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Need help finding surgeon for carotid body tumor

scottieg
Posts: 2
Joined: Aug 2008

Hi all. My 39-year-old husband has a carotid body tumor. We're in Chattanooga, TN. The surgeon we met with yesterday says we need to find a surgeon who has as much experience as possible with carotid body tumors. Can anyone make any suggestions? We are willing to travel and we are close to Nashville, Atlanta, Birmingham and other major cities in the Southeast.

Also anyone who has had this surgery that could give us a little insight about what we're about to experience would be appreciated.
Thanks!

-Scottie

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I would think that both Nashville and Memphis would have facilities that are up for the task. I am frankly surprised that your surgeon did not have advice for you in this regard.

In any event, I would suggest MD Anderson in Houston TX if that is not too great a burden. I would certainly check it out, as they have a fantastic reputation in virtually all cancer areas and will certainly point you in the right direction if they are not up for it themselves.

Best wishes with your search and with the road ahead. Right now it seems like a long, dark, and narrow road, I am sure. As time goes by, you will see the road widen, you will see it shorten, and you will see it light up with hope.

Take care!

Joe

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Hi Scottie,

You may want to talk to Dr. James Netterville @ Vanderbilt/Ingram cancer center in Nashville. I will try to find my contact # and post it here.

BILL

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

OK, I found it.
Dr. James Netterville
Vanderbilt University Medical center
1215 21st Ave south
Nashville, Tn
615-322-6180
Fax 615-343-9556

Hope this helps! Best wishes

BILL

MCaldwell
Posts: 1
Joined: Aug 2008

I went to Netterville several years ago and he is a fine man and doctor. My particular cancer was base of tongue. I wound up in Memphis at the UTMedical Group, Dr. Sandeep Samant (Head and Neck). Netterville also had checked him out and helped me get set up with him. The reasoning was because of a different treatment Samant was using. Worked well. I would definetely get in touch with this group. 901-347-8220 He is a Head and Neck Specialist.

TereB
Posts: 288
Joined: May 2003

Hi Scottie,

I can imagine what you are going thru with your husband's carotid body tumor because I have a similar one. The surgeon told you right. This is a rare tumor, very vascular and requires a surgeon, many times an ENT, with plenty of experience with this type of surgery. Many times there is a vascular surgeon assisting. Make sure you inform yourself well and ask the surgeon you choose all kinds of questions. Be informed about what could happen during surgery and after surgery. Carotid tumors can be Type I, II and III and the type determines the kind of surgery and the possibility of injury to the carotid vessels and cranial nerves during surgery. Some doctors recommend radiation after surgery, others do not recommend surgery for the small tumors. It is still controversial and that is why you should get a good surgeon experienced with this type of tumors.

From what I have read, to minimize surgical complications, a multidisciplinary approach is required: head/neck (ENT) surgeon familiar with cervical neurovascular anatomy to approach the tumor and a vascular surgeon to assist.

I have a glomus jugulare tumor which is the cousin of the carotid body tumor. Mine is now called a malignant paraganglioma because of so many metastases and I see an oncologist. I still see my ENT once a year. This does not mean that your husband is going to have metastases. I am rare among the rare. After surgery, do not forget to have follow-ups; this is important.

I don't know anybody in your area but I can recommend my own ENT who is very well known in the country and is the dean of medicine at Baylor College of Medicine. We are in Houston and if you cannot come here, perhaps he can recommend someone in your area.

Dr. Bobby Alford
Dean of Medicine
Dept. of Otorhinolaryngology
Baylor College of Medicine

Neurosensory Center of Houston
Institute for Head and Neck Surgery
6501 Fannin, Room NA102
Houston, TX 77030
Email: balford@bcm.tmc.edu
Tel: 713-798-5900
Fax: 713-798-3403

He is very nice, very knowledgeable about this type of tumors and has experience treating them.

Another doctor that may be able to help is
Eugene N. Myers, M.D., F.A.C.S.
Professor and Eye & Ear Foundation Chair
Department of Otolaryngology
University of Pittsburgh School of Medicine
The Eye & Ear Institute, Suite 500
200 Lothrop Street
Pittsburgh PA 15213
412-647-2111 Telephone
412-647-2080 Fax
myersen@upmc.edu

I don't know Dr. Myers personally but he was very helpful to me years ago with information when Univ. of Pittsburgh was doing research on glomus tumors. He also knows about the carotid body tumors and I passed his name to three different people with carotid body tumors that I met here and two of them chose him as their ENT even though they do not live in Pittsburgh.

When I was first diagnosed in 1987 you couldn't find information anywhere. The ENT I saw performed the surgery but I had to change doctors since he really didn't know a lot about these tumors. That's when I found Dr. Alford who actually wrote the first paper about glomus tumors many years ago. In the 90's, many doctors had not even heard of these tumors. These days it is easier to find information in the internet. Just make sure you pay attention to where the info is coming from.

For carotid body tumors, usually an angiography is done before surgery. Some doctors recommend embolization before surgery, others don't. Embolization is done to decrease the amount of blood loss during surgery.Recovery after surgery seems slow and what happens after surgery could be a little difficulty eating, speaking, etc. but there are ways to help you with that and it usually is not a permanent condition.

I do not know what else to tell you except that I am still around after surgery in 1987. Let me know if you have other questions.

Hugs and prayers to you both,
TereB

sassyque
Posts: 44
Joined: Jun 2008

Dr Eugene Myers was my Doctor in 2003 but has since retired.His associates that he had though are still there and seem quite capable.Good luck

scottieg
Posts: 2
Joined: Aug 2008

Thanks to all. We have an appt Tues at Vanderbilt with Dr. Jeffrey Datillo. He tells me that he and Dr. James Netterville often do these surgeries as a team, so we'll be meeting with Dr. Netterville as well.

In your experience, how much time off do you think I will need to take from work, to be with my husband during this surgery and then recovery time at home? Just trying to plan ahead, and line up help with our children.

Also, if all goes well with surgery, how long after surgery, will he be back to "normal" and be able to keep up with our action packed schedule that we seem to have like many other families we know.

Thanks!

-Scottie

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Good Morning Scottie,
Every surgery being different as well as every patient as well it is hard to say how much time off you will need.
I have learned that I have had to redefine "normal". My surgery and treatment was totally differnet than what you husband is about to go through so I can only explain where I am. I had satge IV tonsil cancer that got into a few nodes as well. I had 8 weeks of chemo followed by a 2 week break, than started 6 1/2 weeks of chemo and radiation. This pretty well has made me have to redefine what "normal" is. My saliva glands will never go back to what they once were, but I can easily live with them the way they are, so this is my new normal.(My new normal also has me carrying a water bottle with me everywhere I go) So, it would be hard for anyone to say when or if your current "normal" will ever return.
All my best,
BILL

TereB
Posts: 288
Joined: May 2003

I am glad you found a surgeon. Your husband will not come out of the hospital the day after surgery and he will stay there until doctors think it is okay to go home. Maybe 2-3 weeks, it all depends on what happens during surgery.

Since my tumor was in the head, ear area, I suffered from vertigo for a while and I was very weak so my sister stayed for two weeks, my husband stayed home a week and then went to work. After that, I stayed alone with the kids, didn't do much except look after the kids and my husband came during the day to check on me.

Getting back to normal is hard to say. First, a lot depends on the surgery. Also, if you are in a lot of pain, you will be taking medicine for that. His voice might be different and he might have trouble swallowing. There is therapy to teach you how to swallow and it works.

The good news is that there will be no chemo. Again, depending on the type of carotid body tumor and the surgery, your husband may need some radiation.

Ask about recovery, etc. when you see the surgeons. Also ask about pain after surgery, not only in neck area but also in shoulder area.

You two are in my prayers,
TereB

TereB
Posts: 288
Joined: May 2003

I just remembered something else in case your husband needs radiation. Someone posted here recently about a medication to help protect the salivary glands. Check with the doctors about that.
TereB

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Tere I think you are meaning Amifostine(amiphostine?)

TereB
Posts: 288
Joined: May 2003

I don't know if that is the name, Bill. Someone posted here recently about it and it sounded great. I think Joe had used it too.
Tere

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Yeah, that's the one, Tere...but I'm not sure that the medical profession is confident that it really works. Their take, as I went through it, was that if it created any problems, we would just shut it down.

My OWN take was and is: do what you can, and if it works, good for you!

As a result of their ambivalence, I can't say for sure that it helped, but I DO have saliva glands working.

Take care,

Joe

TereB
Posts: 288
Joined: May 2003

Hey Guys,
I was not offered that drug to protect my salivary glands, perhaps it didn't exist then. Don't know if it works. What I know is that one of my salivary glands "died" after radiation. I had radiation in the head/neck area three times.
Tere

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