I have new and astonishing news. When discussing this issue with my doctor he stated:
“Our medical group has decided that we will not respond to any phone calls or fill out any paperwork for any long term disability patients.”
They are the only show in our small town. I’m now faced with my wife driving us either 40 miles or 100 miles (two closest options) for PCP coverage. My first question in calling is about LTD paperwork and I’m shocked, but I have yet to find a practice that will handle LTD paperwork.
So, today in my Neurologist visit (40 miles), we asked the same question. He told us that he has never done such paperwork and never will – he’s been in practice for 30 years!
If anyone knows of doctors anywhere in New Mexico, USA the actually give a flip about the patient please drop us a line, we are desperate.
I have read all of the above…I to am suffering from dizziness/imbalance…i’m house bound for years…been to approx.20 doctors , finally got an app’t at Dallas southwestern university at the ENT doctor…insist its an inter ear nerve problem (vestibular migraine) and the nerve in my ears are not insinc with each other when sending signals to my brain which causes the dizziness/imbalance… I.have an extensive ear test on 1/30 to verify this…if it is, I would have the option of them cutting the nerve inside my ear , and hopefully eliminate the dizziness and the imbalance…i need something to be done…but I feel Doctors are not fully trained in this area, very difficult problem and so many suffer with this problem…next, and my last resort is… I am willing to try alittle Marijuana,I read where it does help people that have Vestibular Migraines…it is ashame to resort to that but REALLY//// will advise after 1/20/18…of the findings…mw
Dusty, so sorry you are having such a desperate time of it!
Is this what you are being advised?! That should be the absolute last resort, if that. You cannot reverse that as you know. I’ve read cases where dizziness took a decade to resolve but it did improve. I hope you’ve tried all the medication? Including diuretics? Being housebound will also impact your compensation rate. Neurologists rightly tell dizzy patients to expose themselves to symptoms despite the discomfort in order to speed up adjustment. So I would really try to get out and try and break through the discomfort before considering anything more drastic? Apologies if you’ve tried all these things with no success but you certainly should exhaust all non-surgical options. Were those 20 doctors ALL specialists?
I would not perform that procedure, yet… why, read on.
By definition a vestibular migraine is a diagnosis of exclusion in which everything else has been eliminated (ICHD 1.6.3). It cannot be cured. All medications for it are prophylactic. It is believed by some that the balance function may be disrupted in the brain for VM patients.
If the nerves in your ears are “not balanced” you should look for neuromas or lesions on the nerve. That is, you more likely have a form of vestibular neuropathy. See Vestibular Nerve Section for a discussion about the Vestibular Nerve Section (VNS) procedure.
In nearly all cases gentamicin should be tried first.
You may indeed have (1) Vestibular Neuropathy caused be lesion or neuroma or (2) Intractable Meniere’s Disease. Generally these are the two situations for which a VNS might be considered, but after ruling out gentamicin.
Finally, a doctor that calls a nerve imbalance in your ears Vestibular Migraine is mixing his diagnoses, in my opinion, of course.
Let me state that I am not a Doctor and all of the above is my opinion after reading many published research papers. I do have direct access to a world class research library and I am a researcher in another field; however, I am not in any respect Saha (Barrow), Fife (Barrow), Hain (Northwestern University), and about 40 others. I do consider myself more knowledgeable on VMs than the PCPs and Neurologists I have encountered except of course those 40+ above.
Why do I say this? I want you to take what I have stated and research the information and challenge your doctors. If they don’t understand possible treatments and that VM is a diagnosis of exclusion keep looking.
My current neuro in Santa Fe, NM, US has demonstrated he has a little knowledge with meds all mixed up and dosing all over the board. He has never taken a history from me and refuses to listen or consider any other information - He thinks he is a super star with VM and that makes him dangerous. As a result we are flying back to Phoenix to visit Barrow which does specialize in VM.
I agree with everything James and mk1 have said. If i were you I will be gobbling down VM meds a new one every month and keep the ones that even made a little positive dent to my dizzyness. In the end if you have a cocktail of 3 or more drugs which can leave you 50% better then i would forgo VNS.
If you have migraine what makes you think you will compenate fully after having a VNS ? Migraineurs rarely compensate fully and i would argue most VM folks have a weak vestibular-brain combo and a VNS is going to a severe assualt to this combo.
Also once done this procedure cannot be undone. I would leave no stone unturned before doing anything radical.
Let’s be careful with that statement and how that is interpreted. Do we need it to be cured? What if it gets better of its own accord?
We don’t know the exact reason why the drugs help. It may not be ‘cured’, but it may well spontaneously improve (and sometimes with the help of drugs to support compensation) … or perhaps some of the drugs actually do address the root cause (the variety of drugs and their action on the body is varied, so they are all doing something different - perhaps one or two of them are addressing the root cause?).
In any case there is a lot of anecdotal evidence that people improve, albeit over a long period. I was diagnosed with MAV at one point and I’ve definitely improved and live completely without medication now. I do feel symptoms, but they are nothing like I used to feel. I am confident of further improvement as I’ve recognised two years of improvement - why wouldn’t it continue to get better?
Oh gosh, I cannot agree with that statement. Killing the ear with Gentamicin is almost as bad as cutting the nerve. The latest official UK opinion is that Gentamicin can cause a patient to have permanent imbalance.:
And in any case Gentamicin is used to minimise the ferocity of the episodic vertigo attacks? - I don’t believe it is prescribed to resolve chronic daily imbalance and dizziness? - I understand it can make that worse! (watch the above video) Most dizziness is not due to Menieres. I don’t believe Gentamicin is ever prescribed for chronic dizziness?
And what if your issue is bi-lateral?
I think the bottom line is DO NOT DO ANYTHING OR LET ANYONE DO ANYTHING WHICH IS DESTRUCTIVE before COMPLETELY exhausting the conservative treatment options and going hell for leather on rehabilitation e.g. VRT or simply normal daily activity. And by “COMPLETELY exhaustive” I mean at the very least, spend 5-10 years of your life going for it trying all the medication, making sure you get out of the house and expose your brain to the challenges.
Oh and seek another opinion if anyone recommends a destructive treatment.
Dusty…I need help.at this point …I can’t live like this…I have no life…I feel so helpless…i’m skeptical yes, but I’m desperate…and will try anything at this point…I will wait till after my appointment on the 30th and see what they say. but …I’ve heard it all before…but will wait…wish to thank you for listening to me. and will read the sites in your reply…where are u located?? marge
Hang in there and yes, do please not run into things quickly.
I had life changing, anxiety and depression inducing symptoms two years ago and things have got so much better. I’ve heard other stories where people have taken years but things have improved. Don’t lose hope and do try to push through it and get out of the house for walks during the daylight. First 30 mins may be uncomfortable but I find long walks end up relatively comfortable whatever your starting position. Appreciate everyone is different but its worth a try?
Thanks for your reply…its been over 9 years. .been to over 20 doctors…taken all med prescribed … been thru all the test. all…brain MRI’s all come back unremarkable…all the doctors say its an inner ear problem with the nerves in my ears that are not on the same wave response that goes to the brain…I try to go out even if its for alittle but I need to have someone with me…i’m afraid i’ll fall… I’ve had 4 months of therapy and it did not help…they all say the same thing about the ears…I’ve read the sites you emailed me…I’ve read up on Dr timothy Hains,Dr. Steven Rouch and Dr Paiesol… I’ve done a lot of research, all goes back to the inner ear…I will wait till the 30th…appreciate all your help… marge
Marge, if you’re in the US you can most likely get in to see Dr. Hain. I called his office in November, 2017, and his first available appointment for a new patient was in February, 2018.
Before he agrees to see a patient from out of town, he requires them to fill out an online questionnaire and then he reviews it to determine whether he thinks he’d be able to help them.
So you could do that now and then you’d probably be able to schedule something around April, 2018.
Thanks for your concern…I have checked him out and he is knowledgeable …I have an appointment in Dallas at the University at S.W.Medical Hospital…its like the Mayo Clinic in Boston. .but I will call Dr. Hain’s to request an appointment in the mean time. I just wish there were meds to take,the ones I was given…didn’t do anything…again many thanks…will keep you posted of the outcome on the 1/30…marge…
If you call Dr. Hain and fill out his online questionnaire, here are a couple of tips to help you fill it out (it’s VERY long and detailed):
– Have a list of all of the medications and supplements that you are taking; it will ask you to list them. They also ask for any medications you’ve taken in the past 5 years that you’re no longer taking (I tried but am not sure I got all of those).
– Have your test results with you - they ask if you’ve had tests such as the ENG and for each test whether the result was normal or abnormal
– There are several places where you can answer in a text box of up to a certain number of characters. I think one of them was a general question like “describe your symptoms” or something similar. I used every character I was allowed to write a detailed description of my history.
Here is the paper version of his questionnaire. The online version is MUCH more detailed and very easy to fill out but this one will give you an idea of the types of questions: http://dizzy-doc.com/resource/dizzy_quest.pdf