Comments on: An Unexpected Photography Project!

By: Sue

Sue — Tue, 31 Jan 2012 19:14:25 +0000

Claire,
Thanks for your response. I met with my Doctor last week. They are finding that after embolization, the longer time between surgery is better. Probably depending on your tumor. So the embolization will be Thurs Feb 16 and the surgery is Tues Feb 21. I am scared but grateful to be able to have it removed.
I have a lot of friends praying for me. I hope your pain goes away soon. It takes nerves a little while to heal.
Thanks,
Sue

By: Claire

Claire — Tue, 31 Jan 2012 17:28:12 +0000

Sue–Try to get your surgeon and neuroradiologist to get together their schedules so you can stay in the hospital after the embolization and have surgery next day. It would be easier on you. There were no noises in my head after either procedures. You will still hear your pulse, but not anywhere near where you are hearing it now. Once the gel they pack your ear with is gone, the heart beat won’t be discernable. You must think positive and keep thinking positive. What could have happened if they had not detected this is too awful to think about. So, consider yourself “lucky”. I know, the whole ordeal is disgusting, but you will get through it. Good luck.
Claire

By: Claire

Claire — Thu, 26 Jan 2012 02:09:20 +0000

I know what you mean about the heartbeat. It was wicked. I had always suffered from headaches, had one that was constant from August until November 29 when I had my surgery. The headache was gone when I came out of anesthesia and though I have had a couple of weather related headaches since then, I have had no headaches related to the surgery. I do have the awful pain in my arm. I was able to come down to a warmer climate and am now working it out in the water for a couple of hours a day. It was explained to me that this pain will not diminish because of the therapy and exercise. But the exercise will keep my shoulder from freezing when the nerve decides to get better. I had some neurological pain in my right hand until last week, but then I woke up and it was gone. I am hoping that will happen with my neck and shoulder. I had a medical massage today and that helped the most. My face and ear are weird. I am afraid to wear a dangling earring for fear of it getting caught on something and ripping it out. But that is all negligible stuff. My eye blinks, my smile smiles, my shoulders shrug. My ENT neurologist is still optimistic that my hearing will improve once everything from the membrane back into the jugular dissolves and dries up. I can live with the muffled right ear. I am happy to have gotten to this monster while I was still in control. Good luck and check back.

By: Sue

Sue — Mon, 23 Jan 2012 15:06:54 +0000

Hi All,
I was diagnosed with Glomus Jugulare tumor ( Left side) in August, 2011. I am schedule to have surgery on Feb 21, 2012. The embolization is on Feb 16. I have cried after reading all of your posts. However, it is so encouraging to hear that most of you are doing well! I have a couple of questions! After the embolization, do you have strange sounds in your head? and do you go home right afterwards? I have a constant heart beating in my head and a ringing sound. I was a heart nurse….so I feel like I forgot to take my stethoscope out of my ear.
I am thankful to have found this blog and all of you.
Kindly,
Sue

By: Chaitanya

Chaitanya — Sat, 21 Jan 2012 07:55:28 +0000

Hi All,
It’s 9th day after my surgery. My tumor was partially removed so as to avoid any damage to my facial nerve. I am gradually improving. I have a stiff neck and a little weakness in my right shoulder, difficulties while chewing anything hard from right side. My stitches will be removed on 25th. Rest all looks ok.

By: carol guthrie

carol guthrie — Mon, 16 Jan 2012 02:03:18 +0000

Hi everyone. My surgery is now 3 months old. I don’t think I’ve previously shared that I am 66 years. Drs. said because of my good h ealth and state of mind they felt that I would recover completely. Well I’d say they were right for the most part. My biggest problem is the disgusting pain in my right shoulder. I now go to physical therapy twice a week. I am an avid exerciser and had been long before the diagnosis of the tumor. I feel truly blessed in the way I have been able to accept the new “norm” lifestyle. I can’t hear in my right ear and was told it is permanent. I was told that it is not deafness therefore a devise called a BaHa can be installed later and will restore hearing. I have no problems swallowing, no hoarseness in my voice. I do still have slight numbness in my face. Some mornings I feel such a tingling there that it really frightens me but once I’m up and active it subsides. The blocked ear itches a lot inside and I can’t scratch it. I am scheduled for cyberknife radiation to shrink or prevent continuous growth of the portion of the tumor that is in my brain and was too dangerous to remove. Anyone who has had these treatments let me know how that went. This tumor has no respect for age. Be blessed and as someone else said thank God they are not cancerous. The scar is hidden by my hair and the one on the neck is not noticeable unless I point it out. That was my greatess fear that all of these years with a “perfect” face and neck I would be scarred. LOL.

By: Claire

Claire — Sun, 15 Jan 2012 18:04:19 +0000

Romel, I too live in Brooklyn NY. If you want another opinion, call Dr. Gady Har-El at Lenox Hill. He and Dr. Darius Kohan did my surgery in November and they are geniuses. You need to go to doctors who know what they are doing and not have to travel so much. You will be tired but in good hands.

By: Romel

Romel — Sat, 14 Jan 2012 01:22:18 +0000

I read all comments this site. I see everybody is going thru with Glomus Jugulrare. I have been through hell the past year. I went different doctors for ENT. Until my co-worker and friend asked to see specialists. They told me I have Tumor not Cancer. I hate word “C”. I did Biopsy last November and went to Therapy. I am gonna have surgery Jan 24th. I live in Brooklyn, NY. My specialist send me to Upstate NY which One hour from my house…..

By: Peggy

Peggy — Sat, 14 Jan 2012 00:44:19 +0000

Mallorie please call the House ear clinic in Los Angeles. They are known to be experts in this field and……. They offer a free consultation. They will talk with you and then will ask to see your Moms films and stuff. They were so helpful and confirmed everything my doctor in my hometown said. I would highly recommend you contact them before you do nothing surgery wise. God bless your mom. http://www.houseearclinic.com/

By: Lori

Lori — Fri, 13 Jan 2012 21:48:54 +0000

Mallorie,

I am 44 year old woman and also could not have surgery. I had gamma knife radiation in August to just stop the tumor from growing. My symptoms are quite similiar to moms. my youngest is 10. I have nerve damage that affects my head, my tongue, my shoulder/arm, my face, my ear, my vocal cord, severe dysophasia, phrenic nerve damage. Different days different things. Some days better than others. Very hard to deal with. My faith in the Lord Jesus Christ and my awesome family get me through. Can’t work now as things are so drastic…Sweetie just you caring is special for mom. Encouragement works well. I’m so sorry you have to watch mom go through this and endure this with the family. Positive confessions are most certainly needed )))