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Story of My Diagnosis

 

   From:"Jennifer Bobin" jlbobin@gmail.com
Sent: November 12, 2006

I remember when I was diagnosed and I searched the internet over for information on CAs... there was very litte out there, and certainly no support groups/chat lines/listservs. I actually ended up joining one for brain tumors (they were actually very wonderful there, and I think we have quite a bit in common less the chemo). I'm not sure what made me put CA in Google tonight, but I was so excited to see that an organization has actually been developed. I can get pretty long-winded, but bear with me.

I was 20 and had just graduated college. Despite getting my 4 year degree, and much to my parents sha-grin, I opted to work as an EMT. I spent a day on an ambulance with a horrible exhaust leak and started having a headache, which I attributed to the carbon monoxide. I went home and by that night, I told my boyfriend at the time that I had "the worst headache of my life" and I needed to go to the ER.

The ER knew me pretty well, and drew my blood gasses (because of the exhaust leak I had been exposed to), yet never gave me anything for pain. When they came back normal, the MD told me to "go home, take 2 asprin and get some sleep." Good thing I didn't take any asprin. I went back to the same ER about 6 hrs later. I just couldn't take the pain, the vomiting. I couldn't think, my sentences didn't make sense... I was a mess. This time I get a new MD (shift change) and they give me meds for pain and nausea and a CT. I also got Benadryl b/c the CT contrast made me feel so sick. So, when the MD comes in, I am out of it and he tells me that I have a brain tumor -- but it is strange b/c it has also bled. They admit me.

Over the next days they do a MRI and angiogram. The neurosurgeon comes up one afternoon and tells me that he still doesn't know what kind of tumor it is, so he wants to do a needle biopsy of it. I tell him "No way." Partly b/c I was a very vain 20-year old that didn't want half my hair shaved off and partly b/c it didn't make sense to me -- he told me that it had bled and he wants to go poke a needle in it??? What if it causes a major hemorrhage? Afterall, he doesn't even know what he's going to poke this needle in. So, he tells me that I will be dead by 21 if I don't let him do this procedure and leaves. He sends his colleague down to talk to me. The colleague tells me of a MD at Emory doing a new procedure called stereotactic radiosurgery, and based on the size and location of my tumor, he thinks I would be eligible. So, I sign out AMA that night (I told my roommate I would be home by the time ER was on, and I was!).

I enter a total state of denial. Afterall, I feel pretty good, less the headaches. I end up in the ER about once a month. So, about 3 months later, I call the radiation oncologist that the colleague reccommended. His bedside manner left sooo much to be desired, but I guess he must know what he is doing, since he was the one that actually diagnosed me correctly. He said it was a CA. I ended up sending my films to several MDs across the US trying to ensure I had a proper diagnosis (I didn't want to leave some cancerous or other brain tumor up there that really needed some kind of urgent treatment).

I made a local friend on the brain tumor listserv, who found a good neurosurgeon, so I went for an evaluation. He said that the location was not a good surgical option (adjacent to the occipital horn of my right lateral ventricle) and that I would not come out the same person I went into the surgery. He monitored the CA every year for about 3 years, then said it was no longer necessary. Since my diagnosis in 1997, I have had a total of 3 bleeds. Once I was diagnosed, I realized that my first bleed was actually in December of 1994, when I was home from college. The worst (and really only) headache of my life woke me from my sleep early one morning. I was really nauseated, light and sound phobic. You have to understand my parents to know why I didn't go to the ER -- you don't go to the ER unless you can physically produce a limb seperated from your body. Then, mom might consider it, only if a needle and thread fail to reattach it at home.

I have found that neurologists, neurosurgeons, and any doctor I have been to, have written off my CA as "of no consequence" despite the multiple hemorrhages. Since my second hemorrhage (the one that lead to my diagnosis) I have been plagued by chronic headaches. For example, when I went to the ER with my 4th hemorrhage, they transferred me to the hospital where neurosurgeon worked out of (for my back) to be admitted. The hospital that I was transferred to said that they didn't see the hemorrhage that the other hospital saw and that a hemorrhaged CA does not cause headaches, so they never gave me anything for pain control -- YET they kept me admitted for 3 days. I was discharged with the same headache I was admitted with. I NEVER had headaches before, and the neuro's swear that there is no way CAs cause chronic headaches. I have never had a seizure, but they used seizure medications to help control my chronic headaches. The same medication also helps control the neuropathy in my legs.

My CA has really not presented much of an obstacle in my life until May 2003, when I was paralyzed by a third back surgery. Post-paralysis, you need 30 days of blood thinner treatment to prevent blood clots. They re-scanned my head and brought in consults from other depts to argue about whether the fragmin would/could be detrimental and spark a 5th bleed. They determined that the risk of blood clots were life threatening and the CA was not, so I completed my 30 days (actually about 50 days) of fragmin shots. Then, in Sept 2004, when I developed a saddle embolus, and multiple other blood clots in my lungs, which necessitated blood thinner treatment. They re-scanned my head to check the status of the CA. Again, cardiology and neurology went back and forth about blood thinners. They all agreed about the benefit of treating the existing clots, and doing a course of Coumadin for 3 months (they would agree to 6 months), but cardiology thinks I needed to stay on Coumadin for life. The cardiologist has lowered my theraputic level as a compromise.

So, I guess the chronic headaches and a coumadin dilemma has been the biggest problem caused by my CA (my back is another story -- I was born with spina bifida, tethered cord, diastematomyelia, and developed hydrosyringomyelia and arachnoiditis). I'm thrilled to see research being done on CAs and work to raise awareness in the medical community so other people with CAs will have an easier time getting a proper diagnosis.

Jennifer Bobin