Author Topic: Post GK - vertigo/dizziness, balance & nystagmus  (Read 538 times)

rigbylu

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Post GK - vertigo/dizziness, balance & nystagmus
« on: January 04, 2019, 09:03:41 pm »
I was initially diagnosed when I began having symptoms of vertigo & nystagmus. My AN had been stable for years but the vertigo & nystagmus has returned as well as my balance is now affected. This prompted an MRI which has shown growth.

I saw Dr. Kondziolka at NYU. He said I’m a good candidate for either surgery or radiation & is recommending GK, as I expected since that’s his specialty. He told me his patients who experience vestibular issues post GK have benefited from therapy.

I’d like to know of those who’ve had GK & experienced vestibular issues prior to treatment how many continued to experience these issues post GK. Were the symptoms worse? Did they eventually get better?

I am going to begin vestibular therapy next week while I continue to get opinions.
« Last Edit: January 04, 2019, 09:12:04 pm by rigbylu »

gary.s

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Re: Post GK - vertigo/dizziness, balance & nystagmus
« Reply #1 on: January 06, 2019, 06:54:56 pm »
Hi rigbylu,

I had Cyber Knife radiation in April of 2018. Similar to GK, although it is fractionated, meaning I had five small sessions instead of one big session with GK. I had vertigo, dizziness, balance issues, tinnitus, and loss of hearing on my right side prior to radiation. Now that I am almost nine months post CK, some symptoms are better and some worse. The tinnitus is almost completely gone, dizziness and vertigo are becoming rare, I am almost completely deaf on the AN side, and my balance has gotten much worse over the last few months. I am considering vestibular therapy if things do not improve in the near future. Although my balance is an ongoing problem, I am grateful that  I was a candidate for radiation due to the size of my tumor. At my age of 68, surgery would have been a difficult thing to recover from. I hope my experience helps. Please let me know how the vestibular therapy is going. Best of luck,

Gary 
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018 at Barrow Neurological Institute, Phoenix, AZ
9/2018 hearing aid Phonak Audeo B and Phonak Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm

rigbylu

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Re: Post GK - vertigo/dizziness, balance & nystagmus
« Reply #2 on: January 09, 2019, 09:48:03 pm »
Thank our for your response, gary.s. You’ve provide me with much food for thought. I’m happy to hear your tinnitus has dramatically improved as well as your vertigo and dizziness. I know how these symptoms impact your quality of life. I will definitely let you know how I make out with vestibular therapy.

kestes

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Re: Post GK - vertigo/dizziness, balance & nystagmus
« Reply #3 on: January 14, 2019, 12:15:38 pm »
Hi, I am 51 and just had GK with the new Icon on Nov. 2.  My symptoms before GK were tinnitus 24 hours a day, fatigue andbalance issues as far as turning head quickly, looking left and right, etc.  I have not had Vertigo like some mention.  I also had high pitch hearing loss prior to GK.  All of these have stayed the same 10 weeks out from GK.  I don't know what the future will be with swelling, etc.  But right now I am doing great.  I am in Vestibular Therapy every 2 weeks just to help me with some eye exercises and turning my head left and right.

I will mention 5 weeks out from GK, we flew on a plane and hiked 25 miles in southern Utah and I had no problems whatsoever.

Best wishes in your research and future!!
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
Next MRI May 2018
Columbia, South Carolina

Gearbox123

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Re: Post GK - vertigo/dizziness, balance & nystagmus
« Reply #4 on: February 12, 2019, 02:58:49 pm »
Hi Rigbylu, I had GK from Dr Kondziolka  @NYU and some positive results and some things that are still challenging. I think everyone is going to be completely different because everyone tumors  are always in different locations ,sizes and what I believe is pressing or pressure on the nerve? I had balance issues and still continue to have some issues after almost two years out . I always have had a very bad left ankle injury that left me with nerve damage which is the same side of my body as my A.N . I believe that this inconsistency of my gait along with the A.N definitely contributes to some of my balance issues but soon after G.K I lost a considerable amount of hearing , have had more dizziness and more tinnitus than I had. I believe that vestibular therapy for me has been helpful not the cure all but helpful.I think it is process of having your body readjust itself constantly because the tumor is still inside the body unlike Surgery which will remove it but comes with a host of other issues. The vestibular therapy has to be done consistently until the brain relearns but I know for me having both vestibular issues along with my gait issues it’s more of a challenge. I take some antihistamines that are helpful for my continuing fullness, dizziness and headaches although my headaches are less since G.K. I like Dr Kondziolka , I think he is a great Doctor and think you are in a good place, I don’t want to be negative because like I said I had some positives from G.K my last scan my tumor swelling came down from 1 cm to back 7mm and he was happy. I am now 52 retired on disability from working on Bridges so I needed my balance and did my best to work through it all. I think that consistent rest and therapy are the keys to having good days and that sometimes weather has a role too. Like I said everyone situation is different and have met many people who have had different experiences with each type of therapy. I wish you all the best with your decision but rest a sure your in excellent care with Dr Kondziolka. All the best!