Unlike most bloggers i have crafted this mostly offline but now will be more religious and post more frequently as my memory isnt what it used to be.
Chronology of Events since Last Gamma Knife 11/2007
Danielle has had 4 embolizations using “glue” from 2003 – 2006. I believe a 5th was scheduled but ended up only being an angiogram as Dr. Rosenwasser did not feel comfortable embolizing further given what we assume to be too large of a risk.
Next we started planning for Gamma Knife (GK) by seeing Dr Wally Curran. If memory serves correct, he suggested like Dr. Rosenwasser, that treatment would be staged because of the size of the AVM. When pushed, Dr. Curran suggested that there could be a 70% chance that these procedures would potentially obliterate the balance of the AVM. With only a 2-3% risk per treatment, we decided to proceed. Dr Curran during this time left Jefferson and we eventually met with Dr. Lee – possibly for one appointment and I cannot be certain if this was between or prior to Gamma Knife.
2 Rounds of Gamma Knife occurred – one in 2006 and the last in November of 2007. It was during these treatments that Dr. Rosenwasser described that the AVM would be treated in “halves”. The Drs (Rosewasser and the DR or Radiologist who programs/administers the GK) plan was to treat ½ of the AVM during 2006 and the other half in 2007 suggesting that they could not deliver and effective dose of radiation if they treated the entire AVM. I cannot recall the units or measures of radiation that each side was treated with but each treatment was approximately 45 mins – 9 rads is sticking in my mind but not sure why. The Drs further suggested that these two treatments would be followed by a 3rd (spaced a year apart) round at a lower dose that would treat or radiate the entire AVM. No issues with either of these treatments aside from Danielle vomiting on the car rides home. We have always blamed the anesthesia for the nausea and vomiting following a procedure (angio, embo…..) but have a suspicion that “touching” this area somehow triggers the symptoms.
No 3rd round of GK has ever occurred. No one has ever explained why or where we go from here. We followed up in 2008 to schedule round 3 but were told by Rosenwasser’s office that only a follow up MRI was recommended at this time. Two MRIs occurred from 2008-2009 with only the reports being sent to Dr. Rosenwasser. No follow up occurred and no answers to our questions.
Finally in October of 2009, we scheduled an office visit to see if we could find out the success or failure of the last treatments and to discuss next steps. Two days prior to our visit, we received a call from Dr Rosewasser’s office alerting us to the fact that Dr was not going to be available and would we still like to be seen. We replied yes and proceeded with the appointment. We met at Dr. Rosewassers office and met Judy Gaurnieri who took the routine info from us prior to meeting Rosenwasser’s covering partner. We then explained why we were there and hoped that someone would be able answer our questions. Unfortunately, about an hour later, Judy came back in to tell us that the covering Doctor had just been called away on an emergency and we would not be seen. We left instructions with her to have Dr. Rosenwasser follow up and reschedule the appointment. No follow up or rescheduled appointment occurred in 2009.
February 2010 – We took a trip to Disney for our daughters field hockey tourney and during the trip and unbeknownst to me, Danielle started seeing bright spots or “flashes of light” in her peripheral vision – primarily right eye. Shortly after returning and on a Sunday, Danielle started getting very anxious about her eyesight and the complained that she complete lost vision in her right eye. This subsided and got her to calm down reassuring her that these symptoms have previously presented as “auras” prior to having a seizure. She laid down and started to talk herself off the cliff. Eventually the vision returned but we were obviously concerned that this was a sign of a larger problem and at best not sure what do. We waited until the following day to follow up with her local Neurologist, Dr. Roy Jackel, and Dr. Rosenwasser’s office. Both offices suggested that if this was a “new” symptom, then we should make a trip to the ER. Dinner time Monday eve, we went to Doylestown hospital to have her Tegretol levels checked and to have a CT scan. ER docs and oncall Neurologist suggested Danielle be transported to Jeff for further studies – mainly an MRI. Danielle was transported by ambulance to Jeff while I returned home to the kids.
Later that evening and after arriving at Jeff, an MRI was performed. Around 2 am, Danielle called me in a panic after the attending Neurologist reported to her that they films suggested she may have had a bleed and that she would be scheduled for an angiogram/embo in the AM. Around 6am, Dr Rosenwasser made rounds and met with Danielle. He looked at the films and said that no bleed had occurred and no angio or embo would take place. Danielle remained at Jeff over the next couple of days as they monitored her situation. We met with the epilepsy group who discovered that our insurance provider had moved her to a generic version of Tegretol XR (had been taking 1000 mg daily – 600pm and 400am) and that her levels were probably too low to adequately protect from seizure. It was concluded that the loss of vision probably was a small seizure. Jefferson put her back on the “brand name” and got her levels to the appropriate range. I believe it was even suggested that she increase her meds to 1100mg if she could tolerate it. Prior to being discharged, we met with Judy from Dr. Rosenwasser’s office. She wrote out scripts for Tegretol and again we reiterated that we would like to schedule a follow up visit with Dr Rosewasser to discuss our concerns. She suggested should would get back to the office and follow up with us with an appointment. No follow up or appointment ever occurred. To add insult to injury, we were given scripts for “regular” Tegretol instead of the extended release (XR) tablets which resulted in Danielle passing out at work after he legs buckled underneath her.
The balance of 2010 was relatively uneventful but Danielle continued to describe being in a fog, anxious, short tempered, frustrated, and reading vision becoming blurry. Scatterbrained, forgetful and mixing up words have also been observed at least on a weekly basis. Stress and stressful events seem to compound these symptoms and she frequently says that she cannot handle her life. We tried by phone to reschedule with Dr. Rosenwasser’s office several times over the course of the year but were unsuccessful. We did finally received an outbound follow up call from Mariana (I believe) toward the back half of 2010 but nothing ever transpired.
March 17, 2011 – received a call from Danielle’s co-worker around 950am letting me know that Danielle was in the nurses office having had complained of lightheadedness, dizziness and feeling uncomfortably hot. Nurse described Danielle as confused and hot, gave her some chocolate milk which shortly thereafter led to a short grand mal seizure. 20-30 secs. I came to school to collect Danielle with the hopes of getting to see her local neurologist. She was upset and complained of being hot. Other than blacking out during the seizure, her memory was mostly intact unlike previous grand mals. She also told me that she did not have some of the “usual” auras like taste and smell. I took her home and she rebounded rather quickly again unlike previous grand mal seizures. The last full blown grand mal she probably had 6-8 years ago and prior to us seeing Dr. Rosenwasser. Dr Jackel was unable to see us but recommended that she increase her Tegretol to 1200mg (600mg x 600mg). Danielle barely tolerates 1000mg and mentally fights these increases suggesting that she feels drugged and already not clear. She feels slow behind her eyes and unable to process clear thoughts, especially under pressure. She is stubborn and will self medicate – raise or lower level to feel better. After the increase and an office visit with Dr. Jackel, he suggested we wait 10 days and ride out the 1200mg to see if her body will tolerate the increase. She is fighting this increase daily and suggests that no one is listening to her and that we are trying to poison her. Levels checked 10 days later and they came in at a 9 – which I believe measures her trough level of the day and prior to AM dose. If 9 at trough, what is it at peek? Danielle would like to try a new med because she believes that the levels are too high and that her daily deficits are caused by such. She is unwilling to switch now and she cannot imagine being on two meds at once while trying to work. She wants the school year to end and then would be willing to experiment with something new.
April 6,2011 – In addition to normal symptoms of dizziness and confusion, Danielle starts to complain about numbness and tingling in her arms and legs, primarily from elbows and knees down. She thinks it starts on the right and the followed by the left, then both. I believe she feels it a bit stronger on the right as well. We contact all Drs involved and everyone suggests a trip to the ER. Instead of going to Doylestown, we left around 6pm this day and drove directly to Jeff. We called Rosenwasser’s office to give them a heads up in hopes of avoiding “general population” in the ER waiting room. No such luck. Arrive around 7pm and then meet with triage nurse. She takes vitals and some background history along with what brought us here then sent back to waiting room. I followed up with a phone call to Rosenwasser’s office after hearing it was going to be 6-8 hr wait. Attending suggested no way to “fast pass” the line and to just be patient. Within an hour or two, we were called out for a CT scan. After this was accomplished, it was back to the ER waiting room. Somewhere around 1am, a ER doc or nurse took blood from Danielle to check her “levels.” I asked why this wasn’t done sooner and suggested that she normally takes her pm dose around 9pm prior to going to bed. I further asked how accurate this would be since it was close to 17hrs since she last took meds. Levels came back low – around a 5. Back to the ER waiting room. Around 2-230am, I inquired about being seen and were any results back. It was obviously not an emergency based on how long we were sitting in the waiting room. With no end in sight, we told the ER that we were going home and if we could just get a copy of everything. As the checkout process began, the ER folks brought in a doc to ask us to reconsider leaving. He gave us the CT report which suggested no bleed or abnormal AVM activity and let us know that we were next to go back. We decided to stay if we were truly to be seen shortly. After being brought back, Danielle was placed on a gurney outside of ER room that warehoused 4 others. It was obvious now that being brought back meant further waiting and it was now 4am. We stopped someone again and asked what was next. They suggested that an ER doc would see us shortly and that he or she would probably have to call for Neuro consult if someone was available. We picked up and left deciding to follow up with Rosenwasser the next day rather than continue to wait on the ER gurney.
We followed up with Rosenwasser and scheduled two appts, one to have an MRI with and without contrast and the other an office visit to be seen on 4/15.
MRI performed on 4/13.
11am appt. with Rosenwasser on 4/15. We took the MRIs with us to the appt. Once again we arrive at Rosenwasser’s office and they inform us that its unlikely he will make it. We decided to stay with hopes of discussing Danielle’s recent events with Dr. Rosewasser’s partner as we have grow increasingly concerned that something has or is changing with the AVM not to mention that we have tried for nearly 2 years to be seen. After 3 hours of waiting and needing to get back to get our kids off the bus, we asked approximately how long. At approximately 230pm we asked for our co-pay back, all of our records and left Rosenwasser’s office without ever have been seen. A nurse or person who helped us get our records, told us that this was her last day and for precisely what we have experienced over the last 2-3 years. This confirmed to us that the practice was too large, too busy or generally just could not be bothered with seeing patients in office.
With the symptoms still persisting, we follow up with Dr Jackal’s office to see if they would consider lowering Danielle’s dose of tegretol. She experiences greater clarity and the numbness and tingling wears off the further she gets away from her AM dose. They agreed and lowered her to 1100mg. Symptoms improve and Danielle feels better but still feels too drugged. Occasionally she backs off to 1000mg and feels even better but remains concerned about having a seizure, especially if tired and stressed. Has largely remained at 1100mg.
4/20 – Tegretol blood level checked at today in the AM before dose, it came back at 7.5
4/24 – Easter Sunday – we are hosting and know Danielle is stressed about this. She gets up and while getting dressed complains about how hot it is in the house. We go to church and she is stressed with deep sighs and ultimately have to leave halfway through because she doesn’t feel well. We leave the kids inside and head outside. She starts to feel better being outside but she feels clammy to me. We get home and she just doesn’t feel well. She took her AM dose on an empty stomach and not sure if that might have something to do with how she feels. Obviously still very concerned that this may not just a medicine problem. Extremely anxious and upset, I suggest that she take .25mg of xanax (sp) that she sometimes takes prior to air travel or MRI. She eats a banana, drinks tea and then takes the xanax as nothing is helping her calm down. 30 mins later she reports feeling better and even relaxes enough to close her eyes on the coach. As the day goes on, symptoms start to decline and she feels better by 4pm but still not great.
4/25 – Gets up and complains about dizziness and seems anxious about having to go to work/school. She is still very embarrassed about the seizure that occurred and just wants the school year to end. I suggest she eat something before taking AM dose which she does and says that she feels slightly better after eating. Waits until 750am to take 500mg. I decide to drive her to work. Spoke to Dr Jackals office and they suggest that she spreads out our dose – 400am, 300 afternoon and 400pm.
Danielle is extremely anxious and possibly slightly depressed that this situation might not improve. She has been visibly upset since 3/17 and as each days goes on more concerned that something is wrong.
Questions:
She wants to know what progress, if any have been made since 2002? Is there any change in the AVM? Are her risks of bleed reduced?
Where do we go from here?
The symptoms she complains about – dizziness, tired, anxious, slow behind the eyes, vision problems, breakthrough seizures – are they Tegretol related – how do you know if you are toxic? If not medicine, could this be a residual effect of the radiation?
Should she continue to work and drive?
Can you be embolized after GK?
Anything new in the treatments of AVMs?
She doesn’t wear a medical bracelet should she?
She has never, in my opinion, dealt with the psychological impacts of this illness. She is not a support group person and prefers not to talk about it to anyone. Genuinely embarrassed about her situation, especially regarding seizures
Are there any alternative medicines, treatments or remedies to help?
She feels this will kill her eventually