Anyone from Houston, Tx?

[danijake]

Is there anyone from Houston out there? I am feeling pretty alone in this. I had problems with passing out at work for about a year and a half. And I also had heart palpitations. May 26, 2007 I started getting worse and passing out all the time. I went to see a Cardio for my palpitations and he did tests for a couple of months, then sent me to see a specialist in downtown Houston. I have ANVRT whatever that stands for? They set me up to have a surgical procedure done for the next week (That was sometime in July). Well, in the mean time I had gone to see a Neuro and had an MRI done. So, 4 days before the heart procedure I went back to see the Neuro and he told me I had a tumor. I was shocked. He said it was rather large and needed to come out. I left crying. I called my mom and she was shocked. I had no neurological symptoms at all. I was referred to Dr Bindal, the chief of micro-neurosurgery at SW Memorial. He told me the tumor was ice cream cone shaped and pressing on my brain stem. He said if I didn't have it taken out I would be dead inside of 2 years. I was scared to death...no pun intended. THEN I went to see the ENT, Dr McReynolds. He confirmed what Doc Bindal said. My 18 mm tumor was in a dead end canal and tangled itself up in all my nerves there. (Freakin' thing!!!) That was July 17, 2007. We set up a date for August 13, 2007. My head was spinning at how fast this was happening. I went to the hospital Aug. 13 and had my surgery...7 1/2 hours. I don't remember the weekend before or very much in the last 4 months. I do remember I had horrible balance, fell quite a few times and cut my head open on the surgery side. So I went to vestibular therapy and learned how to get my balance back.  I've also been having these mind blowing headaches and muscle spasms. I have tried every drug to stop this pain, but the Dr s seem to think I'm crazy. I finally went to another Neuro and he believes me!!! Now I am taking Imitrex injections each morning and ibuprofen for the rest of the day. It seems to be working. I've gone back to work and feel a lot better. I just wanted to know if there was a support group out here that I could go to. Does anyone know how to find that out?

[Joef]

Welcome  ...

I looked on http://www.anausa.org/local_groups.html there is a group in Dallas... a few hours away....

Headaches and balance problems are a common issue !! did they say the tumor was an Acoustic Neuroma ? (or AN for short)

I too was beginning to wonder if I had heart issues before they did an MRI ...

[danijake]

Yes it was an acoustic neuroma or schwannoma or whatever else they called it in the last few months. I'm confused about it all.

[Boppie]

Hi, I had my tumor removed at Houston Methodist in 2005.  I had a great team of doctors from Baylor.  My tumor was 2 cm and shaped like an ice cream cone, too.  I have no bad side affects today.  Of course I lost my hearing and can only regain 95% of normal balance.  I am sorry to hear about your headaches.  The only residual pain I have dealt with is neck pain, but I manage okay with that.  There are several people on this forum in the Clearlake area who met for a coffee last summer.  I was invited to meet with them but Victoria is 130 miles from Clear Lake, so I didn't attend. 

Your tumor must have been large to have caused so much headache complication.  Yes, there are several other ANers from San Antonio and the Dallas area, and one other lady here in Victoria.  I hope you hear from others through the Forum.  There are several headache suffers on the Forum, Capt. Deb is the one I think of off the top of my head.  If you search "headache" on the Forum front page, you'll come up with many threads and posts.

[waypoint]

Hi Dani and welcome to the board. I'm from Houston. I had my 2.4 cm AN removed on Oct 1st at Herman Memorial. My nuerosurgeon is Dr. Serdar Alp. He is a great surgeon but he is transferring to John Hopkins at the beginning of the year. Your symptoms sound like you were suffering from a very large tumor but you said it was 18mm which is 1.8 cm. Mine was also pushing against my brain stem. Which procedure did they used to remove the tumor, translab, retrosigmoid, or middle fossa? Did you have the bad headache before the surgery or only after? My headaches did go away within a couple of weeks. I don't know what more to tell you except patience is the key as well as exercising your face and vestibular nerves. I haven't started back to work yet, but will be returning at the end of this month. I'm also 36. good luck to you.

[susier]

Hi Dani,
I'm from the Clear Lake area.  My AN is luckily very small.  Although the I went through alot of the symptoms in the beginning..headaches, dizzyness, etc.  I also went to see Dr. McReynolds in July, very nice Doc and seemed very knowledgable in the area of AN's.  I am fortunate that I am now feeling good.  I haven't experienced what you are going through, but am willing to listen if you just need someone to talk/vent with.  Good luck to you and hope things get better for you.

[danijake]

I'm glad to hear I'm not the only one in Houston!!! My "precious" tumor was removed Translab style. I'm sorry, I've been having a BAD day. Been dizzy and have a headache so I am trying a little sarcasm to lift my spirits I used to have migraines about 3x a month, but what's strange is they just stopped in 2004(around May). I hadn't even had a dull headache since then. Only the usual sinus ones everyone in this part of the "world" is expected to have. I joke around and say that all of the headaches I didn't have are catching up with me now! I can't even sleep at night half the time. I wake up 2-3 times a night with these and I ran out of Imitrex injections. My insurance won't pay for more than 4 a month. I have no facial paralysis, well, not that bad--just my eyelid droops a little. My left ear sticks out like a sore thumb and I've gotten my balance back (mostly) with Dr McReynolds' constant yipping at me to go to Balance Diagnostics. He is a good Dr and I love him to death(no pun). He let me choose which way I wanted it removed. I chose Translab to save my facial nerve. I realize that sounds vain, but I felt like I needed to do that. He really p*@$ed me off when he told me I shouldn't be having the headaches, though. I went 'round and 'round with him for 2 months and finally just gave up. Now I have to go back in Jan or Feb and get my head prepped for the BAHA. I forgot to send them(drs) a x-mas card . I'll do that tomorrow. Thanks ya'll!

[Brendalu]

Dani,
I'm sorry it took me so long to reply!  I am also from the Houston area.  I had my surgery (translab) at CLearlake Regional) in 2005.  If you need some one to talk to email me and I will give you my numbers.  I also have the headaches.  I am on Topamax to help prevent them and it is doing a pretty good job.  I'm down from 6-7 a week to one-three and they are not as intense.  I was not a candidate for Imitrex, I tried the pills, the injections and the nasal spray and all three made me crazier than I already am!  Good luck, Dani!
Brenda