Brad’s Story

Back in December 1995, I was diagnosed with a “glomus jugulare” tumor that was behind my right ear.  I had surgery in Jan. ’96 to have it removed (all the pics below are clickable to see a larger version).

Stitches Stitches2

It was an 18 hour surgery, and a very difficult time.  In order to remove the entire tumor, they had to remove my right ear drum, so that left me deaf on that side.  And the tumor was wrapped around the facial nerve, so for about 6 months after surgery, I had complete paralysis on the right side, below is a pic of me trying to smile, and the entire right side of my face is “dead”.

Facial paralysis

They were 99% sure that they removed all of the tumor, so just to be safe, ever since then, we’ve done follow-up MRI scans once every few years, just to keep an eye on things and make sure nothing was coming back.  The good news is that things have remained stable in the area behind my right ear, however in the follow-up MRI done in Jan 2012, they found 2 more tumors in my neck.  Here’s a picture from that scan:

In the above photo, it’s as if you are looking at me from the front. So the big white blob on the right side is actually the tumor on the left side of my neck.

These are called “carotid body tumors”, and I was diagnosed with one on each side – these are also called “paragangliomas” (hence the name of our blog).  On each side of your neck the main carotid artery comes up, and then just under the jawline, they “bifurcate”, or split, into the internal and external carotid arteries.  This is where the tumors were sitting, right at the “bifurcation”.  The one on the left was the larger one, about 3x3x5 cm, and the one on the right is smaller.  The doctor that broke the news to me explained how there is a very good chance that there is a genetic link, and that would be the reason for these current tumors, as well as the glomus from 1995.  We started asking around in the family, and it turns out that my Grandma Blake had a tumor removed from her carotid artery way back in the 1950’s.

Also, my sister Amy was concerned as she’s had lumps in her neck for years, so she went and had an ultrasound, and it turns out she has the exact same types of tumors, one on each side like me.

Initially, I saw a couple different surgeons in Denver, and although we liked them a lot, they both told us that they do not treat a lot of these each year – one said about 6 patients a year, while the other one said he had treated about 75 patients over the last 15 years who had these kind of rare tumors – about 5 per year – not a lot!!  I did some further research to try and find someone that had more experience with these kinds of tumors, and found a team out at the NIH (National Institutes of Health) in Bethesda, MD, where they have an ongoing clinical research protocol specifically for what I have.  I contacted them and got a reply back within hours that they wanted to see me.  So we made the arrangements, and Amy and I went together to the NIH in mid-April of 2012.  They don’t mess around at the NIH – it was a full 4 days of testing – blood draws (about 15 vials), 24-hour urine test, then the scans:

  • MRI of head and neck
  • MRI of chest, abdomen and pelvis
  • Full body CT scan
  • 3 separate full body PET scans – each time they injected us with some kind of crazy radioactive gunk

After all the scans and tests were done, we met with the main doctor and his team.  The good news for me:

  • There were no other tumors elsewhere in my body (this was a real concern, that there could be more)
  • The tumors that I have are “non-functioning”, meaning they are not releasing catecholamines or metanephrines (this would have made things much more complicated and scary)
  • There is hope that with continued research, there is the possibility of finding a CURE for this within the next 5 to 10 years!

The bad news, was essentially what we already knew, except for the fact that they were not sure if the larger tumor on my left side was actually one tumor, or possibly 2 or 3 separate tumors all jammed together.  They also saw a small “nodule” just behind my thyroid on the left side.  I got genetic testing done, and it returned as a positive for the mutation called SDHD (Amy also tested positive).  The other huge concern, that weighed on me heavily, was that my 2 sons, Chris and Logan, each had a 50% chance of getting it.  We had them both tested, and thankfully, they both came back negative, which was a HUGE RELIEF!!  My brother Matt also was tested and came back negative, so we know that the mutation has stopped, and won’t be passed on.

So for me, initially they set a quick surgery date of May 10.  But then the surgeons decided they wanted an additional test done before surgery, called an “occlusion test.”  So the surgery got postponed, and ended up being pushed back into August.  It ended up that Amy and I were both scheduled for surgery on the same date in August, 2012.  For me, I went through the following:

  1. Balloon Occlusion test on Monday, Aug. 6 – this is where they inserted 2 catheters into my femoral artery (by my groin), then snaked them both up into my head – one going to the larger tumor in my neck, on the left side, and one on the right side.  Then they inflate a small balloon on the left, and monitor the bloodflow – the purpose of this is to make sure that blood is still flowing adequately up to the brain, in the worst case scenario that they have to remove the entire carotid artery on the left side during surgery.  Unfortunately, I had to remain conscious during this test – it was not at all fun, and that afternoon I had the worst headache I’ve ever experienced in my life.  Cara had to hussle around Bethesda to get to a pharmacy and get pain meds for me.  But thankfully the tests came back as we had hoped, so I was cleared for surgery.
  2. Surgery happened (for both me and Amy) on Wed, Aug. 8.  There are more details and pics in the blog posts, but surgery went well – they were able to get the entire tumor out, without any complications or issues.  That afternoon, I was up and about, and on the road to recovery.
  3. We all (myself, Amy, Cara, and our parents Bob and Di) flew home on Sunday, Aug. 12, and I was able to resume work the following week, pretty amazing!!

I went back to the NIH for follow-up testing in October 2012, and they confirmed that the left tumor was completely gone, and it looked good.  For my remaining tumor on the right side, the fortunate thing for me is that we have all of my MRI scans going back over the years, so they are able to compare images going back. From what they see, this tumor has not grown at all in the last 7 years, so for now, the plan is to just leave it alone and monitor it.  They made it very clear to us that “once you’re a patient with the NIH, you are a patient for life.”  So basically, I was told that I will always have to plan on going out to the NIH about once a year for follow-up tests and scans. Since that time, things have changed a bit, I think primarily because of budget cutbacks, and the NIH will only bring you back for testing if you have “active disease”, which just means that you still have tumors.

Since I still have the one tumor on the right side, I have continued to go back to the NIH about once a year for scans.

Another interesting aspect of the genetic mutation I have (SDHD), is that there is a direct correlation with altitude.  The higher the altitude, the worse it’s supposed to be, in terms of tumor growth and the number of tumors.  I grew up in the mountains of Evergreen, CO, at about 8000 feet, and had lived in Fort Collins ever since 1991 (at about 5,000 feet). So when the doctors made it clear that I had to get out of Colorado, we had a family discussion. We ended up sticking around in CO to let my older son finish High School. He graduated in the Spring of 2013, and then we sold our house that summer and made the move down to sunny Sarasota, FL! Now I live at an altitude of about 10 FEET.

Will try and keep this site updated with new entries and updates, and pictures!  Please be sure to go to the main blog page (https://paragangsters.wordpress.com/) to see updates.

One other note – I decided that it was only fair to give some names to my 2 tumors, so I would like to introduce you to:  Mary Kate and Ashley!!  It will be sad to see these 2 bitches go….  not..

–Brad

45 Comments

45 thoughts on “Brad’s Story

  1. Melinda Hartsock

    You are too funny Brad! So glad you went to a new website. I had trouble getting onto the last one. So glad to hear you are having surgery soon and are getting rid of Mary Kate and Ashley. We will be praying for you. Is Cara going to be able to stay out there with you? If either of you need anything, let us know. And no, Cara can’t request Harris pizza 🙂

  2. What if I request the Harris pizza, then do we get some??? : )

    Yes, Cara will be out there with me for most of the time. My parents are coming out as well.

    • Jimmy mitchell

      Brad, your story is exactly like mine. I had surgery in 2010 on my paragangyomas on my right side. The two of them enter tangled to become the size of a a orange. I had dr choudery and his team remove the tummers. They had to go through behind my ear and remove the nasty basterds. 12 hours latter I was done done but now have only one vocal cord. I have two more on my left side and dont want to get them out for fear of never being able to speak agin. I also have two sons I am worried about. My dad and two of his siblings have the same genetic mutation. I haven’t decided if we want to test the kids. We live in Colorado also. I was raised in westcliffe, 7800 feet. I curantly ranch in he Colorado at 3800 ft.
      Hope all is well and you have found peace with your conditions. I no I have had a battle.

  3. Love you, Bro! Can’t wait for MaryKate & Ashley to be outta here!

  4. Rita and Lenny Lucero

    I am so sorry you and your family are having to go through this. We will continue to keep you and your sister in our prayers. Your optimism and positive nature will help so much. Such a connection with the mind and body!! Will be keeping in touch. Lucero Family

  5. Prabu

    Brad,

    I read the blog today and I am so sorry. My prayers are with you during this difficult time. I wish you and your sister a fast recovery.

    -Prabu

  6. Linda Daly

    Amy I had no idea. So sorry to read both your story and your brothers. Keep me informed as to you progress. I will keep you both in my prays. I wish you a successful surgery and a quick recovery!

  7. Thank you for your inspiring story. My daughter-in-law also has a paraganglioma/carotid body tumor and is going to have her surgery at the NIH on August 22nd. She and my son are leaving San Diego for Bethesda next Tuesday on the 15th. I ended up at this post but ‘Cathy’ sent us the post from your mother a bit ago saying that both you and Amy are doing well…thank you God! Glad I know your names and your exact story…I will be holding you both in my thoughts and prayers for the next little while until you are out of danger on on the complete road to recovery! We can’t wait to be on the other side of this too and plan to be so by the end of the this month…I just know it. (ps: Cathy still hasn’t gotten the genetic test results back yet, since May)

  8. Jennifer Schafer

    Hey Brad,

    This is Jen Schafer, Matt and Heather’s friend from CSU. I was talking to Matt about yours and Amy’s condition and I am so sorry about your whole situation. I just read your blog and I wanted I see if i could contact you for some information. My parents have a friend in New Hampshire that was just diagnosed with this same condition. Is there any way she could talk to you about this? She is really scared. Thank you.

    Jen

  9. Hi Jen, very sorry to hear that, but I’m more than happy to get in touch with your parent’s friend. I’ll shoot you an email with my contact info.

    –Brad

  10. viviana

    Thank you for sharing your story. My best friend who i love like a sister has been diagnosed with a glomus jugulare tumor. We are all scared! She is only 30 years old. She doesn’t know what to expect. Is there a site you can refer us where we can find more stories or a forum for people with the same type of tumor? I pray for healing for you and your sister! Blessings

  11. Hi Viviana, so sorry to hear that. I will shoot you an email, there is a closed Facebook group that is an excellent resource!

  12. Sarah

    Thanks for sharing this! I too, had a glomus jugulare tumor removed in 2012 and suffered right sided facial paralysis for six months after. Im hoping to not have another tumor growth like you did:( Prayers to you and your family. Wishing you all the best

    • Didouhi

      I was diagnosed today with a glomus jugulare tumor (left side) and the CT scan shows movement into the bone. Thank you for this blog, and blessings to you and all.

  13. Sandy Rose

    Thanks as well from me for your blog and to all who have written sharing your experience. I was diagnosed with glomus jugulare tumor in January this year, previously had carotid body tumor removed in 1990 and all 3 of my sisters all with paragangliomas too(carotid artery). No surgery given risks for me for the GJT, but just finished proton beam radiation at MGH, really hoping it will help stop tumor from growing and the pulsing tinnitus. Not sure whether Brad’s reference to the Facebook group was the pheo/para group, which is great but if any other forums would be also to know. Happy to share my story as we continue our journey and hope the best for you all as you go through yours. It is a tremendous help to hear from others.

    • Hi Sandy, how are you doing? I see you found the group on Facebook, that is a GREAT resource!!

      • Sandy Rose

        Hey Brad,
        I’ve since been to NIH with my twin sister and they found some new lesions, likely a few new paragangliomas. Lucky to have had the most sensitive tests on the planet, i guess..😉. Grateful for my local providers who are working to follow up on all that. Hope to see you and others here at the patient symposium in about a week and exchange stories!!
        Sandy😊
        ps. yes the list serve has been invaluable!

  14. Debra Rose

    Hey, my brother and I (Debra) have bilateral intercarotid paraganglioma. My brother only had the two. I have a vagus attached on the right, a functioning catacolomine, a giant hemangioma on my knee to thigh and was born with a small egg sizesd hemangioma on my back. My father has bilateral and my uncle has bilateral but additionally has an adrenal tumor. My 22 year old daughter is showing signs of an adrenal tumor. My computer is in the shop so I am typing on my phone. Sorry! Am very interested in your view of all of this.

    • Hi Debra!! I’m sorry I didn’t see this until just now, I’m going to email you now.
      –Brad

  15. Mike

    I had an MRI today to try and determine why my left vocal chord and left side of my tongue have become paralyzed. I have a glomus jugulare tumor on the left; they’re recommending surgery as soon as possible. I’m terrified of the surgery, but far more terrified that my condition could be genetic and may impact my children. I think I’m in good hands but will be contacting NIH anyway… thank you for your blog. If you have any advice or insight I’d love to hear it.

  16. Sandy Rose

    Hi Mike, Hope it helps to know there are great resources and people for support such as the pheo para support group on Facebook (https://www.facebook.com/groups/pheoparasupportgroup/ ). You can find fellow patients there who have had this surgery and done well. I opted for proton beam radiation at Mass General, for my same tumor, to stop its growth and although only one year, so far the tumor has stabilized. Others have done great with the surgery. The pheo paratroopers site is also a wealth of information and resources. (http://www.pheoparatroopers.org, )Additionally many of us are involved in the NIH protocol on our tumors. Much luck and hope to see you on the sites!

  17. Jules

    Hi
    My son had a glomus tumour on his left side. He has had it removed and then it came back around his facial nerve just like yourself. His face is dead on the left side. Has yours recovered. They say nothing can be done and offer Botox which relaxes the opposite side if the face so not to make it so obvious He really has very low self esteem and I really want to help him.
    Thanks

  18. charity

    hi , I had an operation last year in July 2016 for the removal of a glomus tumour in the right ear. But now the tinnitus is worse .

    • Hi Charity, what did your doctor say about the tinnitus getting worse? For me, most of the time I’m fine, but I do get some tinnitus from time to time.

  19. Helen

    I live on Parker, CO. I had bilateral CBT”s removed in 2006 and 2007.

    • Hi Helen! Having bilateral tumors sounds suspicious as a possible genetic correlation. Did you follow up with a genetic counselor for testing? If not, I’d be happy to refer you to the counselor I used in Denver, she’s awesome.

  20. Helen Mitchell

    I had bilateral carotid body tumors removed in 2006/2007. The surgery was done within days after discovery, because I was close to having a stroke. The one negative outcome was that I lost my left vocal chord.

    Honestly, I am thankful to be alive.

    If anyone has any questions, fl free to ask me.

  21. Helen Mitchell

    I pondered that myself for two years. Finally, I read some recent research that the genetic mutation is passed down on the paternal side. Soon after reading that research, I was notified that my father’s brother’s son (70 years old) recently had CBT’s removed from the bifurcation location of each carotid artery.

    • It is an interesting way that the genetic mutation can be passed down. I have the SDHD mutation, but I believe this is true for SDHA, B and C as well – you can get the mutation from either your mother or your father. But the mutation will only be expressed if you inherit it from your father. That’s the case for me and my sister – we both got it from our Dad. He got tested, and he has the mutation, but he got it from his Mom (my Grandma), so because he got it from his mom, he carries the mutation but has had no problems (no tumors). Because my sister and I got it from our Dad, then our mutation is expressing and we’ve had tumors to deal with. I had both my kids tested – they both had a 50% chance of getting it from me, and we were VERY fortunate that they both tested negative.

      Regardless, I would highly recommend you get in touch with a genetic counselor – if there are children that could be effected, then the earlier they know, the better they can treat it!!

      • Helen Mitchell

        Do you two have other siblings?  Do they have CBT’s?

        Sent from my T-Mobile 4G LTE Device

      • Liane B.

        Hi, No, only the SDHD mutation functions that way. For SDHB, SDHC, it’s autosomal dominant, meaning we have a 50% to inherit it (and pass it to our children) and it can comes from our mother or from our father. There is no such dad-thing (called maternal imprinting, meaning you’ll express it only if you inherit it from your father) for SDHB and SDHC.

  22. Helen Mitchell

    I read that if inheriting it paternally, the trait is autosomal dominant with 100% penantrance. That means if you carry the gene, you positively will get these CBT’s.

    Obviously, you know much more than I do about the topic. I very much appreciate your information.

    I am curious if my sister inherited this trait. I have read research that indicates it is extremely rare that a sibling inherit’s CBT’s. However, didn’t your sister inherit the CBT’s.

    My sister is the “stick head in the sand” type and will not get tested.

    • Hi Helen,

      I have 2 siblings, my younger sister Amy (who also is part of this blog) inherited the SDHD mutation. Our older brother did not. I’d be curious to see what research you saw that said it is “extremely rare” for siblings to inherit CBT’s? As far as inheriting the mutation from a parent, it’s a 50/50 chance. So for 2 siblings, the chances would be 25% that they would both have the mutation.

      You are correct about the genetic inheritance. If you inherit the SDHx mutation from your father, then you can get CBT’s and/or other tumors. However, if you inherit it from your mother, you are basically a “carrier” of the mutation, but will not get CBT’s. That’s basically how it ran down through my family – my father has the mutation, since he got it from his mother, he has had no tumors or issues. My sister and I inherited it from our father, so we have the CBT’s. And again, had either one of my kids tested positive for the mutation, because they would have inherited it from me (father), then they would have had tumors. I am VERY thankful that both of my kids tested negative for the mutation!!

      If your sister has children, then I would do everything in your power to get her tested. But if she doesn’t have any kids and wants to live in ignorance, then that’s her prerogative!

  23. Helen Mitchell

    Hi Brad,

    Would it be possible for us to meet and discuss o u experiences?

    Helen Mitchell

    • Hi Helen, sure, I’d be happy to chat anytime! I’ll send you an email.

      • Helen Mitchell

        Great. Today is 1/6/2017 at 10:00AM. My phone number is 303-841-9528.

  24. paula cornelius

    Hi Brad, my husband was just diagnosed with a carotid body tumor in his neck on the left side, its good sized, we are taking him to Boston Medical Center and we love his surgeon, ,great guy and is very knowledgeable with these types of surgeries. your story (of course) scared me to death but glad to reach out to someone that has been thru this. the probability of side effects seems pretty high but I’m not even sure what to ask the doc for our next visit. we want to go in with lots of questions so we know more about timeline for recovery, possible side effects and anything else we can think of. they are going up through his groin to slow the blood flow. that procedure sounds scary too. were you awake during the surgery or knocked out? so many things to think about. he’s 59 and in good overall health. he doesn’t have any children or family members left so we don’t know if it was the genetic mutation you speak about. thanks for your help. Paula

    • Hi Paula,

      Glad you found our site! If you click on the main blog page (paragangsters.wordpress.com), you’ll see all of the recent entries going all the way back to 2012, including the notes and pics from the CBT that I just had removed last month.

      I understand where you and your husband are at, definitely scary news to hear!! But it sounds like you found a good surgeon, and that makes all the difference.

      It sounds like they are planning to do an embolization on the tumor prior to surgery? I had that done for my CBT back in 2012, where they go into the femoral artery in the groin, and go up from there. For that procedure, they keep you awake. But for the actual surgery to remove the tumor, they will definitely put your husband under anesthesia.

      I’m happy to answer any questions you have, and/or if it would help to just chat, I’d be happy to get on a phone call with you and your husband. I know it is comforting to talk to someone who’s been through it…

      I hope it all goes well, please keep me posted!!

      I will send you an email with a link to the support group on FB.

      –Brad

  25. paula cornelius

    also if you can disclose that facebook support group that would be awesome. thanks again and hope you are well!!!

    • Helen Mitchell

      Hi Paula,

      I had bilateral carotid body tumors removed. I am available for you, too.

      Helen Mitchell

  26. Nancy Coughlin

    https://www.facebook.com/groups/pheoparasupportgroup/

    Just thought I would post the site address.

    Nancy from Michigan

  27. Kayliegh smith

    Please get back to me iv been diagnosed please get back to me my email is misskayplatts@gmail.com

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