Do you have headaches?

If so, what kind?  I have multiple endocrine issues: type 1 diabetes, hypothyroidism (Hashimoto's), and now a macro-prolactinoma.  That wouldn't be so bad if it weren't for the horrific headaches, muscle spasms, and trigger points I get in my neck/shoulders/upper back.

The reading I've done (like this paper: http://brain.oxfordjournals.org/content/128/8/1921.full ) suggests that headache is fairly common in people who have pituitary tumors, but I don't find much evidence of the kinds of muscular problems I'm having.  So what kind of headaches do you have?  Do you have muscle spasms as well?  And what helps?

[rumpled]

For my own personal self and research, I liked surgery. Radiation tends to have a bit of leakage which can be an issue plus it effects all the healthy tissue it passes through (unless you get the newest form, proton beam, which is hardest to find and most expensive). It also takes from 6 months to 5 years to work on a pituitary tumor. Surgery has its own risks too - you have to have a really good surgeon or you really risk a lot, and a good one should minimize loss of hormones. But every case differs and some people really need the radiation and have no option (it seems I am getting there) but most if not all the people I know had it have side effects they wish they did not have. BTW there are several forms of radiation - the docs tend to push what the hospital has (it is expensive to have the machine after all) but not what may be best in your case!

I think the headaches are a combo of hormones and structure - there are a lot of blood vessels up there. But what the heck do I know. Mine are gone and my headaches persist!

Have you had an EMG on the muscles?

[rumpled]

I know I have headaches and I know a lot of people with pituitary tumors with the same issue - it is very common.
As for the muscle spasms - that I have not heard. I did get a neuro-muscular issue in conjunction with my pituitary issues - it can happen that separate issues happen that are not related. One does not have to have just one disease or one class (as in you are stuck to all endocrine now!).

I have a bit of a concern though - why are you walking around with a MACRO adenoma - those usually require surgery unless meds work on the to make them micro - aka bring them into a controllable state. Is your endo a neuro-endo and are you at a reputable pituitary center?

[JDaw80]

Thanks for the reply.  I do understand that a non-endocrine etiology may explain my muscle spasms and headaches.  In addition to a prolactinoma-connected explanation, I'm exploring the Hashimoto's link to muscle spasms, as well as some tick diseases which one of the other members here just pointed out to me the other day (this is a great community!).

As to your other questions, I've chosen not to do surgery because of the fact that there is a slow, but consistent decrease in my prolactin level.  It's my belief that I'm somewhere in the gray area between cabergoline-responsive and non-responsive.  I've got 3 endocrinologists, a neuro-surgeon, and a physiatrist all coordinating my care, and although I'm highly dissatisfied with their ability to treat the headaches/muscle spasms, I'm very confident that they would tell me if this wait-and-see approach was inadvisable.  The reputation of the center(s) is probably pretty good (UVA and EVMS).  Thanks again for the reply.

[rumpled]

Your place - at least one - is very conservative from what I know of other patients. It may not hurt to get other opinions. I travel to get opinions - we call it have tumor will travel so we go any and everywhere... LOL...

The surgery itself in the hands of an excellent surgeon is not bad and at UVA you have Oldfileld who came out of NIH - tons of experience! Macro is likely causing those headaches and even a tiny pit tumor causes headaches. The pit hangs in a tiny bony outcropping made to protect it so there is no room for anything else aka cyst or tumor hence pain will happen. I had no abnormal prolactin levels and my tumor was still hiding there - I had two hiding up there. Imaging is not perfect for us and likely, sadly, the tumor is actually larger than it shows.

[JDaw80]

I'm open to any suggestions for alternative treatment sites.  Playing devil's advocate here: the study I linked before shows pain level doesn't correlate with size of tumor, which (to my uneducated mind anyway) sounds like the problem isn't structural, i.e  space getting crowded up there.  More of a chemical or hormonal thing, maybe?  

The other question I have about a structural explanation for the headaches would be why muscle spasms accompany the headaches.  In fact, they're like a tension headache on steroids.  Sometimes I can hear my neck and shoulder muscles creaking as they tighten up.  Weird stuff.

Anyway, I take it you really recommend surgery.  Any particular reason?  Are there any alternatives, besides gamma knife, I mean?

[rumpled]

For my own personal self and research, I liked surgery. Radiation tends to have a bit of leakage which can be an issue plus it effects all the healthy tissue it passes through (unless you get the newest form, proton beam, which is hardest to find and most expensive). It also takes from 6 months to 5 years to work on a pituitary tumor. Surgery has its own risks too - you have to have a really good surgeon or you really risk a lot, and a good one should minimize loss of hormones. But every case differs and some people really need the radiation and have no option (it seems I am getting there) but most if not all the people I know had it have side effects they wish they did not have. BTW there are several forms of radiation - the docs tend to push what the hospital has (it is expensive to have the machine after all) but not what may be best in your case!

I think the headaches are a combo of hormones and structure - there are a lot of blood vessels up there. But what the heck do I know. Mine are gone and my headaches persist!

Have you had an EMG on the muscles?

[JDaw80]

I had not heard of proton beam.  I was only offered gamma knife, and that was at both locations.  Does it have a lower rate of incidental damage?  I really took a conservative route due to concerns that I would lose more function by doing the surgery, especially since the tumor has invaded my cavernous sinus.

Yes, I've had an EMG.  Basically sounded like a staticky TV, constant tone, etc.  I've done CT/MR imaging and some metabolic panel blood draws, but apart from that, the doctors I've seen all want to just prescribe pills and use that as a diagnostic.  It's really hard to get anyone to do more than take my money and tell me I'm weird (direct quote).

[rumpled]

Then both your facilities *have* a gamma knife - is my guess. Do some web research on cyber knife vs gamma and also proton beam yourself. Cyber knife requires many more visits - while gamma is convenient, having one blast of radiation means you get one large dose while sometimes injury can be mitigated for smaller doses over time (does that make sense) but it is inconvenient. There is also a small factor of accuracy and well, where our lesions are, heck, any millimeter can count but so can the facility - as in experience with the pituitary so you have to factor radiation leakage etc.

You get told you are weird! I get the *special* *strange* *out of the box* stuff that drives me nuts. Just figure it out and fix it already dude (or dudette).

[JDaw80]

Thank you so much for the new information.  I'll definitely be taking your advice.  What is the benefit of proton beam over the other two methods?  I have to be able to articulate that to my insurance company, but they are generally open to new ideas.  (Really great company)

Hopefully we can find some answers; in fact, keep me in mind if you ever hear of anyone else who has these kinds of concurrent issues.  

[JDaw80]

Also, do you have any specific recommendations for facilities or surgeons that do proton beam, preferably here on the East Coast?

[JDaw80]

OK, just found out there are only 9 facilities in the U.S.  Any thoughts on Hampton University, as opposed to some of the better-known facilities like Mass General or U of PA?

[rumpled]

Yeah there are not many proton beam places - I would go though, to a place that does a lot of pituitary since experience with the lesion does matter since the location near a lot of major blood vessels and major nerves around. I have not had it just researched and I don't want to recommend. I just did a lot of research.

Proton beam is more sparring of healthy tissue which is the primary bene - a biggie. This means a lot since our lesions are very deep.

[JDaw80]

Just wanted to do a follow-up post to this question.  One of my biggest frustrations during this whole process has been seeing open questions that sound like close descriptions of my condition, only to read to the end of the thread and see that no one ever comes back to explain to the community what they've found out.

If you're having muscle spasms of any kind in any location, by default I would at least look into something called Chronic Myofascial Pain Syndrome.  JFK's personal physician wrote a book on the subject, called Myofascial Pain and Dysfunction: The Trigger Point Therapy Manual.  It's a well-established, widespread condition that, unfortunately, not too many physicians are aware of.  Basically your muscles develop hyper-irritable knots in them, which then refer pain to other areas.  Different trigger points have different pain patterns, so a trigger point in your shoulder could be giving you a headache, etc.

Another great resource that differentiates between Chronic Myofascial Pain Syndrome and Fibromyalgia (while providing great information on both) is Dr. Devin Starlanyl's website: http://www.sover.net/~devstar/  (The key difference between the two is FM entails widespread pain while CMPS entails pain points/trigger points).

Her website even has information sheets you can print out to bring to appointments.  Apparently, she has both CMPS and Fibromyalgia, but was unable to find treatment for several years until she stumbled across the book I mentioned earlier.  She has written a book herself, and I would advise you to go to Amazon and look up any book on trigger points and chronic myofascial pain.  

If you're suffering to the degree that I am, please look into this stuff.  If you have Fibromyalgia, it can be managed very well with the appropriate treatments.  If, like me, you simply have Chronic Myofascial Pain, then you can most likely be cured (pain free), with the provision that you get body work done whenever you start to develop a trigger point again.