Lupus Complications

[Soundy]

I have been wandering around this board reading and trying to figure where to put this...
I have an AN that was found in August 2004 ....3mm and  it didn't grow from then til Oct 2006 but due
to sudden increase in dizziness went in for new MRI in April and found it had hit accelerated growth
and is now pear shape pushing against my brain... I have 40% hearing loss in the right ear, have had
tinnitus since childhood so can't blame that on AN... some twitch to eye and numbness in cheek...

My surgeon told me I could still check out radiation...but the doctor I was sent to that does it said
due to lupus he would rather not as the tumor can become a stick spongy mess ( his term)
and not heal and then require open surgery anyway...So going Trans lab last of month....the neuro
surgeon thought that radiation would be less stressful and not stir up lupus... I had a hysterectomy
in March and it brought on a very bad flare of lupus that put me in bed for about 4 weeks... the lupus
flare was worse than the surgery ... now they have come back with an option to do radiation over
20 or more treatments in smaller doses... but if I start to flare due to treatments they will stop and
I will have to go for surgery... just the 2 hours drive up and 2 hours back to and from Nashville 20 days
in a row  would be stressful enough to trigger a flare of lupus

Anyone with lupus and AN?.... I have to come off my RA and some lupus meds before surgery as
they can increase bleeding...and due to the sudden growth don't really have any wait and watch time left...
Someone on the lupus forum I belong to pointed me to this place...

Want to say thanks for all of the things people have shared here... makes me feel less alone ...

[f706]

Soundy:

I do not have lupus but my wife does and it has rendered her completely disabled.  She fainted in Feb '06 and gave herself 13 breaks in her left foot.  They needed to open her foot up and put things back together with screws and plates and wires.  She is just now healing from all that.  She has a heart condition that will someday require surgery and her cardiologist is doing everything he can to delay that surgery.  Each dr. we've talked with is absolutely against opening her up unless it is absolutely necessary.  While lupus flares are horrible they can be controlled and will go away. I, too, would support you in whatever decesion you make, but I would absolutely take the extra time to consult with another radio surgeon.  If you opted for a single treatment (Gamma, Cyber, Novalis etc) that would be done before any flair could begin.  The question of the "stickiness" remains a mystery to me.  Check the other website, and it will likely be resolved for you.

Good luck

Dan

[Soundy]

I didn't write that very well...my brain and fingers don't always work together to
type things straight... a little clarification

My surgeon has been working with ANs for 25 years so has many surgeries under his belt and
a great record...I have checked him out over last 26 months ... we kick car tires and I have no
problem kicking doctors so to speak... the first neuro surgeon I was sent in to wanted to go in
immediately and take it out ...and gave that as an only option...he had only been certified for
about 3 years

The tumor was 3 mm when found but is now( i will lose you here  ) if you had a pear in front
of you small end up...the tumor measures 3.2cm from top to bottom 2.25cm across narrow end and 3.3cm
at widest point across bottom of pear... and completely filling boney channel and bulging against brain...
until it grew just watching was safer than removing...I had super messed up hormone problems that kept
me bleeding 17-20 days of the month and the AN took off growing we delayed that surgery until I was
losing more blood than my body could replace... they think the hormonal surges
may have played a part in the tumor growing so fast after just sitting there barely changing for so long

My neuro surgeon sent me to the radio surgeon for another option other than open surgery...
it is the radio surgeon , who after making the comments that lupus patients didn't alway do
well and mentioned stickiness that called me back and suggested doing smaller doses
over longer period... the stickiness comment is totally unmedical and I have looked and found
nothing relating to ANs in lupus patients....the single high dose does seem like it would be less
likely to cause a flare...

My neuro surgeon sent me to radio surgeon to try to avoid open surgery because of the lupus..
but the growth spurt has forced me into a place where something has to be done soon

Thanks for the website ... I will check it out and see what I can find out

Sorry for descriptive instead of medical terms... I have memory problems due to lupus brain fog
and  the big words escape me even when I know what I want to say... but the pear shape
I can remember...go figure

[mema]

Hi Soundy,                                                                                                                                   


I had 25 FSR treatments.  The hospital was 2 hrs away from my home.  It had a wonderful facility around the corner called the Hubbard house which was very inexpensive, run by wonderful caring people.  (sort of like a Ronald Mcdonald house for adults).  Meals were included, some prepared by former residents.  When  I went to John Hopkins in Baltimore for consultation, we stayed in a similar housing.  It actually was houses bought by doctors and available for patients.  So check out your facility where you might get radiation and rather then travel 2 plus hrs each day, they may have similar accomodations.                                                                             


                                                                                    mema

[pearchica]

Hi Soundy: I'm sorry to hear about your problems. And you didn't lose me on the pear analogy ( but then I am a pear grower)! My tumor was described like an ice cream cone. I had a pretty big one, but opted for CK treatment at Stanford. And while I was told about the "sticky" side affect by all the surgeons, the radio surgeon (surgery and radiologist) told me that "scar tissue is scar tissue" no matter if caused by surgery or radiation... And as you are used to kicking around doctors like tires, I would give Dr. Stephen Chang a call at Stanford. I don't know if he has had an lupus patients who did cyber knife treatment, but it's worth a phone call. (That is if you already haven't done so via the website). And yeah, despite what you think is lupus brain fog, you made COMPLETE sense to me... soundy, maybe you should be a writer... take care of yourself- Annie

[Soundy]

I have a consult with another radio surgeon scheduled and will move on from
there... did get a response from Dr Medberry...still investigating and my
surgeon is all for that as long as don't take 6 months to figure it out ... he
says maybe 2 more months...I will have to have a Brain Lab scan if I opt
for radiation and if I don't will have a regular MRI in two months if I haven't
done anything yet

Feel like a detective or something

[Mary 117]

Hi Soundy. I  haven't checked the site lately and missed your post. I was diagnosed with Lupus 6 years ago and then AN 2 years ago (with a bout of cervical cancer in-between) There have been issues and non-issues. If you want to talk, let me know. Sometimes it can be a little overwhelming, such as "is that pain from lupus or post-surgical?" I have some new meds for the lupus and they are working great. I also have the post surgery headaches mostly undercontrol. Good luck and hang in there!

Mary

2cm AN-Dr Brackmann Middle Fossa,May24, 2005

[Battyp]

You know that is what I like about his site...someone can always relate to what someone is going through!
Soundy you make perfect sense and we all have a little brain fog when dealing with AN's. I know lupus can be very painful and cause issues, I had an aunt that sufferred from lupus. At one point I had a doctor think I had lupus too.

Hang in there and keep sleuthing you will find the answer you need. Where are you located?

Michelle

[Soundy]

Thanks for all responses... after second radio surgeon left me scratching my head
I decided to go through with the trans-lab removal...

Surgery was on July 2nd and I came home on the 8th... things went well... I am
unbelievably tired which the surgeon told me I would be ... but with lupus fatigue
there is very little difference...

Facial nerve is fine ... I do have a tingle at the tip of tongue and metallic taste which I am
told should pass... total hearing gone in right ear but I can actually understand what I hear
 better because I am not hearing it in echo...balance is better than was expected to be ...
I walk wobbly from the incision that the general surgeon made to get fat to make patch in
head... he cut in bend of leg instead of lower belly... my neuro apologized for it happening...
it has given me more problems than my head... by evening I am ready for hydrocodone but
have been doing well with just Tylonal...Lupus is calm right now ...which I am thankful for ...

To whoever asked ... I am in South Central Tennessee... right on Alabama line ...86 miles
south of Nashville