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Text - NeuroSarcoidosis
My Bald Head after Surgery

3 days after surgery! Sorry it's just the top of my head!

It is said that 1 out of 100 "Sarcoidosis" patients will have "NeuroSarcoidosis". It can affect any part of your head, brain, brainstem, pituitary gland, optic chiasm, and even your sinuses. Most commonly it affects the lungs, heart, liver, and skin.

On January 27th, 1997 I had a "Craniotomy" done by Dr. Wolff Kirsch and his neurosurgery team. It was thought at first that I had a Pituitary MacroAdenoma. It took several days to get the pathology report back. At first it was thought that it was a "Meningioma", but the pathology report diagnosed it as "Sarcoids". They actually removed 2 granulomas.

GRANULOMA: A special type of INFLAMMATION characterized by accumulations of macrophages, some of which coalesce into "giant cells." Granulomatous inflammation is especially characteristic of tuberculosis, some deep fungal infections (like histoplasmosis and coccidioidomycosis), sarcoidosis (a disease of unknown cause), and reaction to foreign bodies.

I remained at Loma Linda University Medical Center for 1 week. I also developed "Diabetes Insipidus". My pituitary gland was not producing the Antidiuretic Hormone, "ADH". I was given injections and/or nasal spray.

At this time I still have sarcoids wrapped around my pituitary gland, pituitary stalk, and optic chiasm. I had no vision problems prior to the surgery, but now have a slight distortion on my right eye. There is a possibility that it was bruised and might correct itself. At this time I have seen an Endocrinologist, an ENT and a Radiation Oncologist. I still have to see a Neuro-opthamologist and a Neurologist.

On December 5th, 1996 I had to have surgery on my sinuses. It was thought that I had "Pansinusitis". My sinuses had to be cleared before I could have the Craniotomy done. Now it also appears that I actually had "Sarcoids" in my sinuses. During my 3rd MRI on January 23rd it was found that my sinuses were infected again prior to the Craniotomy. Dr. Kirsch said they were going to take every precaution and go ahead with the surgery on January 27th. Another MRI done after the surgery at the hospital showed that I still had them. Doesn't this sound like a lot of fun…I don't think so.

At the present I'm taking Steroids - 40 mg. daily, DDAVP, Synthroid .02 for hypothyroidism (30 years) and possibility radiation in the near future if the sarcoids haven't lessened.

Just a note: I think of everything that I've gone thru' with all of this, and the one thing that has caused me more stress than anything is dealing with some of my doctors, not to mention the weight gain of taking steroids. Dealing with the doctors have been ridiculous with the cancellation of appointments, especially if that appt. was 3 months in advance; also waiting just to see a neurologist (I've been on a waiting list just to get an appointment and it's already been a month and a half!!!) This is just to get an appointment!! Then certain drs. say they are going to do this and that and it's never done! I do mean never!! What's sad is that I'm not the only one that's going thru' this. I can tell you horror stories, but I'll spare you at this time! The bottom line is that they have caused me more stress than any situation in my life right now. I feel for the elderly people and those that don't fight for their medical treatment. I'm a fighter and ask questions like crazy, and am usually prepared when I go into an office. Doctors have never intimated me as I use to work with them as an ER Tech, an Ambulance Driver, Medical Staff Secretary and other jobs I have held in hospitals. How I feel for those that just sit by and question nothing and take everything the doctor says as gospel truth!


On June 6th I had another MRI done. I was excited when I got my report back. The granuloma's on my sinuses, and pituitary gland shrunk by 1/3rd!! I finally saw a local neurologist, Dr. Raja Boutrous. He phoned today, June 30th to tell me he spoke with Dr. Sharma of USC. I was concerned because Dr. Sharma told him to put me on Prednisone. I'm currently on Hydrocort, a milder steroid. I thought if Hydrocort was able to shrink the granuloma's by 1/3rd then why get Prednisone which has more side affects. He also wants to put me on over 80 mgs.of Prednisone!!! That's definitely scary!! After 4 weeks I'm suppose to do another MRI. By that time I won't fit in the MRI machine!! If nothing changes then they will put me on the other drugs. I can't figure out why if the Hydrocort has already caused them to shrink by 1/3rd. I'm fighting this one too! My main concern is that Dr. Boutrous did not tell Dr. Sharma everything because Dr. Sharma said I should see a Neuroopthalmologist to rule out optic nerve involvement. This had already been done! We'll see what happens... DOCTORS!

Aug. 27th, 1997: Today I decided to quit the Prednisone. Since I started it all I do is sweat! It's like having hot flashes all day long! Also noticed that I had problems with my muscles...they would do their own thing. When putting make-up on my fingers would close by themselves, and in getting up in the morning my feet would do all sorts of contortions, like my hands and fingers would. Well...I'm going back to the hydrocort. On Aug. 6th, one day before starting the Prednisone I took an ACE level test and that came back at 19! This was before the Prednisone...

March 28, '98: Well...a lot has happened, yet really nothing at all. I finally had all my doctors trained and my husband got a new job. We gave our house back to the bank and moved to San Diego County on Oct. 25, 1997. Now I have new doctors who DON'T treat sarcoidosis. My new neurologist only takes care of the MRI's, the endo only takes care of the hypopituitarism, no hormones and diabetes, both Insipidus & Mellitus. He couldn't even tell me what my new ACE level meant that was requested by my new neurologist. Neuro still hasn't even given me a call on that test. My results were 102. Everyone keeps telling me I have to see a Pulmonary doctor. I keep telling them I don't have neurosarcoidosis on my lungs. Can get very frustrating!

Check out some of these sites for more information on Sarcoidosis, as well as other sites that I have listed.

Misc. Websites (Unrelated to Sarcoidosis)

Will Update soon. Under Construction

Sarcoidosis Support Chat on AOL

AOL brings you our established Sarcoidosis Support Chats where we all join together and talk just about anything to do with sarcoidosis.

  1. Sarcoidosis Worldwide Support Group

    The Sarcoidosis Worldwide Support Group, is the first chat group of its kind on AOL or the internet. They are affiliated with the National Sarcoidosis Resource Center, the Sarcoidosis Research Institute, listed with NORD (National Organization of Rare Diseases) and recognized by the American Lung Association, the Arthritis Foundation, and many others.

    Click here to find out what the Chat Schedules are

  2. Sarcoidosis Mutual Support Group Chat   (Another great AOL Support Group!)

    Times and places:

    Thursdays at 10PM EST, Equal Access Cafe, Keyword - PEN
    Sundays 9PM EST, Pain Relief Channel, Keyword - RELIEF.

 If there are any others out there that know of others that have been diagnosed with "NeuroSarcoids" or similar please email me.

Email me

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