Author Topic: Surgery Date at Hopkins, January 12  (Read 32607 times)

leapyrtwins

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Re: Surgery Date at Hopkins, January 12
« Reply #75 on: May 09, 2010, 09:25:38 am »
Mei Mei -

thanks for the link and sorry about your headaches.

However, with all things AN, not everything can be applied to everyone.

I had retrosigmoid surgery almost 3 years ago and have had no post op headaches whatsoever.  And I don't think I'm alone in this.

I hope you find a solution to your headaches quickly.

Best,

Jan
 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #76 on: May 09, 2010, 09:31:58 am »
Dear Jan,
I am very glad for you.   I look at all these links on my google search and see the amount of research on retrosigmoid surgeries and post op headaches.   It looks like you are a very lucky lady!

Sincerely,
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

leapyrtwins

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Re: Surgery Date at Hopkins, January 12
« Reply #77 on: May 09, 2010, 09:33:29 am »
Not so lucky as you'd think.

There are lots of us on the Forum who had this surgical approach and don't suffer from headaches.

I am not unique in this.
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Surgery Date at Hopkins, January 12
« Reply #78 on: May 09, 2010, 02:27:00 pm »
Mei Mei ~

As a corollary to Jan's last post (#79), I underwent a 9-hour Retrosigmoid Approach AN debulking surgery almost 4 years ago and never experienced any headaches.   I don't believe those of us who had 'retro' surgery sans headaches are necessarily 'lucky'.  I very pointedly asked my neurosurgeon about post-op headaches and he assured me: "my AN patients don't get post-op headaches'.   He was correct, in my case.  Although post-op headaches remain a risk, modern surgical techniques have greatly reduced that risk.   

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #79 on: October 16, 2010, 01:28:15 pm »
I wish that I had your surgeon because I have to this day two to three terrible one sided headaches.

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

Jim Scott

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Re: Surgery Date at Hopkins, January 12
« Reply #80 on: October 16, 2010, 01:45:26 pm »
Mei Mei ~

I didn't mean to diminish your suffering in any way, I simply wanted to make the point as a follow-up to Jan's comment that not all AN patients that undergo the Retrosigmoid Approach surgery end up with post-op headaches.  Yes, we may be a statistical minority - but a noteworthy one.  I believe that the surgeon's skill and precautions are a major factor in avoiding post-op headaches for AN surgical patients that undergo the 'retro' procedure.  My neurosurgeon had over 30 years of AN removal experience and he assured me that he had practically eliminated the risk of post-op headaches in his 'retro' surgery patients.  He was casually confident so I didn't give it much thought after that.  His confidence proved to be well-founded.  I did not experience post-op headaches, for which I'm very grateful.  Because Jan and I had different surgeons and live far apart, I believe our lack of post-op headaches can be mostly attributed to our doctors skill and not sheer luck.

However, I realize that does nothing for you as you struggle with headaches.  I just wanted to let you know that I sympathize with your distress over your headaches and that I don't believe undergoing the AN 'retro' surgery and experiencing intractable post-op headaches is axiomatic.  Of course, I hope and pray that you can find relief from your headaches, soon.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #81 on: October 16, 2010, 02:11:22 pm »
Every time I go to a local meeting and hear of someone that went to HEI in Los Angeles, I regret not listening to Dr. Friedman that offered me the choice of the Middle Fossa at HEI.   I chose to stay home and have the convenience of being in Baltimore because of my elder father.   In 1989 I had vocal cord surgery in Irvine California and I didn't have my father living with me at the time.   I regret now finding the help for the ten days to get out to HEI and do the Middle Fossa out there.   I told Scott to go there and he seems to be doing fine.   I will continue to tell people to stay away from Hopkins and the Retrosigmoid approach.

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

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #82 on: October 17, 2010, 06:54:49 am »
Dear Donna Lynn,
Thanks for your kind words.  I was so touched and really appreciate them and your prayer.   I've tried almost everything except for Botox which I can't find and my neurologist says won't work for me.  I've had three nerve blocks, Verapamil, Neurontin, Lyrica and now Lithium which I'm not happy about because of the side effects.  The other drugs also had side effects as they kept me up all night and now in spite of cutting the dose in half, my hands tremble and I'm very nervous.   I still had a bad headache yesterday that came on so suddenly...they just come on so suddenly and get out of control that I have to drop everything and take the Alleve and Tylenol and put ice around my head.

I see that you had Dr. Friedman.   He talked to me and was trying to get me to come out there and said he would do anything to help me.   He sounded so nice and suggested the Middle Fossa for me.  I regret that I didn't go there.   I know Capt. Deb has problems but the people from my group that went there are OK.   I just don't know what to say, but am not happy with my follow up experience.   I feel at a loss.   I went to the Hopkins Headache Clinic and they gave me a resident that said my headaches were caused by the Alleve and Tylenol and to stop taking it and tough it out until they go away and come back and see him in six weeks.   I just can't do that because the headaches are too horrible to get through without help.   He offered no help.    I have sleep apnea so will go to the sleep apnea clinic and try to get a mask to see if that makes a difference in my headaches.

Hope you have a great Sunday.   It looks like beautiful weather.

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

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #83 on: October 17, 2010, 12:39:43 pm »
Hi DonnaLynn,
Thanks for all the great advice.  It's really natural and healthy and I will surely put it to good use.   I have to find out where to get the amino citocoline.   I use the website Puritan's Pride to get my products so let me see it they have that and St. John's Wort.   I take Vitamin D3 with Calcium twice a day.   I don't take Vitamin K and will call Puritan's Pride about that.

I just joined a fancy new gym called Equinox and they have Yoga.   I used to go to Yoga before my father moved in with me.   He really ties me down.   I have been having a hard time even getting out to the new gym.  He keeps waking up and wanting something and I don't have help on the weekends to save money.   It cost $7,000 a month to include the weekends so we cut back.   I really miss it.   I take Cymbalta for the myofacial pain that I have and it is also meant to be an antidepressant.

Right now I am dealing with a flea infestation from my dog.  I have flea bites all over my legs and feet and body and scalp.   They dog went to the vet and got meds by mouth and another to take when he got home to prevent worms from the fleas.  Sure enough he vomited the food and worms came with it.  I freaked out and felt so bad.  I called the ER and they said this was normal and to call the vet on Monday morning.   The janitors from the school are shampooing all my rugs and on Tuesday the exterminator is coming to do the whole house including the baseboards.

My father has surgery next week for a thyroplasty for his weak vocal cords so he can eat and drink.  He is going to be 96 on Wed.
Oh I meant to tell you my headaches are at the top right side of my head andsometimes the bottom right side occipital area.
Will live through this eventually.
Hugs,
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

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #84 on: October 17, 2010, 01:31:40 pm »
Dear Donna Lynn,
I went just now to Puritan.com and looked for amino citicoline and couldn't find it but found many other Amino Acids.   It's all very confusing as to which is the best to buy for you.

I guess I need a nutritionist to advise me.  No?

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

tenai98

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Re: Surgery Date at Hopkins, January 12
« Reply #85 on: October 17, 2010, 03:03:00 pm »
Mei Mei
For a natural flea control, take a pie plate or something along that line and put water in it half way up.  then hook a light (lamp without shade on it) over the  plate/bowl of water...and leave on overnight...fleas are attracted to the light and will jump into the water and die....it of course wont kill eggs and eggs can lay dormant for yrs until conditions are favovable to hatch....
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #86 on: October 17, 2010, 04:03:31 pm »
Thanks, that is a great suggestion, but we are dealing now with the eggs as well.   I had the guys from my high school spend the afternoon here and they steam cleaned all the carpets in the house.   They are outside on the deck drying now.   The dog seems to be flea free for the first time today and that hasn't happened since Tuesday.   Last night after I gave him the worm medicine the vet gave us in case he got worms from the fleas he vomited up his dinner and it was full of worms.  I freaked out and called the ER and they said this was normal and to see the vet on Monday.   The exterminator is coming on Tuesday morning so we'll zap the eggs throughout the house.  I'm worried about the use of chemicals in our home and cancer, but this situation is really bad.   Thanks for your concern!

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

Mei Mei

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Re: Surgery Date at Hopkins, January 12
« Reply #87 on: November 30, 2011, 06:09:19 pm »
Dear Forumites,
I am very sorry that I went to Jhons Hospikins ENT which was near my home in D.   I should have gone to HEI in Los Angeles even though it was farl from him .   These doctors at Johns Hopkins did not do well by me and I have been suffering ever since.  I hope that you do not suffer as much as I have.

Please call Dr Friedman at HEI.  He will do well by you.  I promise.

Hugs,
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

 


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