Truth about cure from surgery.

[jodywilliams]

Hi,

 

I'm new to the group and to being diagnosed with Cushing's. I have had symptoms for over 10 years but was being treated for high blood pressure, sleep apnea, diabetes, broken ribs twice, weight gain that I could never lose no matter how much I worked out and dieted. Doctors just said I need to work harder "it is a simple formula what you take in has to be less than what you burn up, work harder and eat less." I wanted to punch them sometimes.

 

Anyway I had to have emergency surgery for a ruptured colon this fall and that is when someone finally looked at all the symptoms and the stretch marks on my stomach and put it all together. Since then I have been reading everything I can about Cushings. I have had a lot of test run and the MRI showed a 5mm x 6mm x 3mm pituitary tumor on December 24th (Merry Christmas).

 

First is this a large tumor? I have seen post of people with much larger tumors. Does the size of the tumor affect the difficulty of the recovery? If I have had this for 10 years or longer, will that make the recovery harder and why would the tumor not be any bigger? Is the tumor still growing?

 

Most of what I have read from medical center web-sites like John Hopkins and NIH seem to indicate that with successful surgery, a full recovery to pre-cushings lifestyle is likely. However when I read the post here and look at the cushing warrior area I see multiple surgeries with most pituitary patients having to have BLA surgery later. What is the truth? Can I expect to be feeling all better after the surgery or is this something that I may have to have multiple surgeries and eventually have BLA too?

 

Thanks

 

Jody Williams

[wolfie2012]

Oh man, I wish I had an answer for this question, but I don't. I don't have a diagnosis, let along a cure path yet but I have already had this whole conversation in my head and with my husband. I hope it goes textbook perfect for you and you are cured quickly and completely!

 

Mag

[twinkie]

Hi Jody and welcome! You are in a good place for support, information and understanding. I would say your tumor is one of the larger ones I've seen here, but I have seen bigger ones. These types of tumors are generally very slow growing.

 

I've been here for over 6 years and from what I've seen, a lot depends on whether you are cyclical or florid. It seems those who are florid have hard, easy to identify and remove tumors while those who are cyclical have snotty-type tumors that can be woven throughout the gland. This makes it difficult to gain a cure.

 

In fact, most doctors I know don't even use the word cure but the word remission instead.

 

I myself, had one pituitary surgery, wasn't cured, and had a bla 4 months later. I am cured. There are several folks here who have only had to have one pit surgery and have gone on to live good lives. But again, doctors don't use the word cure anymore when referring to a cyclical patient.

 

It's good to be informed. It's good to be hopeful. As I said, I have been free of the beast for 4 years now and have never looked back.

 

Best of luck to you and please keep us posted.

 

love,

melly

[casperslove]

That is quite a good sized tumor. Mine was only 2-3mm.

 

But Melly's right. Being cyclical vs florid makes a big difference. Majority on this board are cyclical, so that's why more surgeries are needed. I had 2 pit surgeries & have been in remission for over 4 1/2 yrs now. I hesitate to say the "c" word as I don't want to jinx it.

 

Having an experienced surgeon who knows what he's looking for & how to remove the tumor just so, is very important. Make sure you find out how many he's done. A handful just won't cut it. (Literally & figuratively.)

[TomClive]

Anything smaller than 10mm is classified as a Microadenoma and so is pretty small really. Yours sounds about the same size as mine was although when it came to surgery I think the surgeon said mine was fragmented so it was a little tough to get it all out. I'm seeing him next week for a follow up appointment so will see what he says. The following week I'm seeing my Endo for blood work etc

 

I had surgery in September and so far things are looking good. Things were clear in the MRI, my blood tests are looking normal, my blood pressure's down, I've lost weight, my ankles aren't swollen and I've lost the hump and moonface. Touching wood I can say that I'm getting my life back. There isn't a part of me that Cushing's didn't effect but thankfully it's all looking a bit better now.

 

Recovering physically from surgery and the adenoma isn't the tough bit. It's the recovering from Cushing's and the devastation that the Cortisol causes that's the tricky bit.

 

Larger tumours are easier to spot on MRIs and can cause problems like putting pressure on your optic nerve which makes you lose peripheral vision but I believe surgeons have a better chance of getting everything out without leaving any damage.

 

Good luck with everything !

 

Tom.

[BDen13]

Welcome to the site.

 

Keep in mind that the people who have successful surgery are less likely to become long-term members of this site, so the user base of this site probably gives an unfairly negative representation of those who have had surgery. The fact is that 80% of initial pituitary surgeries are successful.

 

Your tumor is average sized as far as pituitary tumors go but a little bit on the large side when compared with the tumors that typically cause cushing's.

 

Yes, it does keep growing.

 

Recovery will be tough as the cortisol has done a lot of damage to your body over the years. It's hard to build that back up.

 

Do you have a plan for your surgery? It's essential that your surgeon to have done dozens if not hundreds of these surgeries if you want a successful outcome.

[jodywilliams]

Thanks everyone. I am being referred to NIH in Maryland sometime this month. My doctor has sent all my test results to them. They have said they will admit me for a weeks worth of testing before doing the surgery.

 

How long will I be in the hospital after the surgery and how long does someone usually stay out of work?

 

I feel like I have a ton of questions. Thanks so much for answering them for me.

 

Jody

[MaidM]

I had my adrenal surgery at NIH. Feel free to email me if you want to chat. Marian_dave@yahoo.com.

[Kristy]

Hi Jody,

Post-op, I was out of work about 8 weeks, primarily because I wasn't stable enough to go to work sooner. I am glad you are going to NIH! I think you will be well cared for! It is true that many of us cured cushies don't stick around. I quit posting regularly a number of years ago. Life just had me busy, and this is a good thing! I had the microadenoma that was left to grow while the doctors squabbled about me having or not having Cushings over a 5 year period. I ultimately was diagnosed with Cyclical Cushings in 2004. Unfortunately for me, the tumor grew all throughout the gland during this time. Post surgery, the tumor grew back in fragments. For me, radiation using gamma knife was the right choice instead of a second surgery. I've continued to work and I'm working on my MBA. I haven't returned completely to pre-cushings status (I think the weight loss is the hardest), but have major improvements. For me, having my mind back in working order has been the most blessing. Take care, and keep positive for the days ahead!

 

Kristy

[jodywilliams]

More questions if you don't mind.

 

I have been having problems with memory issues especially names and how to get to places in the last two years. This is particularly bothersome because I used to do public speaking as a motivational speaker. I'm not sure I could do it now. Does this improve post surgery? I hope so, I want to teach people about this disease and help others.

 

I also was diagnosed with glaucoma this summer. The vision test showed diminished peripheral vision. Can that be reversed or not? Assuming that is due to the pituitary tumor, will that make the surgery more risky / difficult?

 

It seems that many people who have pituitary tumors have multiple surgeries and eventually have BLA. Is this due to new tumors on the pituitary gland and adrenal glands or have the adrenal glands been so damaged from years of too much cortisol that they aren't able to recover?

 

Should I get a Medic alert and if so do I say adrenal emergency on it? What else should I put?

 

Thanks.

 

Jody Williams

[casperslove]

More questions if you don't mind.

 

I have been having problems with memory issues especially names and how to get to places in the last two years. This is particularly bothersome because I used to do public speaking as a motivational speaker. I'm not sure I could do it now. Does this improve post surgery? I hope so, I want to teach people about this disease and help others.

I didn't have problems with my memory too much before surgery, but I've found I struggle post op. Names & numbers don't stick. I went back to college to learn photography & I learned I need to do & not just hear things to learn.

 

 

I also was diagnosed with glaucoma this summer. The vision test showed diminished peripheral vision. Can that be reversed or not? Assuming that is due to the pituitary tumor, will that make the surgery more risky / difficult?

Hmmm not sure on this one myself. If it is due to the Cushings, it should fix itself.

 

It seems that many people who have pituitary tumors have multiple surgeries and eventually have BLA. Is this due to new tumors on the pituitary gland and adrenal glands or have the adrenal glands been so damaged from years of too much cortisol that they aren't able to recover?

Usually the tumors are still there. The tumors either grow back or the surgeon just didn't get it all. That's why you need a good surgeon. After surgery the doctors wait to see if you "crash." That means they want to see your cortisol levels go as close to 0 as possible. How your body handles weaning cold turkey basically. My first surgery, I didn't crash. My second surgery, I got below 0 before they gave me steroids to compensate & wean down manually. For some people, they have tumors on both the pituitary & adrenals. They only realize it after the pit tumors are out.

[BDen13]

Also it is not true that "most" people require multiple surgeries. Only a small percentage do.

 

I took a month off work but I work from home. I probably would have wanted a few more weeks if i had to go into an office.

 

Wait until after your surgery to order a bracelet. I got an electronic one so I can change it.

[jesslp]

Glaucoma is the only part I can comment on. Damage caused by glaucoma is not reversible but you can stop the glaucoma from creating any more damage. Keep using the eye drops or whatever treatment your doctor has prescribed. The only way I can imagine that Cushing's would cause glaucoma would be if it also caused you to have very high blood pressure, in which case if the Cushing's were cured and the hypertension reversed I could see how the glaucoma would go away, but I'm not an expert so I'd suggest following up frequently with your doctor to best decide how to handle your glaucoma.

[alicia]

I think your question is a very valid question and one that I still wonder from time to time.

My tumor was believed to be about your size in scans, but was actually 10 mm. I think that depending on the size of your tumor and location it can influence how many hormones are affected.

I am 4 years post op next month and have had the best few years of my life. Recovery was very long for me, but I had more than my share of complications (about 1 1/2 years), but almost everything is better now.

I am panhypopit and probably always will be, but once it is adjusted it is a little annoyance more than anything. Due to lack of hormones I am only down 35 pounds from my high. ( I should be down another 50-60). That is really my only complaint.

 

My memory problems are worse post-op. I can't for the life of me remember numbers! Everything else is about the same.

Alicia

[twinkie]

My memory got so bad before surgery that it frightened me. Fortunately, it cleared up after the bla. Hugs!

 

love,

melly

[StephD]

I too, like others who have previously posted, found that my memory and ability to recall certain pieces of information was suffering prior to surgery. What struck me was that I "searching" for words that previously would come to mind without any effort. I can say, 9 months pituitary post-op, it's gotten better. It's still not back to where it used to be but it's easier to find the words I'm looking for than pre-surgery.

[MCF]

Also it is not true that "most" people require multiple surgeries. Only a small percentage do.

 

 

 

 

I don't think the percentage is small at all.  http://home.comcast.net/~staticnrg/Cushings/LongTermRemissionRates.pdf

 

 

"Conclusions The overall remission rate of 56% (35/63) at 9·6 years

follow-up is disappointing and merits some re-appraisal of the

widely accepted principle that pituitary surgery must be the initial

treatment of choice in pituitary-dependent Cushing’s syndrome.

Following pituitary surgery, careful ongoing expert endocrine assessment is mandatory as the incidence of relapse increases with time

and also with increasing rigour of the endocrine evaluation. A significant number of our patients were shown to have relapsed with

a cyclical form of hypercortisolism"

[BDen13]

I was not talking about reoccurances, I was talking about success rates of initial surgery, which from that report, are around 80%.

[MCF]

Actually, a lot of what's labeled recurrence is failure to attain surgical cure.  Criteria and definitions of "cure" are kind of variable from surgeon to surgeon and they have an incentive to paint the rosiest picture of their own success rates.  Over the years that I've been reading here and elsewhere, the cure rate from first surgeries is pretty low.  That's not due to lack of surgical skill or care choosing surgeons, just the complex nature of HPA axis disorders and the lack of firm borders and definition of pituitary tumors as compared to other types of tumor.  Then you have hyperplasia of the pituitary gland or in adrenals that have been overstimulated for years by an overactive pit tumor, still causing symptoms.

 

If someone sees a cortisol rise weeks after pit surgery, it is often labeled recurrence if they had an earlier drop post op.  But so many folks are cylical before and after... 

 

Conversely, research has demonstrated that folks who *are* cured may not see their cortisol drop until weeks post op, though I doubt any surgeon is failing to count those as cures, too, if they don't require additional surgery.

[AUNTSHA]

There is no clear cut answer to anything involving Cushings. Everyone's journey and outcome is so different that nothing anyone says can be taken as gospel. I have gotten a remission out of one surgery. It also took me a long time to feel like myself taking off the weight and not feeling vulnerable physically. My memory was affected by the Cushings and I have not gotten back everything. I also cannot pull words and answers out of the air now and I do word puzzles to keep my mind sharper. it helps a little and I am older so I always have that excuse too.:-). For the record I had a microadenoma and when he operated he removed suspicious tissue from the pituitary. We had to wait until the pathology report to come back to know if indeed there was tumor and if it was an ACTH producing tumor ....and stay tuned tuned to see if it was totally removed and if little cells remain to give you a reoccurance. Even with small tumors they don't know if they are completely successful and time is the only way to tell that story. That is Cushings and how it might play out is up in the air. Sure it can come back even after long period but I am well now and I don't dwell on it anymore. The longer you go the better the chances of staying in remission...I am hopeful. Good luck and stay positive.