Glomus Jugulare Tumor

Jjjjherman said:

My wife was just diagnosed with a Glomus Jugulare Tumor and I am not sure if this is the right
spot to ask the question.

We have searched far and wide on the internet and found many definitions and even found a little
(VERY LITTLE) information in the newsgroups areas.

We live on Long Island and of course very few doctors have even heard of this tumor. Thank god
there are docs in Manhattan that deal with this. We currently have an appointment with Dr.
Linstrom (sp?) scheduled at NY Eye and Ear. I also saw there is a group at NYU that deals with
Glomus Tumors--obviously both are very reputable.

Does anybody have a recommendation on any of these doctors or current treatment preferences (we
have seen everything from surgery to radiosurgery) but we won't know much until we speak with a
doctor that has actually dealt with this type of tumors.

As always with a tumor we are scared, but glad to hear they are generally benign, however, we are
noticing there could be side effects to the surgery or leaving the tumor (of course too much
information is concerning us at this point and we have not even had the appointment yet.)

We would love to hear from somebody who has been through this and can give us some guidance.

Thanks in advance.

Jon

Hi Jon,

Seems like location and size are important criteria as to treatment modality.

there's 3 names or more. (I haven't searched the archives or the www on all 3)

emedicine.comtopic309.htmOpen ↗ Synonyms and related keywords: chemodectoma,
nonchromaffin paraganglioma, glomus body tumors, paraganglioma, glomus jugulare tumors, glomus
tympanicum tumors, glomus vagale tumors, carotid body glomus tumors, carotid body tumors

Haller introduced glomus tumors of the head and neck into the medical record in 1762 when he
described a mass at the carotid bifurcation that had a glomus body–like structure. In 1950, Mulligan
renamed this type of neoplasm as a chemodectoma to reflect its origins from chemoreceptor cells. In
1974, Glenner and Grimley renamed the tumor paraganglioma on the basis of its anatomic and
physiologic characteristics. They also created a classification method based on the location,
innervation, and microscopic appearance of the tumors.

Intervention: The preferred method of treatment for glomus tumors of the head and neck is surgery.
However, because most paragangliomas are slow-growing and benign, radiation treatment alone or no
treatment at all is preferred in elderly patients in whom the risks of surgery are relatively high
and the tumor is unlikely to cause serious morbidity or mortality. If the patient is young, surgery
is the best available option because it is the only option that allows total cure.

<bccancer.bc.caExternalAuditoryCanaOpen ↗
landMiddleEar.htm>

Glomus Tumours (Chemodectoma) The primary treatment of these benign tumours when small and
accessible (glomus tympanicum) should be surgical. Most conditions, however, require radical
surgical approaches with significant morbidity in view of the tumour location in the temporal bone
and proximity to the jugular vein and carotid artery.

Radiotherapy may be recommended for larger glomus tumours (glomus jugularis) where surgery will be
incomplete or where surgical morbidity is significant.[]

Watch for a reply from Steph.

J - not a doctor

Jjjjherman said:

Hi all,

My wife was just diagnosed with a Glomus Jugulare Tumor and I am not sure if this is the right
spot to ask the question.

We have searched far and wide on the internet and found many definitions and even found a little
(VERY LITTLE) information in the newsgroups areas.

This is probably not much help, but at least confirms what you know so far. Lance
*****

*GLOMUS JUGULARE TUMORS

CLINICAL AND PATHOLOGIC CONSIDERATIONS Glomus jugulare tumors arise from glomus tissue in the
adventitia of the jugular bulb (glomus jugulare) or along Jacobson's nerve in the temporal bone,
sometimes multifocally. The tumor invades temporal bone diffusely, but growth is characteristically
slow. Sometimes they are endocrine active, with a carcinoid or pheochromocytoma-like
syndrome.418glomus jugulare tumors occur in the jugular foramen, they commonly cause lower cranial
nerve palsies and early symptoms of hoarseness and difficulty swallowing. Later, facial weakness,
hearing loss, and atrophy of the tongue become prominent. Pulsating tinnitus also may be a
presenting symptom, and a pulsating mass can sometimes be seen behind the eardrum. A presumptive
radiologic diagnosis of glomus tumor can be made by CT or MRI scanning, with jugular neurilemmoma
being the main differential diagnosis. Because glomus tumors incite a tremendous blood supply,
particularly by way of the ascending pharyngeal artery, cerebral angiography provides the definitive
diagnosis. Because preoperative tumor embolization is essential to surgical removal of glomus
tumors, the diagnostic angiogram should be performed just before surgery when possible.

Histopathologically, numerous vascular channels are distinctive. The background is composed of
clear cells clumped in a fibrous matrix. A small percentage of glomus tumors are malignant.

SURGERY The treatment of glomus jugulare tumors is controversial, with advocates for radiation,
surgery, and the combination. Most clinicians would agree that a resection should be attempted and
that in most instances gross surgical resection, if not a cure, is a realistic goal. Surgery on
glomus tumors is most often performed by a neurosurgeon and a head and neck surgeon together after
preoperative embolization. The base of the skull in the region of the jugular foramen is first
exposed, and neurovascular structures are identified and mobilized through a high transverse
cervical incision. When the incision is extended behind the pinna and a mastoidectomy is completed,
the facial nerve can be protected, and the entire tumor bulb, jugular bulb, and internal jugular
vein can be seen passing through the base of the skull. Finally, after a suboccipital craniectomy,
the sigmoid sinus above and the jugular vein below can be ligated, and the segment between them
excised with the attached tumor. Complications of this procedure include CSF leak and cranial nerve
(particularly facial) palsy.

RADIATION THERAPY Even though glomus tumors are histologically benign, radiation therapy is
effective and has been recommended for symptomatic lesions that cannot be totally resected or as
primary treatment.glomus tumors treated with radiotherapy alone and a 91% local control rate for
glomus tympanicum and jugulare tumors treated with radiotherapy alone or with preoperative or
postoperative irradiation. The dose required for control is relatively modest. Kim and associates
reported a series of 40 patients with such lesions and added a literature survey. 1.4% recurred with
doses of 40 Gy or higher.

Based on these data, a dose of 45 Gy in 5 weeks is recommended. Although a dose of 50 Gy has been
advocated for more advanced tumors, there is no evidence that such lesions require higher doses.
Treatment is usually delivered through a homolateral pair of angled, wedged portals, depending on
the precise location of the lesion. More sophisticated three-dimensional conformal techniques may
be used to reduce the dose to surrounding normal tissue structures.

*From Cancer: Principles and Practice of Oncology [edited by] Vincent T. DeVita, Jr., Samuel
Hellman, Steven A. Rosenberg; 319 contributors.-6th, ISSN 0892-0567, ISBN 0-781-72229-2

"Jjjjherman" <[email hidden]> wrote in message
"]news:[email hidden]...

Quoted message said:

Hi all,

My wife was just diagnosed with a Glomus Jugulare Tumor and I am not sure

if

Quoted message said:

this is the right spot to ask the question.

We have searched far and wide on the internet and found many definitions

and

Quoted message said:

even found a little (VERY LITTLE) information in the newsgroups areas.

We live on Long Island and of course very few doctors have even heard of

this

Quoted message said:

tumor. Thank god there are docs in Manhattan that deal with this. We currently have an appointment
with Dr. Linstrom (sp?) scheduled at NY Eye

and

Quoted message said:

Ear. I also saw there is a group at NYU that deals with Glomus Tumors--obviously both are very
reputable.

Does anybody have a recommendation on any of these doctors or current

treatment

Quoted message said:

preferences (we have seen everything from surgery to radiosurgery) but we

won't

Quoted message said:

know much until we speak with a doctor that has actually dealt with this

type

Quoted message said:

of tumors.

As always with a tumor we are scared, but glad to hear they are generally benign, however, we are
noticing there could be side effects to the

surgery or

Quoted message said:

leaving the tumor (of course too much information is concerning us at this point and we have not
even had the appointment yet.)

We would love to hear from somebody who has been through this and can give

us

Quoted message said:

some guidance.

Thanks in advance.

Jon

They are benign tumours ( a tiny, tiny proportion become malignant) They can, however cause damage
to the local cranial nerves and can be a big problem. If surgery is possible without significant
risk to those same nerves, that is the best treatment and is curative. If surgery is risky, the best
treatment is radiotherapy. Good conventional radiotherapy is every bit as good as radiosurgery,
IMRT, gamma knife and all the other expensive options.

Thank you all for your responses, some of this information was new to us and is VERY helpful.

My wife is also concerned with "validation" of her symptoms. Much of what we have read is of tumors
in the middle ear, but she feels a lump in her glands in the front right of her neck (this might be
related to location of the tumor.) She also has many of the symptoms we have read about (tinnitus,
facial tingling, vertigo,) has anyone heard of symptoms such as blurry vision, hair loss,
"exhaustion," and intense neck pain? She is also experiencing many of the ones I just listed.

Any responses are appreciated.

Jjjjherman said:

Thank you all for your responses, some of this information was new to us and is VERY helpful.

My wife is also concerned with "validation" of her symptoms. Much of what we have read is of
tumors in the middle ear, but she feels a lump in her glands in the front right of her neck
(this might be related to location of the tumor.) She also has many of the symptoms we have
read about (tinnitus, facial tingling, vertigo,) has anyone heard of symptoms such as blurry
vision, hair loss, "exhaustion," and intense neck pain? She is also experiencing many of the
ones I just listed.

Any responses are appreciated.

Anytime that I see hair loss and the front of her neck (involved), I think thyroid. (and thyroid is
part of the endocrine system along with pituitary).

Lance posted that "Sometimes they are endocrine active". (which might be a medical pitfall, in my
non-doctor opinion)

my source emedicine.comtopic309.htmOpen ↗ False Positives/Negatives: Hypervascular
lymphadenopathy may result in false-positive findings, which can be seen in a variety of disorders
such as metastatic papillary carcinoma of the thyroid gland. In particular, MRI findings can be
confusing if T2-weighted images show a salt-and-pepper pattern. In such instances, the location is a
key finding.

As with CT imaging, the lack of sufficient contrast enhancement can be troublesome and may result in
false-negative findings. In this case, glomus tumors can mimic schwannomas, neurofibromas, or
nonenhancing lymphadenopathies if an insufficient amount of contrast material is administered.
Potentially, small vascular tumors can be missed if they are not clearly distinguishable from the
adjacent vascular structures.[]

Is it possible for you to ask to see a head and neck specialist? I am not a doctor and do not want
to cause you more stress nor incur more medical expenses, but in light of the above, I would sure
want a specialist in thyroid cancers to have a good look also. Other imaging tests, with special
contrast are required for thyroid. If I'm wrong, I'd rather err on the side of caution.

Maybe after all, it's a simple matter of putting her on thyroid hormone. The thyroid specialist
would be able to tell you more about that, if applicable.

J - not a doctor (so watch for other replies)