Author Topic: 14.5 years out of surgery with renewed wonky head  (Read 4178 times)

Cynaburst

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14.5 years out of surgery with renewed wonky head
« on: June 27, 2016, 05:23:09 pm »
And am terrified this means regrowth even though I have had some previous wonky headed episodes over the last several years that went away. 

On thing that scares me is that I have not been able to have an MRI since 1 year after my retrosigmoid due to implantable defibrillator.  I have had 3 or 4 CT scans in that time which were all negative but I know that CT scans are not as sensitive.

Am looking into getting another CT scan now, or instead trying to get an MRI despite the ICD.  There is one center near me that is doing them on people with pacemaker/ICDs.  Also, I may be able to change out my device in the next few years to one that is MR compatible, but so far, it is not an option.

Would love some reassurance, or hearing other's experiences about the return of wonky headedness so many years after surgery.

Thanks!

Cynthia

Greece Lover

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #1 on: July 05, 2016, 09:37:21 am »
I haven't had this experience (only about 2 months post op), but I just talked to my PT about this this morning.  There are all sorts of things that can cause a hypo function to the vestibular system, and if you've had surgery and only have nerves on one side, all your eggs are in one basket.  Have you see a PT?  It has helped me a lot.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

Patti

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #2 on: July 05, 2016, 05:00:45 pm »
What size was your tumor before surgery?  As you can see from my signature, I have had a regrowth after 15 years.  I was noticing some issues (headaches, feeling drunk after one drink). I went to a neurologist who recommended an earlier than scheduled MRI (last one 4 years before showed nothing). Starting to get some odd pains and sensations in my head, face, eye, and ear 7 months after radiosurgery, but I keep reminding myself that this means the tumor is responding to the radiation. I thought about not responding, but I was in your position and all I wanted was information.  In case you are unaware, CT scans have a lot of radiation.  Maybe you can wait until you get a compatible pacemaker.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

robertwh2

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #3 on: July 06, 2016, 10:44:57 am »
I was 3 years post op before I started having any real issues. I had continued to exercise, drive on long road trips, and was even putting +80 miles a week on my bicycle. 3 years and 4 months post op, I started having balance and fatigue issues. Vestibular training did not help, vestibular testing showed both sides of nerve not functioning, and 2 MRIs show nothing.

Sometimes there is no new cause, the body has just started struggling to adapt.

I pray your wonky head clears and their is no re-growth.

R
Diagnosed Feb 2010 with 2.3cm x 3.2cm left side AN
Trans Lab May 26, 2010 tumor had grown to 4.5cm, University of Michigan
Subsequent MRIs are clear
Left single sided deafness

Sheba

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #4 on: July 06, 2016, 04:50:23 pm »
Robert, I wonder if possibly a virus attacked your other balance nerve.  A friend of mine lost hearing on one side overnight, due to a virus last year.  It's hard for doctors to "prove" that a virus caused it, it's more like something they assume if no other explanation works.

Seems weird that the migraine tendency would explain it happening sort of suddenly like you describe.

I am so sorry you are having the issue of both sides gone - especially since you worked so hard to be active and do all the right things.

I just started reading a book called "The Brain that Changes Itself" - it starts out with a story about a lady with vestibular function totally gone on both sides.  Hers was destroyed by an antibiotic called Gentomycin.  They "cured" her of balance problems first by hooking up a device  to her tongue which substitutes for original vestibular input (in a crude way) and it was a huge help.   She wore it for a few months and then no longer needed it.   Anyway I think innovations are coming, to substitute for gaps in sensory inputs.  Maybe you want to check out the book (got it on Amazon) and ping the author (Norman Doidge).


Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

Kathleen_Mc

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #5 on: July 07, 2016, 03:01:30 am »
Cynthia:
This is something that has been on my mind recently as I have just recently had a loop recorder implanted to determine if I need a pacemaker or pacemaker/defibrillator. I would say you need to have an MRI, I know my father has gone into the "special" MRI (due to metal in his body) without issue. Best check into this with your doctor's.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Cynaburst

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #6 on: July 13, 2016, 09:32:57 pm »
After consultation with cardiologist and neurologist, I am going to have a CT scan and see whether that shows anything.  The radiologist thinks that if of IAC with contrast it would reveal any masses.

Otherwise, I may be able to have my ICD upgraded to one that is MRI compatible in a few years, so I may wait for an MRI until then assuming the CT is clean.

Thanks to everyone for your thoughts.

Kathleen - if you do need a device, you will be able to get one that is MRI compatible from the beginning.  Mine is 13 years old, so they will need to make some adjustments to my leads, and replace my generator before it is allowed.  There are some places that will do MRIs on patients with pacemakers but since it is not FDA approved, it is an uphill struggle.

Kathleen_Mc

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Re: 14.5 years out of surgery with renewed wonky head
« Reply #7 on: July 26, 2016, 03:57:28 am »
Cynaburst:
Thanks for the info., I am in Ontario Canada, if and when the need arises I shall investigate where I can have an MRI with the loop recorder in and in the event I end up with a pacemaker I will inform the doctor I need one that's compatible with MRI and hopefully we have such here
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)