3.5 years post op and things are going down hill

[robertwh2]

I saw the balance PT this last Friday. She is a PHD who runs the balance physical therapy at Boone hospital in Columbia,  MO.

Spent an hour with her on this first visit doing exams and talking about the sudden onset of balance issues and any other things that may have caused it. I have 3 sets of vestibular exercises that I am to do 3-4 times a day. She cut back on how much she wants me to do since 'I am trying to work full time'. She also seemed concerned about our upcoming vacation and how much I am going to be able to do at the lake. So far the exercises are kicking my butt so I hope they are retraining my brain. This week will be challenging with work, new exercises, and life in general.

I am to call her next week and follow up appointment on the 27th after her and our vacations. She will run some tests then to determine if I need to go to another Neurologist. She made it very clear that the exercises may or may not solve the problem. We will know a lot more in 3 weeks. 

I have seen 3 Drs since switching hospitals and the service and support have been wonderful. Never feel like it is not worth getting another opinion or that you have to much invested in your current hospital or Dr. If you are not getting answers get another opinion,  it makes a huge difference!

Never give up!

God Bless,

Robert

[jmarkle]

Hi Robert,

I noticed that in the beginning of your latest issues you had a day on roller coasters, I am wondering if this was potentially a contributing factor.

I am on W&W and prior to being diagnosed, I would lose my hearing for a period of days after being on roller coasters. My initial symptoms, 2 years prior to diagnosis, were that I completely lost hearing on 1 ear for 2 weeks just after using an inversion table to address back issues. I am convinced that turning upside down, or any type of G forces, is forcing blood to the tumor and in some way impacting my hearing.  I discussed this with my doctor but he could not confirm or deny that turning upside down  or being on roller coasters has an impact on the tumor.

I understand that you are post surgery, but in my UN- Professional opinion, I would think that spinning and having  blood rush to the head has an impact to the vesitbular system and just puts a strain in general on everything in the head.

I wish you luck and hope you recover soon!
John

[robertwh2]

Thanks John... I have mentioned that to 7 different Drs and none of them will say it has anything to do with it. Most write it off as a non-contributor. I still wonder though... the body is linked and roller coasters can be rough on balance, etc....

[robertwh2]

Had my follow up appointment with the PHD PT today.  She ran some tests that kicked my butt. 

The motor control tests were first.  These are the platform moves forward or backwards.  Small, medium,  and large distance.  All tests came back in normal range. My wife said one of the forward was abnormal,  but when combined with the 3 tries, te tests were in the normal range.

Then we did the sensory organization test.  6 different scenarios with the platform moving in various manners,  the structure moving (causing perception changes), and eyes open or closed.  They get more challenging from test 1 to test 6. The first 3 I tested in normal range,  the forth was mixed result, and the 5th and 6th I fell. Meaning my toes or heels came off the platform.  In reality I did fall into the Dr.

These tests help to determine if balance issues are caused by visual, vestibular,  or joint sense. In my case the joint sense and visual are normal. While we expected the vestibular rating to be below normal,  it was testing as non existent.  My non severed nerve and brain are not working together to help me balance at all. 

The results are the first to point us in any direction. My next stop is with another neurologist, but now we have something to focus on now.

Having had an MRI last August I am fairly confident that I do not have another AN on the right side this time.   

More to come in this story as I do not believe this is my new normal. 

Thanks,

Robert

[robertwh2]

Sadly my appointment with doctor number 8 is scheduled for September.  Ugh.... frustrating since I first started having issues last July/August time frame.  So year of struggles and the clock is still ticking and I will miss the entire bicycle season. 

Very thankful for the great results from my last couple of appointments and that we have some direction.  Praying their is a cancelation and I can get in earlier.

[robertwh2]

Was totaly blessed last week and the visit with doctor number 8 happened on Thursday July 10th! He ordered a bunch of blood work, which came back as normal. He also ordered another MRI which is tomorrow the 17th. The Dr is not sure the cause of all my recent issues but is having head and neck with and without contrast being done and did mention it could be an AN on the other side.

I am doubtful it would be another AN with a scan done a year ago and no hearing or tinitus issues. Still makes me nervous thinking about the call I will get after the scan.

Praying for results and answers, preferably without needing another surgery!

 

[MG]

Sending thoughts and prayers robertwh2. Hope all goes well!

MG

[robertwh2]

MRI complete now the clock ticks until I hear from the doctor. 

Do I pull the disk and look at the scans myself? Peace of mind or more stress,  I am just as likely to miss read it as I would be to see if it is good or not.

[MG]

I just had my MRI also. I went home and looked at it but it was hard to read accurately. I could tell where it was but not able to measure it correctly. I will just wait until Tuesday when I see my doctor.

 Best wishes robertwh2.
MG

[robertwh2]

Heard from the doctor today and praise God the MRIs are all normal. 

They still do not have any clue as to why the non AN side vestibular nerve is not working.

More to come... expecting a referral to Dr number 9.

[robertwh2]

I get to see another Dr on August 1st... I am so excited. ?. Can you feel the sarcasm. Thisvwill be 9 Drs and 3 hospitals to try to figure out what is wrong.  So far the thought is that I am having issues that relate to brain trauma or surgery in this case.  Not sure what to expect this coming week, I am beginning to think they won't figure it out. 

So far I have the usual SSD,  tinnitus,  and for 3 years normal/mild balance issues.  Now I can't drive the balance is so bad, no more cycling,  heck a half a mile walk has me stumbling.  We have found out my vestibular nerve on my non AN side is not communicating with the brain and I have hyper reflexia, very reactive nerves that is most commonly caused by brain trauma. 

Are they going to find an answer and will things get better.... no clue. Praying daily for God to intervene. 

Frustrared but I have faith that God is in control.

[CHD63]

Hi Robert .....

So sorry you are dealing with all of these balance issues this long post-op.  It is very unusual so I can understand why you are getting a multitude of different opinions on this.

Since the medical people are all over the ballpark with explanations, have you looked into other causes, such as your diet?

It may have absolutely nothing to do with your situation, but I find when I have too much caffeine (in my case coffee or chocolate), anything with MSG in it, or too much salt, my balance issues increase ten-fold.

Your situation is one of those times when you really do not appreciate being unique!

Many thoughts and prayers for answers!

Clarice

[robertwh2]

Thanks for the response.  Yes, we have looked at diet to some extent.  Caffeine has been reduced from 10-12 servings a day to 2. I was exercising back then and had great blood pressure.  No improvement at all. Diet has changed twice overall from who cares,  to low carb,  to pre diabetic.  I have also tried going low salt but that is hard now days,  especially on the go with 3 kids in sports etc...

I wish it was something that simple. I could make almost any food adjustment necessary.  Praying for wisdom for this next doctor.

[robertwh2]

Another doctor appointment down.

I think we can now say this has nothing to do with my AN.  Whatever is causing the good side vestibular nerve to not work right is magnifying my balance issues. 

The doctor is not 100% of the cause,  but has a thing or two to try. It might be vestibular migrains or I may need opto kinetic vestibular exercises.  He has ruled out hydrops,  kinda like Meiners,  and it is not a second tumor.  Scared me for a bit when he mentioned not wanting to sever my good nerve even if it is damaged.  Some function is better than none.

More to come, but no surgery at this time which was a huge concern of mine.

[MG]

Hope you find the answer so you can get on the road to recovery. Thoughts and prayers.

MG