Switzerland. Appreciate if you could let me know how to seek medical assistance in Switzerland and if you had to pay for the medical expenses how much did they cost you. Also let me know whether they have the expertize in surgical procedures to remove these tumors, if my father is eligible for such an option.

Thanking you for your time and kindness and I am really grateful to you if you could provide us some advice or guidance.

Best Regards
Madura Gurusinghe
email: madura_g@yahoo.com

madura_g

BobB2 said:

TereB
Thanks for the encoraging information you shared. I'm having radiation treatments on my spine tumors now. It's a bit early, but signs are pointing to it working. The Hemo Oncologist is recommending Chemo to start a few weeks after radiation ends. Looks like they are picking CyADIC, a Cyclophasphamide combo. Not sure about strenght and how much/ how long yet. I think they want to try and reduce size of the tumor near my jaw and to get to some of the tumors or lesions in the bones themselves.

Not sure where my first tumor or origin of the Paraganglioma came from. I did not have any symptoms except for about a 30 lb weight loss 3 years ago. Very recently had neck pain, lower spine pain, and jaw pain which lead to CT's, diagnosis, etc. We do not know how long I may have been living with this and how fast the tumors are growing if at all. I plan to discuss "limited" Chemo, and monitoring with my Oncologist.

Thanks again for the hope for more days we can be thankfull for.

Multiple Paragangliomas in Abdomen
Hi TereB,

While reading through the posts in this forum, I came across your post about your condition. My father too was recently diagnosed with multiple paragangliomas in his abdoman and chest areas. In fact, first he was diagnosed with a tumor in the left side of the head and they removed the tumor with a surgery. However, post surgery biopsy suggested that it's a paraganglioma and advised to perform CT in the abdomen area, which revealed many in his abdomen including in right kidney, adrenal and extra adrenal areas and chest areas. We still don't know the malignancy (although the oncologist suggested that it could be malignant due to the fact that it's been scattered in multiple locations) of it and we couldn't find a medical expertise in my home country (Sri Lanka) to treat this condition.

You have mentioned that you are undergoing treatments. I just wanted to know, which country you are receiving the medical assistance in? and how much it cost you for the treatments? And does the country provides any medical assistance to the international patients?

I really appreciate if you provide us with some information and that would be really helpful for us to be little relieved to know that we could at least try something rather than waiting handicapped with no solution.

Thanking You,
Madura Gurusinghe
madura_g@yahoo.com

ValerRose

signals4235 said:

malignant paragaglioma
hello everyone..i had an adrenal tumour removed 1987 and a abdomen tumour removed 2010....have chest tumour and neck tumour remaining....no radiotherapy or chemo yet..removal of adrenal tumour cured high blood pressure for a while but kidney shrank bringing it back again.cateclomines rose high enough to make me feel ill so tumour was removed in abdomen which lowered levels back to normal...continue to have 48 hr water collections to keep eye on things...some very positive feedback from people here .thanks..reading other peoples accounts on here and other websites makes me think that this disease is very random in how it affects people and every case is different......

facebook group for paraganglioma
I wanted to let you all know that there's a really active Facebook support group for people with Paragangliomas and Pheochromocytomas. https://www.facebook.com/groups/pheoparasupportgroup/

aliveandkicking

hollyshoe said:

CBT
I had a CBT removed from the left side of my neck, and it was malignant and had spread to several lymph nodes only. I had 6 weeks of radiation, and am doing well now. You're right, there is not alot of info...but it seems to want to spread, but takes years to do it. Good luck with your journey.

Carotid body tumor
Hi Hollyshoe. I also had a 2cm carotid body tumor removed from the left side of my neck in 2008. I had first noticed it 4 yrs earlier but chose to ignore it. They found it during an ultrasound to examine my parotid gland which had blown up to the size of an orange! They removed the tumor with no margins and told me that there was no way for pathologist to tell if a carotd body tumor is malignant, the only way is to see if it grows back and spreads. They also told me that they are not usually malignant,however a specialist i met with a year later said that they can be up to 25% of the time. Since then i havehad problems with swelling of my upper left neck and inner ear as well as ongoing swelling ad enlarged parotid gland. I also seem to have some jaw erosion/pain. They did a CT last year and couln't see anything but an nlarged cervical node and slightly enlarged parotid gland. Just wondering if you had any of these symptoms in your neck. Any info. would really help.

aliveandkicking

BobB2 said:

Just begining the battles with Paraganglioma
Thanks for the encouraging news and more Hope. Just diagnoised with matastisizing Paraganglioma. First noticed a tumor in parodit gland area. CTs, MRIs, PET, show 9 tumors in the spine and neck. Two near middle of back are large enough to be pushing on the spinal cord. Some smaller tumors appear to be in pelvis, abdomen, and other areas. It appears a decision on treatment is coming soon. Any advise or experiences with surgery near the back to remove such tumors? Results from radiation treatment of spine and neck? Chemo also seems to be in the picture down the line.

parotid gland swelling
Hi BobB2. I was diagnosed with a carotid body tumor in left neck in 2008. They removed it, but didn't get good margins, also told me no way to know if malignant unless it came back. I have had problems with an enlarged parotid gland also on left neck, it has swelled up size of an orange (not pretty) three times starting before they discovered the CBT. I also have pain/erosion of my left jaw and what feels like a fullness in left ear. They did a CT last year that didn't reveal anything so they wrote it off to scar tissue from surgery, (athough as i reminded them the parotid gland was blowing up before they did the surgery) Any info. would help on the parotid gland. They say mine is slightly enlarged now with slightly increased blood flow from US doppler test.

TereB

madura_g said:

Multiple Paragangliomas in Abdomen
Hi TereB,

While reading through the posts in this forum, I came across your post about your condition. My father too was recently diagnosed with multiple paragangliomas in his abdoman and chest areas. In fact, first he was diagnosed with a tumor in the left side of the head and they removed the tumor with a surgery. However, post surgery biopsy suggested that it's a paraganglioma and advised to perform CT in the abdomen area, which revealed many in his abdomen including in right kidney, adrenal and extra adrenal areas and chest areas. We still don't know the malignancy (although the oncologist suggested that it could be malignant due to the fact that it's been scattered in multiple locations) of it and we couldn't find a medical expertise in my home country (Sri Lanka) to treat this condition.

You have mentioned that you are undergoing treatments. I just wanted to know, which country you are receiving the medical assistance in? and how much it cost you for the treatments? And does the country provides any medical assistance to the international patients?

I really appreciate if you provide us with some information and that would be really helpful for us to be little relieved to know that we could at least try something rather than waiting handicapped with no solution.

Thanking You,
Madura Gurusinghe
madura_g@yahoo.com

madura-g
The proper diagnosis for my rare tumor was done in the United States and that is also where I have received treatments and surgery.

I was living in Singapore when I started having problems but the doctor I saw didn't think it was serious. Same thing happened with the first two doctors in the U.S. What anybody needs is a GOOD doctor, one that is familiar with this type of cancer.

The cost of my treatments has been different over the years because price changes, different radiation machines, number of radiation sessions, etc. Medical care in Houston, Texas, United States is expensive so I have health insurance which covers a lot of the cost but I still have to pay for my share.

Some hospitals in Houston have special rates for international patients but it is not free. You can check with M. D. Anderson Cancer Hospital www.mdanderson.org or with The Methodist Hospital and they'll you know what they have for international patients. There may be other hospitals but I do not know which ones.

Good luck.
TereB

marciewhipple

ValerRose said:

facebook group for paraganglioma
I wanted to let you all know that there's a really active Facebook support group for people with Paragangliomas and Pheochromocytomas. https://www.facebook.com/groups/pheoparasupportgroup/

Malignant Paraganglioma success!!
I have posted before, but it has been years. I am an almost 45 year-old mom of 3 boys and wife of a radiation oncologist, oddly enough. I had my first encounter at age 21 when they found a glomus jugulare. I had several recurrances of the primary site. Also had gamma knife at Mayo Clinic in Rochester, MN for a glomus tympanic and small brain stem activity. I've had radiation on my spine. My disease wasn't realized to be metastatic until 1999. At that time my youngest child was a month old. It was devastating. They gave me six months. I've been incredibly lucky and had the best of care available to me. My mets included lung, liver, spine, media steinum- all over the place. My PET scan was described to me as "lighting up like a Christmas Tree." Pretty comforting. Well it is now 13 years later and I'm doing really well. I am on a monthly treatment of Sandostatin and also Zomeda. They are monthly treatments. Purely a last ditch effort, but I have had basically NO GROWTH of existing disease, and the majority of my lesions have spontaneously disappeared. I'm no longer on the Zomeda, just the monthly injection of Sandostatin. My tumor marker was up over 1300 when I started treatment 10 years ago, and now I am in normal range of about 70. This is having my chromograndin checked by blood work. I know how everyone feels, but there is hope, I'm the proof!!! I would look into this treatment for anyone that is searching and finding nothing. There are basically no bad side effects from the Sandostatin, and you can be on it for life. I did have radiation on my spine which was highly successful, as was the gamma knife. I would also HIGHLY recommend that if you have this disease, you do NOT become pregnant. In our opinion, my condition was worsened by pregnancy, since there is a hormonal component to the tumor type. Probably explains why my 1st PET scan was so active, and now they are basically normal. I had just had a baby prior to the first one. I'm happy to help anyone any way that I can. My oncologist tells me that I should live a normal life span. Please feel free to email me at Marcieboleywhipple@gmail.com. God bless you- and know that there ARE survivors living pretty normal lives!!!

hollyshoe

aliveandkicking said:

Carotid body tumor
Hi Hollyshoe. I also had a 2cm carotid body tumor removed from the left side of my neck in 2008. I had first noticed it 4 yrs earlier but chose to ignore it. They found it during an ultrasound to examine my parotid gland which had blown up to the size of an orange! They removed the tumor with no margins and told me that there was no way for pathologist to tell if a carotd body tumor is malignant, the only way is to see if it grows back and spreads. They also told me that they are not usually malignant,however a specialist i met with a year later said that they can be up to 25% of the time. Since then i havehad problems with swelling of my upper left neck and inner ear as well as ongoing swelling ad enlarged parotid gland. I also seem to have some jaw erosion/pain. They did a CT last year and couln't see anything but an nlarged cervical node and slightly enlarged parotid gland. Just wondering if you had any of these symptoms in your neck. Any info. would really help.

Carotid body tumor
In 2005, age 46, I woke up with Mono-like symptoms. Only difference was I had only one large swollen gland on my neck. I tested positive for Mono, and although the gland got a little smaller it didn't go away, and the extreme tiredness never got better. After several months I saw a head/neck Dr and a scan confirmed a Carotid body tumor. It was surgically removed 2006 (it was almost 5cm) at Wake Forest (Dr Browne did a spectacular job!), was malignant but had only spread to 3 lymph nodes, followed by 6 weeks of radiation. The following year I started having palpitations which turned into constant Atrial Fibulation (A-Fib), not sure if that is partly because of the treatment. I still have the tiredness problem- which has never gone away. But other than that, I'm doing well.

Shucrazi74

Paraganlioma

I am reading all of this info that everyone is posting. It's nice to read that other people are going through this also. I have a tumor in my thigh, sacrum and now in my spine near my T4. I had surgery in April to remove one from my pelvis. I was treated with 36 rounds of radiation and now just finished my 1st treatment of MIBG. Any advice would be great. 

Shucrazi74

marciewhipple said:

Malignant Paraganglioma success!!
I have posted before, but it has been years. I am an almost 45 year-old mom of 3 boys and wife of a radiation oncologist, oddly enough. I had my first encounter at age 21 when they found a glomus jugulare. I had several recurrances of the primary site. Also had gamma knife at Mayo Clinic in Rochester, MN for a glomus tympanic and small brain stem activity. I've had radiation on my spine. My disease wasn't realized to be metastatic until 1999. At that time my youngest child was a month old. It was devastating. They gave me six months. I've been incredibly lucky and had the best of care available to me. My mets included lung, liver, spine, media steinum- all over the place. My PET scan was described to me as "lighting up like a Christmas Tree." Pretty comforting. Well it is now 13 years later and I'm doing really well. I am on a monthly treatment of Sandostatin and also Zomeda. They are monthly treatments. Purely a last ditch effort, but I have had basically NO GROWTH of existing disease, and the majority of my lesions have spontaneously disappeared. I'm no longer on the Zomeda, just the monthly injection of Sandostatin. My tumor marker was up over 1300 when I started treatment 10 years ago, and now I am in normal range of about 70. This is having my chromograndin checked by blood work. I know how everyone feels, but there is hope, I'm the proof!!! I would look into this treatment for anyone that is searching and finding nothing. There are basically no bad side effects from the Sandostatin, and you can be on it for life. I did have radiation on my spine which was highly successful, as was the gamma knife. I would also HIGHLY recommend that if you have this disease, you do NOT become pregnant. In our opinion, my condition was worsened by pregnancy, since there is a hormonal component to the tumor type. Probably explains why my 1st PET scan was so active, and now they are basically normal. I had just had a baby prior to the first one. I'm happy to help anyone any way that I can. My oncologist tells me that I should live a normal life span. Please feel free to email me at Marcieboleywhipple@gmail.com. God bless you- and know that there ARE survivors living pretty normal lives!!!

Shucrazi74

I am so happy reading your site. I was just diagnosed at 38 and so far have been pretty responsive to treatment. But finding out that the gene mutation that I have doesn't allow me to be a canadit for some treatment, it's nice to know that there is other options. My team of doctors at penn in pa are awesome. But I would like to talk to them about these other options in case I need something eles. Any other feed back would be great. 

MPB

BobB2 said:

TereB
Thanks for the encoraging information you shared. I'm having radiation treatments on my spine tumors now. It's a bit early, but signs are pointing to it working. The Hemo Oncologist is recommending Chemo to start a few weeks after radiation ends. Looks like they are picking CyADIC, a Cyclophasphamide combo. Not sure about strenght and how much/ how long yet. I think they want to try and reduce size of the tumor near my jaw and to get to some of the tumors or lesions in the bones themselves.

Not sure where my first tumor or origin of the Paraganglioma came from. I did not have any symptoms except for about a 30 lb weight loss 3 years ago. Very recently had neck pain, lower spine pain, and jaw pain which lead to CT's, diagnosis, etc. We do not know how long I may have been living with this and how fast the tumors are growing if at all. I plan to discuss "limited" Chemo, and monitoring with my Oncologist.

Thanks again for the hope for more days we can be thankfull for.

Looking for information

Hello TereB,

I hope you are well.  Thank you for posting here.  have a family member who was just diagnosed with malignant paraganglioma (tumors on spine and brain) and we are not finding much information and feeling very lost.  I'm wondering if you would share your story?

 

Best regards,

 

MPB

Caryn_Mayersohn

My daughter has been diagnosed with Carotid Paraganglioma

Hi everyone, I'm so thankful to find all of your contributions  to this important website. My daughter who just turned 26 was recently diagnosed with Carotid Paraganglioma. She was told she needs surgery to remove the tumor which is filled with the fight or flight hormone. Her tumor is on the left side of her neck under her ear. She was also told her Epstein Bar showed up high after some blood testing and she likely had Mono. Since my daughter and her new husband are working fulltime, we have set out to find her a vascular surgeon. We live in Orange County, California and are willing to travel to find someone/a team that has experience with this. I'm reaching out to ask if anyone can recommend an excellent team that we can contact. Thank you in advance for any help or direction you can provide.

Thank you, and I pray you are doing well.

Sincerely,

Caryn