Melody Valier's Pledge Page
UPDATE!!! BRAIN SURGERY IS SCHEDULED ON 9/3/08 WITH DR. SHAHINIAN OF SKULL BASE INSTITUTE AT BROTMAN MEDICAL CENTER IN LOS ANGELES.
WWW.SKULLBASEINSTITUTE.COM
I know this page is long, but I have a LOT of information to share and hope I can help someone else going through the same medical dilemma! Everything I am telling you has been researched extensively and been verified or given to me by top notch neurosurgeons. I also work in the medical field and have a working knowledge of healthcare.
This web page is dedicated to anyone who is directly or indirectly affected by Pineal Cysts and/or Pineal Region Tumors. You are NOT alone. Please read my story and feel free to contact me with any questions or concerns.
Me and my partner are also experts in medical billing, authorizations, appeals, etc. If ANYONE needs ANY help with their insurance issues, we will be happy to help! Just send us an email outlining your issue and we can go from there!
Hello and thanks for taking the time to read my story. I am 34 years old, have a wonderful partner of 10 years and 2 adorable cats. I live in Northern VA and work for a healthcare consulting company for the last 4 years.
Life has not been easy and I have had many obstacles to overcome, but I have gotten to the point in my life where I am taking charge and finally starting to live my best life. I am losing weight, getting healthy, have an awesome personal trainer, and getting excited about going camping, canoeing, and kayaking this summer! I have a good circle of friends who are all awesome and a great partner and family!
For the most part, I have always been pretty healthy even with being overweight… I have not had many major medical problems. Early last year, I started experiencing symptoms like severe headaches with a lot of pressure feeling like my head was going to explode, sudden dizziness, fatigue, brain fog, double vision, etc. I would call them "episodes" because they would come on so strongly and all of a sudden. This went on for several months. I have also always had issues with Insomnia and excessive daytime sleepiness. I decided to see my PCP for an evaluation and she recommended I have an MRI and follow up with a neurologist.
The MRI was done in Oct 07 and the report stated I have a 1.4cm "benign appearing pineal cyst" along with extensive chronic sphenoid sinus disease. I usually do not get sinus infections so this came as a surprise to me. I went to see an Ear, Nose, & Throat doctor who put me on 2 rounds of antibiotics to see if the infection would clear up. By the time I had the second MRI, the infection was cleared up some, but not enough and the doctor recommended I see an E.N.T. doctor at Johns Hopkins to have the sphenoid sinuses surgically drained. This has been put on the back burner because the brain cyst/tumor is more important, at least in my opinion! My cyst on the 2nd MRI shows as 1.5cm. After doing a spinal tap in March, it was identified that I have increased intracranial pressure of 25. The normal range is 8-15. I also have increased intraocular pressure of 24 in one eye and 26 in the other. The normal range is under 20. So, I am not going crazy. I have these symptoms for a reason!!
After seeing 2 neurosurgeons and being told that the pineal cyst is “probably not the cause of my symptoms” and seeing 4 neurologists who all concur... I am extremely frustrated!
These doctors are not experienced in treating the pineal gland and tend to blame symptoms on my weight. See, pineal cysts are usually not a cause of concern when their size is less than 10mm or 1cm. My pineal cyst is 1.5cm which is larger than the entire pineal gland which is made up of only 1cm!
Pineal cysts, when symptomatic can be extremely dangerous. Usually when a pineal cyst is found, it is considered “incidental” meaning that it is not a cause of concern and not something typically found over .5cm. The National Organization of Rare Diseases states when a pineal cyst is over .5cm, it is considered rare.
I decided to do some of my own research and found quite a bit of information on the internet that says otherwise. It is extremely difficult to find a competent neurologist and/or neurosurgeon that are familiar with the pineal gland and one who has treated patients before for a pineal cyst.
What I have come to learn is that most neurosurgeons are trained to perform traditional craniotomies (cutting the skull from ear to ear) which is extremely invasive and the recovery time is lengthy and the surgical risk is high and this is why deep seated brain tumors have, in the past, been considered inoperable. There are NEWER and BETTER techniques for skull base surgery and that is called endoscopic brain surgery. A tiny incision is made behind the ear, or in the back of the head OR surgery can be performed through the nose depending on where the tumor or cyst is deep in the brain. THERE IS HOPE FOR PINEAL CYST PATIENTS!
YOU MUST NOT GO TO A DOCTOR WHO DOES NOT PERFORM SKULL BASE SURGERY. THERE IS A DIFFERENCE BETWEEN BRAIN TUMOR CENTERS AND SKULL BASE CENTERS. SKULL BASE SURGERY IS SURGERY PERFORMED DEEP WITHIN THE BRAIN THAT WAS ONCE THOUGHT TO BE INOPERABLE.
I will also warn you that even the most well respected hospitals in the country do not always perform skull base surgery and/or the surgeon is not comfortable with performing endoscopic surgery. It ALL depends on the surgeon and his/her comfort level and expertise.
Also, DON'T wait until you develop hydrocephalus (swelling in the brain) to have surgery. Hydrocephalus is considered a 'late' symptom and by the time a patient develops this, surgery is usually performed immediately and can be more complicated. I was told this by Dr. Shahinian at the Skull Base Institute. He explained that ideally it is better to have the surgery BEFORE hydrocephalus has developed because of increased complications. Also, who wants to undergo emergency brain surgery without doing your own research, getting to know the surgeon well enough prior to surgery, and making sure the surgeon is doing the LEAST invasive surgery possible!
There have been so many days I have wanted to give up. Having doctors consistently invalidate my symptoms is emotionally draining and makes me think I am going insane at times.
I know though that I will not give up. I will keep fighting until this is resolved. I will keep pushing doctors until I have answers and/or until I get this brain cyst out! I would love to talk to others who have been diagnosed with a pineal cyst and/or have a family member going through it. We need to support each other and fight for better treatment!
WWW.SKULLBASEINSTITUTE.COM
I know this page is long, but I have a LOT of information to share and hope I can help someone else going through the same medical dilemma! Everything I am telling you has been researched extensively and been verified or given to me by top notch neurosurgeons. I also work in the medical field and have a working knowledge of healthcare.
This web page is dedicated to anyone who is directly or indirectly affected by Pineal Cysts and/or Pineal Region Tumors. You are NOT alone. Please read my story and feel free to contact me with any questions or concerns.
Me and my partner are also experts in medical billing, authorizations, appeals, etc. If ANYONE needs ANY help with their insurance issues, we will be happy to help! Just send us an email outlining your issue and we can go from there!
Hello and thanks for taking the time to read my story. I am 34 years old, have a wonderful partner of 10 years and 2 adorable cats. I live in Northern VA and work for a healthcare consulting company for the last 4 years.
Life has not been easy and I have had many obstacles to overcome, but I have gotten to the point in my life where I am taking charge and finally starting to live my best life. I am losing weight, getting healthy, have an awesome personal trainer, and getting excited about going camping, canoeing, and kayaking this summer! I have a good circle of friends who are all awesome and a great partner and family!
For the most part, I have always been pretty healthy even with being overweight… I have not had many major medical problems. Early last year, I started experiencing symptoms like severe headaches with a lot of pressure feeling like my head was going to explode, sudden dizziness, fatigue, brain fog, double vision, etc. I would call them "episodes" because they would come on so strongly and all of a sudden. This went on for several months. I have also always had issues with Insomnia and excessive daytime sleepiness. I decided to see my PCP for an evaluation and she recommended I have an MRI and follow up with a neurologist.
The MRI was done in Oct 07 and the report stated I have a 1.4cm "benign appearing pineal cyst" along with extensive chronic sphenoid sinus disease. I usually do not get sinus infections so this came as a surprise to me. I went to see an Ear, Nose, & Throat doctor who put me on 2 rounds of antibiotics to see if the infection would clear up. By the time I had the second MRI, the infection was cleared up some, but not enough and the doctor recommended I see an E.N.T. doctor at Johns Hopkins to have the sphenoid sinuses surgically drained. This has been put on the back burner because the brain cyst/tumor is more important, at least in my opinion! My cyst on the 2nd MRI shows as 1.5cm. After doing a spinal tap in March, it was identified that I have increased intracranial pressure of 25. The normal range is 8-15. I also have increased intraocular pressure of 24 in one eye and 26 in the other. The normal range is under 20. So, I am not going crazy. I have these symptoms for a reason!!
After seeing 2 neurosurgeons and being told that the pineal cyst is “probably not the cause of my symptoms” and seeing 4 neurologists who all concur... I am extremely frustrated!
These doctors are not experienced in treating the pineal gland and tend to blame symptoms on my weight. See, pineal cysts are usually not a cause of concern when their size is less than 10mm or 1cm. My pineal cyst is 1.5cm which is larger than the entire pineal gland which is made up of only 1cm!
Pineal cysts, when symptomatic can be extremely dangerous. Usually when a pineal cyst is found, it is considered “incidental” meaning that it is not a cause of concern and not something typically found over .5cm. The National Organization of Rare Diseases states when a pineal cyst is over .5cm, it is considered rare.
I decided to do some of my own research and found quite a bit of information on the internet that says otherwise. It is extremely difficult to find a competent neurologist and/or neurosurgeon that are familiar with the pineal gland and one who has treated patients before for a pineal cyst.
What I have come to learn is that most neurosurgeons are trained to perform traditional craniotomies (cutting the skull from ear to ear) which is extremely invasive and the recovery time is lengthy and the surgical risk is high and this is why deep seated brain tumors have, in the past, been considered inoperable. There are NEWER and BETTER techniques for skull base surgery and that is called endoscopic brain surgery. A tiny incision is made behind the ear, or in the back of the head OR surgery can be performed through the nose depending on where the tumor or cyst is deep in the brain. THERE IS HOPE FOR PINEAL CYST PATIENTS!
YOU MUST NOT GO TO A DOCTOR WHO DOES NOT PERFORM SKULL BASE SURGERY. THERE IS A DIFFERENCE BETWEEN BRAIN TUMOR CENTERS AND SKULL BASE CENTERS. SKULL BASE SURGERY IS SURGERY PERFORMED DEEP WITHIN THE BRAIN THAT WAS ONCE THOUGHT TO BE INOPERABLE.
I will also warn you that even the most well respected hospitals in the country do not always perform skull base surgery and/or the surgeon is not comfortable with performing endoscopic surgery. It ALL depends on the surgeon and his/her comfort level and expertise.
Also, DON'T wait until you develop hydrocephalus (swelling in the brain) to have surgery. Hydrocephalus is considered a 'late' symptom and by the time a patient develops this, surgery is usually performed immediately and can be more complicated. I was told this by Dr. Shahinian at the Skull Base Institute. He explained that ideally it is better to have the surgery BEFORE hydrocephalus has developed because of increased complications. Also, who wants to undergo emergency brain surgery without doing your own research, getting to know the surgeon well enough prior to surgery, and making sure the surgeon is doing the LEAST invasive surgery possible!
There have been so many days I have wanted to give up. Having doctors consistently invalidate my symptoms is emotionally draining and makes me think I am going insane at times.
I know though that I will not give up. I will keep fighting until this is resolved. I will keep pushing doctors until I have answers and/or until I get this brain cyst out! I would love to talk to others who have been diagnosed with a pineal cyst and/or have a family member going through it. We need to support each other and fight for better treatment!