Glomus JugulareTumor

Cancer
1

I was diagnosed with a left glomus jugulare tumor in 1996. At that time, surgery was not an option. The tumor was too deep. It started at my jugular bulb and grew toward my brain stem, rather than up into my ear canal. It was treated with radiation. My most recent MRI, July 2007, indicates it is probably growing again. There is some question because my MRI center recently got a new magnet. It is unknown whether the tumor is growing, or if it is just a better image.

I see a surgeon next week. In anticipation of that appointment, I searched the web for information.

Imagine my amazement at finding so much information! And people who actually have this same tumor. I looked for others in 1996 and a time or two since then, with no luck.

I have mild to sever frequent headaches. I lost some hearing in both ears and have a real hard time with tinnitus. Hearing aids help mask the tinnitus, as well as improve my hearing. I am off balance and dizzy every day and have lost my balance, falling to the floor twice in the last month. I walk with a cane but was not using it both times I fell.

I feel very blessed that the tumor is not maglignant and unlikely to become so. I would love feedback from others who have had their tumor for ten plus years...those who were unable to have surgery...and others with experience of this very unusual tumor.

Thanks, Paula from the middle of the USA

2

hello paula

just had my left sided glomus tumour removed 1 month ago,i found out about it in feb but had been having vertigo tinitus and balance problems for over 2 years, the tumour was embolised first by a radiologist which basucally cut off the blood supply to it and i had my surgery 2 days later. the operation took 7 hours and i recovered very well and it was not as bad an experience as i expected the surgeon anaethetist and nurses were amazing, i have a magnificent scar but it will be hidden mostly by my hair and it is healing well. my ear is still packed and my tinitus is still there but they warned me that it may never resolve but that is a small price to pay for good health i still have my smile and my voice although still hoarse is getting stronger every day and my balance is better. good luck to you dnt be scared u will get through this .medicine is so amazing and these head and neck surgeons are so skilled.

with best wishes cc

3

Hi all, I had a Glomus Jugulare removed in January 1999. I was only 18 years old at the time so as u can imagine it was a very scary experience. These tumors are very rare but even rare in my profile. I'll give you a brief history of my case and maybe it can help you. In July 1998 i became hoarse and gradually became worse, I just put it down to shouting too much. but after a few visit to my GP I was sent to the local ENT clinic here in Dublin, Ireland. They were completely puzzled and called me back for tests over the next few months. In the interim period i got like a buzzing in my right ear (which i now know is tinnitus), when i went back to the hospital for further tests i told this to the nurse who quickly organized a hearing test. I found out that my hearing was almost gone in my right ear. I was rushed to another major hospital for a MRI. The initial diagnose was of an acoustic neroma but later followed that it was a Glomus Jugulare. I had surgery on Jan 19 1999 by a great team of ENT and neurosurgeons. It was a massive operation 14.5hrs a week in ICU week in HDU and 4 weeks admitted. I did not eat for 5 weeks I was on a tube with pretty serve palsy. I have recovered pretty well you would hardly notice anything now unless i pointed it out. The only thing that i have lost is my hearing on the right side which is a small price to pay. I go for regular check-ups and scans. In 2005 there was some growth happening again so my consultant started me on this drug sandostatin Lar 20 mg which is to slow the growth in my 2006 scan it had slowed it down but in my 2007 scan it had grown again. I was wondering if there is anyone out there in a similar situation or has any further knowledge that we could share. It is so difficult to get information about this rare tumor.

You can contact me anytime.

pakelly@iol.ie

4

I had 28 sessions of radiation treatment to my glomus jugulare tumour in September 2013. Part of the tumour is located at the base of my skull and part is pressing my left vocal cord nerve and muscle. Back in early 2008 I kept losing my voice. My GP indicated it was laryngitis. Five months had passed he still indicated as laryngitis. He sent me to an ENT. The ENT sent me to have an CT scan where nothing showed up. The ENT diagonse was I had left vocal cord paralysis. At that time I had swallowing disorder and tinnitus on my left side of my head. 

Fast forward to early 2013. My hoarsness, swallowing and tinnitus was getting worse.  My GP sent me to another ENT and I had another CT scan. This time a shadow was located at the base of the skull. Later a MRI confirmed it was a glomus jugulare tumour.

A team of brain surgeons and oncologists had decided radiation treatment was the best for me. After the radiation treatment I was on steroid twice to shrnk the tumour. I had so many of side effects during and after the radiation and steriod treatment.

Here are some of my side effects:

1. Left side back of tongue feels differently.

2. Left ear hearing problem comes and goes.

    three tone tinnitus very loud ringing 24/7. Extremely loud and is unbearable.

3. Nerve pain comes and goes behind  and inside the left ear.

4. Short term dizziness and headaches all the time. 

5. Migraine aura. I never have headaches before until now. 

6. Short term memory loss is getting worse. Unable to think clear and             

reaction is slow. Lack of concentration. Seldom drive lone in the car.

7. Easily tired, fatigue. Got up in the morning. two hours later tired already.

8. Balancing problem. Can only walk at a slow pace.

    Have to lean against the wall when putting on my pants and shoes.

    Be cautious when taking shower.

9. Joint pain. Lack of energy.

10. Speech problem. Worse than before. Speak in a soft hoarseness voice

     only, inability to speak loudly and painful when speak loudly. Evening is           

     the worse. Problem when on the phone. People on the other end can hardly

     understand what I am saying.

11. Swallowing is worse than before. Difficult to swallow food like toast,

      muffin and cake when it turns into batter inside the mouth and is hard to

      swallow. Other food like steak and fries.

12. Sleeping problem.

I am schedule to have a MRI every nine months. My next MRI is some time this month.So far I have seen a speech pathologist to help me on my speech and swallowing where she is unable to give me any help on my problem. I have been to a neurologist to access my balancing problem which she diagonse that nothing wrong with my brain. The balncing problem is from depression which I am not sure. I don't have any depression but I have 28 sessions of radiation treatment to my brain and neck. I have not work for two years now. I am afraid the tumour may grow back one day. My right ear keep hearing my heart plusing which is the same symptoms that I have before for my left side when developing the tumour.

5

What you described is what I am going thru. I had Gamma Knife . I now have TN. Which is not fun. My PC does not know much about this kind of tumor. My was found in 2013 also. Can you answer some questions for me please. Do you ever feel like you donot go to bed right then you are going to pass out where ever you are? If you tilt you head back you get the weirdos feeling that you can not really describe it. I am on disability right now and hate it. I feel like I am not really living a life but going thru the motions. Is this normal. It seems like no one can answer any of my questions. I will aperate any Imfo you can give me.