Arachnoid Cysts

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Dezzy9_medium Arachnoidcys... 1 post

We have been campaigning for you to do a follow up show on arachnoid cysts from a different angle. But again you did another show showing how apparently easy it is to get an arachnoid cyst diagnosed and treated. Do you not realize there are thousands and thousands of arachnoid cyst patients who can’t find a neurosurgeon or neurologist that will admit their symptoms are being caused by the arachnoid cyst on their brain?

Please I urge you, if you ever want to do another show on arachnoid cysts, ask someone who hasn’t been able to get treated to be on, or ask someone whose treatment was so delayed because of doubting doctors, which has caused their symptoms to be much more far advanced. It’s nice you are putting the word about arachnoid cysts out there, but when hundreds of your community members come to you and ask for you to do a follow up from a different angle and you completely ignore them, it just looks like you want the country to think doctors all over the USA take these arachnoid cysts seriously and operate on them, and that after surgery there are no complications whatsoever! I know the Skull Institute is a good hospital, but there needs to be more than 1 hospital taking a stand for arachnoid cysts! Not everyone can travel to see Dr. Shahinian, so please televise the real issues!

Anyone looking for an arachnoid cyst community online check out the Arachnoid Cyst Network or Arachnoid Cyst Awareness

 

 
0617091225_medium Gary S 1 post

First – our neurosurgeon has been great!  But, our sons cyst has been determined due to the size of the cyst it is not removeable.  We asked many drs if our son could be part of some research for the cyst.  I was told there isn’t any “We know everything we need to know” I asked what causes them? His response " I don’t know?" What symptoms will he have?  his response.. “I dont know?”  How does this make any sense????

Our son is showing signs of developmental delays, ataxia, and right side dominance. We have him in early intervention. We find it surprising that his condition isnt being documented. We were also told that this could be a chromosonal defect, but our insurance wont cover the test.

I would love to see a story that shows what really is happening to so many people.  I have spoken with numerous others who have had their symptoms ignored or even told to see a psychiatrist. 

please look at some friends story on youtube – http://www.youtube.com/watch?v=Zmq9ajBhLsM

Thank you,

-Gary

 
Icon_missing_medium Colinsmom96 1 post

I just wanted to say that I completely agree that they should of did this from a different angle. My son has an arachnoid cyst on his right temporal lobe that was operated on in december of 2007 and a month later the cyst was back. I have drs who are finally admitting that his “mood disorder” is caused by his cyst. Hopefully he will be able to get some real help now.

Gary, from experience I am telling you that the developmental delays are more than likely caused by his cyst. Do whatever you can to educate yourself on these things. If I knew then what I know now, we would of treated my son differently. Hope you find the help you need.

Take care,
Jamie

 
Icon_missing_medium jkasmith 1 post

I completely agree! We (AC SUFFERS) are not taken seriously. We go to these doctors who graciously take our money to tell us there is nothing wrong, just take this medicine or let me give you this shot or … hey we could run this test. To be quite frank – I am tired of being sick and sick of being tired. I am a 31 yesr old mother of 2 little girls who suffers every day with vomitting, severe headaches and neck pain, massive pressure in my head and ears, ringing of the ears, numbness of the feet and hands, loss of vision, seizures and that’s just to list a few!!!
Every doctor is the same. There needs to be more research done and every neurosurgeon should be forced to become familiar with these and their symptoms. I have had 2 surgurys and neither have been successful. It is not fair that I or anyone else should have to continue to live their lives like this. You would really be shocked at the actual symptomatic patients there are who are suffering evey day because noone is taking the time to take us seriously. Do your research….. they exist and as of right now there are not many options available for AC patients!

 
Icon_missing_medium FernB 1 post

I did not see your original May show, but my husband caught the rerun today. I had thought of writing before but this has made it more immediate.  I also had an Arachnoid Cyst which was finally discovered after two years, abut 5000 pain pills and doctors from chiropractors to neurosurgeons.  I began in 1972 having changing symptoms which led the doctors think it was “all in my head”.  Finally the first CT scanning machine had been installed 7 weeks at our teaching hospital (Barnes,St. Louis).  They were wanting me to go to the Menninger Clinic in Kansas and my MN family said come to Rochester.  When the doctor heard this, he said we have the CT scan and so they gave me that test.  (I had had many tests previously but none of them showed anything.)  When they took the scan they indeed found out that there was something wrong and scheduled surgery.  Before the surgery I had  pneumoencephalogram so they could pinpoint exactly where the cyst was. I had various kinds of dizziness for the next 30 years but nothing I couldn’t deal with.

I was so happy when they told me I had to have surgery because I was beginning to think I would never be well.  I have had no problems since and have felt I had a second chance at life.

I really love your show and have learned so much from it.

Fern 

 

 
Icon_missing_medium Jeanean 1 post

I have an Arachnoid Cyst the size of a large plum tomatoe, that is how my Nuerologist described it to me, I had surgery in may because it was larger then, the whole left side of my brain. I have been given the run around too. I have head aches, stiff neck, I also had issues with dragging my right leg for years, now they are telling me that my leg and foot issue has nothing to do with my brain because I just had a MRI of my neck and lower spine because the Nuerologist could not figure out why I kept having headaches after the surgery. I do have herniated disc’s in my neck and lower spine pressing on a nerve. I feel like a beach ball being past back and forth, now I have to go see a Nuerosugeon again for my lower back because of the disc pressing on a nerve root. I wish doctors would really think long and hard about operating on some one and finishing the job. I have to live the rest of my life worrying if the cysts is going to get larger again because he only poked holes in the cysts so it could drain back into my system, when I had a follow up MRI of my brain in September it was still the same size it was after surgery and now has blood in it. What gets me the most is that I was in physical therapy for my dropped foot/ dragging leg issue to only be released because now there is nothing PT can do until they fix the herniated disc/nerve problem. I feel like noone wants to deal with me. Anyone else feel that way?

 
Icon_missing_medium Johnandheatherb 1 post

I have a right tempoal arachnoid cyst the size of a golf ball.  Seizures included.  No doctor support (neurologist just refills my meds and sees me back in 3 months- any symptom is disregarded.  The only reason I don’t change docs is because I hate to drive and cannot handle the stress of going far.  I did a phone consult with Scull Base years ago and said" six months or six years- its eventually going to have to be removed."

Too bad my insurance won’t cover Dr. Shahinian.  I want to be a real person again.

It has taken over my life- even my personality has taken a 360.  I don’t know who I am anymore and I can’t understand why doctors who are supposed to be specialists are so ignorant and don’t take patients seriously.





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