Difficult To Keep A Smile
10 August 2002
I am hoping someone can help with some more information or even share your experience. My husband is 38 and was diagnosed with an AVM 2 years ago. His symptoms were life long "classic migraines". For years none of the migraine meds worked. Finally they did an MRI that discovered the AVM on his left side of the brain.
About 18 months ago he underwent radio-static surgery. (We tried for the gamma knife at the Mayo but they couldn't reach it.) So far they have noticed the AVM shrinking somewhat but his headaches have become intolerable. He has tried various steroids and the spectrum of anti-seizure drugs with no relief. The only drug that helps with the pain is Excedrin (in massive doses) and Percocet, which the docs want him off of. He is supremely depressed and may go on an anti-depressant too.
The docs are now suggesting surgery as a possibility since his pain is incessant, however, due to the location of the AVM, the surgery has approximately 50% risk of losing some peripheral vision. His vision is already experiencing some changes, possibly because of the radiation.
We are looking for any pain management techniques that people may have tried that have worked. (We are waiting to get into a Pain Management Clinic presently.)
I'd also like to hear from any wives who have experienced this dreadful situation and any suggestions they have to help me get through this. We have three young children and often I am so saddened by this situation I find it difficult to keep a smile on my face for them. Fortunately, we do have a strong faith and I am clinging to it. I am truly trying to embrace God's will for my husband and our family but I'm sure you all know how trying that is at times.
Those of you who have posted items, I will keep you in my prayers. It has been helpful to hear other's stories and know that we are not alone.
Update: 5 Nov 2002
One mid-August morning my husband experienced a blinding headache and was trying to get home from work. I was calling him on his cell phone as he was trying to make it home. He was somewhat confused and in a lot of pain and upset as he was experiencing vision loss, about half of his peripheral vision. By the grace of God, I was able to find where he had pulled over and take him to the U of MN emergency room.
Upon arrival they did a CT scan and found he was experiencing significant swelling in his brain, due to the radio-static surgery he had undergone 18 months previously. This was the second bout of swelling he had experienced. In January of 2002, he was on steroids for several months to help control the swelling. At that time, the doctor had reassured us that some swelling after treating his AVM with radiation was normal and that it was only temporary. In April, the MRI showed a decrease in the swelling so they weaned him off the steroids. His headaches have continued to worsen and had done so steadily until the day in August when he experienced the vision loss. The doctor reassured us that the sight would improve as the swelling decreased (which it has, thank God) and once again Michael was put on steroids (8mg Decadrone daily).
Michael still was experiencing changes in his vision such as a small spot that was blank in his peripheral vision and as of late, "phantom images" where he would see a faint image of whatever he was looking at even after he looked away. Since August the headaches have continued to plague him on a daily basis. He was given Zoloft and Serequel to help combat the ensuing depression and began treatment at a Pain Clinic where he was given Oxycontin (40mg daily) and continued with Percocet for pain.
Two weeks ago, October 22nd, I awoke to find Michael barely breathing on the sofa. We had all been combating the "crud" and with three kids, we've had assorted colds, etc. for weeks. Michael had a cold for a couple of weeks but nothing out of the ordinary and the previous evening had a sore throat but okay. Over the course of the night, Michael said he could hear fluid trickling into his lungs. I took him to St. Joseph's ER in St. Paul where he was barely able to breathe. The ruled out a blood clot in his lungs and found that his right lung was completely full of pneumonia. They finally got him stabilized and admitted him to ICU where he was on a respirator for 2 1/2 days. Apparently, the steroids had so compromised his immune system, he contracted a nasty case of pneumococcal pneumonia.
T. In the meantime, (and in my opinion the blessing of this all) a neuro surgeon (Dr. Eric Nussbaum) we had met with two years ago, did a CT to rule out bleeding (fortunately there was none!) When we originally met with him, we opted for radio-surgery because of a 50% risk of losing some peripheral vision with surgery. At this point, the neurosurgeon is recommending surgery to remove the AVM (4cmx4cm in the left occipital lobe) since there is still some swelling which could continue to occur for the next five years and using steroids are no longer an option. I hasten to add, that Michael's quality of life has been so diminished by the chronic pain that any possible vision loss would pale in comparison. In fact, the neurosurgeon thinks that the possible vision deficits that may occur with surgery are already somewhat in motion, hence the changes recently in Michael's vision.
Michael was released from the hospital after seven days and has made a remarkable recovery from the pneumonia. He will be having an angiogram next week to give the neurosurgeon a better idea of what the outcome of surgery will be. Michael will also meet with a Neuro-Opthamologist to find out the field vision cuts. It appears that he will be heading for surgery by the end of the month. We have great confidence in Dr. Nussbaum and feel like God has been leading us to this point. I am at peace with the idea of surgery, since I know first hand that God could have easily taken Michael two weeks ago to ease his suffering once and for all, but He didn't. I trust that God let us keep him and he doesn't want him to suffer any longer either and the surgery that once was the last possible option, is indeed our only option.
I would appreciate it if you could keep Michael and our family in your prayers this coming month. Also, if anyone has had an AVM removed from the left occipital lobe (either after being treated with radio-surgery or gamma knife or not) and has any experiences they would like to share with us or any important questions to ask, I would love to hear from you.
Finally, I was astounded at the amount of responses I received from my initial posting! What a beautiful and supportive family indeed! I want to apologize to those who were kind enough to write me with words of support and kindness, whom I didn't respond to. I kept meaning to respond but my e-mail program deleted many letters I had saved to respond to later. In any case, thank you and God bless you all!
Update: 7 Dec 2002
Shortly after I posted the last update, actually it was almost a week to the day since Michael had come home from the hospital after making a remarkable recovery from pneumococcal pneumonia, he had a seizure. It scared me to death! By the grace of God, my mother had just taken the children out to run errands so they didn't have to witness this terrible event. He was taken to St. Joseph's hospital in St. Paul (a stellar institution!!). He was in the hospital for five days this time.
As I related in my previous update, they were ready to pursue surgery within a month since he could no longer be on the steroids and swelling was still present. As part of the pre-surgery routine, they performed an angiogram while he was in the hospital. It was amazing, miraculous news that they found the AVM (left occipital lobe) had been obliterated. Everyone was stunned, including the neurosurgeons. I don't know why, but I had a sinking feeling that things were still not right. They put him on Dilantin and sent him home.
For a couple of days the following week he didn't have any headaches, a rarity indeed but when he did have headaches he started having a new "aura" white, pulsating flashing lights. We saw a neuro-opthalmologist who noted that Michael had indeed suffered more peripheral vision loss during the past year and a half but he couldn't explain the new type of headache he was experiencing. We had one neurosurgeon tell us operating to remove the dead tissue and AVM would help improve his headaches and that he was starting to experience seizures because of the continued edema in his brain from the radiation. We were in the process of making an appointment at the Mayo when he had another seizure last Sunday. When we got to the hospital and did the CT scan they were alarmed at the amount of swelling that had accumulated in the last month and that operating to remove the dead tissue and AVM will provide some space for the swelling to go, thus, hopefully, improving his headaches and vision problems. Of course, there is a good possibility that Michael can suffer some permanent vision loss because of the surgery but given the amount of swelling, we both believe surgery is the last and only option left.
Michael will undergo surgery Monday, December 9th. We have tremendous faith in our neurosurgeon and facility but also know that the outcome is in God's hands. I am so tired of seeing my husband and best friend suffer, I am just trusting that this is the right thing to do and he will have some improvement. There are a lot of questions we won't have answers to, such as what will the doctors do if the swelling continues in the future, or what his vision deficit will ultimately be, but I am trusting we'll be led in the right direction no matter what happens. It's been unfortunate that Michael's AVM situation has never been typical from the get-go .
I thank all of you for your prayers and ask you please continue to pray for Michael and our family. I am praying for an early Christmas present, Michael to be home and without pain for the first time in years. God Bless you all!
Update: 20 Dec 2002
I want to thank all of you for your supportive e-mails, kind words and mostly your prayers!! Michael had his surgery on December 9th at St. Joesph's HealthEast Hospital in St. Paul, Minnesota. (For those of you who may not know, St. Joe's is now affiliated with the Barrow's Institute and is a stellar facility. Dr. Eric Nussbaum who performed the surgery is absolutely gifted!) The surgery went very well. He removed the AVM and a lot of necrotic tissue (from the previous radio-static surgery) and some abnormal tissue found near the AVM itself. I am pleased (beaming actually!!) to report that Michael is home and recovering well.
Fortunately, he suffered no additional visual deficits from the surgery although he still has a "blind spot" to the left of his peripheal field that is most likely permanent damage from the radiation. We are praying that the cavity provided by the removal of the AVM and dead tissue will be sufficient to accommodate the swelling that has occurred and will alleviate some of the pressure, seizures and pain Michael's been experiencing.
Unfortunately, Michael is still suffering from terrible "migraine-type" headaches. We are praying that they will subside or at least lessen in severity in the coming months. He continues to do his physical therapy exercises twice a day and is gradually moving around more. He is looking forward to once again being able to throw the football around with the kids (and pick up our chubby 29 pound 16month old!)
I cannot tell you how blessed I feel to have my husband home with the children and I. I got the best Christmas present I've ever received and although our Christmas this year may lack a lot of the "bells and whistles" from years past, this is undoubtedly the most spiritual, meaningful and poignant Christmas I've ever had.
Thank you all for your prayers and may God be with you this Christmas season and always.
Update: 26 January 2005
Dear friends....I have been meaning to write an update for 2 years now, but the day to do it is today.
I guess, as you can all understand, that you just get so caught up in the "day-to-dayness" of life and handling the issues that arise everyday to the best of your ability. In a way, I guess I'm glad I didn't update until now, since during the past years I've experienced so much disappointment, anger, bitterness and frustration that my narratives would have reflected all that and I can see now that I have some perspective and gratitude for God's grace guiding us through it all.
As our narrative ended in December 2002, Michael had brain surgery to remove the necrotic and damaged tissue remaining from the AVM. He survived the surgery without any major eye sight deficits for which we were extremely grateful, since that was a big risk of having the surgery. We were really on cloud 9!
As months continued however, things weren't going the way we expected. About a month and a half after the surgery, Michael woke up to find his vision cut in half, meaning he had a 50% field vision cut. He was so upset he wouldn't tell me for nearly a day. We went to the ER and they did a CT and said all was well and sent him home to contact his neurosurgeon. We called the neurosurgeon who was less than concerned. We finally had our family doctor intervene in an attempt to get some more information from the neuro surgeon, i.e. "Is this permanent?", "Why did this happen now and not right after the surgery?", "Is there anything we can do?" Our family doctor did speak to the neurosurgeon who told us that "Yes, sometimes this can happen. I don't know if it's permanent, but it's likely." I was amazed that since Michael was no longer a surgery candidate that he really had little interest in his situation. I do believe the neurosurgeon is a gifted doctor and I wouldn't let anyone operate on my brain but him, but I guess he wasn't as gifted in the after-care part of his job.
But I digress...Michael then saw a neuro-opthomologist at the U of MN who did numerous tests and confirmed that his field vision cut was permanent and that he probably wouldn't be able to drive again. This was a lot to swallow for us all, but especially Michael. It certainly exacerbated his depression but we were committed to accepting it and moving on. I am happy to say that about a month later, his vision began to slowly improve and he now has his vision back with a few slight deficits that were present prior to the surgery. The moral here (and you will find throughout my narrative) is don't believe everything you hear from doctors!
About the same time Michael was experiencing the changes in his vision, he began to notice his hips, lower back and knees starting to ache. At first we attributed it to the physical therapy exercises he had continued to do at home following the surgery. When the pain continued to worsen, we went to see a rhematologist who ran several blood tests and said it wasn't arthritis but was probably a combination of his recovery and the steroids he had taken for all the edema in his brain. He said it would improve and there really wasn't much to do about it. We accepted this diagnosis for the time being and tried to keep on with our lives (with three kids, life does indeed go on--no matter how you're feeling!)
Michael's headaches also began to worsen. We were told that the surgery would help improve them but probably not eradicate them, again at least we thought it would be better than prior to the surgery. However, his headaches became more painful and on average he would experience 6 to 10 of them a day. With each headache, the pain would be compounded and often by the afternoon he would have to be in bed.
In April 2003, I finally decided enough was enough. I called the Mayo Clinic and literally begged them to get him in to see the neurologist there (Dr. Abram Mokri--a wonderful man and doctor.) When the nurse called me back to tell me he could be seen in 2 months, I broke down and cried and said that i didn't know if he could wait that long. She must have sensed my worry and desperation (well, I guess it was pretty obvious) and called me back later with an appointment the following week. When we met Dr. Mokri he reviewed the tons of MRI's & medical information we brought with us. He patiently sat there with us for almost 2 hours and heard Michael's story from the beginning to end. His impression was that Michael was at the "peak" of the side-effects from the stereo-static radiosurgery and his brain surgery and that things should settle down soon. Yet he referred us to a renowned headache specialist, Dr. Mike Cutrer and also a rhematologist for Michael's joint pain.
Let me just say that Dr. Cutrer has been such a supportive and caring doctor. He assures us he is committed to seeing us through this ordeal until Michael's headaches are improved or hopefully eradicated. Since seeing him regularly, Michael has tried various regimes of meds to try and stop the auras preceeding the headaches, which Dr. Cutrer believes will stop the resulting headache. So in the past 2 years we've tried various doses of Depakote, Neurontin and some others I can't remember. One praise I have for this doctor is that he doesn't immediately give up on a medication until it's been tried to it's fullest level, so when we do cross it off the list, we know we've truly given it a chance to work. As of yet, nothing has really helped in stopping his headaches but he is currently being titrated up on doses of Lamictal. Fortunately, Michael is still being treated by the Pain Clinic at the U of MN to manage the pain he experiences.
When we met with the rhematologist at the Mayo, she ran a course of blood work that revealed nothing out of the ordinary. She told him to continue the exercises and if things didn't improve in a couple months to call her, but she was pretty confident that they would. Well they didn't! In the course of reading narratives on this website, I came across a narrative by Lucy Holland in England who had experienced the same joint pain as Michael and she had also been on steroids for an extended period of time. I e-mailed her and told her about Michael and she said to insist on getting an MRI to rule out osteo-necrosis from the steroids. When we returned to the rhematologist I did just that.
The doctor was quite patronizing and said she was sure it wasn't that because Michael was so young, etc. but she finally relented and ordered the MRI. I did feel sorry for her when she had to inform us that Michael did indeed have osteo-necrosis in his knees and hips. I pray she learned a lesson to listen better to her patients and not be quite so confident in her initial diagnosis. We were overjoyed to finally have an answer.
We made an appointment in St. Paul with the cities top Orthopedic Doctor. Fortunately for Michael, the disease is not severe enough at this point to warrant a hip or knee replacement and that it is still possible for the bones to regenerate new cells to replace the damaged cells. Michael continues to see him for check-ups, but I'm happy to report things have not worsened and the pain in those joints has improved a little. We'll just need to continue to have MRI's and X-rays periodically to confirm the status, but as of now, the doctor is very optimistic it will improve on its own!
At this point (Late Spring/Summer 2003) we were feeling like we had things under control. Michael was able to drive again with the doctor's approval and a limited license (no freeways, night driving or over 50 mph). It really gave him a sense of freedom and improved his spirits immensely. He was able to bring the kids to school, pick up his meds, go to Home Depot, etc. Although the headaches continued to be debilitating at times, we felt like we were on the right track and perhaps at last, we were moving forward.
In the fall of 2003, we experienced another set-back. Michael had a grand-mal seizure. The paramedics came and back to the ER he went. This was indeed a shock, since he was on Dilantin and Depakote at the time. The levels taken at the hospital showed that he was quite low on the Dilantin and that he metabolizes it very quickly. Once again, Michael lost his license but we thought this was just a temporary set-back. The doctors upped his Dilantin and sent him home. He was just nearing the 6 month waiting period to get his license back when he had another seizure (April 2004). This time the levels showed they were just a little on the low side. They upped his Dilantin again.
When we met with Dr. Cutrer we were hoping for some answers, but again, just like the way this whole journey started, answers don't come easy or at all sometimes. Dr. Cutrer was sympathetic and explained that due to all the irritation and damage done to that area in his brain, he will always be a candidate for seizures. He said his focus is now on controlling the seizures first since he can't afford to keep having these seizures since he has "neurons hanging by a thread in that area." He still hopes to help stop or improve the headaches but made it very clear that the seizures are now the primary concern.
We were dejected to say the least and Michael's depression grew worse. He had tried pretty much every kind of anti-depressant out there but none seemed to be helping. We had a pretty uneventful summer until August when he had another grand-mal seizure. Again we were told the med levels were fine. I truly wanted an answer other than what we'd been told. It has been my/our struggle to accept the way things are. My mom always tells me (in a sympathetic way), "It is what it is." I keep telling myself that and that life can still be good, just different. Yet accepting things that you don't like or want to accept is a challenge for me. I do believe that is a challenge God has set forth for me to learn. I have always prayed for Him to mold me like clay into whatever I'm supposed to become by experiencing this journey, yet when the clay starts to get smooshed into that form I often resist it.
In November 2004, Michael experienced yet another seizure. Again, the levels were fine and the doctor reassured us that this is "to be expected" although he will continue to try new meds to lessen the frequency of the seizures. This has been a concern since instead of the frequency decreasing, they seem to be increasing and occur is closer time spans. This brings me to right now.
It's been 3 months now since his last seizure and although I'm holding my breath, I'm feeling really positive about things. I know what to do if he has another one, as do our kids. The past few weeks Michael has made Herculian efforts to participate in family activities even if he's not feeling well. He seems to have made some sort of acceptance with the whole situation, and maybe I have too. He will see a psychiatrist next month to investigate some new anti-depressant meds to help with the depression and he is eager and optimistic that they will find something to help him with this.
Meanwhile, as I write this, it is a cold, snowy day in Minnesota with the sun just peeking out from the clouds. I hear Michael downstairs playing his drums (one of his favorite pasttimes that he's starting to do again) and our little Gracie is laughing at something in the living room. In a few minutes the older kids will be home and our house will be bustling with school news, homework and various sibling rivalry. I am so glad today was the day to share the story of our last two years. I am grateful for how good things have been recently, but am also gonna be okay if another crisis arises.
My heart aches for those who have experienced or are experiencing the devastation this illness can cause, not to mention the repercussions that result over time. Words will never fully convey the gratitude we have for your prayers and support--thank you! You are all in our prayers and I wish you all a blessed New Year!
Discussion, comments, or questions: Mary Marshall
© Copyright 2002 Mary Marshall
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