Can someone help provide me from info please?!?

I've been having some bizarre head syptoms (symptoms) for nine months now. To make a long story short been to an ENT and he did a nasal examination and told me no infection. He also did a CT scan...results were back today which he had a look at and said i indeed to have some mild sinus disease. He didn't seem very worried about this and said he wouldn't recommend surgery or anything drastic and basically told me it would not be causing my syptoms (symptoms). Anyone have any experience with this? Is this something i should be worried about??  Shouldn't he have given me an antibiodic or something?? My syptoms (symptoms) are on and off numbness in my face..burning and throbbing in left side of face and head (worse in the cold)..no stuffy nose or discharge..i'm just so confused! Nobody can tell me what's wrong and i'm getting REALLY frustrated!

[angelica1]

I may be able to help you with some info, but need to know more.  First of all, get a copy of your CT scan report.  In the U.S. patients have a right to all their reports and when I go for an x-ray or scan, I always ask for the films or a CD.  I don't know about the numbness, but exactly where on the left side is the burning and throbbing.  Tell me more.  Also, it may not be due to a sinus problem.  There are other things like temporal arteritis and a few other things that could be the cause.

[CanadianGal33]

I live in Canada and they won't give us a copy of our scans or reports unfortunately.  I've had two CT scans done, one of my whole head and one of just my sinuses.  The burning goes up the left side of my head.  It also feels like half of my head is swollen.  The burning gets really bad in air conditioning or when out in the cold.  My throat has also been sore the last few days, not sure if this is related or not. Sometimes i feel the burning behind my eye also..it feels like sometimes my face gets really tight.  The numbness doesn't happen so much anymore...at first that was my only symptom other then the headaches.  It really scared me, feels like the inside of my head is on fire.  I'm terrified of this moving to my brain if this indeed is all caused by the sinus disease the ENT tells me i have (which according to him is mind but to me seems pretty major).  It almost feels like something in my head is raw and is irritated by the cold..almost like you would feel if you have a cut..how it throbs a bit and burns and itches...sometimes i even feel like the inside of my head is itchy.

[friggy]

I have deep respect for Ear Nose and Throat doctors, but notice that the word Sinus is not part of the title, mostly because sinuses are a medical frontier.  You probably don't, but you very possibly could have a fungal infection in your upper sinuses.   ENT's won't do surgery, because it's dangerous in that part of your head.  If you do have a fungal infection, the only effective way to remove it, until the Mayo Clinic finds an antifungal spray, is with a Sinus Flush, which is different from regular sinus irrigation.

http://www.medhelp.org/user_journals/show/2322

It's risky, because you have to bend over, preferably in a shower, to defeat gravity, but you can do it outside on soft ground.  It may take 4 or 5 treatments before it shows results.  It will at least remove any  sinus infection, whether it' viral, bacterial or fungal, so that will be one less factor in a diagnosis

[CanadianGal33]

He did mention he would do surgery in the future if i don't find some relief from the treatment i'm on now (neurologist has me on some antidepressants to see if it's an inflammed nerve or such)...i just know this is an infection...the whole inside of my head feels sore..it's horrible!  Could they tell by the CT scan if it was fungal or not? He showed me the CT scan but i didn't have any foggy idea what i was looking at.  I'm just terrified it's going to spread to my brain or something serious like that...i have a one year old daugther and i'm tired of always feeling sick...she's not getting my attention like she deserves and it kills me.  

[angelica1]

I read the other posts and see you already have a neurologist.  I don't think antidepressants will help.  That's what they do when they don't know the answer.  Things I think should be considered are temporal arteritis, some kind of atypical migraine, some kind of neuralgia, or even a temporo-mandibular joint dysfunction.  I don't think it's anything that's going to spread to the brain.

Needless to say, I am not impressed with your medical care system in Canada and certainly your patient rights are severely compromised when they won't even give you a copy of your reports.  Let me know if you are anywhere near Toronto.  I know someone there who may be able to help.

[CanadianGal33]

No i'm nowhere near Toronto unfortunately.  The neuro thinks i have a slight case of neuralgia and that's why he's treating me with the pills...they're supposed to heal the nerve.  I still think it's all caused by the sinus infection..is sinus disease the same as infection? And YES the medical system is horrible here...they diagnose you with something and then don't want to explain what it is they're diagnosing you with....it's horrible and frustrating!  I can't take the pain...it gets so bad sometimes it feels like half of my head is swollen in side and burns something fierce!  

[angelica1]

I see by your post that the ENT said he would do surgery i the future if the Rx by the neurologist didn't help.  But what kind of surgery and what for.

I have been on antibiotics many times for sinus infections, but if he doesn't think infection is the problem, he won't give you any,

Something you can do without a prescription is what is called the Sinus Flooding Procedure with MesoColloidal Silver.  It is antibacterial, anti fungal, and antiviral. Just consists of instilling dropperfuls into each nostril, but only use Meso Coloidal Silver by Purest Colloids, Inc.  Check it out at  www.purestcolloids.com. and www.purestcolloids.com/sinus flooding.  See if they can get it to you in Canada. There are no side effects or dangers.  I am going to start mine again today as I think I am having a problem again.

[CanadianGal33]

I'll have a look at that..thanks.  I used the neti pot but that only seemed to irritate my sinuses and now they're worse then ever. Does your head burn and sting when it's acting up?? And if it's not an infection what could cause it? He thinks because it only looks mild on the CT scan it wouldn't be causing me the pain that i've been having. That's why he won't do surgery until i exaust all other options.  I'm just so tired of feeling like this..it's been 9 months!! At first it was only a numbness in my face and head which was bad enough but this stinging/burning/throbbing is going to drive me insane.  It's so bad when i'm in a place that's air conditioned i want to take my head off and throw it away...it's HORRIBLE! Do you have pain with yours?

[Samguil]

Hi CanadianGal33; I have my own myoclonus post but just read yours and realize your situation is much worst then mine. I would go along with Friggy and  suggest that this could possibly be a fungal infection in the sinus. May I ask you the following question;  You said you have had this for 9 months; have you been working with vegetables or fruits in the soil last summer or last fall?  The reason why I ask this is because there is a notorious class of fungus called rhyzopus which are often found in the soil, or rotten fruit  and can cause serious  head inflammation. Altough I have not learned this in my class, I suspect that dirty  hands in contact with the nose and the lower sinus is a good mean of transmission. I don't know if friggy has something to add to that.

[CanadianGal33]

No i haven't been working near any fruit or any vegetables at all.  If it was fungus wouldn't they be able to tell that from the sinus CT scan i had?  Can fungal infections move to brain like bacterial can? That's my worst fear is they won't diagnose this soon enough and it'll be too late.  I'm not sure where i would have gotten a fungal infection...i'm praying that that isn't it.

[Samguil]

I am doing some research. I will come back to you soon CanadianGal33. Let's keep hope.

Samguil

[Samguil]

You were right; the ENT test would probably see a fungal infection, I presume.
So if it's not infection, maybe it's a a severe allergy. I don't want to overfocuse on the whole fungal issue; but  the air conditioner caught my attention. I have read reports of people with severe numbness, burning near the eyes after being exposed to Cladosporium. Have a look here: http://74.125.95.132/search?q=cache:91kPCLF1CncJ:www.allergyconsumerreview.com/mold-testing.html+house+basement+Cladosporium+allergy+burning+eyes&cd=1&hl=en&ct=clnk&gl=ca

Cladosporium is known to growth inside air conditioner. A quick way to know whether it would be a fungal allergy related  to the air conditioner would be by being shortly exposed to a brand new air conditioner that has none in it. If the cold air is still there but the sens of numbness is gone, it could mean something.

[CanadianGal33]

It could be some sort of allergy i guess...i do have allergies to dogs and dust...my nose isn't running or stuffy though, that's the confusing part. I thought with all sinus issues you'd have a stuffy or runny nose.  I don't live with an air conditioner....it's every air conditioner or even cold air.  It seems after breathing in cold air for a while my head burns and stings. The only think i could think is it would be sinuses because that's where the air would enter my head.  I'm so worried about this speading either to my skull or brain. that's the hardest part. It's been 9 months so it's had to do some serious damage by now you would think.  And from what i read it seems they can tell the difference between fungal and bacterial infections on a CT scan.  He didn't say infection, just mild to moderate sinus disease whatever that means!  I'm just so confused and so very frustated and scared.  And tired of feeling like this...the stinging in my head is the worst...the numbness i could take.  I wish it would go back to numbness even though at the time i hated that also.

[Samguil]

Allergy is not necessarly stuffy nose. Allergy means having an immune response (defense system) to just about any material. The best example I can give you of  an allergy without stuffy nose is a skin allergy. So some people skin turn red or growth blimps whenever there are expose to a material, like metal,copper or other stuff. As I say , all of this talk does not resolve your own problem unfortunately. But it could perhapds help to get on a potentially good track.

[angelica1]

I am at a loss for words right now.  Just can't figure it out, bet then again neither of us have any helpful information to go on.  Yes, I have sinus pain, but different from yours.  It really comes on when in an air-conditioned store or exposed to any cold air.  Whatever you have, that should be a significant symptom to help any dr. in diagnosis.

[CanadianGal33]

so you pain acts up when in air conditioning and cold air? That's exactly what mine does...sometimes it can be mild any other time but when i'm out in the cold or in air conditioning for more then a few minutes it feels like the left side of me head swells up inside and stings and burns like crazy...is it the same for you? or is it more of a headache feeling?

[angelica1]

The feeling of your head swelling up and burning and stinging is not like what I have with the chronic sinusitis.  What you tell me of your symptoms sounds like it has to be related to nerves or blood vessels.  It is wierd, but your neurologist should be able to figure it out.

Some other ideas to consider in the meantime:  A cranial sacral therapist;
                                                                      A cranial Osteopath
                                                                      A prolotherapy specialist
Prolotherapy is injection of "trigger points" anywhere in the body.  I have had then for TMJ and other things with success.  He even injected some points on the back of my head, occipital area, with relief of pain and aching.  Google in Prolotherapy and see what you find.  Where do you live in Canada?  Big city or small town?  I am in Phoenix, AZ and we have everything here, every kind of specialty and specialists imaginable.

[angelica1]

I just received an e-mail from a physician in Toronto that I have e-mailed with on another forum in regard to my own sinus & respiratory problems.  I asked him if these drs. wouldn't give you a copy of your records were just giving you a line of B.S.  Here is what he answered:  There are some formalities that need to go through to get your medical records, but officially they do belong to the doctor's office even if they are records about the patient's health; however, if a patient requests parts or all of the record, it must be provided except in certain circumstances (e.g. with psych patients where seeing some parts of the record may actually result in harm).

Actually, all you need is a copy of your scans.  This is what I suggest and do here when I want a record:  In writing and dated and signed, I hereby authorize and request you to release to myself (NAME) a copy of my CT Scans dated (DATE/DATES).  I'm sure that is the formality my e-mail dr. corresspondent is referring to.

By the way, craniosacral therapy, cranial osteopathy, and prolotherapy in the U.S. are not covered by ins. or Medicare, but I have just had to pay the price for these treatments to get relief.  Any money spent on your health is money wisely invested..

[CanadianGal33]

thanks for all your advice and help...i think it may be that the sinus infection is causing nerve inflammation.....the neuro didn't seem worried because the CT scans were fine..he said i probably had a virus and this caused either nerve damage or inflammation.  The ENT says it's only mild to moderate sinus disease as i've mentioned and he's supposedly really good at what he does.  of course none of this helps me since the pain is still there and getting worse or so it seems.  I live in Halifax NS and there really isn't many options here when it comes to specialized doctors unfortunately.  I've seen two of the best (supposedly)..i have other ideas since neither seemed to help. I may end up getting the sinus surgery and see if that takes care of the issues...hate to do it and then still have the pain.

[CanadianGal33]

Is there any chance you woudln't mind giving me that doctors email address...i'm just interested in what he would have to say about my symtoms (symptoms). If you don't want to i totally understand but if so thanks in advance :)

[CanadianGal33]

Does anyone else have any idea? I'm getting desperate..and SO VERY frustrated!

[angelica1]

I understand your frustration; have had many years of sinus and pulmonary problems and not much help.  Finally went to National Jewish in Denver, CO, and got some excellent help and leads there, mostly on the pulmonary issues.  The dr. I mentioned on a previous post in Toronto, well, I just have a private gmail for him and it would be unethical to give it out; also, he is specialized in internal medicine and infectious disease.  You are where you need to be with the ENT and neurologist.  You know, there are a lot of cranial nerves, and I don't have much knowledge about them and that's why I suggested the cranial osteopath, cranial sacral therapist, or prolotherapy.  By the way, I have had 9 sinus surgeries, 4 were minor and 5 were endoscopics.  I still have to take very good care of my sinuses with irrigation and treatments.

[CanadianGal33]

what was the sinus surgery like? i may end up going that route just in hope that it'll fix all of this...he did say i have mild to moderate sinus disease and he would do surgery if i didn't find another solution.

[angelica1]

You need to ask the dr. what type of sinus surgery he would do.  There are many kinds.  My last was about 10-11 yrs. ago and it was endoscopic (Through an endoscope tube); splints were placed in both nostrils for a week which means you can't breathe through your nose for a week.  Pretty uncomfortable.  They say people who might have difficulty getting through that should be given Valium for that time.  Ah, but it is heaven when the splints are removed.  But things have changed a lot in recent years in this type of surgery so you will have to ask him all the details.  This endoscopic surgery is known as FESS (functional endoscopic sinus surgery).

[mindme]

Hi there,
Im in the US, but going through something VERY similair. I started out with a cold, which turned in to my ear KILLING me and headache, never went away.Tried antibiotics, and still stayed. I have only gotten sicker over the last 3 months. Had 2 ct scans, MRI, I have seen now 6 ENT's,2 Infectious disease docs, been in the hospital , and NOBODY can figure it out. Some doctors think my nose cartlidge from an operation I had 28 years ago could be infected ? I completely feel your frustration and worry. Yes it sounds like you have an infection as well....

[CanadianGal33]

Sorry to hear that..it's very frustrating to say the least..no doctors i've seen think it's an infection because there's no signs of it...ENT did say mild to moderate sinus disease but didn't go on to explain what that even is....