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Does anyone with chiari have a loud humming sound in your head?

The humming can change in intensity but it’s always there. This is in addition to my constant chiari pain which usually feels like being hit in back of head with a baseball bat. But can also feel like a spear or a boulder going through my head. Also having balance, coordination, inability,to concentrate, nausea, dizziness, vertigo, reading makes me sick. Any movement can exacerbate symptoms and it’s difficult to make it through every day. Also , sometimes lose vision in one,or both eyes. These symptoms started out of the blue about nine years ago when I woke up with severe vertigo. I am sure I need surgery but doctors in my city don’t understand. I wish I knew where to go for expert help but,it’s difficult to search in this condition.
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Avatar universal
Yes all day everyday, sounds like a refrigerator
2 Comments
Have you found anything that helps to make it go away or make you be able to stand it?
Honestly I have learned to ignore it, as I am numb 24/7 365 days from the top of my head to my toes, so I have a room in the back of my head and that is where all annoying things go, if not I would be in a mental hospital. Sorry. I have been to the ent and he said my hearing is normal.
Avatar universal
I used this Bhagwan this sporadically. Vertigo is rare for me anymore, as are headaches. Look up ocular nerves, you’ll see that these run so close to jaw. I found that my TMJ issues and lack of sleep affected my vision. I feel for you that you’re in pain, and vertigo..oh so annoying! One can’t even drive with it.
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

If you let me know what area you would like to research Drs for I can try to post a list.......we have compiled a list of Drs the members here have been to, treated by and liked so it is not a complete representation of all the Drs that treat Chiari, but it is a good place to start when researching Drs....and  I say researching as this list is not a  referral nor an endorsement of those listed.

Once you let me know where you can travel to or your INS covers you I can see if we have any names for that area.....please be advised you might have to travel many of us do. AND I want to explain a difference in a NS that WILL treat Chiari and those that treat only Chiari and Chiari related conditions .....a NS will offer to do the surgery even though he may not be well experienced with the condition or the procedure for two reasons, ego and money......and most likely the outcome of the surgery may not be the best as the NS was not well informed of related conditions which can affect the outcome....where a specialist knows and will look for these related conditions and treat ALL of them....this helps lessen the possibility of a bad outcome. There is no way any Dr can know how your body will respond to this surgery, but by doing the additional testing helps the Dr understand a little more about your body as does the questions he asks during your visits.....Educate yourself on this condition and research Drs to find the best one for you.

As for your vertigo and humming sound...I had vertigo as well and for me it worsened when I turned to my left....so if I only turned to my right I was ok and could handle it until it would go away....and it does.sometimes after a few hours, sometimes a few days and a few times it was a couple weeks.....I know it is not easy, but if you adjust a little you can get through it. As for the tinnitus, or humming sound try a sound machine.....it can help drown out the other sounds....I noticed music helped me and while watching my grandson noticed while in his room with the sound machine on, my tinnitus wasn't as bad.  

Lastly I want to mention that daily activities can affect or trigger symptoms to flare, so take note of what you do and how your symptoms are to know what you may need to avoid or cut back on doing.
6 Comments
Thank you for your quick response- it’s a comfort to know someone actually understands. I am willing to travel to find a chiari expert. I live in S.C. so East Coast is a good starting place.  My vertigo started in 2009 and it is present everyday along with nausea, dizziness, abdominal pain, and the constant head pain. Reduction in pain meds is unmasking new symptoms and I feel I can’t put off finding the right help any longer. My coordination, speech are also being affected. I am so glad I came across this site and can finally communicate with people that know what I am talking about. Thanks for your time and willingness to put that list together!
I will try to list states closer to you, but there are some all along the East Coast but spread out.....from NY dow to FL.....


NORTH CAROLINA

Dr. Fuchs
Duke University
Pediatrics

Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076

MARYLAND

Dr. Fraser Henderson - Neurosurgeon (chiari and spine specialist)
Spine Team Maryland
8116 Good Luck Road, Suite 205
Lanham, MD  20706
(7830 Old Georgetown Rd. Bethesda, MD
301-654-9390


Dr Marcella Madera
Primary Location:
The Johns Hopkins Hospital
600 N. Wolfe Street
Baltimore, MD  21287
Building: Meyer
Room: 5-109
Phone: 410-955-5464
Fax: 410-502-3399
Appointment Phone: 410-550-093

Dr. Powers
Bethesda, MD

Keep in mind the lists are not a referral nor an endorsement of those listed it is just a starting point to help you research Drs that have treated Chiari....the list was compiled by the members here of Drs they have been to, treated by and liked.Not all may be true Chiari specialists.

Let me know if you want more lists from other states
Thank you so much! My sister lives in New York City so a list for that area would be greatly appreciated.
Here is the NY list-

NEW YORK

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga


· Dr. Rohit Verma
University Orthopaedic Associates at Great Neck
611 Northern Boulevard
Suite 200
Great Neck, NY 11021

Tel: (516) 723-2663
Fax: (516) 325-7190


· Dr. Sol Mora
Caremount Medical Group
600 Westage Business Ctr. Dr.
Fishkill, NY 12524

· Dr. Amit Shelat
200 Old Country Rd Suite 370
, Mineola, NY 11501
Phone:(516) 663-4525


Dr. Paolo Bolognese  MD
The Chiari Neurosurgical [email protected] NSP
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
(212)523-6720

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310


Thank you very much! You have given me a good starting point.  Will be trying to make a decision soon.
Good luck and keep us posted on the progress of finding a Dr.
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