Cystic AN

[okiesandy]

Does anyone out there have a cystic AN?  I just got back from the doctor and he said I need to have this taken care of soon. Also, I just read that a cystic AN causes more facial problems this doctor said they were easier to take out and the artical said doctors sometimes think they are but the facial nerve is easier to damage.

[wind6]

Mine was cystic too Sandy and my docs told me it was a little easier to take out because they can drain it and make it collapse on itsself giving them a wee bit more room to work.
As you know mine was on my facial nerve so I do have some paralysis problems but I am recovering very well. I hope this helps a little. My heart is with you girl.

[okiesandy]

Sherry,

I just read a white paper that said some doctors think they are easier. However, the chance of the surgery causing permenent facial damage is greater.

I can't remember how long you waited to have surgery after you found out. My face is starting to be numb now. Just started and seems to be getting worse day by day. has been a week now. Today it is like a line from my mouth to cheek and cheek very numb. Sort of like a bad sinus infecton there.

[Jeff]

I had a cystic AN that got very large. The tumor was 2.5 cm and the cystic component was 5 cm. I had perfect hearing, minor balance problems, but a headache that wouldn't go away. I had the tumor debulked via retrosigmoid and later removed totally via translab. I lost hearing, but that is really about it. I have no facail nerve damage at all! I do have a dry eye, but I had a punctum plug inserted that makes me pretty comfortable. I use no eye drops. I have NF2 and another AN that is now 3.5 cm and has some cystic component. My face has not felt right for nearly three years now (it feels as though it is falling asleep form forehead down onto my neck). Some days I want to get this thing out, but my hearing is completely normal, and I am not ready to be deaf yet.
Jeff

[wind6]

Sandy,
 My face went numb in late January...my GP told me it was just stress!! Finally on June 9th I had my MRI and my tumor was found. It was removed on August 2nd. I only had two months to wait. You have to have the patients of a saint to be able to fight as long and hard as you have.     Sherry

[okiesandy]

Sherry,

Absolutly no patients, just a coward about letting locat docs. cut on me. New MRI's off to Dr. B. (that may work yet).  Also soon a consult about CK or GK with local doc.

[jewel01]

I too have a "cystic" lesion on my left hypoglossal or 12th cranial nerve. I am interested in knowing others with "cystic" tumors what explination your Doctors gave you as to why our lesions are cystic and not the typical solid tumor.

I still have not gotten the answers that I have been searching for and I was diagnosed in January of this year. I will be seeing a
specialized ENT in Madison, Wi. for ENG and vestibular work up and they are getting a couple of new Neurosurgeons one of them is "suppose" to specialize in schwannoma tumors. SOOOOO I will be checking him out completely before making an appointment with him.  I will be sending results to Dr. Brackmann as I feel as though he is the man for me at this time. He is a wonderful doctor and I have only spoke with him on the phone three times have not had the privilgedge of meeting him yet.

Julie W>

[okiesandy]

Julie,

The best answer I got was There are two types of tissue, Antoni A and Antoni B. A is comprised of compact tissue and B is loose tissue. When the blood supply is cut off to the tumor the cyst forms (grows?). This is the loose tissue B type that forms the cyst. It is the cyst that is growing usually and not the tumor. It is just formed around the cyst. I was told more blood vessel form around the tumor but can't feed it. Or something like that. Maybe someone else can remember just how it goes. I do know it has to do with the B and cutting the blood suppy off. I do know some of the tumors are blood filled and some another liquid
I will try and find out. All I could think of was how much it had grown in 6 months and wondering again how I was going to have this treated.

I was going to HEI and Dr. B. Now I have an appointment with a doctor to discuss radiation. I had never considered that before.

[russ]

Hi
  Best wishes on the irradiation consult. I believe if sufficient size, radiation is not the way to go with cystic ANs.
  Russ

[okiesandy]

Russ,

Why do you say radiation is not the way to go with cystic AN?  Mine is 1.3 cm now. Up from 1.0 cm in April. I have looked all over for information on cystic AN's and radiation.

[Mark]

Okiesandy,

I would suggest posing the question of treating cystic AN's with radiosurgery on the CPSG Doctors message board and see what answer you get from the physcians there. I don't claim to have any good understanding of what challenges ( if any) a "cystic" AN creates. However, I am aware of a couple of patients who were told they had cystic AN's and did fine with their CK treatment. I think it is a specific enough issue that you should be able to get pretty direct answers from doctors on rather than some of the anecdotal and unsubstantiated  information that gets offered in this forum.

Mark

[Mark]

Okiesandy,

I  went ahead and posted the cystic AN -treatable by radiosurgery over on the CPSG board. Here is the response from Dr. Rosenberg. Hope it helps 


Mark

"Cystic" merely describes the presence of a significant fluid collection (or cyst) within the tumor. While very descriptive radiologically, we don't really use this to determine much. In fact, I just saw a 96 month follow-up from Gamma Knife of a large cystic AN that has shrunk to almost nothing and continues to shrink with each follow-up study. I would not say that being cystic, in and of itself, precludes CK or radiosurgery in general.

William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu

[okiesandy]

Mark,

As you know I followed your post on the CPSG board. Dr. Medbery answered. What you may not know is that I have an appointment with him soon. I was trying to gather some information so that I could ask some fairly intelligent questions. I thought Dr. R.would answer.

I want to go armed with the correct questions. I am so frustrated by the neurontologists I have been to. They are so eager to to the AN surgery they almost pounce on me to do it. I have been to two and consulted with one via telephone. They scared me away from any kind of radiation treatment from the first. After being turned down by my Ins. Co. to go out of network I started researching GK and CK because they are both offered here. Just not by any of the neruotologist. Dr. Medbery has been very up front with every question I have ask. I want to be sure I make the right decision about my treatment. I was not looking forward to having surgery in the first place. Sounds so barbaric.

[stuwald]

I am looking for any information on reradiation of AN. I had FSR with Dr Lederman of SIUH (he is now at Cabrini Hosp in NY). My tumor seemed to react well. It shrank alot, but now seems to be growing again with a cystic portion. Dr Lederman tell me to wait, Dr Adler (developer of CK) tells me to reradiate. Surgeons tell me to remove it. Help!

[Mary]

okiesandy,

When we were going to radiate mom's tumor, Dr. Friedman was furious.   She too had cystic tumors with in her AN tumor.   He said radiation will make the cystic tumors swell and we could have killed mom.   Also when we had the tumor removed, her facial nerve was right thru the tumor.

Mary