Pamela Tippins, age 44, divorced, one child age 18 - starting college. Self employed medical transcriptionist with an at home business for four physicians. Classical pianist - not professionally. I'm still quite coordinated with my hands, which allows me to play the piano and transcribe and i can spell quite well - not bad for being a dizzy blonde.
No More!
30 July 2002
I really appreciate this web site. I have undergone four surgeries in the past four years for various problems (hysterectomy, removal of coccyx and part of the sacrum) the last surgery being lumbar discectomy for herniated L5-S1 disc. That occurred on 3/28/02. I awakened from the surgery with a severe headache and vomiting, lasting approximately 7hours or longer. Finally Dilaudid was administered as the headache was non responsive.
A few days later, I was aware of a ringing in the left ear, whooshing sounds in my head, pressure inside of my head with headaches and left sided neck pain. Ever since the surgery, I've had left sided temporal/occipital headaches and loud noises in the left ear. After 2 months of seeing doctors and expressing these symptoms, finally my neurologist ordered a brain MRI (without having the opportunity to see him as he was booked for 2 months with NO appointments available.) They found a large AVM in the right frontal lobe.
Saw the neurosurgeon who told me it was inoperable and ordered a CT angiogram for better definition. In the meantime I have lost sense of balance, have involuntary rocking when I sit or stand, episodes of vertigo, constant headaches (mostly left sided) which vary in intensity, blurred vision, difficulty in swallowing, tire easily and at times my heart seems to go into a fluttery state (even thought EKG was normal.) If anyone would be kind enough to write me back who has had similiar symptoms, I would appreciate it. The neurosurgeon has attributed none of these symptoms to the AVM...
Upon my research of gamma knife/ embolization treatment, I have opted for no intervention. This because of the poor health care I have received, going for 2 months without anyone listening to me or ordering appropriate studies. Plus, since having my coccyx/partial sacral removal I am totally incapable of lying on a flat hard surface.
The AVM has only shown signs of leakage at this point, but judging from my symptoms ( I feel like I'm having a stroke at times) I do believe it's responsible for the problems I am experiencing.
I have a strong faith in God and a close relationship and He was already somewhat preparing me in November, 7 months before this AVM was found that there was something quite wrong and irreparable. I have been a medical transcriptionist for 20 years (work at home and continue to do so) and have decided as long as my brain is lucid and my memory is intact, I choose to let this AVM do it's thing and use the time I have left now in this condition, rather than allow anyone to maime me further. The care one receives on a HMO is insufficient and unfortunately they do not treat the whole person...Sometimes it is 2 to 3 months to get a referral to a specialist. I guess the whole process of fighting with the insurance company, seeing 5 doctors who ignored my symptoms and did nothing..etc. has lead me to have more peace with saying NO MORE. I will trust God and His Timing.
I have a DNR in place....advance directives in place and will take each 24 hours that I'm given and try to be productive as I can. Having worked with numerous physicians, hospitals, even an HMO in my 20 years of transcription, I have to say that unfortunately medicine is a BUSINESS first.....They tend to forget they are dealing with humanity, which is why I've chosen to disengage myself from the whole process and deal with this with God.....Who after all created me and knew all along this AVM was present... The neurosurgeon told me in his office that I lived 44 years without a bleed and would probably go another 40 years....Then, two days later I receive a certified letter from him stating that because the size and location of the AVM, I am at high risk for hemorrhage...... (?????))))
I also want to express my admiration to those of you who have undergone such drastic intervention and suffering, for your courage and resolve to get better. Unfortunately, four surgeries have left me weakened, feeling ill and have stripped me of my trust in the medical profession. I only received peace when I came to the decision of NO more invasive intervention in any way.
Update: 26 Sep 2002
I would appreciate any one's input as to the symptoms I am experiencing with my AVM....are the symptoms below AVM related?
1) Pins and needles in both legs, with a weak
feeling in both lower extremities.
2) Dizziness and vertigo. Pulsatile tinnitus in the left ear (I am
hearing my heart beat).
3) A pressure - burning pain behind the right eye (where the AVM is
located)
4) Unsteady gait...balance problems, involuntary rocking when I sit
or stand.
I underwent a 3 hour angiogram!!!!!! Talk about being pumped full of dye. They believe the AVM leaked in March of 2002, but can not state that with certainty, as it wasn't scanned in a timely manner (has to be 3 weeks or sooner post bleed.) The nidus is now 3cm by 3 cm by 2 cm and no one in my town is qualified to even treat an AVM, yet the neurosurgeon is quite eager to do gamma knife... I've already found out that gamma knife would be ineffective and inappropriate as the nidus is too large... So I'm still staying with my decision for NO more treatment, but my neurologist, pain management physician and neurosurgeon do NOT have any explanation for my symptoms. It would be reassuring for me to know if all this stuff is AVM related.
Thank You.
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