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Doctors, Specialists, anyone, a plea for help for my sister

I doubt anther person has exactly the symptoms my wife displayed, but I offer this in case it helps.

Ever since we got married and way before that she was complaining of ringing in her ears and every doctor she had seen in Atlanta and later Kansas City, dismissed it as tinnitis: cause unknown. Turns out they were mostly clueless and not thorough enough. She could not phrase it using the right keywords but we learnt later that she should have mentioned that she heard a wooshing noise in her ear coupled with some ringing.

Long story short, it was a cerebral fistula, right next to the 7/8 nerve nucleus and the abnormal blood flow is what she was hearing. We learned all of this after she suffered a cerebral hemorrhage three years ago. A regular CT would not have shown the vascular issue unless it had significant mass effect. Only an angiogram would have.

They say that birth control pills, head trauma or even inner ear infections could have caused the initial clotting which resulted in the fistula formation.

While you are waiting for a neuro appointment, ask her if it is anything like a wooshing noise. See if you can hold a steth to her head and hear any flow noises (the interventional radiologists at UCSF suggested that as possible test). In my research following my wife's stroke, I have heard of AVMs bleed into the eye, not sure if they can cause nose bleeds or bleed into the nasal sinuses as well. Those should also end up being abnormal high speed blood flows and might register on a steth.

Any history of strokes or vascular abnormalities in the family ? Hope the hearing issues points to some issue close to the 8th nerve and guide them toward the location. See if you can also discuss getting a full (4 vessel ?) angiogram of the brain as well, the process has risks bit I don't know if there is a less invasive way of checking the vessels out.

Did they give her any steroid shots to reduce any neural inflammation ? See if you can talk to the doctors about this. Might help if it is more peripheral as opposed to central.

Also, in all these cases, I really think that tracking the best doctors you can gives you the best advantage. Your coast has the top 3 neuro facilities (as per my reading of the 2009 ratings): Johns Hopkins, Mass General Hospital and the Mayo Clinic. It will likely be painful to find an appointment there but always worth a try and time is really of the essence if it turns out to be vascular.

Also, check http://www.nhsdirect.nhs.uk/CheckSymptoms. This a UK NHS tool. Maybe it will jog her memory and she can enter more symptoms and see what it's database thinks it could be.

Check http://www.virtualtrials.com/braintumorsymptomssurvey.cfm as well and see which symptoms match.

Doing online searches and self diagnosis can end of scaring oneself lot more than warranted and without a doctor's expert checkup, might be very foolish. Keeping that in mind however, always good to get more info, sometimes you might end up jogging the doctor's memory as well when you mention you research.

Also, check out what the humidity of the room is where she is at. Winter, heaters and dry air can cause nose bleeds in some people. Get a good humidifier if needed (My limited research made me pick out an Air-O-Swiss one after my wife's nose bled last month in the bay area winter). Fixing that might simplify the diagnosis if it is unrelated to her main issue.

I sincerely hope she gets diagnosed correctly soon and gets treatment. It sounds like she is suffering terribly. I wish you the very best!
Throwing in my .02 - I see MRI mentioned a few times but have yet see a PET scan mentioned. Now that we are starting to see bleeding, I'm really concerned that we may be missing something. I'd be interested in some overlapped images.
unless she has a cancer history there is no indication or added benefit from a pet scan in this case.
Throwing in my .02 - I see MRI mentioned a few times but have yet see a PET scan mentioned. Now that we are starting to see bleeding, I'm really concerned that we may be missing something. I'd be interested in some overlapped images.

Pet scan would be inappropriate for this. We are not looking for a pet but a bug.
She is going to the Doctor tomorrow. We gained a lot of information from this forum and another so hopefully she can get pointed in the proper direction.
She is going to the Doctor tomorrow. We gained a lot of information from this forum and another so hopefully she can get pointed in the proper direction.

Any new info or is it the usual they need to schedule a zillion tests and wait for results of anything done today?
Update from my sister, Ianthe:

I saw the neurologist yesterday. He spent over an hour with me- asked lots of questions, did some testing, reviewed my chart, mri, ENG, Catscan, audiograms. He does not feel that it is Migrane associated vertigo- at least not completely because of the positional componant of the exacerbation of my symptoms. However, he put me on Topamax.. 25 mg slowly increasing to 75 mg over 3 week period. He also diagnosed left hyperreflexia saying there was some asymetry in my reflexes. He ordered an MRI of the cervical spine which will happen on Thursday. I am going back to him in 7 weeks. He seemed extremely intelligent and asked me things I never thought of telling him as far as my history.

I asked him what meds I should be taking because because at this point, I am taking meds perscribed by several different doctors. He told me that I would need to "doctor myself". He said if I stopped them for a couple days and didnt feel any different, then stop taking them. I am weaning myself from the scolpalomine patch by cutting it.. i am now on half a patch. I am feeling some withdrawl effects.. a bit clammy and agitated and hyper.

I also am supposed to start vestibular rehab therapy ... but dont really understand the purpose of this. I dont have many balance issues with my eyes open. I do fine unless I get up in the morning too fast, or if I stand up and have my eyes closed at any time I fall over. I also can not walk heal to toe in a straight path without falling. Does anyone know what vestibular rehab is all about and is this worth anything?
I manage a large diagnostic center in Houston and have seen several people with these symptoms. She needs 2 tests. The first test is MRI of the IAC or the internal auditory canal to rule out acoustic neuroma. The second is a MRA (magnetic resonance angiogram) of the brain or Circle of Willis to see the vasculature of the brain and to rule out ischemic disease. Make sure that the MRI machine is a high field, closed magnet and atleast 1.5Tesla strength or tumors can be missed. I can assure you a good radiologist can pick up some etiology by reviewing these tests.

Does anyone have any information on the purpose, usefulness, effectiveness or reason for vestibular rehabilatation therapy. It was recommended for me to participate but I have no daytime balance issues. Once I am up and about I am just fine.

So many people have responded and shown so much interest in my condition and I have truely found strength in your responces and suggestions and it has really kept me going and looking for answers. I have posted alot of information about my condition. But I am not sure that I have specifically said this: I have vertigo every single day and have for 3 months. Right now it is 5pm and I am not dizzy at all. I am exhausted from not sleeping well. I have been up since 4am. I will make dinner, give kids baths, and help with homework, put them to bed. Then I will prop my pillows up and sleep sitting almost 90 degrees up with my head straight forward. I sometimes have slight vertigo while I am trying to fall asleep but some nights I dont. At some point during the night I slip down so I am not sitting straigh up and the movement begins. It can feel like I am falling in a hole, or that I am riding a rough river on a raft, or in a low cabin on a cruise ship, or if my head gets turned at any point and is not straight, then the vertigo becomes sideways, typically about 45 degrees sometimes repeating, sometimes not. I can sometime sleep through this as it has been 3 months like this but at some point during the night it builds to a point that it wakes me.. like my stomach comes up into my throat as if I am coming down a roller coaster and not stopping. This always wakes me and has every single morning for 3 months. Some nights it is 2 am, some times 3, 4, 5, or 6. Depends. when I open my eyes, If there is any visual movement, it is usually minor, and does not match the feeling I am having

I sit up for a few minutes and open my eyes. If I get up quickly I stumble around the house unable to catch my balance for 10 minutes. Once I am up for a while, I start feeling better.
After I am up and moving around for a couple hours, I feel pretty normal, unless I have had a terrible night of vertigo or am extremely exhausted. On those days, I have some difficulty where I feel movement when there is none. Otherwise, If I have been able to get a good chunk of sleep, I get through my day, get kids ready, take them to school and daycare, go to work.. and the whole things starts over again.

The thing that gets me is that it FEELS soo much worse with my eyes closed. and when I open them, the visual vertigo, if any is usually a very slight up and down or side to side, sometimes round like a clock, or away and back.

I am not sure I put all that detail into my initial description. It is probably too much, but maybe it will spark something....... so many of you have been so helpful.

Can you post again.. or specfically ask this person (na2) for more info on TMJD.What is their back ground?

As I have ruled out other causes, this is looking more like a possibility. My specific questions are, who diagnoses this and can it still be TMJD if there is no specific jaw pain when chewing? I get clicking, and ear pain/ringing/fullness, hearing loss is unchanging, continued vertigo.. but it is not the spinning kind (although it initially started as spinning that lasted only a couple days with each onset), headaches, neck and shoulder pain, and recently changes in my vision. I also have problems with my eustacian tubes even though there may not be fluid. I think they get stuck closed and open at times. From what i am reading this can all be caused by TMJD. I had dental work prior to each initial attack.
Steve any updates?
Happy Chinese New Year. I hope your sister has better news this year than last year.
Throwing in my .02 - I see MRI mentioned a few times but have yet see a PET scan mentioned. Now that we are starting to see bleeding, I'm really concerned that we may be missing something. I'd be interested in some overlapped images.

I would look into doing a PET/MRI imaging. It is very new technology just FDA approved in June. It is very good for brain imaging. Since it is new technology many hospitals will not have this technology.

Steve, my brother-in-law Larry Malerba is a homoepathic D.O. Very well-known in his field (has a blog on huffingtonpost.com and has a book out) and has been known to help when conventional wisdom fails. Might be worth a try - his office is in Guilderland, about 20 min from the capitol. http://www.docmalerba.com

Along the same lines, have a DO who does cranial get their hands on your head and see what they find.
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Cure Vertigo and Meniere's Disease

It could be a different type of Lyme bacterium, I think there are specific tests for each kind.
Mycoplasma - Prof Garth Nicolson http://video.google.com/videoplay?docid=5412136843859172148

Also using antibiotics could be killing good bacteria as suggested by this video, eating alkaline foods may help.

If a kind of infection could be the cause, my uneducated guess would be to rub a few drops of clove oil around the ear and have a bit of apple cider vinegar everyday.
I hope she is okay now.
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