Author Topic: Long Hard Road  (Read 3988 times)

alwaysthere

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Long Hard Road
« on: November 05, 2009, 08:07:09 am »
Hello all,

It's been awhile since I posted anything, but now I feel the need to tell whats been happening with me. I had my surgery on June 25th at St. Mary's in Rochester, Minn. It turned out to be a Meningioma instead of a AN. But, they cause the same problems. The surgery went great and I was happy with the outcome. My hearing is great, I have very little facial problems that only I can tell and my balance is getting better every day. When I went back for my post-op the two surgeons where very pleased with my process and said that unless I had problems I did not have to come back for a year. BUT, when doing the MRI that day, they did find a spot on the right side of my brain. It is small enough that they are not sure if it is another tumor or what, so we will check it in a year.

Now, here's the kicker, I have developed severe headaches again along with sudden high blood pressure and severe rapid heart rate. The surgeons say they are not related to my tumor and are not migraines. So while in Rochester for my post-op the Neurologist told me about a condition in which tumors form on your adrenal glands. It is called Pheochromocytoma. So, he had me go for some blood work before I left. One of the makers for this problem came back elevated. I then had to have another test done here locally and two parts of it came back elevated. Not good. So, tomorrow I go see my Endocrinologist who I see anyway for my thyroid. If I do have tumors on my adrenal glands the I will have to have them taken out.

I am so very tired of all this that it is taking it's toll on me. When these headaches hit, there is no warning and they are really bad. So far the Doctor's around here have given me Vicodin, Valuim, & Dilaudid, which is some pretty powerful stuff. I have been to the Er here so many times that I don't want to go anymore for fear that they will think that all I want are the drugs.

Anyway, I am hoping that my Doctor tomorrow will be able to help me and give me some answers, good or bad. At this point I don't care.
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

Kaybo

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Re: Long Hard Road
« Reply #1 on: November 05, 2009, 09:23:51 am »
Hope you get some answers soon...sorry for all you have endured!

Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

msmaggie

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Re: Long Hard Road
« Reply #2 on: November 05, 2009, 11:45:11 am »
Ouch!  The headaches are bad enough, but to get hit with questionable news too?  Bummer!  I hope the drs. can come up with a plan that works. My heart goes out to you.
 I have my first year anniversary MRI for my meningioma in Dec.  Keeping my fingers crossed. :)
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Jim Scott

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Re: Long Hard Road
« Reply #3 on: November 05, 2009, 02:12:46 pm »
Hi, Patty ~

Although it's good to see you post again, I'm sorry that you have this new problem (Pheochromocytoma) to deal with.  I think most folks can relate to your frustration and weariness with doctors, hospitals, surgery and the entire world of medicine.  Thankfully, your Meningioma removal surgery went quite well and you suffered few deficits, which was splendid news.  However, discovering yet another problem that may require surgery must be daunting.  The sudden and severe headaches must certainly take their toll and the drugs, while helpful, can be addictive and have their own side effects.  I can easily understand why you want to get to the 'bottom line', schedule the surgery if it's necessary and get back to normal.  Who wouldn't? 

Like many others, I'll be thinking of and praying for you, hoping that your scheduled doctor consultation will bear fruit and start you on the end game of this current medical challenge you're facing.   Just know that we're here for you and support you in every way we can.  Please, keep us informed because we care.

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.

Doc

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Re: Long Hard Road
« Reply #4 on: November 05, 2009, 03:20:15 pm »
Hi Patty,

Nobody can say it better than Jim Scott already has...I'll keep you in my thoughts and will add you for sure to our prayer list!  I kinda know what you're going through having to deal with back to back serious illnesses and the associated surgery.  I had Open Heart Surgery 14 months before my AN surgery...not at all fun.

Take care and be well!
  ;)
Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

leapyrtwins

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Re: Long Hard Road
« Reply #5 on: November 08, 2009, 10:12:05 pm »
Patty -

sorry to hear that things have been so tough for you  :(

I'm hopeful you'll see improvement in time.

Keep your chin up and hang in there!!

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

Jackie

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Re: Long Hard Road
« Reply #6 on: November 08, 2009, 10:44:51 pm »
Hi Patty,

Congratulations on your successful surgery, may you again enjoy relief from your headaches and be free of pain soon! Sorry that you have to endure, may your blessings be many.
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Adrienne

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Re: Long Hard Road
« Reply #7 on: November 08, 2009, 10:56:53 pm »
Hi Patty,

So sorry to hear about the latest challenge.  I can't imagine.  Just when you've had enough and gone through the ringer, you get presented with another potential problem. It's stressful.  And it's no fair.  I'm holding out hope that they determine this is NOT what they are suspecting, and that you are able to get relief from your headaches soon.

(hugs).

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

alwaysthere

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Re: Long Hard Road
« Reply #8 on: November 09, 2009, 12:18:49 am »
Thanks for all the encouragement. I did see my Endro on Friday,. He does think there are problems with one or both of my adrenal glands. I have more testing done this coming week. I asked what my options were if the tests showed something. He told me that if it didn't show tumors, then medicine would take care of things. But, if there are tumors then the glands will have to come out, which means more surgery.

Patty
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

wendysig

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Re: Long Hard Road
« Reply #9 on: November 09, 2009, 07:49:56 am »
Patty,

I hope your problems can be addressed with medication and if this is the case, that it won't cause unpleasant side effects.  Avoiding surgery whenever possible is a good thing.  Hang in there and keep us posted on how you are doing.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

CHD63

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Re: Long Hard Road
« Reply #10 on: November 09, 2009, 10:32:03 pm »
Patty .....

Somehow I missed your original post ..... so sorry you are dealing with the prospect of additional surgery.  I hope and pray that medication will solve the problem, but if not there are several of us on the Forum who have had more than one brain surgery and we can identify with your fears.  I can tell you this, my second surgery was less traumatic than the first one was, if that helps in any small way.

My prayers are for relief of your headaches, proper diagnosis, and successful treatment.

Clarice

Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ncutt

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Re: Long Hard Road
« Reply #11 on: November 18, 2009, 09:24:00 pm »
Good luck, Patty, those adrenal glands can really mess with you.