ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: robertwh2 on January 21, 2014, 09:33:30 pm
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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/ (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
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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
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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.
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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
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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....
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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.
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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
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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
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My last post goes to Robert also. Sorry, I forgot to include his name. :)
MG
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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!
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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
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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
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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
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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
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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
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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
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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
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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....
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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
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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.
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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!
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Sending thoughts and prayers robertwh2. Hope all goes well!
MG
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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.
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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
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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.
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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.
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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
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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.
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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.
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Hope you find the answer so you can get on the road to recovery. Thoughts and prayers.
MG
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Robert, Your early path sounded very familiar as I am an early 40, left AN patient having had surgery at Univ of Michigan. Other than transient facial weakness post op, I've gradually accommodated to the hearing loss, tinnitus and new normal for balance (some pay good money for roller coasters, but I just have to shake my head…) Overall was very happy with the surgical group, vestibular rehab team and hospital at UM. I'm also a family physician, so very much try to incorporate my experience into practice and share when appropriate. Vertigo is difficult to deal with by itself, and having all the other symptoms must be an enormous burden.
I very much agree that you need a great medical team and vigorous support. I can't pretend to know what you're going through, but having had evolving symptoms over the past year and a half, I'm hopeful that a cause and cure is found.
-Jim
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Thanks Jim, wish I could say things have improved. The last med did not work but they wanted me on it for 3-4 weeks. So I took my last dose yesterday and started another round of steroids and another med, Imipram HCL. Still waiting to find out what the Dr. is trying to treat with this one, but this he has been serving in the hospital so communication has been difficult.
Don't think this has anything to do with my AN, but would be nice to find an answer. The tremors are getting worse and the balance and fatigue issues continue. We are running out of tests to run, but seems to me that we are trying one drug after another. Having a hard time making it through work some days and I still cant drive. In some ways I wish it was AN caused as I would have an explanation.
Still struggling, but have hope and faith that it will all work out.
Thanks!
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Ok, saw Dr. Mikulec at St. Louis University Hospital almost 2 weeks ago. He is the 10th Dr. and is at the 4th hospital that I have seen since Nov. 25, 2013 trying to figure out what is causing the balance issues. He is the 3rd Dr. to state it is tied to my life long migraine struggles. Even though I have not had a typical migraine in 3-5 years.
Basically if you had migraines as a child you are a severe migraine suffer, I fall into this category. Per this latest Dr. Migrainers have difficulty with vestibular trauma, which mine was severed with the AN removal. Since I have already tried a handful of migraine medicine with no results, he told me all I can do it go on a migraine diet, maybe try a few different meds, but there is nothing he can do for me. Working on the migraine diet and am about 2/3rds there, but there is no idea if this is going to help or not.
Not sure what to do next as the last 2 Docs had nothing for me other than it is migraine related and this may be the new normal. Not sure I am ready to accept that, but on the other hand I don't know where to go next. If is very frustrating, but I am doing the best I can to get some exercise and following the docs direction. He said give it 6 months, so time will tell.
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This is my Dr. from Duke Univ. I can't say much about his effectiveness since I am newly diagnosed and only saw him once. I go back for an MRI and another consult on 17 December. He may be the answer, or he may be just another Dr. who can't give you something concrete to go on. But, while he "specializes" in about a dozen things, one of his main specialties is balance. He does leading edge research on balance issues and uses very sophisticated tests to determine if the balance issues are coming from the ear or the brain itself. It might be worthwhile to contact his office and see what they think.
If you scroll down you will see that he does research specifically regarding vertigo caused by migraines.
http://www.dukemedicine.org/find-doctors-physicians/david-m-kaylie-md-ms (http://www.dukemedicine.org/find-doctors-physicians/david-m-kaylie-md-ms)