So, after two long months of pain and constant badgering of my neurologist, he finally got around to referring me to one of OU Children’s Neurosurgeons. I forgot his exact name, but in the morning I’ll comment it on here if it is relevant. Anyway…
I’m terrified. My appointment is on April 19, which also happens to be my senior prom. Good thing dancing gives me migraines these days I guess, because I have to miss out. Not a huge deal to me anyhow. But what is a huge deal? The possibility that my neurosurgeon will want surgery. Even MORE scary… If he doesn’t. I’ve done nothing but research surgery since the day I was diagnosed, and honestly I think I’m a good candidate for it. Maybe it could help me- that’s what I hope. I know the risks, the possibilities, and the long recovery I’ll be facing, and I have decided that if its offered as an option, I’ll probably go for it. Which scares the heck out of me.
I feel like the life I am living now isn’t really a life. I’m 18. I’m a senior in high school, too ranked, about to go on to college and eventually work as a Physical Therapist Assistant. Yet instead of enjoying my days and having fun, I spend most days suppressing massive pain, and even when I am out with friends, I have to rest often and frequently use them as braces so when an icepick migraine hits, I don’t fall down (my vision/balance totally bottom out for a few seconds). I just want a semi-normal life. I’ve tried rounds of Topamax and Propanolol (originally together, which was a month-long nightmare) and they didn’t help, only hurt. I have a headache quite literally every day at some point, often all day. I get severe, stage 10, knock you flat migraines in clusters every other week or so, with a few scattered between those times. My family doc keeps prescribing me stronger and stronger painkillers, but I have always had a strange intolerance to pain medication. As in, when I have a migraine, NOTHING HELPS, although some things help a little.
Regardless, I’m not sure what I’m more scared of- that he will offer surgery, or that he’ll break the news that I’m stuck this way forever.
I’ve been reading that recovery for someone as young as me goes easier---- I’m hoping that’s the case! As terrifying as the idea is, I think about surgery 24/7. I understand the risks associated with any surgery, and especially this surgery, but I think the benefits outweigh the risks. I’m exhausted, living like this. I believe I would benefit from the surgery. I hope my NS agrees when I meet him. I’m scared. But I think everyone is, facing this; it’s brain surgery, I’d be more worried if the idea didn’t scare me a little! I graduate in 7 weeks. I cannot miss any school (attendance rules at my school) so if I got the surgery immediately after graduation, do you think I’d be well enough for college in the fall?
I just got done reading your story. I have a 15yr old sophomore. She was diagnosed back in January even though she has been having symptoms for about 3 years. Her MRI also shows syrinx. She is scheduled for surgery on April 15. She lives her life very similar to yours. She has headaches everyday and we have found NO medication to help ease her pain. She is struggled with the decision to have surgery until she saw her NS and he said she has no choice. My point to you is that you need to wait and see what he says. There is no sense stressing about it until then. You also said you were worried about missing school. IF you have to have surgery you can do a homebound program. They will send a teacher to your home so you don’t get behind and attendance is not an issue. This is what we have to do for Alyssa. You sound like an intelligent, kind person. You deserve to relax and enjoy what little good days you have. The decision will come soon enough. Don’t stress now. My thoughts and prayers are with you. Let us know what the NS says!
You’re absolutely right- worrying now won’t change anything! I need to remind myself that more. I’ve been concerned about school because while I am saluditorian, and I’ve worked my tail off in school my whole life, I have a principal with a Napoleon complex. Tiny man… Always trying to assert authority just because he can. He doesn’t believe in migraines, and for the past 2 years has been trying to punish me for missing a day here and there when they get bad. Sigh, he really can’t do anything if I have surgery, I’d forgotten about the homebound programs! My school counselor is a total sweetheart who’s been like a second mother to me- I’ll bet she can help me, if it comes to that. For now, I’ll keep managing the pain as best I can, and count down the days until I find out. Is your daughter Alyssa terrified? I know I will be if I ever have to go through that. I’ll be praying it all goes fantastically for her and that she has a speedy recovery— and no more headaches!
First off, tiny men can be crushed!! Second, I want to say a huge congratulations on being Salutatorian . That is awesome and even more amazing since you have accomplished it while going through life in pain most days. Keep up the good work!!
In answer to your question, yes Alyssa is scared. She tries to hide it but she is (who wouldn’t be). However, she has been in so much pain and so sick for so long that she is willing to do whatever she has to in order to get better. Time is winding down and this weekend her team goes to championships. Surgery is a week from Monday so I see her getting nervous the closer it comes.
You both are smart, strong girls. After what you’ve been through, this will be nothing!!!
Sorry to hear about your pain. My daughter's started at 12 and lasted for 2 solid years. Non stop, 24/7. I can relate to your "suppressing" statement: just trying to be there and participate, but it's like living a half life and a tortured one at that. Plus, friends and fam who don't get it and not wanting to dwell on it all the time but simultaneously wanting to only talk about it. She too had a principal who gave her a hard time despite being an honors athlete with a terrible medical issue. Not to mention the endless nutty docs and awful useless appointments...AHHHHHHHH!!!!!
The surgery thing is huge. We wished for it and feared it equally for so many reasons. Left with zero options though, my daughter had it done on Nov. 20th. She still needs more sleep than she can really get and has pain, especially as the week wears on. And, like you, a dance or concert is still as recipe for disaster. On the other hand, SO MUCH OF HER life has been restored. She is pain free now 60% of waking hours vs. 100% and is slowly gets better. She's running track, hanging with peeps, enjoying life, etc,...EVERY SINGLE MOMENT is no longer a battle. Things are going back to normal. So grateful she had it done.
That said, if it were my daughter at 18, facing school in the fall, here's what I'd think:
It would be great to have to summer to rest, rest, rest and heal. It may take a year or more to really get closer to seeing the full outcome of the surgery. Thus, you may still need massive amounts of sleep and have pain freshman year. Especially in the fall and winter. It will likely be NOTHING compared to what you've already lived through though.
I'd maybe think about finding a good massage therapist close to school for the fall and winter. Plus: keep lists of good stretches close by, great head/neck pillows, hot/cold pads, etc,... Plan on not having a huge social life since you'll need SLEEP,...
Grr, smartphone -_-
Just knowing I’m not alone! Even now as I type, my head is pounding and I feel like passing out- but I’m fully intending to enjoy my weekend- I have freshman orientation tomorrow morning! I’ll officially be a college student! I’m going to take all of the advice you all have given me, and work hard on keeping myself healthy (brain aside… Haha) so that if I do have surgery (and it honestly looks like I will be- I hope…) I can have a smooth recovery. My neurologist, who is a total jerk AND none too bright, has been trying to scare me away from seeing the neurosurgeon. He said I can’t trust those doctors, only him, and pills are my only answer, even if they make me sleep 20 hours a day and lose all short term memory. I think I’m a magnet for egocentric tiny men
It makes me so happy to hear that others by age have successfully gone through this and are recovering------ I cannot possibly imagine what it feels like to NOT have a headache every day! It’s been so long since I’ve experienced a pain-free day that I’ve forgotten what it’s like. I hope the surgeon can offer me some relief, even if it means surgery. I’m desperate-- I’d do the surgery today if they offered! I will keep you all posted on what’s going to happen when I find out! Thanks again for being so kind as considerate everyone- it means a lot to me
I am so happy that you feel more hopeful....NL's for me were totally useless...BUT...once I saw the NS I was validated and a plan set into place...my surgery was 4.5 yrs ago..though not 100% , I am better than I was!!! For that, I am forever thankful.
Do you have an appt with a NS yet?? I think you do from your earlier writings..I am just not sure when it is. Have you had a CINE MRI yet?? That tests the CSF flow.
Keep us posted!! Hang in there....There is HOPE......Never let anyone take that away...just b/c they have an MD behind their name, I find, means NOTHING sometimes!!!
Lori, you’re right- I do have a NS appt- April 19. I have not yet had a CINE MRI, although I’ve been reading a ton about csf flow and I think mine isn’t too great- I frequently get sudden, debilitating migraines if I become too active, or if I bend over, or even if I just turn my head the wrong way. I’ve learned the hard way that I can’t shake my head to music and jump around like I used to, unless I feel like going to bed early that day… Lol
