Child In Pain: Survivor's Guilt?

Tuesday, April 10, 2012

Survivor's Guilt?

Harriet continues to improve at an astonishing rate! She still has pain, but here are some of the things that have happened in the past two weeks:

1. She's driving again. (Exciting progress in terms of her pain, but it is also like being driven around town by someone who is trying to kill me.)

2. She has applied for a couple of summer jobs.

3. She is doing (some) schoolwork, on her own, no prodding from me.

4. She is helping out with Gunny the Magnificent Chewing Puppy and has decided she wants to train him to be a therapy dog so she can help other people.

All of this is fantastic, miraculous, joyful, hopeful as we watch her heal and look forward to a pain-free day for her sometime in the future. It really seems possible now!

And then... THEN... I feel guilty. I feel awful when I tell another Pain Parent about Harriet's progress. Because I remember that I was happy for other Pain Parents when their kids got well, but my heart tore open as I wondered, "Why not MY kid?" So here I am on the other, happier side of that equation and it is tearing me up. Is this some kind of survivor's guilt? Am I being silly or hypersensitive? I just can't decide.

What do you think? Is it encouraging to hear that someone else is healing when your child is still hurting? Or does it make you feel worse?

3 comments:

DavidJanuary 8, 2014 at 11:55 AM
Melissa, thank you so much for the update. I was hopeful you might have another update now that you're even further down the road from surgurery? My wife too is a chronic migraine sufferer and is definitely considering decrompression... Any thoughts/advice you'd offer now that you're nearly 2 years removed from the procedure?
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MelissaJanuary 8, 2014 at 8:16 PM
David, I'm so sorry to hear that your wife is suffering. Chronic pain of any kind is exhausting and soul-stealing, and I know for you it is just as horrible to see her in pain.

Harriet is doing very well. She continued to improve for maybe 8 months after the surgery. By that time, she only had the migraine-like pain in her forehead - a site the surgeon did not work on. So, about a year after surgery #1, she had the forehead nerves decompressed. The recovery from surgery #2 was a walk in the park compared to the first one - she felt great within a couple of weeks.

Fast forward to today: Harriet is back in school (on track to graduate on time, we hope), has a job and a boyfriend (!), plays her music too loud, runs around with her friends and is currently on a mission trip in another country. Before the first surgery, she couldn't tolerate a trip to the grocery store, much less international travel. She still has a little pain but takes no prescription pain medications. After life at a 9/10 all the time, a 3 is no big deal to her. The surgeon is considering a stem cell injection in her forehead to help this last level of pain, so we may try that. Still deciding...

Would we do it again? In a heartbeat. Surgery is not for everyone, but if nothing else is working and the pain is stealing your life, surgery looks pretty darn good. Nerve decompression surgery gave my daughter her life back, and it gave me my kid back. Last May, she got into a fender bender on prom night and all I could think was, "Yes! She's well enough to wreck her dad's car!" (For the record, Hubs had a slightly different take on the situation.)

My advice would be to get evaluated by an experienced nerve decompression surgeon. More of these surgeons are practicing around the country than there were a couple of years ago, so it is getting easier to find this kind of help. I emphasize "experienced" because every case is unique and I believe you're in better hands with a surgeon who has been at this for a while. Good luck and best wishes to you and your wife!
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Timeline: My Child's Pain

July 17, 2010: Harriet got a migraine – pain, light and sound sensitivity, nausea, the whole shooting match. She’s had them a few times before, so no worries – we just gave her her meds and put her to bed. But it didn’t work this time. Before the month is out, we’ll go to her doctor twice and the emergency room once, complete an MRI and bloodwork, and we’ll start chiropractic care.

August 2010: Still trying different meds and Harriet has to drop out of cross country. Another trip to the ER.

September 2010: Local neurologist has “tried everything,” including various meds as well as trigger point injections. Harriet is referred to a pediatric headache specialist.

October 2010: We give up on chiropractic, which only seems to be making things worse. Pediatric neurologist tries different meds and sets Harriet up with a pain psychologist and biofeedback. Bloodwork shows a CoQ10 deficiency.

November 2010: The migraine is worse than ever. A one-week hospitalization with meds that make Harriet throw up every 6 hours help her pain very little. By now, side effects from meds have made her lose about 20 pounds, and she was slender to begin with. We worry about her weight but continue to try everything the doctors recommend.

December 2010: We see a neuromuscular dentist, who diagnoses TMJ and recommends a $5000 dental orthotic that he says will help, so we get Harriet fitted for that. She mourns the fact that she can’t be on the basketball team this year.

January 2011: Small improvement with the dental orthotic, but not enough to improve Harriet’s quality of life. School is a struggle. Revolving door of meds gives Harriet terrible side effects, including panic attacks.

February 2011: Headache is getting worse again. Lots of missed school. We’re getting adjustments to the dental orthotic every two weeks.

March 2011: Harriet is frantic with pain. The pediatric neurologist admits her to the hospital again. A spinal tap shows nothing out of the ordinary. Five days in the hospital and nothing works. Another pediatric neurologist examines Harriet for less than 5 minutes and says, “There’s nothing left for you but psychiatry.” Harriet is inconsolable that there is no hope. They discharge her from the hospital with her pain at a 10 on the 0-10 pain scale, with no recommendations for what to do now. We decide to try going to Diamond Headache Clinic.

April 2011: A full week in the hospital in Chicago with the Diamond Headache Clinic. No new diagnostic tests, although bloodwork shows mild anemia. Harriet’s pain goes from a 10 to an 8. DHC puts her on an MAOI, which comes with all kinds of restrictions for diet and other meds that can have life-threatening interactions. We start cranio-sacral physical therapy to help with the muscle pain in Harriet’s neck, back and shoulders.

May-August 2011: No real improvement in pain, but the MAOI is making Harriet gain 10 pounds a month. She is stressing out about her weight and has stopped sleeping altogether. She stays up around the clock most days. Counseling helps us all deal with the stress of chronic illness. The one bright spot is physical therapy, which is really helping her muscle pain.

September 2011: Harriet is switched to a different MAOI, which resolves the sleep problems but the weight gain continues. No improvement in her pain. Our doctor leaves the practice at Diamond Headache Clinic so we wait to see a new one there in October

October 2011: We meet the new DHC doc: Dr. Personality. Her first question is, “How is the depression?” It goes downhill from there. At our insistence, Harriet is taken off of the MAOI. By now she has gained almost 60 pounds with no improvement in her pain, so why keep on this path? On our own, we take Harriet to an ENT, who says her “migraine” really sounds like occipital neuralgia to him. He does a nerve block in his office that gives Harriet the most relief she’s had since this started. ENT orders an MRI of Harriet’s sinuses and neck, and refers us to a local pain management doctor.

November 2011: Pain management doctor agrees with the occipital neuralgia (ON) diagnosis and does a more precise nerve block. More relief for Harriet. We start researching ON and find out about nerve decompression surgery. Dr. Personality scoffs at the idea of decompression surgery, saying it’s “too soon” … when Harriet has been in pain for well over a year. We ignore Dr. Personality and schedule a consult with Dr. Fancypants, a plastic surgeon who does decompression surgery, to see if Harriet is a candidate. We’ve stopped all meds except a muscle relaxer and Harriet is less of a zombie now.

December 2011: Another visit to Dr. Personality, who again asks about depression. When asked why she keeps bringing that up, she says, “Well… Harriet seems quiet.” We remind her that Harriet HAS A MIGRAINE. Undeterred, Dr. Personality wants to re-try antidepressant meds, and we refuse. We don’t schedule another appointment with Dr. Personality, and we go see Dr. Fancypants for our consult. He is wonderful, his nurse is wonderful, and he recommends nerve decompression surgery as well as sinus surgery. Harriet seems hopeful and encouraged for the first time in months and months. We hold our breath to see what the insurance company says.

January 2012: To our joyous surprise, our insurance authorizes coverage of Harriet’s surgery.

More updates to come…