Having headaches again!

Hi. Sorry for not psoting anything. It has been difficult! I feel like crap, I am trying to get a new doctor; a Neurologist. I have some names from some of the Neuro Surgeons at my spouse's hospital. I had to call my Primary Care, explain everything, and ask to be referred to a certain neurologist. The doctor that is supposedly taking care of me at the headache clinic, is even more useless!! I have been calling him, telling him that I am still in pain. He hasn't even bothered to call me back!! I called him to ask him to refer me to the neurologist that I want to see, and his response was that he didn't make referrals. So, I called my primary care, and explained EVERYTHING. I am hoping that she will just make the referral. That is about it.
 
In most health insurance programs, the primary care physician must be the one to make the referral- otherwise the insurance will not cover it. This may the reason that yur headache doc did not want to do it.

It is an extremely stupid rule-stupid for both doctor and patient.

The Boston area, with it's large number of Harvard Medical School-affiliated hospitals, is traditionally VEREY strong in Neurology--and is probably the best city in the world for neurological care. However, headaches are a distinct specialty in neurology, and not that many folks specialize in the treatments.
Again, PM me if you want more info.

good luck,
shaldag
 
Hi Shaldag!! Ed Shempp told me I should talk to you. My memory is affected by this. But that was back when they told me I had a stroke, which I had not. I have Pseudotumor Cerebri. I got some recommedations from Dr. Eric Woodard & Dr. Chim (I can not spell his last name.) On Chima's recommendation, I have asked to be referred to Dr. William Mullally. THANK YOU!! I will keep that in mind Shaldag. Thank you kindly for your time!!!
 
I have been remiss in posting things about this. Mostly because I am sick of talking about it.......I have STILL been having headaches, and have been in constant pain (AND all the other symptoms I have talked about!!). Anyway, somewhere in here, I got an appointment with a Neurologist in Boston. The appointment was initially Jan. 8th. I called this past Monday, to see if there was anyway to get an earlier appointment. There wasn't. BUT, I asked if I could be put on a list in case there are any cancellations. Today, I get a call and they wanted to know if I can come in Monday!!! Yes, Monday Nov. 20th!!
 
TKC--I urge you to PM me your telephone number ASAP.
We really should talk about this.
 
PM sent. I just saw this!!! I would be happy to talk to you about this. THANK YOU!!!
 
The Neurologist appointment went well. He doesn't think it is Pseudotumor Cerebri.He is sending me to see a Neuro-Opthamologist that is in his office; I see him Wednesday. Also, he said to stop all caffiene. OK. Kirby and I are going up to Boston with Carole tonight. The hotel that she stays at allows pets!! The hotel has a shuttle that will take me for free to Brigham & Women's Hospital for mu appointment. So, that is the plan. We are taking it one step at a time. I DID take my MRI with me, but he wasn't able to view it today. I don't remember why. Something about the machine. Anyway, I left it with him. I feel very comfortable with this doctor. I was also VERY impressed by the hospital!! Unlike Faulkner, which looks like a dump, compared to B & W. Yesterday was a VERY busy day, as we had to go home, get sruff for me packed, and pack stuff for the dog; then turn around and drive back to Boston!! The spousal unit was quite pooped from doing all that drivinng. I will let you know what happens with the doctor visit on Wednesday.
 
It's good to hear you're going somewhere with this. It must be frustrating dealing with people who are essentially leaving you sitting in a corner.
 
Yes, it very frustrating Esav Benyamin.

I am happy to have a doctor who is doing things. I feel hopeful. THANK YOU all for your support!!
 
You need to find out if these headaches are due to pseudotumor cerebri. If this is the case you need to be properly treated or you can suffer permanent decrease or loss of vision. In pseudotumor cerebri the intracranial pressure is increased for unknown reasons. This stretches the meninges giving rise to headaches and can compress the optic nerves. Medical treatment as you mention is with diamox which decreases the production of cerebrospinal fluid. If this is not sufficient you are looking at surgery. Either a ventriculoperitoneal shunt designed to divert CSF into your body cavity or optic nerve sheath fenestration which lets fluid leak out of the optic nerve. If you are seeing a neuro-ophthalmologist at the Brigham it is probably Bienfang. Make sure he is going to take a visual field (either Humphrey or Goldmann). If you need a second opinion Simmons Lessell or Joe Rizzo at MEEI are excellent or Tom Hedges at Tufts.

If you have questions pm me.
 
Ok--
are you a member of the Neuro community in Boston?
Or affiliated with one of the hospitals? I ask because I am, and it is nice to
know that there is more tthan one of us on these forums.

If you want, you can PM me.....
 
It's safe to enable email here. The system will send you email without revealing your address to the sender. (You can use a yahoo or gmail address, too, but it's not necessary.) Go to your User Control Panel, Edit Options, check the box for Receive Email from Other Members, go to the bottom of the page and click Save Changes.
 
Cougar Allen said:
It's safe to enable email here. The system will send you email without revealing your address to the sender. (You can use a yahoo or gmail address, too, but it's not necessary.) Go to your User Control Panel, Edit Options, check the box for Receive Email from Other Members, go to the bottom of the page and click Save Changes.
Click to expand...

Thanks, aquina
 
aquina said:
You need to find out if these headaches are due to pseudotumor cerebri. If this is the case you need to be properly treated or you can suffer permanent decrease or loss of vision. In pseudotumor cerebri the intracranial pressure is increased for unknown reasons. This stretches the meninges giving rise to headaches and can compress the optic nerves. Medical treatment as you mention is with diamox which decreases the production of cerebrospinal fluid. If this is not sufficient you are looking at surgery. Either a ventriculoperitoneal shunt designed to divert CSF into your body cavity or optic nerve sheath fenestration which lets fluid leak out of the optic nerve. If you are seeing a neuro-ophthalmologist at the Brigham it is probably Bienfang. Make sure he is going to take a visual field (either Humphrey or Goldmann). If you need a second opinion Simmons Lessell or Joe Rizzo at MEEI are excellent or Tom Hedges at Tufts.

If you have questions pm me.
Click to expand...

Thank you! My Neurologist does not think it is Pseudotumor Cerebri. I am currently on Diamox and hydrochlrothiazide. But, it isn't working anymore. But, he is sending me to a Neuro-Opthamologist to have my eyes checked out. I was at first told it was PTC. Yes, I am seeing Dr. Bienfang. I really appreciate your help and support too aquina. I thank everyone for their support. Shaldag, I will call you later, when I get back from doctors.
 
How much fluid are you getting? I have a number of ways to relieve headache.
 
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