A New Discovery About Cushing's!

One of my Facebook friends and a fellow Cushies posted the following to her blog and then posted the link to one of the Cushing's forums today.  Instead of simply posting my own write-up of the material I felt it best she gets the credit she deserves for both bringing this to our attention and the well-written post she put together.  So here is the link to her post:

What We Know About Cushing's just changed!

One of my Sister-in-laws has Cushing's and had the surgery.  Her tumor was in the Pituitary gland and there is no evidence the last I heard of a return of the tumor though there has been a return of the Cushing's Disease.  Could this be the answer?

Catch you later, my friends and readers!

Ring, Ring, Ring: Am I going crazy/

Hello there again from Cushie land!

Okay, do you hear a ringing in your head all the time?  Is it something that just won't go away and just keeps on nagging you day and night no matter what you do?  If you do have it you may well be a victim of Tinnitus.

Tinnitus is a constant ringing in the ears which just goes on and on and on, sometimes to the point of driving people crazy.  People are often driven to all kinds of doctors and take medications for it that only work in the short term if at all.  They try alternative medications, treatments,  such as acupuncture, all to no avail.  That's because when it's that bad there is really nothing we can do shy of firing a bullet through our gray matter.

That's because unless one has worked in an environment which was extremely loud without adequate hearing protection the problem isn't in the ear at all.  And to add insult to injury the medical community has known this since the 1950s, but hasn't adequately trained the doctors in the trenches who have to deal with the patients who have it.  The problem is deep in the brain where communication throughout the brain takes place and is a sign of damage to that system of some sort.  And the kicker is the cause of the damage.

Cortisol and other anabolic steroids are chief culprits.  I found this out when I listened to one of those ads out there promising a cure for tinnitus.  You know, those nice little ads from somebody who went on this big journey looking for a cure to his own problem and discovered a miraculous cure he is willing to peddle to you and me...for a hefty price.  In this case, the man offered up proof of what he was saying, genuine studies which I checked out.  And boy did they check out!

The problem goes back to the old statement of too much of a good thing.  Those of us with Cushing's do know that the cortisols have several uses in the body.  They help regulate our blood sugars.  They repair damaged tissues.  When women get pregnant they do several things to protect both the mother and the baby throughout the pregnancy.  But the problems take place when there is either too little or constantly too much of them in our system, hence both Cushing's and Addison's Diseases.

Where they come in where today's topic is concerned is that when there is too much in the body they can get into the brain and damage the communication system within the brain itself.  Those with Cushing's often become forgetful, especially of short-term items.  They can also experience mental disorders of the sort which involve the communication within the brain if predisposed towards them genetically to start off with.  But the early symptom if such damage which often gets missed is the ringing in the ears of tinnitus.

What the fellow was pushing was an herbal concoction designed to suppress cortisol production on the assumption that was the problem.  And perhaps it might work if caught and treated early on.  I guess a doctor might have better information on that if any studies have been done.

I went on to one of the Cushing's support groups I'm on and asked them if they had tinnitus.  The answer was an overwhelming yes!  So it would appear that it might be another symptom to add.  I also asked those who'd had surgery successfully to cure their Cushing's if the tinnitus was resolved as well.  Sadly it wasn't for most.  So the best thing to do is to get treatment as early as one can if they notice the ringing and if one is on steroids or know they have Cushing's they need to mention that while they're at it so the doctor can factor that into one's treatment.

That's it for now!

Back Pain and Cushing’s

 

Sorry for not posting something for a while, but I’ve been kind of busy.  My wife, Debra, and I took a trip to see some friends in Texas.  While there this picture of us together was taken:

This is probably one of the better pictures taken lately which showcase my truncal obesity really well.  And that is part of the why on today’s subject.  One of the effects that Cushing’s has is that it causes back deterioration and consequent pain.  There are several mechanisms to the end.  One obvious one is the stress the weight places on the spine.  The other two are that Cushing’s leads to general bone deterioration often causing osteoporosis and deterioration of discs in the spine on top of that.

I do have spinal deterioration and a ruptured disc to add to the mix.  Although I started having back pain as far back as the early 2000s, it was in 2009 that I really had the extent of the problem brought home to me when I was struck by back pain so severe that I was bed ridden for a month and spent several more in a wheelchair.  It wasn’t until I managed to bring my weight down enough to fit into an MRI that the ruptured disc was discovered.  It presses onto the sciatic nerve.

At the time of the 2009 attack I was refused hospitalization on the grounds that I was not a candidate for surgery, though how they came to that conclusion without a proper evaluation is beyond me unless they were basing that opinion on my having a large Abdominal hernia from a previous surgery.  So on that occasion I was crammed screaming in agony from the pain into our small car and sent home, after my doctor had sent me to the ER for admission in the first place.  And, yes, I’m harping.

A couple of days ago I woke up in serious pain and gutted it through the first day hoping it would go away.  But the next day I went to see a doctor and have been taking a painkiller and a muscle relaxer which both make me kind of sleepy.  That’s one of the things which can be done.

There is also what are called TENS units, which use a small amount of electricity to neutralize the pain impulses sent up the nerves.  There is also surgery of course, which I think the doctor I saw thinks may be necessary since he’s asked me to follow up with my orthopedic surgeon.

Sadly, the options are growing fewer.  One of the research boards tasked with recommending standards of care under the new healthcare act in the United states recommended a few months back that TENS units should no longer be used in the treatment of back pain.  That’s sad because they are a relatively inexpensive mode of treatment. And it is being recommended that access to narcotics for those in chronic pain be even further restricted.

For a Cushie back pain can pretty well be counted on at some point if one’s condition remains untreated for any real length of time.  Just the strain from the added weight will cause it if nothing else.  Your doctor will determine if you need to be referred to a specialist, more often than not an orthopedic surgeon who will evaluate your condition and decide if surgery is an option or not.

We’ll see how it goes for me this time around.

Cyclical Cushing’s Syndrome

Hey there everybody!

Today one of my Facebook friends posted a link to a post on the CSRF website about Cyclical Cushing’s syndrome:

Cyclical Cushing's Syndrome

You have to wade through the usual Doc speak, but it’s worth the effort.  To summarize, Dr. A. Brew Atkinson is part of a group who noticed that some patients were cyclical way back in the 1950s and has been studying the phenomena ever since.  What they concluded is that a significant number of Cushies, upwards of one third in one sample of Cushing’s patients were cyclical, making it more common than doctors think.

They also noted the difficulty diagnosing for several reason, one being the need to do extensive testing, which is expensive.  Another reason is that cyclical patients do not respond to some tests, such as the dexamethasone test, in the expected ways.  That is something those of us with the disease know all too well!  So they suggested those patients with Cushing’s features yet who don’t have the expected test results should be considered for more extensive testing.  They also suggested certain testing, such as AM long-range urine or long-range serum cortisol testing with a suggested 28 consecutive day period which will catch most of the known cycles they’ve documented.

As noted, that is kind of expensive and don’t be surprised if insurance companies balk at covering the cost.  In my case we just happened to catch both peaks and troughs in the standard testing done, so I know I’m a cyclical Cushie.  What I don’t know is what pattern I fit because no testing occurred to establish my pattern.

If you didn’t already read the article please read the article if you are trying to find out if you or a loved one has Cyclical Cushing’s or if it was suggested to you.  And if you or your loved one may have it please persist in getting the right testing done. 

My first Cataract Surgery Is Done

Greetings again my dear friends and readers!

My first cataract surgery is done.  I’m a week post-op as of today and everything went fine.  There were no complications and my sight is already better.  I have the second one done next week.

The way the process goes is that the patient has to scrub their eyelids with a special pad every night and start adding medical eye drops to their eyes starting two days before surgery.  When the patient goes into surgery the staff places him or her under sedation and adds more drops to the eye, including those which will anesthetize the eye for the surgery.  The doctor then makes a tiny incision into the eye and breaks up and removes the affected lens with a special tool.  The doctor then replaces the lens with an artificial one.  Be advised that insurance generally will only cover the cheaper monofocal lens, so you would have to pay out of pocket for the multifocal ones.  It’s all over in a few minutes and I was in and out of the clinic in a little over an hour.

After the operation there’s no more scrubbing the eyelids as this can cause the incision to reopen with disastrous consequences.  The patient wears a guard over the eye the first day and then uses it for sleep and naps.  The drops continue afterwards, in my case for about six weeks.  One avoids lifting heavy things for at least the first week after and avoids bending over or any other activity which may increase the pressure in the eye.

It’s great to be getting it over with.  I’ll let you know how it works out when everything is done.

Wikipedia On Cataract Surgery. 

Cataract Surgery, From An Opthalmic Surgeon's Site. 

Hey there my friends and readers!

This is just a short post to let you know what is going on.  This coming Monday, Dec. 3, 2012 I will have my first cataract surgery.  Then on the 17th of December I'm supposed to have the other one done.  So I am going to stay clear of the net for at least a few days after surgery to give each eye a chance to heal properly.  

Once I'm past the surgeries I will be back.  My wishes for a blessed holiday season to all!

Stanley Loper

The Moon Face

Greetings from the Original Zebra!

Take a look at the following picture of my mother in her teenage years:

 

This is probably one of the best examples of another symptom typical of Cushing’s syndrome, the round, or “moon” face.  The moon face is another phenomenon which often accompanies exposure to high levels of cortisols and is a sign which differentiates the victim of Cushing’s from other morbidly obese people.  Here is a picture of one of my friends on Facebook who has given me permission to use her images:

Here she is now as a confirmed victim of Cushing’s:

This is more typical of how the round face will appear.  This lady gained over a hundred pounds in a matter of months when she developed Cushing’s.  When you contrast it with my mother’s:

It is easy to see how Cushing’s can be a little hard to spot in some stages.  Yet my friend, unlike my mother, is a confirmed Cushie.  So we can see how this symptom of Cushing’s can fall in quite a range.  Yet it is still recognizable wherever it falls within its range.  Mother went untreated and from the first picture of her she suffered from "Mild" Cushing's all her life.  Yet she died at age 65 from the ravages of the disease.

Today’s post was composed on Thanksgiving Day, so here’s to all my friends and readers from this moon face. 

Happy Thanksgiving!

Cataracts and Cushing’s

Circumstances force me to interrupt my planned series for a short discussion on Cushies and cataracts.  I’ve been having growing problems with my sight lately and suffered from eye strain and headaches as well.  One day I noticed that when I closed one eye type on the monitor screen and in printed material simply disappeared.  I already knew I had cataracts in both eyes in the early stages and feared one of them had accelerated its development.  My fear was confirmed and my doctor wants me to have the cataract removed as soon as we can get it done while my eyes are stable.

Cataracts are a condition where the lens of the eyes becomes opaque.  As cataracts develop the patient experiences increasing difficulty seeing.  It will probably be things like not being able to read type which or an eye exam which will be the first clue that something’s wrong.  However, the cataract will eventually cause complete blindness in the eye if left untreated.

The formation of cataracts in cases of steroid treatment and exogenous Cushing’s syndrome (Cushing’s caused by medical therapy) is a well known side affect.  However, research seems to document that cataracts are not a common side effect in endogenous, or Cushing’s caused by tumors.  I didn’t find anything on it, but I imagine that cataract formation or acceleration would be a likely danger with the use of glucocortical steroids such as prednisone for the treatment of inflammation or injury with a patient who already has exposure to elevated levels of cortical steroids to begin with because of Cushing’s syndrome.  That is another reason steroids should be used with care to treat Cushies.

The treatment for advanced cataracts is removal and replacement with an artificial lens.   While reading through the brochure I was given I found out that great strides in advancement in both the surgery and the lenses have taken place since my days as a practicing nurse.  It is now possible in people with no astigmatism, or even certain cases of astigmatism to have such sight improvement after surgery that eyeglasses are no longer needed.  However, most cases of people with astigmatism will still require eyeglasses.

As with any other surgery there are risks.  According to the patient plan I was given they include cornea/retina injury, hemorrhaging, pain, blurred vision, double vision and loss of vision.  Since I’m on clotting therapy the risk of hemorrhaging is especially pronounced and I will probably have to go on a heparin bridge to reduce the likelihood of that complication.  That requires an added week before the surgery can be done.

Naturally I will not be in a position to write for awhile after the surgery and don’t know how long my recovery to the point I can resume writing will be.  But I will be back and will continue with the series I started.

Helpful links:

Do Steroids Cause Cataracts? 

http://ibdcrohns.about.com/od/prednisone/a/Cataracts.htm

Catarcts and Cushing's Syndrome