A personal account of my dealings with progressive multiple sclerosis. And my battle with trigeminal neuralgia and the brain surgery that stopped the pain!

Monday, August 18, 2008

My road to brain surgery and more

Around the year 2000 I began experiencing episodes of itching in my left ear canal.

Really at the beginning that was all there was to it. And this sensation (like a hair was inside of my ear canal.. or more irritating a daddy long legs) was not intolerable. Just annoying and a bit weird to contend with. Thankfully my pinky finger nail was fairly long and I could scratch at my itchy ear when ever I needed to. However the scratching did not help the itch.

This would bother me off and on for a week or two and then disappear for sometimes months. Yet, when it returned it was always more intense and seemed to build from an itch into rather painful jabs within a few days.

Ultimately I sought the advice of a dear friend who is a nurse practitioner. She initially thought that my ear canal might be inflamed. Either due to some external bacteria or maybe just from my scratching. So she prescribed some anti inflammatory medication. I thought this helped because within days the sensation was gone.

Yet, again it returned within a month or two. And this time I called her and told her that this was really causing me discomfort. I had already begun wearing plugs when washing my hair, thinking that the water in my ears was causing swimmers ear or something.

We tried antibiotic drops. We tried sweet oil drops. I visited a local health food store and tried (that is not me.. but that is what I was doing with the candeling) So glad we did not burn the house down trying this dangerous trick!

After several visits with my friend *maybe a year or more later.. remember I would have months of remission in between times of pain*, she said that because we'd been treating a condition that has been chronically returning and worsening, that I should see an EarNoseThroat Dr. Yet she said she would not be surprised if they later referred me to a Neurologist. Because she felt this condition I was experiencing may be originating from my brain! Yet first things first.. I'd see an ENT.

My friend also explained to me that she was thinking that I might have a rare condition called trigeminal neuralgia. No way I could spell or pronounce this term.. I had never heard of it! She said that even though this was a diagnosis that would have to be dealt with for my entire life that there was good news; she said it is very treatable with anti seizure medication.

Wow.. Of course I did my share of interenet searches on TN while awaiting my appointment with the ENT. I honestly did not think my situation was like the horriffic condition that I was reading about. Often said to be the worst pain known to mankind. Yet everything I read described it as being jabs to the face. This was my ear!

I think I had to wait month or so to see the ENT. By then I had experienced another episode which really was much more painful. I wasn't sure if this was due to my studing the condition or what. But I was becoming rather frightened.

The ENT Dr. ruled out ear, nose, and/or throat problems. She said that this seemed like a condition called trigeminal neuralgia (wow my friend was right) and that although she could diagnose the condition, it needed to be treated by a Neurologist. But that treatment with anti seizure medication normally stopped the episodes of pain.

It was a long wait to see the Neurologist. But once I did he diagnosed the TN. He put me on an anti seizure medication. He ordered an MRI to rule out causes for this TN. He told me that often there was no cause. But due to the fact that I was only in my mid 40's and most TN was found in older folks, he needed to rule out serious things like MS or brain tumors.

The anti seizure medication made me really sleepy. But at first it really did stop the TN in its tracks.

When laying in the MRI tube I felt a profound impression from God that things would be found out from this test that would change my path in life forever. I prayed that it would not be brain cancer. As my husband's dear friend had just died from a long battle with brain cancer. I really knew nothing about MS.

I am not going into the MS details on this post because I have plenty posted about how I found out I had MS and its progression on my blog with MSIF.

But I did find out that I had multiple sclerosis soon after the MRI.

That was huge and life changing. Yet, the Trigeminal Neuralgia episodes I was enduring were becomming less responsive to the anti seizure medications. I switched between several different types. Sometimes my dosage was increased to the point that I was rendered nearly disabled from the side effects. We honestly thought in the first year after my TN/MS diagnosis that my MS was progressing out of control. Other medications proved impossible for me to tolerate. Some made me immediately very very ill. Like you have the flu. I hated them. And others did not help the pain. Others helped only when the doses were increased to the point that I was listless and felt like a zombie. They also made me really dizzy. I was a school bus driver and had to give that up.

Somewhere in my interenet searches during this time I met a young man on a TN message board who encouraged me to come to a support group meeting for TN that he was hosting in Kentucky. He said a Neuro Surgeon was going to be there to discuss surgical treatments for trigeminal neuralgia. I will always be glad I went.

Because besides giving me a great understanding of the surgical interventions for TN. He also answered a very important question for me. All the things I had been reading suggessted that TN associated with MS did not respond to any type of surgical treatments. But this Physician said that if my TN symptoms were "typical" TN rather than the more common atypical TN that folks experienced who had TN as a symptom of their MS.. then my chances of being helped by the surgery were the same as for someone who did not have MS.

I also learned that the MVD surgery was statistcally the most successful surgical intrevention for TN. And the only surgical option that was not distructive to the trigeminal nerve.

So I kept this Dr.s card and continued with my life. Adjusting to the diagnosis of MS and continuing to deal with increasingly painful and frequent episodes of trigeminal neuralgia.

Once the decision had been made, the neurosurgeon consulted, and the surgery date scheduled, my thoughts often drove me to near hysterics. I would think of the common phrase “I am having surgery – but it will be okay – It’s NOT BRAIN Surgery”. And of course my decision to undergo surgical intervention for the monstrously painful jabs of trigeminal neuralgia was indeed going to be brain surgery! This was the most frightening immediate future that I had ever considered. Thankfully the time between my decision to endure the MVD surgery and the actually operating day was only a little less than two weeks!

I had learned that this option was available for some people who met certain medical criteria, fairly soon after my diagnosis of trigeminal neuralgia, which I must add ultimately lead to my being diagnosed with multiple sclerosis. Yet at the time my thought was that however great the success rate for this procedure, I would not consider such an option unless every other means of controlling the pain had failed.

Only three years after being diagnosed I found myself calling the Physician’s Office for a consultation visit to see if my particular case of TN (including the fact that I had MS) might meet the criteria to benefit from MVD. I had already studied and studied the risks and the odds of success.

I tended to only endure the episodes of these incapacitating pain attacks two or three times per year. But the episodes would last weeks before going into complete remission for several months. I had been on anti-seizure medications pretty much the entire time since diagnosis, often increasing the dosages drastically when enduring an episode of these “jabs from hell”. I had tried at least 6 different medications to deal with my trigeminal neuralgia. Several I could not tolerate even for a few days because the side effects were very toxic for me. Other medications left me continually tired, and dizzy, and generally took myself as I’ve always enjoyed life away from me. I was slow moving slow thinking and much diminished on these drugs. Quite a trade off! Because even with medications the painful jabs were never completely eased during an episode. The only way I found I could deal with the TN was to do the anti-seizure meds along with antispasmodic drugs and nerve pills to calm the anxiety. During the worst of times I also took sleeping pills to try and get to sleep. For the complete dread of the next “jab” was paralyzing. The anti-seizure drugs are the only approved drugs to deal with this kind of pain. Good response from narcotic type drugs is rarely found with TN. And these anti-seizure drugs must be maintained at a certain level in your blood stream to be effective. Which meant keeping on the drugs to some degree even during the months of remission. Having to deal with the unpleasant side effects all the time, I saw my only way out to be that of surgery. Trigeminal Neuralgia tends to progress in intensity and frequency as the years pass by. I could not imagine the pain being more intense and actually surviving.

My last bout of TN lasted from mid August until the end of September 2006. By mid October I was making the call to the University Hospital doctor (out of state) that I had heard speak at a seminar 3 years earlier.

My first encouraging sign was that this doctor and the Hospital where he practiced were considered “in network” with my insurance company! So my appointment was made for Nov 9th. From the time that the appointment was scheduled until the day I saw the neurosurgeon I was diligently praying and doing my homework, putting together a multi-page questionnaire.

My husband and 85 year old Mother made the trip for the consultation visit along with me. After extensively questioning me the doctor said that I was indeed a candidate for MVD surgery. He felt very encouraged that I would wake and very likely never endure pain from trigeminal neuralgia again. I was checking through my questions to ignore topics that he had already addressed when he actually kindly took my papers and went through them one by one, even the things already discussed. He did not present this surgery as risk free. First, there are risks associated with any surgery with a general anesthetic. And second, there are possible complications from this particular procedure. Most present was the possibility of a CFS leak. Then the fact that the trigeminal nerve is very near the cranial nerve that allows hearing on the side of the brain that he would be working on. And the remote, yet awesome possibilities of brain injury, stroke, paralysis, and even death. He shared the percentages of complications and successes that he has had when doing this procedure. He said that this would require about a half a day in surgery and then one night in ICU and after that 2-4 more days in the hospital. Recovery pretty much in a month but the surgery tended to leave people with some fatigue for quite a few weeks after.

He said that this surgery was not particularly painful and that there would be IV narcotics while in the hospital and that most people went home with a simple prescription for lortab.

There are less invasive surgical procedures for dealing with TN, but they are all destructive to the nerve in one way or another. The MVD surgery is done to preserve and protect the nerve. TN pain is most often caused by a vessel compressing a branch of the trigeminal nerve. MVD seeks to find the compression, move the vessel out of the way, and then they pad the nerve. He told me that he used a Dacron felt type material to pad the nerve. This was good to know because the material I had learned about was Teflon and the problem of slippage was sometimes causing a successful decompression to later fail when the Teflon slipped or moved. The Dacron material was in no way slippery. He described it like Velcro. He said that within just a few weeks my body would have also “scared” it into place.

I did not want to damage the nerve and have the possibility of being numb or in continual pain of any sort. MVD seemed for me the only surgical option. And although surgery was invasive and carried risks, a lifetime of anti-seizure medications and the side effects involved seemed to me a more chronically invasive option.

So, I was sent to the hospital radiology dept for a high tech/thin cut MRI. The doctor wanted to see if the vessel could be seen on radiology and more so wanted to rule out any other physical reason for my TN pain. If this were caused by an MS lesion I would not be a candidate. However I already knew that TN associated with MS was not so typical of the TN I endured. TN associated with MS tends to be more constant dull pain and includes numbness etc. It also is often felt on both sides of the face.

While in the MRI tube my husband was scheduling my surgery. I was rather taken back when they told me that it was scheduled for just a little less than two weeks away! November 22nd. The day before Thanksgiving!

I came home sure of my decision. But once I got home and began planning I also became very terrified of the potential risks etc. I so dreaded the surgery. I wanted the outcome.. but not the experience. I was indeed afraid. I woke my husband a couple of nights in a state of sheer panic saying “I just cannot do this!”

My Neurologist in town who has treated my Multiple Sclerosis symptoms and Trigeminal Neuralgia medications for the past three years was not overly encouraging. I remembered him saying when I had a visit a week before the scheduled surgery “what if the TN pain never returns without the surgery”. I know that his schooling was not to deal with this condition surgically. I honestly believe that he was concerned for my well-being. He told me about a patient of his who benefited from a surgically implanted device that sends electrical currents when one has TN pain jolts. He said this patient was on considerably less anti seizure medication. And that this was a much less invasive surgery. So the fact that this was a decision that I was making was hard.

But, with prayer and actually re-listening to the audio tape I’d made of the doctor's consultation visit, I was able to remind myself that this doctor was completely confident and that this was the right decision for me.

We got to the hospital the day before surgery for blood work and an EKG and chest x-ray, plus tons of pre-op questions. We took copies of my living will and my desire to make my husband my power of attorney. This was an extremely emotional and exhausting day for both of us.

That evening my Mother, sister and two adult sons came down. I was terribly concerned about leaving my family for 4-5 hours in fear. So I fasted and prayed the entire day before. I just wanted to sleep well the night before and awake the day of surgery in peace. For the sake of my family I wanted to go to surgery in peace. I somehow felt responsible for their emotional well being during my surgery. My prayers were divinely answered. I slept like a baby and woke at 4:30 am with a 5:30 arrival appointment in complete peace. It was surreal. I still very much dreaded what I would have to endure, but I was not afraid in the least.

I teased my family telling them that what had kept me going was a plan that I was not yet committed to this surgery. My fantasy was to run away from the surgical holding area, cause a huge media frenzy and then show up a week later having written a book titled “NO HOLE IN MY HEAD”. Then I would have gotten out of the actual surgery with the bonus of being rich and famous! Apparently some hospital folks heard me discussing this plan with my family because when I ask to get up with my IV and use the rest room there was some hesitancy. I just told them that it would be all the more sensational with a blood trail from my pulled out IV!

Then one more thing I want to mention before the post surgery details. This was a teaching hospital. So the two hour wait between showing up at the hospital and the actual move to the operating room was filled with seemingly tons of doctors and nurses stopping by and asking me the same questions over and over again. I mostly remember being ask if I knew what I procedure I was having done and if I could describe it to them. A neurosurgery resident drew with a marker a line of incision behind my ear on my scalp. Everyone went over things I could expect etc. I turned to my husband and said “I wish I could see a Christian right now… I know you are a Christian.. but I just need Christians ”. Immediately a small black woman pulled the curtain back to my cubical. She said with a very beautiful smile “ How are we doing this morning”… and some how I knew immediately that she was a Christian. And I ask her if she was and she said “Of course.. God sent me to tell you that He loves you and that everything is going to be alright”. WOW I told her that I had just prayed for a Christian.. and she said.. I know… He knows! I will never forget her comforting words and smile. If it had not been for my husband being at my side I would be sure I’d dreamed the entire thing. I will always wonder if she was an angel.

BRAIN SURGERY

I don’t remember much at all from the operating room. I do not recall seeing my doctor there. I do remember commenting on how small the room seemed and I remember being told that these people worked well together in small spaces! They were trying to make light and being kind. I also think I remember seeing my MRI’s on the walls around me. That is it!

Before when I’d done my homework in preparation, I had found an actual manual including tests for Physicians who were learning this surgical technique. It was honestly more information that I had needed to know. I knew exactly how much precision they would take in positioning my body on my right side. I knew where I’d be taped. I knew that screws would be placed in at least three points on my skull so I could be placed into a “halo” type vice grip to keep my head completely unmovable. I had previously been really anxious about all of these things. But in the operating room I remained in perfect peace, having no concern for the things that were going to soon be happening to me.

I woke in what seemed like minutes. My neck hurt terribly… my head hurt… my eye hurt. I was nauseated. I hurt where an arterial IV was inserted. I had bladder spasms with the foley catheter. But it was over and I knew I could get through this postoperative time and recover. I was told very quickly that the doctor had come out and told my family that he found exactly what he was looking for and that he was able to fix it. All went well!

Surgery was longer than expected, 5 ½ hours. Apparently my vascular anatomy was such that it took a bit longer to get to the trigeminal nerve. But as my doctor told my family after surgery, he saw an artery compressing the underside of the nerve, just where he suspected from the verbal account of my pain. And he also saw the actual compression bounce back to good anatomical shape after lifting off the offending artery. He then padded the entire nerve branch. He also checked the cranial nerve that is used by the ear as the epicenter of my pain was in my ear canal rather than my face.

I stayed In the ICU for 3 days but actually had orders to move to the floor in just 1 day. But with the Thanksgiving holiday the hospital census was low and some units were closed. So a bed could not be found. I honestly did not care where I was staying at that time. The first 24 hours were particularly rough because of the nausea I had from anesthetic. And the fact that I was completely unable to sleep. I wasn’t sure if that was from the discomfort I was in or the fact that I had received IV steroids to keep inflammation down. But the time crawled. I so wanted to just get some time behind me so I could begin feeling better. I could not eat or drink without the nausea getting me. Ultimately they found a stronger anti-nausea medication that worked for me. Part of my discomfort had nothing to do with the actual surgery. I was just so entirely sore from being in bed so long and likely from the positioning during surgery. I felt I couldn’t turn my neck.

I had planned to write an account of my surgery to post online, as during my pre-operative search I tended to only see traumatic accounts. I made my husband promise to take my picture right out of surgery! I wanted to post an account that might be realistic and yet encouraging for someone else planning this surgery.

Some kind doctor removed the arterial line late the first night after surgery.. this was a relief. The next morning I got the catheter out. I am prone to bladder spasms upon occasion and they were just terrible and once I remembered to ask for valium I found relief. When the catheter was out I began getting out of bed to walk with assistance to the little bathroom in my ICU cubicle.

My family came in every couple of hours. I sometimes wished they could leave so I could just “be” without trying to “be okay” for anyone. I worked hard to be encouraging to them when they were in my room.

By day three I was eating and drinking some. I was moving my head around much easier. The pain in my eye diminished.

Day four I moved to the regular neurological post-surgical unit. I was up and about by then. Even walking the halls with my husband, but I honestly don’t remember this time very much.

I was completely blessed with a visit from a fellow from the TNA, person who also had gone through successful MVD surgery. He was stopping by on his way to visit family for Thanksgiving. He was a great encouragement to my family and myself. I will never forget his visit. I hope to do the same for someone someday.

On day five I was released from the hospital! The plan was to return in 1 month for a post op visit. And to have my sutures removed by a Physician in my home city in 10 days.



The ride home was 3+ hours. I honestly have no memories of it. I have asked my husband if we stopped and he said yes.. he walked me to the bathroom at a rest stop and that I did very well. I ask if I talked at all going home and he said no I pretty much slept.

I remember surprising people at home by how well I was. I experienced an ache in my head and neck off and on for 2-3 weeks. But it was a dull ache not severe at all. I found later that I would feel the pain if I’d done too much, so I used it as a monitor of my activity level.

I did not go out for a month, mainly due to the fact that it was the height of flu season around here and I absolutely did not want to contact a bug. Sneezing or coughing seemed horrifying.

Folks brought meals in and I was doing some cooking within 2-3 weeks. I did not spend the time in bed. However I did spend considerably time on the sofa.

We enjoyed a great Christmas. I had a couple of spells when I was afraid that I might have the dreaded CSF leak. But once it was just a migraine episode that wasn’t responding to migraine meds. (I get a 2-3 day cluster of migraines every once and awhile) I began exercising after Christmas. Someone blessed me with an elliptical trainer and I had a stability ball and some hand weights. I realized very soon that I was not yet ready for the abdominal crunch exercises, and maybe not even the light dumbbells. Because soon after beginning the exercises I had several days of excessive head pain upon bending down and lifting up or straining in anyway. A sneeze caused really awful pain. So I backed off everything except the aerobic exercising assuming that I still had some increased inner cranial swelling. I was just going to listen to my body.

It has been just over two months. I had one episode of what felt like TN pain about 6 weeks after surgery. This was devastating. I went to bed crying and praying. Oddly enough this pain was on the opposite side from where my TN pain had always been. But it has not come back and I wonder if it was just continued healing for the nerve after being so disturbed during surgery. Since my last episode of TN was in August and September, I feel encouraged that I would have already experienced an episode if I had not been “cured”.

I am so glad I made this decision. I know it is not the right decision for everyone. But when I compare my recovery to that of an abdominal hysterectomy several years previously, I must say that the hysterectomy was much more difficult to recover from, more painful and much slower to bounce back from.

The difficult thing was the time before my surgery, when I second guessed my decision. I became terrified at the possible complications that could ensue; I kept thinking that if I had a cancerous tumor the brain surgery option would be completely acceptable. But with trigeminal neuralgia I was concerned that I was doing something irrevocable for a condition that was not constant or life threatening.

The community of people online associated with the Trigeminal Neuralgia Association and the TN-L e-mail list were a great resource of information and direction for me. I also found a helpful site from the Trigeminal Neuralgia association that gave people places to post their experiences with MVD surgery, and this site included pictures!

I feel pretty much 100% recovered. Honestly I feel better than I have for a long time, just for the fact that I am not dealing with the effects of anti seizure medications.

My advice:

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Pray Pray and ask to be covered in prayer.
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Do your homework.
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Choose a Surgeon who does MVD surgery’s routinely. Find out his percentages of complications etc.
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Make sure that your Surgeon is careful to prove that you are a candidate and would not operate otherwise. Talk to other patients that they have operated on.

My Surgeon and myself:



And then pray some more.

I hope this story helps you with your decision.

This is not easy

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About Me

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Love Jesus! Mac Enthusiast! Love all things tech!

Married to high school sweetheart for 42 years! 
Multiple Sclerosis tries to get me down. 
Previous Trigeminal Neuralgia sufferer-successful MVD in Nov of 2006. 
Mother of 2 grown sons. GrandMother
Gardener, Twittering Lady.
Podcast lover. Previous fitness instructor.. previous Childbirth educator, previous school bus driver, previous racewalker.

Lots of previous.. but unending future! Gifts: encouragement, helps, discernment. Lover of People.

Recently my youngest son 33yrs old- (now 37)  was  diagnosed with early onset Parkinson's disease- this is the toughest road yet. But by God's divine hand- we'll survive. 


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I am exceedingly humbled that He knows me by name and actually died that I might live. And then He sought me out! This is joy unspeakable.

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Did I mention that I had an uncle named Steve ?