3.5 years post op and things are going down hill

[robertwh2]

In Feb 2010 I was diagnosed with an AN on my left side and on May 26, 2010 a 3.3 CM tumor was removed at University of Michigan. I had an extended stay int eh hospital due to a CSF lead and poor communication between the ENT and Neuro team. Besides that the service was wonderful and all and all they did everything they could to make it an easy stay on my wife and I.

You can find a lot of information with monthly and then less frequent updates on my personal blog. http://ministrynwork.blogspot.com/

It was tough going for the first couple of years and continued to have minimal issues that only got worse when I was tired. This last May was 3 years and I was finally comfortable riding my bicycle around the gravel rounds near by and between the bike and the recumbent in my living room I was riding 80 miles per week. This is where things started getting worse. See in July I drove 2,200 miles on a road trip, went to Six Flags St. Louis and rode roller coasters, and in many ways needed a day to rest but things were good.

In August I noticed that the recumbent bike rides took so much out of me I had a hard time walking across the house and have eventually had to cut them out. Now I can barely walk 1/2 a mile without stumbling bad and have almost hurt myself a couple of times. Not to mention a hard spill or two. Driving was getting harder and harder especially at night, in the rain, or after a long day at work.

In the early stages of this I went in for a 3 year MRI and everything looked great, Praise God! By November I found that I was feeling like I did those first 2 months after surgery and made an appointment to see a Dr. We live in Missouri now, so I am unable to see the surgical team in Michigan. First two things he did was told me to cut my caffeine in half, I have cut out 2/3 rds of it and am slowly working on the balance. He also put me on Dyazide to reduce the fluid in the inner ear. He did not know if this was the cause, but it was one of the more common. Taking this new med, plus the extra naps during the Thanksgiving Break and almost two weeks off of work at Christmas seemed to keep things from getting worse. As I started heading back to work in Jan, I was struggling with driving in the AM and had to ask my wife to take me to work. Needless to say When I saw the Dr. again in Jan things had progressed the wrong way.

From the point I scheduled the appointment till Nov 25, 2013 I kept a log. Here is a sample of the things that would happen on various days.

Hand Tremors - shaking
Hand Spasms – sudden jerk
Head Aches – spikes of pain on tumor side of my head
Motion Sickness
Eye Fatigue
Fatigue in general
Driving wears me out – I had stopped driving outside of Centralia
Unable to walk in a straight line
Stumbling into things
Stumble on flat ground
Dizziness
Exercising makes it worse
Memory seems to be sketchy at times
Mumble or slurs occasionally
Visual stimulus (wind blowing leaves, rain, things shaking) cause eye fatigue
Water drains out of left eye
Tinnitus – has been constant since before surgery, can be overwhelming at times.

On Jan 8th I saw the Dr. again and one things we agreed was that my problems are being brought on by excessive visual stimulus. My eyes are so strained from trying to keep me balanced that they are wearing out my brain with standard day to day tasks. When I hit that fatigue wall, I am out cold. I can crash for two hours get up then go to bed two hours later and sleep through the night. The Valium has had no impact, except maybe blur my vision which does not help when I am already fatigued. He put me on 5mg of Valium 3 times a day to try to give things a chance to relax. Tomorrow is two weeks and I do not see any improvement, I actually think things are getting worse now that I am back to work full time and I only get naps on Sat and Sun. 

Daily I have Dizziness (vertigo like issues), Balance (stumbling or off balance on my feet), and Brain Fatigue is a constant problem. I feel like it is having and impact at work and I know it is having an impact on my family. I have already given up so much and depend on my wife for way more than I should have to.

Am I alone? Has anyone else seem to have reverted back to early post op symptoms that don't seem to get better. I do not believe God wants this to be my new normal, and yes I pray about it, but does anyone have any suggestions? I will be reaching out to the Dr for a 2 week post appointment follow up and would really love a different perspective.

Thanks,

Robert

[CHD63]

Hi Robert and welcome to this discussion forum!

As I am sure you know, none of us are doctors on this forum, so we can only share our personal experiences and research we have done.

From my non-medical viewpoint, it seems very unusual to do as well as you did immediately post-AN removal to deteriorate to the levels you are describing.  Many of us experience the list of symptoms you describe, in varying degrees ..... or for some virtually not at all.  I personally continue to have balance issues (my case is unusual due to no vestibular function on either side), fatigue, tinnitus, and sensitive to visual stimuli ..... but this has been the case since fully recovered from surgeries.

You did not say when your last MRI was, but if it has been over a year, I would certainly insist on another one (insist on one with contrast).  Sometimes our fears can be alleviated that way.

It is always possible you have a different medical issue that is causing this change in your post-op symptoms so insist on digging for the truth.

In the meantime, continue the praying, maybe even learn meditation for stress relief, and stay on low level or no caffeine.

Let us know what you find out at your follow-up.

Many thoughts and prayers.

Clarice

[Echo]

Hello Robert,

My situation is different from you in that I had Gamma Knife 4 months ago. Where I can relate to you is with balance issues and eye problems.  I am currently working my way through these issues but find both problems cause me to be very tired by the end of my work day.  I have gotten into a routine of taking 20 minute nap breaks every day at work during lunch.  I listen to some soothing meditation recordings on my I-pod and find it immensely helpful.  My physiotherapist recommended taking the daily breaks even if all you do is find a quiet place to sit with your feet up and eye's closed and simply rest your body and brain.  For me it made a big difference in getting through the afternoon.  Don't wait for the weekend to take your naps, your body needs all the extra help it can get every day.   I also agree with cutting back on caffeine.  It made a huge difference for me with my tinnitus.

I wish you well.
Cathie.
 

[leapyrtwins]

Hi, Robert -

Sorry to hear you're having set backs.

I'm almost 7 years post op (my AN was about the size of yours) and I've never experienced what you're describing.  I had fatigue post op but it was gone well before the 1st year was up - and I was never "out cold".  I also don't recall anyone on the Forum mentioning that they were doing so well for so long and then started to have issues.

I'm no doctor, but wonder if the problems you are having are totally unrelated to your AN since its been 3 1/2 years since your surgery.

All the symptoms you mention - fatigue, shaking, jerking, stumbling, slurring words, memory issues, etc., sound like they are somehow brain related.

What kind of doctor have you been seeing?   Is he a neurologist?

Jan

[Crazycat]

I'd want to say get an MRI ASAP to check for regrowth but you had one over the past year. ANs take time to grow. If it were anything else such as an aneurysm or other tumors, those would show as well. Fluid build-up would also show. I'm not sure how but it showed on my initial MRI.

To me your symptoms sound like either a problem with fluid (hydrocephalus) or perhaps something that they are not seeing because they're not looking for it, such as an aneurysm perhaps. Or maybe they aren't seeing the fluid? Maybe you need a second opinion?

I'm in a good position to say this because, as large as my AN was, I was virtually crippled from the hydrocephalus. The fatigue was unlike anything I'd ever experienced and much like what you've described. One night I passed out behind the wheel it was so bad and that had never happened to me before (or since). Luckily, no one was coming in the opposite lane so I lived to tell about it. I advise you to be extra careful about driving. As much as you fight trying to stay awake behind the wheel, you'll just eventually black-out. It's like you have no say in the matter; it just happens. But that was the fatigue brought from brain compression through the excess fluid, not the tumor in-and-of-itself. The shaking or trembling sounds a bit like Parkinson's.

I was friends with a woman who was diagnosed with an aneurysm. She had symptoms that were much like mine. Aneurysms can be surgically treated if diagnosed early.

After my last MRI (last August) I asked my doctor if aneurysms could be detected from MRI scans. He said they could. It's just another possibility to make sure your doctors check on. Like I said, sometimes other problems can slip by because they're not being looked for. Now I make sure they look for them after my scans. Not everyone has the luxury of receiving head MRI scans once a year so I make sure I get the most out of them.

There is another recent post from a girl that has reported post operative CSF build-up in this category (Zinnia) I responded to last night. You may want to read through that thread if you haven't already.

I hope this helps....

[robertwh2]

Thanks all... I have had 2 MRIs in the last 16 months plus a contrast Cat scan and they all looked good and no regrowth. All the symptoms I am dealing with now have been there to some degree over the last 3.5 years just not consistently and as bad. It almost feels like some trigger was flipped and it went from me being able to push through it to now I cannot.

I have stopped driving altogether and am dependent on my wife getting me to and fro work. I am seeing an Oto Dr who is considered a balance specialist at Mizzou Hospital. I have also done more in tbe past 12 months than I have for years which might have something to do with it.

In God's and tbe Dr's hands right now. Was just curious if others had a similar situation.  Med 2 is not working so I guess it is time for round 3. Just need to figure itbout it is impacting my life and starting to impact my job.

[Denise S]

Ugh I just typed a 'book' and my phone rang so it deleted it!

I will try to get back on computer later and tell you my story!
Very similar!!! 4 years post op

Look up Labyrinthis or Vestibular Neuritis

[MG]

So sorry to hear about your health problems. I am on W&W so I haven't gone through any of this but just wanted to tell you that I hope and pray that things get better for you.

God bless!
MG

[MG]

My last post goes to Robert also. Sorry, I forgot to include his name.

MG

[tinabean925]

I can relate to many of your symptoms (especially fatigue and driving). Just a thought, have you mentioned medication for narcalepsy or sleep apnea? When I have to drive more than 30 minutes I take Adderall and I can drive all day. It also helps motivate me to do normal housework when I get home from work rather than going straight to sleep!

[Mei Mei]

Hi Robert,
I haven't been on the Forum for a very long time as it's been too difficult to read the stories or listen to the Webinars.    My situation is very similar to yours and I think maybe Dr. Ducic and Maureen Moriarity At Georgetown could help you as they did me and many other AN patients. 
I myself have an appt tomorrow with a neurosurgeon at GW to discuss once again the removal of the Titanium mesh out because an allergist determined that I am allergic to Titanium.   The pressure is great and might be entrapping the C2 nerve.   The recovery from an AN might be simple for some but very complicated for many other such as Denise, Liz, Tina and many others.  Please seek out the help from Dr. Ducic and my prayers are with you.

Sincerely,
Mei Mei

[robertwh2]

Last week the Surgical ENT told me he was not sure of the cause so I reached out to a Neurologist. He agreed with us that the latest test on the ENT list was not something that was needed. It would only show that I am missing a balance nerve.

 So today I had two vials of blood taken to check a few things and they want me to have another sleep study done. I have Sleep Apnea and the Dr. thinks that I am not getting deep enough sleep to accommodate for the damaged nerves and other issues. The increased fatigue (obviously) and the extra balance issues 'should' improve if they update the settings on my CPAP machine.

 I am very hopeful that the Dr. is right and either the blood work or the sleep study will find an easy solution. The alternatives would most likely be life changing.

 Should hear back in the next couple of days on the blood work, but the sleep study is not scheduled until April. I am on the cancelation list in hopes of moving it up into the next week or two. I really do not want to wait that long for answers.

 Please keep the family in your prayers as we work through this.

 Blessings,

 Robert

[jaylogs]

Hi Robert! I just wanted to chime in that I hope that the latest tests will reveal something positive so you can start getting back to a normal life.  Let us know as soon as you can. Hang in there and keep coming in here to vent if  you have to! We don't mind at all!
Jay

[leapyrtwins]

Robert,

glad you're getting some answers to your questions.

I'm hopeful that you'll see some positive results to your issues very soon.

Best,

Jan

[robertwh2]

Hey All,

It has been a while since I posted, probably due to not much changing. After all the first ENT prescribed did not work, sleep study did not change my settings, and another Neurologist who wanted to put me on Provigil which would have been way overkill. I was very frustrated with Missouri University Hospital and one the lack of listening or just throwing drugs at me.

Have had all my records transfered to Boone Hospital, the other major facility in town. I have already had the ENG/PENG testing which came back as expected. One balance nerve is functioning the other is not. All we got out of the test was that I have the visual response rate of a 20 year old athlete, I am a 40 year old semi-couch potatoe and that the ENG/PENG could not identify the cause of my balance issues.

The only option on the table is to see a balance specialized physical therapist. I do not do the vestibular exercises on a regular basis but last year I was riding a bicycle 40-80 miles per week. This should have been challenging my balance system and stretching it. From what I have read this should have been plenty of exercise for it and the stretches, head turns, etc... should not be needed. My balance issues started while I was riding the bike all the time, so hopefully this specialized PT can help me. I am doubtful, but hopeful.

The ENG/PENG doctor told me that my boty may be decompensating and there may be no answer. Not something I wanted to hear.

Journey is not over and I am still praying for a full recovery!

Thanks for letting me vent a bit here where people understand. Most people just tell me to go see another Dr or think I am giving up if I say this may be the new normal.

God Bless,

Robert