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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Neuro & O2 in New Jersey
        
(Message started by: marlinsfan on Mar 31^st, 2008, 2:44pm)

Title: Neuro & O2 in New Jersey
Post by marlinsfan on Mar 31^st, 2008, 2:44pm

I searched the OUCH site and did not find a neuro close to my new home in New Providence, NJ. Anyobody know a good neuro here? Summit Medical Group (1 mile from my house) has 3 neuros (Eric Cohen, Lisa Coohil, Komal Naik) Anybody know them? I called the facility to find out if they were CH knowledgeable but didn't get very far.

Also, where do you get O2 in this area?

Been shadowing for 2 days. My cycles typically start in April, though I've skipped the last 2 years. I think I best be getting ready :-/

Thanks.

Title: Re: Neuro & O2 in New Jersey
Post by Batch on Mar 31^st, 2008, 9:32pm

Take a look at the following link. Bob Johnson also has several posts on where to look for a good neurologist as well.

This link should give you a few places to check out for oxygen supplies and equipment:
http://local.yahoo.com/results?stx=Medical+Oxygen&csz=Summit%2C+NJ&ycatfilt=96937054

Take care,

V/R, Batch

Title: Re: Neuro & O2 in New Jersey
Post by Lizzie2 on Apr 1^st, 2008, 4:35am

Where exactly is New Providence, NJ? North? I'll try to help best I can, but I'm more helpful with south Jersey! However, have some contacts that might be able to help if you're in northern NJ.

Take care,
Carrie :)

Title: Re: Neuro & O2 in New Jersey
Post by E-Double on Apr 1^st, 2008, 6:53am

If in Northern Jersey closer to NY, I'd check out a couple of docs in manhattan

Larry Newman or Mark Greene

on LI there is Noah Rosen formerly of Jefferson.

If you do not mind the treck for another 1/2 hour...

NECH: Dr. Sheftell in Stamford CT. WELL WORTH IT!!!
and for how many times we really see the docs it is not as important to have someone close as someone who KNOWS

Title: Re: Neuro & O2 in New Jersey
Post by Bob_Johnson on Apr 1^st, 2008, 11:30am

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: Neuro & O2 in New Jersey
Post by marlinsfan on Apr 1^st, 2008, 9:41pm

Bob, the link on #5 does not work. Says page not found. I'll call the telephone number tomorrow.

Thanks all for your help. The first O2 supplier in Batch's link is right down the street!

Carrie, I'm not sure if I'm in northern or central NJ. If it helps, I'm off I-78, about 5 or 10 miles west of the Garden State Parkway? There is a famous mall nearby, Short Hills Mall, everyone seems to know where that is ;;D

Title: Re: Neuro & O2 in New Jersey
Post by danm on Apr 15^th, 2008, 9:28am

I live in Cranford, NJ, only about 20 mins from New Providence. I have gone to Dr. Newman who has an office in St. Luke's Roosevelt Hospital in NYC. His number is 212-794-3550 . He is very knowledgable about CH but does not accept any insurance and initial visit is $450.
If you are looking for someone more local, Dr. Maria Alexianu has offices in both Summit and Westfield. She also is very knowledgable of CH and is willing to listen to anything you may have heard on these boards or from a fellow CH'er. Her phone number is 908-273-9000.

I get my oxygen from Apria Healthcare. They will deliver any size tank right to your door. Make sure you order a clustermasx.

Hope this info helps. Good luck.

Dan M.
www.apria.com

Title: Re: Neuro & O2 in New Jersey
Post by marlinsfan on Apr 16^th, 2008, 11:47am

Thanks, all. I hooked up with Apria.

I ended up going to the local shop: Summit Medical Group. Dr. Naik saw me. Although she does not have any patients with CH, she is young and knew a lot about our condition and different treatments. She spent 1 hour with me , and I walked out with a script for O2, jabs, and wants me to call her if I'm ready to go on preventatives (other than melatonin). i'm not a fan of preventatives, so I think I'm good to go.

My shadows have remained for the past 2+ weeks.

Title: Re: Neuro & O2 in New Jersey
Post by Chronic on Apr 28^th, 2008, 10:21am

on 04/15/08 at 09:28:19, danm wrote:

I live in Watchung, NJ and go to Dr. Newman. If your current Neuro doesn't work out, try him. He has helped me immeasurably and he is available 24/7 by e-mail.

There is nothing better than knowing if you start a horrible span of clusters on a Friday night that you can send an e-mail to your neuro and he will help you out over the weekend.

Title: Re: Neuro & O2 in New Jersey
Post by krojo on May 4^th, 2008, 3:00pm

Hi All,
I'm new to the board, but have been suffering CH for 4-5 years. My NYC neurologist just got me O2, also from Apria. Unfortunately he didn't specify the mask type in the 'script and I have just the nasal cannulas, which I've read (and experienced) are ineffective.

I've been fighting with Apria trying to get the non-rebreather mask and am having a hard time. I'm ready to buy my own mask, but am not sure where to do it. I've heard of clustermasx on this site and other places, but my email to the clustermasx folks just bounced.

Can I buy a clustermasx online? Can I get one from Apria? Can I buy one at a medical supply store in New York City?

Thanks in advance for any help. I am so desperate right now and so happy to have found this site!

-Rob

Title: Re: Neuro & O2 in New Jersey
Post by DennisM1045 on May 4^th, 2008, 4:52pm

Hi Rob! Wecome.

Like you said a nasal canula isn't going to do it. What flow rate were you perscribed?

In order to get anywhere with Apria your Dr will have to revise the perscription. Apria can't give you anything your Dr hasn't perscribed. The script should look something like this:

100% O2 @ 12-15lpm via NRB for accute treatment of cluster headache.

If your Dr needs convincing, go up to OUCH-US and check out the O2 info pages. They'll have the research info your Dr will need to see.

www.ouch-us.org

If this looks like an up hill battle then your best bet in the short run is go to this link and buy the parts for a proper mask.

http://www.mushys.com/O2/mymask.html

Good luck

Title: Re: Neuro & O2 in New Jersey
Post by krojo on May 4^th, 2008, 8:07pm

Thanks Denis for the perfectly succinct advice. Much appreciated.
-Rob