Hi all

I have been reading the post for some time on the site. I have been sick for 2 years. Started out with a 2 week spell in the spring of 02 then it hit me and stayed from about Jan 03 on. 1. I feel dizzy but not spinning most all the time. It feels like I am drunk all the time. I do not drink at all. 2. Nausea most all the time, the more I move both 1 and 2 get worst along with barrometric changes and elevation changes. 3. sharp hot burning pain in my left ear most the time, I do have times where it is ok but with the more movement, elevation changes and barometric changes it really gets bad. Also when it is doing the pain thing loud sharp noises hurt (like setting down a dish on a dish, ouch!!). If I get under stress it seems to trun up the pain and the others conditions. I live near 4000 ft and find I do feel better at the lower elevations but I still do not feel normal. Driving is not the same any more but I still can do it with caution. If i stay calm,quite and not move much It helps me feel some better but not at all even 90%. If I am active I have learned to keep going as stopping I get very bad for some time. Getting food in me helps for around 30 min. having a full blader or colon seems to help also still not 100%

I have seen many doctors and had most all the normal ear tests, even had a operation on the left petrous fossa to remove material they told me needed to be removed. It took almost 6 months to totaly recover from that. I was told by the doctors assistant that the material they took out is back and it is normal now. They sent me back to a doctor that sent me to them. We tried many more medications with no help. After that doctor tried all he wanted to I was on my own. I went to the Mayo Clinc and had all the normal ear testing that I had before the operation. They checked me all over and I was told they can not help me and it should just go away on its own. Sadly I thought the Mayo Clinic could help me as I was under the impression they took on hard cases. The trip was over 1500 miles one way but it was fun out side of not getting any more cules to the problem.

Would like to know if anyone has the same conditions or might know where I can start as I am my own doctor at this time. I do have an appointment with Dr Epley in Portland Oregon in the spring, not sure if he can help me or not but it will be worth the wait for the appointment if he can.


Thanks

Hi Kc

....."remove material they told me needed to be removed"....

They(Doctors) never explained to you exactly what was removed in the operation, why, and the "material's" relationship to your symptoms/problem??

..."I have seen many doctors and had most all the normal ear tests.....I went to the Mayo Clinc........They checked me all over and I was told they can not help me and it should just go away on its own."......

And no where along the line---did anyone(Medical Types) suggest---or even---guess what the problem/injury might be---or even give it a "name"---not even the Mayo Clinic???

What do you think you have/is causing the symptoms??

:cool:

Hello,

I wondered what drugs they had given you? Might give me an idea as to what possibilities they were looking in to, difficult to offer advice without this info.

best,

hbep

Hello Subs30 & Hbep

Thank you both for the reply.

The Doctor (doc 3)Prior to the surgery had the CT and MRI scans done after all the vestibular testing showed all was normal, at that time he was thinking Vascular Loop also Perilyph Fistula, Endolymphatic hydrops And Eustachian Tube Dysfunction. This was all ruled out when the CT and MRI got back to us. I then was told that I have a lesion 1cm wide and long in the left Petrous Apex and a venous anomaly in the left cerebellar hemisphere. the operation results say it was a small cavity within the petrous apex which appeared to be that of a mucocele that has not been draining. I had facial paralysis for about 60 days after the operation but it did not start till 4 days after leaving the hospital. After about 5 months My recovery was not what they wanted to see and they started to run more scans. When I returned after the scans were read and also I had a neuro-ophthalmologic testing and that all was ok. That is when the assistant for the doctor that did the operation told me that the trapped fliud is back where the operation was and it is no worries as this is normal in any one. So the operation was a bust at that point and they told me they can't help me and sent me back to Doc 3. He mainly tried more meds and all with not any help.

Meds tried before the operation were, Meclizien and diazepam

Meds along with a low salt diet after the operation tried to combat this were Meclezine, Diamox, Indomethacin, Neurontin and a few others That I do not remember at this time.

So Doc 3 then got to thinking it may be the blood vessel in the brain, and sent me out the door to find help on my own. So I then contacted the Mayo Clinic. They did help me in one way and ruled out the blood vessel (I later got a 2nd opinon from a doctor in Calif. that is know to be very good at that type of issue he said the same as Mayo)

So that has been removed from the list. The Mayo ran most all the same vestibular testing and reviewed all the scans I had. The discharge diagnoses on the paper work after 2 weeks is Chronic Dizziness and Cerebellar Venous Angioma. I was told that this odd problem I have spontaneously clears on its own by the Doctor in Otorhinolaryngology. I am waiting for the bills from Mayo to Spontaneously clear on their own also!

After that visit my last one was a follow up with a Gastor doc and he said the tests were all ok when they check my stomach. He offered to help what he could and gave me a perscription for Scopolamine patch. At first it seemed to help some with the nausea, brought it down about 50% but it did not last long at all and I started to get very sick after using them for 30 days. I stopped and the condition is the same.

To date I have not any name from any doctor of what this might be and I have seem many things on this board that looks close and I never heard of, I do feel it has something to do with the left ear area as the pain is very hot also the bump behind my left ear is sore and is bigger that the right side, I was told that is a gland and not any thing at all to look at.

So looking on the net I found Dr Epley has a clinic. So far this is the only direction I know to go. Funny thing is he is located in the same town as the Doctor that did the operation and Doc 3.

This has not at all been a fun journey but I have learned quite a lot and it has strenghted my walk with the lord, I know he will see me to the day we find how to fix this.

I thank you for your help here on the board
KC

Hi KC

...."Chronic Dizziness and Cerebellar Venous Angioma. I was told that this odd problem"....

From what I understand in regards to "Cerebellar Venous Angioma"----your Dx from the Mayo---it is not something---they(Doc's) guess at---it can and usually is confirmed via MRI's/CT's, is found in about 2% of the population in the U.S. and internationally----and is usually found---during examinations for seemingly unrelated conditions---i.e., unexplained dizziness, eye probs, etc...and that one of the symptoms of the problem is dizziness/vertigo, etc...most of what I read---says---operations as last resort---conservative approaches---are the norm recommendation----unless there is a high probability of a stroke, etc....

Could not tell/find---if the conservative approach is taken---what exactly---the medical types do---to track it, etc....

So it looks like what Mayo was saying was that---yes there is "Chronic Dizziness" as a result of your having the Dx'd/confirmed condition/injury known as "Cerebellar Venous Angioma"

As for it going away on it's own----not sure on that---but Mayo should be able to supply you with their rational/data/statistics on that.

Also I see---if I correlated---your postings correctly---that your 31/wild fire firefighter(or were), etc....and it appears that you seem to believe that---the dizziness, etc...can be dealt with/solved medically as a issue separate---from the apparent cause of it( "Cerebellar Venous Angioma").

If that's were your headed---and while Epley---is outstanding---my guess---for this---is Northwestern Univ(Dr Hain's group)---since the neurological resources of Northwestern Univ's Neurology Dept---would/could be applied---and that group has a in depth research/clinical strength/depth---not normally found in private practices---no matter how innovative they may--- on singular occasions---be.


....This has not at all been a fun journey but I have learned quite a lot and it has strenghted my walk....".....

Yes---it is a character building event---which many would gladly skip---many here will/do understand that!!

:cool:

Subs30

At Mayo and a Dr. in SF Calf. that the CVA is just what you said, spotted in the MRI when looking for the problem. They both told me this is a very low chance it is the cause of my problems. Sorry I did not make that very clear as Mayo was very good at telling me what the CVA is and the chances of it the cause of the problems. Also that messing with the CVA could cause more problems and not help at all. I get to typing and can make a big mess.

"Mayo should be able to supply you with their rational/data/statistics on that."

Mayo -- only and final answer I got was this is not anything that requires any more action and that it should just go away in time.

That was not an answer I needed but could be what we might have to face. It would have been helpful if they reviewed my case more and helped me find someone that may have an idea or approch that is outside the normal.

My point has been lets get this solved and not to cause problems for any of the doctors that have seen me, I do plan on passing on the info the day I find this and/or get better, more of a plan to help a person in the same box as I am, as many of the doctors I have seen will not look outside the box they are in. This is understandable to a point due to all the litigation problems they face.

I will look into Northwestern Univ(Dr Hain's group) and I should be getting a better idea of the date of my appointment will with Dr Epley after the first of the new year.

Thanks and have a Merry Christmas
KC

........."They both told me this is a very low chance it is the cause of my problems.".....

Mayo,et-l. Dx'd CVA but told you it had a low probability as the cause of your "Chronic Dizziness"----but then did not elaborate on what they believed was the cause?

---not even a guess

---(after all the inner ear tests)

---as to what might be causing your "Chronic Dizziness"?

I would worry less about offending or causing legal probs for Doc/Mayo and more about getting a straight/detailed answer from them(Mayo) on what you paid for---i.e., the reason for the dizziness.

yes--merry xmass.

Subs30

Yes they did not give me any ideas at all. I am at about the same point as I was 2 years ago. I have made noise and asked over and over at the Mayo with not any help. They just were done with me and that was it. My family was with me and we all were not happy with the response. If fact the first doctor at Mayo told us that they may not be able to help so starting out was not all that great. I am sure I have offended the Mayo folks as I called them on thier lack of care and asked for help but thats been over 2 months now.

Kc

Kc

By Federal Law(recently went into effect)they are required "repeat" required to provide you with all copies of your medical records---including "Clinical Notes"----while they may/can charge you for the copying/mailing---that is all.

Write them a letter "Citing" that law and request they provide you with copies of all your medical records/clinical notes, surrounding your care etc....

I think you will find them very interesting---since what normally is in them---is usually not disclosed/fully disclosed to the patient---since it is "deemed" not germane to the final Dx----plus they would prefer not to burden you with medical facts that they are sure you will never understand.

You should have copies of all your medical records---in this matter---your history is critical to a Dx---by other Doc's.

Think the law says---they have "thirty days" to comply with your request.

Do not have the Federal Law in front of me but---a search on the "net" on patient records federal law---should turn it up or a phone call to Mayo---they are required by law to inform you---if asked---also any paper work you signed/were given on your way into Mayo---will disclose it.

You will need that documented medical info---for your files---and when you visit other Doc's trying to get to the bottom of this.

Do not take "no" for an answer---there is a "heavy federal fine" for any violation and/or none compliance on their part.

Good Luck!!

:cool:

Subs30

Thanks for the advice, I have all records and image disks as I was getting a bit upset with how things were going before even going to the Mayo even. The Doctor that did the operation was done with me after they could not find the problem also.

The doctor at Mayo explains how he told us that all the test were ok and then States:
"I tried to spend as much time as possible reassuring them that this often spontaneously clears. I am endeavoring to call the gastroenterologist to tell him we could not find anything in terms of tumor, vascular anomalies, or other CNS or end-organ pathology. Again I tried to reassure him."

That was the last entery in the record

This was on the cover letter

"The discharge diagnoses are:
Chronic Dizziness
Cerebellar Venous Angioma"


I want to thank you for helping and reading my posts, its been nice to vent a bit, sorry if I get carried away but this is with me all the time and its a bit hard forget it all the time.

Thanks
KC

Subs30

Thanks for the advice, I have all records and image disks as I was getting a bit upset with how things were going before even going to the Mayo even. The Doctor that did the operation was done with me after they could not find the problem also.

The doctor at Mayo explains how he told us that all the test were ok and then States:
"I tried to spend as much time as possible reassuring them that this often spontaneously clears. I am endeavoring to call the gastroenterologist to tell him we could not find anything in terms of tumor, vascular anomalies, or other CNS or end-organ pathology. Again I tried to reassure him."

That was the last entery in the record

This was on the cover letter

"The discharge diagnoses are:
Chronic Dizziness
Cerebellar Venous Angioma"


I want to thank you for helping and reading my posts, its been nice to vent a bit, sorry if I get carried away but this is with me all the time and its a bit hard forget it all the time.

Thanks
KC

Yep it's hard---don't give up!!

:cool: