Update on Seizure Surgery; Does He Or Doesn’t He?

Quinn and Carmella face to face

Tuesday was a nail-biter with lots of buzz about collecting data and analyzing it with a fine-toothed comb. 5 or 6 Doctors and technicians filed into Quinn’s hospital room. Since the day before the mood was  guarded, as the big concern was that during brain mapping that they’d find the area with the D-Net too close to the speech center of the brain and if that turned out to be the case it would be deemed too risky to attempt with the possibility that they could accidentally wipe out his ability to speak (and/or possibly to comprehend others’ speech).

Doctors in rounds

Some were already scaling back their hopes, including his step-grandmother who has been a little leery about the whole idea of his going under the knife (well, laser, actually) from the beginning although she managed to keep that thinly veiled from Quinn, just dropping subtle and some not-so-subtle hints that she thought he should accept something less than a full cure. Just the day before some of the doctors began talking about other options and I could tell that it was swaying my son’s confidence. They discussed a neural pacemaker (which as it turned out would require alot of maintenence including uploading data regularly), and a few other possibilities which would involve some further monitoring to get an even more precise idea of all the tumor’s parameters.

The one big unanswered question was how deep the lesion goes, and there were not sufficient electrodes implanted to check it from all angles, but that would not be possible to arranage during this hospitalization and it could take several months to a year before they could even get to the point that they could determine the exact dimensions and how the brain-matter in the very close vicinity functions.

Epilepsy electrical activity

My son has been losing further brain function the longer his seizures are left to their own devices, and it’s no longer just a matter of inconvenience to him such as in his being unsafe to drive, but in recent years he has actually suffered increasing problems in certain cognitive areas. He just doesn’t think as well nor is he as equipped to care for himself as the average guy his same age, and often seems a little lost when trying to describe something to another person, and it can sometimes blunt his emotional reaction as well.

I knew that at this stage that medications aren’t stopping the damage to his brain nor are they adequately reducing the number of seizures enough so that the damage would not progress, so this has to work in order for him to have a chance out there in everyday life. The atmosphere yesterday morning before the mapping was thick with tension and uncertainty and though nobody came right out and said it, it was more what they didn’t say that made me uneasy. He’d already discussed other options with his doctors previously and none really gave much hope of adequate seizure control, so he came in here hoping for the new technique which would have the best success rate and the most permanent and safe results. Despite the deflated mood that was developing amongst the others I remained resolute that where there’s a will there’s a way.

Inspired Woman

As soon as he’d told me this new technique was available I felt that he could benefit from this and that the right doctor could make it a big success and I have never waivered from that philosophy. Dr. G. (according to Quinn’s general Neurologist) is one of the top Neurosurgeons in the world, and the minute I met him I felt confident he could do the job and do it right.

Doctor who looks like Dr. Gross

Success in treatment is a winning combination of factors on the doctor’s part; the skill, the will, and the ability to think creatively, and I knew that this guy had it. Sometimes you can just tell. Then the other half is the body’s ability to surprise us all. I encouraged Quinn not to give up hope yet. There was still the brain mapping. Nobody but his own brain at this point knew the outcome that was about to reveal itself.

Around 1:57 PM Tuesday several doctors and EEG Techs entered his room and introduced themselves.

Happy Doctors

They seemed a bit more upbeat than the group who had been in the previous day, and one of them (whom I am pretty sure was an Aspie and had a movement disorder) seemed to know what I was dealing with as his mother more than the rest.

The team began the mapping, testing one electrode at a time with a process involving delivery anywhere from 1-8 millihertz of electricity to a specific area of the brain. If he were to be deemed a candidate for the surgery there would be no or little interference with his speech as he was directed to identify objects  and famous people and to read short sentences. If on the otherhand they discovered that stimulation of certain areas caused speech or comprehension to cease entirely then that would be of concern, indicating that these vital areas would be considered too close to the tumor which needed to be removed for surgery to be safely performed.

All waited with baited breath as the young blonde woman with her hair in a poneytail and what appeared to be about 1 Ct. diamond earrings (or CZs; I’m not sure) had her finger on the red button attached to a black box which delivereed pulsed electricity to a designated electrode. It made a ticking noise when pressed and Quinn was asked to repeat the sequence of instructions over and over as each electrode was tested.

Doctors using digital tablet in meeting

Communication between the members of the team consisted of a number of fingers held up and and coordinates denoting particular electrodes and voltage. At first my son felt nothing or mild to moderate euphoria, but as time went on and they tested other parts of the brain he became violently nauseated and threw up several times. That was enough to send doctors and techs scattering, but after a few minutes he collected himself and resumed the procedure. It is quite possible that they hit something that tripped off his Autonomic Nervous System. It was nothing dangerous at that low a voltage, but it was scary nonetheless seeing him react so suddenly. The Vancomycin they’ve been giving him to prevent infection makes him nauseated as it is on and off, but there was no doubt that one of the stimulations triggered it this time…and very strongly!

A few other areas that were tested made him light-headed. The team paused in order to let his brain settle down and resumed where they left off.

Dizziness

As the mapping continued I could sense the exitement in the room growing and the clouds of doubt lifting.

Looking Up After Fainting

One tall young man with dark wavy hair who was watchig the brainwaves on the monitor burst out at one point and exclaimed “This is incredible!” There was alot of nodding and thumbs up all around and I was pretty sure that meant it was a go! The team could barely conceal their excitement. Things were proceeding much better than predicted.

Group thumbs up

Next they tested an area that ventured into the visual area (I believe the visual cortex?) He noticed just a small area of vision that was fuzzy like an old fashioned TV going on the fritz, but it was a very small area restricted to the top of his visual field.

At the end one of the main doctors in charge of the mapping, a neatly choiffed and quick-whitted guy with GQ good looks asking him the questions explained to us that Quinn did very well and that it was encouraging that they ran into no problems with the area involved in speech or comprehension.

GQ Type Doctor

There were only one or two instances in which he had to search for a word, but other than that he zipped through it without hesitation. Thankfully the surgery was still on the table!

After this team left, the main Neurosurgeon Dr. G. came in wearing street clothes and in a very down-to-earth and personable way sat in a chair beside Quinn’s bed and began duscussing with us that he though Quinn would be right for the surgery. I could tell he wanted to make a way for this to happen and with the new data from the mapping his confidence had returned.

He recommended ablation with higher electrical current (possibly in addition to laser, but would think over the logistics that night when he got home). It was clear that the wheels were turning again and faith was renewed. Dr. G. was a man inspired to change lives for the better.

surgeon

His fondness of Quinn was evident and it renewed my own faith that there are still some doctors out there who really do care and won’t leave you holding the bag when challenges present themselves, doctors who want treatment for the patient as much as the patient does. This is how all doctors should be and the right reason to work in the field of medicine. Quinn and I looked at each other and there really was no question that he should go for it.

Tonight (Wednesday, August 31st) at about 6: 10 PM when I had to leave because my transportation had been prearranged he waited in the que in pre-op for about 2 hours and then went into surgery around 8:00 PM after. I hated not being able to be there both before and after and had hoped to get a live report from the doctor when the surgery was completed. His step-Grandmother was able to go over there after I left, but Quinn and I have a special bond, even greater than many parents and children because he was sick as a baby and I saw him through several surgeries on similar tissue in his trachea.

For that first year he needed lots of special care and we were pretty much attached at the hip. He went everywhere with me and I rarely hired a babysitter because I didn’t feel comfortable leaving him with anyone else even for short periods of time.

mother holding baby's hand

I have always known when something’s happened to him such as an injury or accident or when he’s had a particularly bad seizure day intuitively even when he’s been geographically miles away.

Luckily it didn’t take long tonight to be picked up and the handicap transport vehicle got me home pretty quickly. I prepared some crispy hashbrowns and ate those with ketchup and while they were frying the phone rang. It was Quinn’s step Grandmother to say he’d just gone into surgery. She was waiting in the same waitingroom we’d waited in the first day when he’d had the electrodes implanted.

Apparently they are going to put him in another room when he’s out of surgery, so she had to take all his belongings out of there and keep them with her until they know where they’re going to put him.

He may get to go home tomorrow but I can’t imagine he would feel up to it that soon even though this surgery is less invasive than the open craniotomy style that they used to do most often. Judging by how much pain he’s had I really think that a discharge the day after would be overly optimistic.

Road

It will be exciting to see the outcome; whether the surgery stops his seizures entirely. I know he really wants to be able to drive again without risking an accident. He’s had several in the past that completely totalled his cars and since then has been greatly limited in his ability to go where he needs to go, as the bus system in Athens is not great and most buses run no more than once an hour. His girlfriend’s car was having numerous problems and then hit a deer and was completely destroyed. She has not obtained another one since.

Service between Athens and Atlanta is not accessible by public transportation so when nobody can give him a ride he has had to take a commercial bus which operates regionally (sort of like Greyhound) which is more expensive than public transportation would be had it been connected.

Last year he wasn’t able to get here around the holidays or at any other time. The only exception was when he had the external seizure monitoring earlier that year and I came out to see him for that during the few days he was in the hospital.

surgery

I hope this surgery opens up many doors for him and that he will be able to drive again. It is likely to be at least 6 months before we know for sure if it’s done the trick, but there is a very good chance he may be seizure-free, and if it doesn’t rectify all of it then he has the option to come back and have it refined. I know that if he had not had this surgery chances are that he would continue to decline cognitively which would add to the limitations he already has. It came through just in time. He called me around 1:30 AM once the surgery was finished and except for some soreness in the areas where the electrodes were he’s feeling pretty good. So far it looks as though no collateral damage resulted. Time will tell whether all the seizures are gone forever. Thanks to all the dedicated men and women who made this a reality!

This is for you, Quinn, here’s to a bright future. I just know great times are ahead. 🙂 I’m proud of you for hanging in there even during the times you were in pain, persisting despite the nausea, in spite of the fear of the unknown to see this through.

 

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Seizure Surgery Can Give Patients Their Life Back

Epilepsy

I haven’t spoken much on this blog about my son and his situation (for obvious reasons) but I think now is as good a time as any to share the miracle that he may very soon be receiving due to advances in neurosurgical technique. This is a teachable moment that I  believe will help those who do not understand to develop a more empathetic perspective and give hope to those, who like Quinn live with seizures that impact and impair their functioning every day of their lives.

First, I want to say that the individuals involved work for Emory, but they are their own entity in and of themselves as medical professionals, and without individuals who are willing to work on behalf of the patient no corporation can survive in the long-term.

The ultimate success of a procedure, any procedure, compliments of medical science in large part depends on the dedication and skill of those on the front lines who are carrying out the technique. This is why I always make the distinction between doctors at Emory and the corporation; Emory because there is a difference.

Clinic Buildings

What makes up a good department is good people and the doctors working within the seizure clinic and seizure inpatient unit have been very good. So far I have found them and Radiology to be the best departments I have encountered as of yet. Today it has been 6 days since doctors implanted about 10 depth electrodes in my son’s brain and he is without a boubt feeling the effects of having a bunch of holes drilled in his skull and foreign objects jabbed into his gey matter, sleeping as much as he can to cope with the headache this causes, and not feeling much like eating due to the pain, but the doctors say that so far it is looking like he is a good candidate for the surgery which could return him to total ability again.

Now 32 and first diagnosed at arounf 14 years of age he has lived with a constant cloud above his head, waiting for the other shoe to drop; never knowing when the next seizure might come and throw off whatever he’s doing. For those who don’t know Quinn; he is probably the most generous and loving person you are ever going to meet. He has an innocence and purity about him that is often long crushed in others by the time they reach adulthood. He would give you the shirt off his back if you needed it and there have been times when he took personal risk to take odd jobs he really wasn’t safe to do so that he could support he and his girlfriend when she was out of work.

When he graduated from high school he tried a number of work settings and often got very good reports from his supervisors, especially those jobs involving customer service and sales. He was often viewed as one of the top sales people they had, but when his seizures eventually reared their ugly heads those same employers lost respect for him and either implied he was faking or they treated him as though he shouldn’t need accommodations for them and ultimately fired him.

There was the time he had a Grand Mal in a factory setting and sprayed adhesive from the automated hose he was using all over the floor, the time he stopped speaking when a lade behind the fish counter at a local grocery store was asking him a question and he could do nothing but stare back at her as she screamed and berated him for his inability to respond. Once he came out of it and regained his speech function he tried to explain it to his boss, who eyed him skeptically and told his that nevertheless this was unacceptable, leaving him a catch-22.

There have been many employers and many scenarios, somethimes he’d have to take the whole day off after waking with an especially brutal Grand Mal or a serious of Complex Partials because of residual disorientation. Unfortunately most employers don’t really get it that this is a valuable employee so one should nurture and accommodate because when he’s on he’s fantastic as an employee, a model one in fact! After many such experiences he finally had to face the fact that this wasn’t working and he had to apply for Social Security Disability.

Quinn-the day after Christmas 2008

Quinn knew that it would require that he re-enter the workforce on a higher level than the entry level he’d been used to working before he could be assured of the respect he deserved in the workplace, so after some brainstorming he decided to enter the Associates Degree Program in Computer Technology at Athens Tech. There were transportation hurdles to overcome because in Athens, GA. where he lives the public bus system is not great and he often had to walk long distances to get to and from schook in-between, but he made it and earned his Associates Degree! Now his dream is to go further and get at least his Bachelors at Southern Polytechnic (which is known for its quality in education in the computer sciences).

Quinn Hugging Carmella

For most of his adult life he has been hindered from living a fully functioning life and was told his condition (referred to as a D-Net; a benign brain tumor made up of excess neural tissue) was inoperable.

He began to believe he’d have to just live with it but then back in June we got word from his doctor (Dr. E.) that there was a new laser surgery technique available that had a higher success rate and lower risk than the traditional re-section surgery which has been Gold standard in the past. Since then he has undergone all sorts of testing (imaging and monitoring) and had his case presented before a committee to determine whether or not he would qualify.

Clinic Building

Until recently Emory referred most patients considering seizure surgery to Augusta. For many years it was the foremost seizure surgery and monitoring center in the state.  I know in recent years they’ve suffered budget cuts, so that could account for why there have been more neurosurgeons coming here to practice.

young-doctor-stumped

Now with depth electrodes in place (a surgery that in and of itseld took about 5 hours) his next step is for them to test the functioning of various brain areas (called Brain Mapping). This involves hooking him up to a machine to see the resulting brain waves as he carries out certain functions (for instance they may ask him to prounce or spell a word, having him calculate simple math, etc, and see what his brain does in response. As we speak we are waiting for the doctor involved in doing this process to arrive and the nurse told me that he may come in either today or tomorrow depending on his schedule. They moved Quinn to a special room yesterday in preparation with certain hook-ups for the added machinery this requires. Now we are just waiting for some word on the doctor’s arrival.

Quinn with head bandaged after depth electrode placement

My assistant and I arrived around 11:00 AM and there was a CNA with the hospital present from earlier this morning. Usually they leave once myself or another relative is in the room as we will be here for awhile. Quinn was in pain and not feeling much like talking but she was going on about some toddlers who were on the news the night before who had climbed the fence and “escaped”. I’m sure although it was somewhat interesting my son wished she would be quiet, as I know how it is when your head is really killing you. Sound can be bothersome, especially after an assault on the brain such as surgery. Yesterday the light coming through the window was hurting his eyes and his head and so I had a tech put a blanket over the blinds and that has helped alot.

I had my “ancient Chinese secret” from a guardian angel in this morning’s coffee and I am grateful for that over the past few weeks given that my condition is still not being treated and this is the only way I have been able to get through the long hours at the hospital with my son. I noticed more stamina and longer stretches between my pain since yesterday. I need to be sure and order more as soon as I can afford it.

Once my son’s brain mapping is complete and they know exactly the parameteers of his seizures and where vital brain functions are located structurally (what areas to avoid) they will have all the data they need to be sure it goes safely!

There’s just one more step after this is complete and that is for the whole group of doctors to agree on his getting the laser surgery. I know Dr. E (his General Neurologist) and Dr. G. (his main Neurosurgeon) are solidly behind his getting it, but apparently they all have to be on board with it. (I’m not even sure how many are involved total, but there are probably 5 or more).

They’ve all agreed so far that as far as getting the required number of seizures on tape he has met that criteria. Now comes the home stretch. If he can get through these last few preliminaries he will be on his way to the possibility of a total cure! This happens in only a small sub-set of patients and the best candidates are those whose seizures are only coming from one spot (such is in his case the tumor).

This is the best case scenario because it is very likely to get rid of all the seizures because they know which piece of tissue to remove and thus eliminate the problem. In Quinn’s case the doctors believe that his Grand Mals are a result of the Complex Partial Seizures, which is another encouraging thing because curing one will cure both types in one! Here he is with head bandaged like turbin. Beneath that is a mass of wires which thread into bolts in his head, concentrated on the left side of his head where the lesion is located.

Quinn with head bandaged after depth electrode placement- image 2

Apparently the D-Net is pretty much the same thing as a hemangioma like Quinn had in his trachea as a baby, and I have on my spine (according to my spinal scan results). This excess tissue with excess vasculature can be genetic and usually is, despite Dr. H’s poo-pooing of the impact genetics might play in some of these medical conditions. It’s close to 2:30 PM and still no word about when the mapping will be taking place. We could hear something on the spur of the moment. Fingers crossed that this next part goes smoothly and that he can move on to have the surgery on Wednesday or Thursday.