Author Topic: Johns Hopkins Headache Clinic  (Read 17872 times)

cin605

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Re: Johns Hopkins Headache Clinic
« Reply #15 on: October 18, 2010, 01:48:38 pm »
Alrighty......There will be only ONE Dr. on the Islland...and he handles EVERYTHING...he WILL NOT send you to another Dr...or refer you to anyone.... ;D....as for massage guys and pool boys and gadeners ...oh and do not forget the the BARTENDER...they will be unlimited!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Lizard

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Re: Johns Hopkins Headache Clinic
« Reply #16 on: October 18, 2010, 02:00:32 pm »
Agreed, one Dr...yes only one no referrals  ;)
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mei Mei

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Re: Johns Hopkins Headache Clinic
« Reply #17 on: October 18, 2010, 06:26:09 pm »
Sounds like heaven ... lets make this a reality!!!    ;D
I'm sick of doctors, but we do have to bring ONLY one...unlimited bartenders, beachboys and gardeners sound great!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

jennifer7

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Re: Johns Hopkins Headache Clinic
« Reply #18 on: October 21, 2010, 11:10:14 am »
Hi
the one dr thing was bothering me until I read the unlimited bartenders, beachboys, gardeners, massage guys (definitely!!!) pool boys
count me in ::)
I've been on topomax almost 3 months, the headaches are not gone but they are manageable
they keep increasing the dose very slowly and each time the side effects are worse for a couple weeks but after that the headaches are a little better each time
I stuck with the dr I didn't like--he's very arrogant but maybe its for a reason  >:(
he's hoping to retrain my brain and after 6 months without headaches it will forget about them and I can get off the meds and be headache free
I like he's theory and I'm putting my faith in him because it is better than the alternative
let me know when we leave for the island
Jennifer

Lizard

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Re: Johns Hopkins Headache Clinic
« Reply #19 on: October 21, 2010, 11:22:59 am »

This island is sounding better and better each day! Perhaps it has something to do with the cooler weather coming?

Jennifer,
Totally understand that thinking, getting out from under the endless pain cycle can help, but didn't work for me.  I'm currently on meds that are doing a good job, but as soon as I stop them the headaches come back.  Good luck and please let me know how it turns out. 

Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mei Mei

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Re: Johns Hopkins Headache Clinic
« Reply #20 on: October 21, 2010, 12:08:09 pm »
Hi Jennifer,
I agree that the Topomax really works.   It together with Cymbalta helped my Myofacial pain and it was added to my list of meds about ten years ago to help with sleep.   I was feeling great on it and headache free all these years and then the AN surgery happened and turned everything topsy turvey.   I got a Urinary tract infection last summer and the neurologist took me off of the Topomax cold turkey (200mg) because they cause kidney stones and the side effects coming off of it were horrible.  I was shakey, couldn't sleep and had horrific Charlie Horses in the middle of the night.  The doc said this was the Topomax withdrawal.    Wish I had an answer  and wish we were not on so many meds.

Just want to go to the island...can't wait to book the tickets!

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

skamper

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Re: Johns Hopkins Headache Clinic
« Reply #21 on: October 23, 2010, 10:38:49 pm »
I want to join in on this island getaway.  But the headaches need to stay home.
I get these awful headaches too, I get to have another MRI to try and see what's going.
Jennifer, keep us all posted on your headaches and the meds.  I prefer not to take strong meds if I don't have too.  I don't do well on pain meds, I get loopy and hate the feeling.
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

Syl

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Re: Johns Hopkins Headache Clinic
« Reply #22 on: October 23, 2010, 11:26:57 pm »
Mei Mei:
I can't believe the doc wants you to get off the meds cold turkey. That's insane.

I had headaches every day for almost 2 weeks straight. I've been able to stay away from Tylenol, except 1 day. I've been drinking ginger tea (good for pain), cutting back on my coffee consumption, eating better & drinking more water. I've also been icing my neck (5 min on, 5 mins off) for an hour in the morning & again at night. So far the past 2 days have been headache free.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Mei Mei

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Re: Johns Hopkins Headache Clinic
« Reply #23 on: October 24, 2010, 07:01:26 am »
Yes, Syl,
I couldn't believe it either.   I left there dumbfounded and with a 6 week follow up appointment.    I think I'll cancel it because I am not following his driections and that's all they have to offer me is that I have rebound headaches which I don't believe is correct because I've had these headaches since the first day post op.   

I will look into Sleep Apnea because that was a diagnosis I got about 10 years ago at the Sleep Clinic:   Mild to Moderate, but they didn't suggest a mask, just said to lose weight which I did.   I'm seeing the neuro doc this Thursday and he'll probably take me off Lithium which he started me on a month ago.
It's just not working.   He also had me on Verapamil and Lyrica.   With each switch in meds, I went through withdrawal symptoms and felt like I was crawling out of my skin.   It's awful to go through and I hate taking all these meds with no reason.   It's like a hide and seek game.   My accupuncturist says it's scar tissue which I believe as one side is bigger than the other.   May have to go to see Dr. Ducic at Georgetown for this but I really don't want another surgery.   I'll have to think about this long and hard.

I too use the ice for the headaches, but start my day with heat to loosen up the stiff neck from sleeping.   I clench my jaw when I sleep and throughout the day.   I'll have to tell the doc this as well when I visit on Thursday.

Thanks for the suggestion of Ginger Tea.    I'll go get some today and try that.

Thanks for writing and take care of yourself.   Glad you're recovering well,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Syl

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Re: Johns Hopkins Headache Clinic
« Reply #24 on: October 24, 2010, 09:29:31 am »
Mei Mei:

I forgot to mention that I'm also using a topical analgesic alot. I apply it on my neck in the morning & at night--after I'm done icing my neck. And, when I get a headache, I apply it where it hurts. There are many of these products out there. Flanax is the one I use, but the key ingredient is capsicum.

This morning I got the beginning of a headache around my temples. My headaches don't usually begin there. They begin at the back of the head or at my insicion, then they can spread to the temples. I got my flanax & rubbed it into the temples. The pain was soon gone.

I hope you can find releif.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Captain Deb

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Re: Johns Hopkins Headache Clinic
« Reply #25 on: October 24, 2010, 12:23:07 pm »
Well, poo-poo on that doc who wants you to cold turkey your pain meds!  >:( >:( >:( Especially without offering an alternative.  My headaches, too, started shortly after my AN surgery and I wasn't taking pain meds at all. My first headache clinic doc wanted me to try to reduce my use of pain meds, but he gave me a number of trigger point injections and several meds to start taking while I did it.  Six weeks my ass!  >:( >:((Just my opinion!)

I went to a pain clinic in Huntersville, NC on Wednesday looking for someone to treat my back and my head.  After consulting with the pain doc he is convinced my back issues are caused by the surgical position I was in for my almost 4 hr hysterectomy.  My headaches may be caused by the same issues (surgical position during AN surgery)plus some scarring issues.  He spent 2 hrs taking a detailed med history and gave me quite a few options. He is convinced that occipital neuralgia caused by surgical trauma is my problem.  I listed the dozens of meds I have been on with limited results.

1.  occasional trigger point injections and occipital nerve blocks, c2-c3 nerve blocks
2. pulsed radiofrequency ablation
3.c2-c3 dorsal rhizotomy
4. neuro therapy technique
5. regenerative injection technique

My Medicare insurance will cover the first 3, the last 2 are what cutting edge sports docs give NFL and NBA pros for injuries.  I am in the process of researching all these. AND he gave me a script for Percoset, but I had to sign a narcotics agreement and pee in a cup, which I was glad to do.

I won't go into the options he gave me for my back, but they were very similar.

His name is Mark Hines and he is a pain management specialist and I was really impressed with him.  He understands the role of pain meds for people with unresolved chronic pain. Mei mei, dear, this is the kind of doc you really need to see.  I know what kind of head pain you are having--I have been going through it for 8 frigging years, although with the Botox and nerve blocks it has improved.  I can ask if he knows anyone in the DC area who does what he does. 

This doc sure did NOT treat me like an uninformed patient who didn't know what was wrong with her--I told him about the forum, symposiums, workshops and all the information I have collected over the years on my own condition.  I feel also like every medical procedure I have had has made me worse and weakened my body and stole a part of my character and vitality.
Dr Mark also expects me to do research on all the treatment options he gave me and be a participant in my treatment.

BTW I went to a second pain clinic that day--shopping around you know.  It was like night and day.  I spent most of the time with the nurse, the doc gave me ONE option to treat my back condition--nerve ablation-- and refused to address my headaches until my back pain was under control.  Both my pain conditions feed off each other--my back pain causes me such stress it triggers my migraines and vice versa.   I need these both treated. The doc treated me like a totally uninformed patient and didn't even discuss how I got this way. I won't be going back there.

One of the things Dr Mark also addressed was nutrition--he wants me to eat more protein, which I have been doing.  My cholesterol is a little high, so I have been avoiding animal products, but we went to the store and bought a family pack of nice NY strips! Yum!

For those of you looking for that island--that's what the Good Morning thread was all about--we even had our own boat that took us to many islands!!  Read it from the beginning--it is a real hoot!

God Bless all us headache sufferers--we need it!

Capt Deb

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mei Mei

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Re: Johns Hopkins Headache Clinic
« Reply #26 on: October 24, 2010, 04:19:11 pm »
No, Deb, I'm never going back to Johns Hopkins again.   The guy they gave me was an idiot and knew nothing about ANs.
, b
Your Dr. Mark on the other hand sounds really on top of it and I might come down and see him one day since it's only a plane ride away and what are plane tickets for with what we are going through.

It's been only 10 months for me and 8 years for you;  some of the people in my local DC ANAUSA group have had headaches for ten years.   I want to try and avoid that without going through another surgery, but the scar surgery makes sense and my accupuncturist has been saying all along, it is scar tissue that is causing your problems.    He's right, but keeps giving me accupuncture that doesn't help.   Nothing helps, Deb.   I'm at wit's end and now I have to go through another withdrawal period for getting off Lithium that I've been on for a month.   I've done google searches on how to get off of it, but there are no answers.   They know how to start you on a drug but not to get you off of it.   I went through withdrawal from Topamax, Verapamil and Lyrica.   Each time I thought I was was going bonkers.  I'm not looking forward to getting off of Lithium, but it does make my hands tremble like I have Parkinson's and I don't like that...it's worrisome. 

I coincidentally read some of the Good Morning Forum last night.   Funny that you should bring it up!  ;-)

I feel another headache coming on, so will sign off for now and talk to you soon.

Hugs and get better to all of us!
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Captain Deb

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Re: Johns Hopkins Headache Clinic
« Reply #27 on: October 24, 2010, 07:47:16 pm »
I believe that it is scar tissue that is irritating nerves and causing them to misfire and go nuts.  The focus of therapy should be to make that nerve calm down with chemical or radio-frequency (heat) treatment and send it into hybernation.  Meds affect your whole system.  Injection therapy targets only the area that is causing the pain.  Makes sense to me!!!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW